Sunday 10/22/2017
I am going to start this new blog with the full text of my book on the cure for ulcerative colitis.
The Doctor Said What - One Man's Victory Over Ulcerative Colitis
Hello,
my name is Don Makowski and I have decided to share my story to help others
understand Ulcerative Colitis and to help those of you who have bowel problems.
I am cured now!!! I cured myself with home fecal transplant therapy. You will
find my complete experience in this book. I no longer have any symptoms of UC.
The problem with home fecal transplantation is that you have to be very
desperate before you can go through with it. I urge you to take care of this
before the inflammation gets that bad. You can avoid so much pain and
suffering. I offer my story with this in mind.
My
experience with the medical community has left some serious scars. I do not
carry medical insurance now because I see the system as corrupt. When you have
insurance they see you as a dollar sign. There is this idea in the medical
community that we are defective human beings and that our immune systems are
the problem. This is a lie! Our immune systems protect and warn us of problems.
If we suppress this system we are inviting trouble.
Ulcerative
Colitis exists in my family. Why? It's related to the gut bacteria that we all
share and also to our environment and lifestyle. I lost an Aunt to this
condition, I have an Uncle, Cousin and Nephew who have had colostomies. I have
a younger brother who is on Imuran. This is definitely in the family but that
doesn't mean we have defective genes. Fecal transplant therapy has been known
about since the fourth century in China! Why has it been lost? Most holistic
medicine has been lost since the formation of the AMA in 1847. That's another
story and a sad one that I urge you to look into.
A
for-profit medical system cannot be trusted. There is no profit in curing
sickness; there is no profit in death. There is only profit in keeping people
sick. It's shameful but true. I wish you the best of health and hope you can
benefit from my story. I also hope that someday the system will change. The
internet is a powerful and valuable tool in making this change. Don't just
accept what the doctors tell you! Investigate it for yourself. I know it's
difficult but I can tell you that I am so very, very happy to have my colon
intact. That is a direct result of not giving up and not accepting!
My
health before UC had always been good and I considered myself healthy and
strong. My wife called me the dog because I could eat anything. I stayed fit
and trim, was active, exercised, played musical instruments, sang, and wrote
music. I was happily married and had children and grandchildren. Life was good.
I was employed as an injection mold designer and made a decent living.
Tool
and Die can be a very demanding profession for the toolmakers, owners, and
designers, especially in a small shop environment. I worked at a small tool
shop in Erie, PA when I first started to notice a change in my system. This was
right after the business had seen much success and had moved to a new facility.
I was still healthy and taking daily walks of about a mile long at lunchtime. I
noticed that my butt was starting to itch more and more as I walked. It felt
wet, like it was leaking, and I usually had to go to the bathroom when I got
back. I also noticed that I was going to the bathroom more and that my stools
were looser. No big deal. I could live with it. I was a beer drinker too. I
didn't drink much liquor, only Coors light. I drank a lot of it on weekends but
very little during the week. My wife and I loved to go out drinking and dancing
to live rock music every weekend. We had a blast following the local scene!
I
was a designer at this shop for six years when the owners saw a downturn in
business after 9/11. The pressure started to get to them. I thought that I
would always work for them but this was not to be. I was let go one day and was
absolutely shocked to find myself unemployed. Luckily there was a tool shop
right next door. I had a friend who worked there who told the owners that they
would be crazy to not hire me. They did and I even got a raise! This was a
stressful time but it was ok. I was still ok.
I
had settled into my new position nicely and got along with my new boss, owners,
and fellow employees well. The toolmakers there were very helpful and it was a
good place to work. After I was there a couple years the owners decided to cut
our pay by 10% and to eliminate our overtime. They said they had to do it to
remain competitive with the Chinese. That was a huge hit to take and now I was
worrying about losing my house. I believe that the stress from this situation
was partially responsible for my first flare.
In
the fall of 2006 I released my first CD of original music under the name Dee
Girard (www.deegirard.com). This was an exciting time for me as I had always
wanted to write music. I wrote all the songs, set up a home studio, learned how
to use new digital recording equipment, recorded and engineered, played all the
instruments and sang, added harmonies and did all the editing on this disc. It
was a lot of work and the culmination of a three year project. When my wages
were cut I had to sell off all of my musical equipment to pay my mortgage. This
was very difficult but I had no other options. We had also planned and paid for
a trip to Savannah that summer. About a week before my vacation I started to
notice blood in my stools. My first thoughts were that I had cancer now so I
might as well just keep it to myself and go and enjoy this one last vacation
with my wife before I died. We had a nice time but I was worried and knew I had
to face it soon.
After
returning from vacation things got steadily worse. I had not told anyone and it
was awful keeping this to myself. One Friday afternoon at work I had to go to
the bathroom again. I was going 6-10 times per day at work and I know my fellow
employees and boss were wondering what was going on. I sat down and nothing
came out but bright red blood. I knew this was not going to resolve itself and
it was time to call my family doctor. I made an appointment to see her in a
couple weeks. I thought they would want me to go to the ER or want to see me
right away but they didn't act like it was a big deal. Really weird! After
seeing her and getting the finger probe she told me that there was blood. I
knew that already! That's why I was there for the love of god! She set up an
appointment for me to see a gastroenterologist and said there was nothing else
that could be done at this time. Yup, weird!
I
first saw The G.I.'s physician assistant in the late summer of 2007. She asked
questions about my bowel habits and about my family history. I told her that I
had an aunt that had died of Crohn's disease, an uncle and a cousin who had
colostomy bags, a brother, a sister, and a nephew who were diagnosed with UC. I
thought that my condition was serious but she said nothing needed to be done
yet and that I would need a colonoscopy in about a month. She never asked me
about lifestyle and I never got to see the doctor. I was pretty bad off
at that time but had no idea how bad it was going to get. I was having diarrhea
5-6 times a day and losing weight quickly. Finally the day came for me to do
the bowel prep. What a horrifying experience that was! After having diarrhea so
bad I was now inducing it! I had to stay in the bathroom most of the night and
was screaming in agony. I had the colonoscopy and was sent home with no help. I
thought that was strange since by looking at me you could tell that I was
anemic and looked sick. I called the doctors' office several days later to see
what they could do for me but was told that I had to wait for the results of
the colonoscopy before they could determine a treatment. The receptionist told
me to take some Imodium! The doctor was on vacation! Wow!
I
called my GI again as they still had not spoken to me about the results of my
colonoscopy. He told me that I had Ulcerative Colitis. I would have it for the
rest of my life and that I would always be on medication. I couldn't believe
it! I felt like my life was over. I asked him if there was anything I could do.
Could I change my diet? What about drinking? Should I stop? He was unconcerned
about this and just said no, diet had nothing to do with this disease and there
was nothing I could do but continue taking Asacol which wasn't making a bit of
difference. I cried that day in my bosses’ office after that call. I felt
absolutely lost. I was a defective human being.
Another
week went by and still no help. I made an appointment with a holistic doctor
who had treated himself for Crohn's disease. I had one session with this guy, I
don't remember his name, but he seemed to know what he was doing. He performed
acupuncture on me and sold me some Chinese herbs, vegetable mix and powders all
at a cost of nearly $300. I began these as soon as I got home and was now at
the point where I could no longer go to work. I took an emergency leave of
absence.
The
next week was absolute hell. The herbs and vegetables that the holistic doctor
gave me seemed to be making my condition worse. I was constantly going to the
bathroom and bleeding bright red blood. Another call to my G.I. and I was told
by his secretary that he was still on vacation and I should just take more
Imodium. I told her that I needed help now or would end up in the hospital. She
said she would tell him when he got back. Nice! I was stranded with no place to
turn and a few days later I was not able to walk on my own and had to go to the
ER. My wife practically carried me in.
After
some initial blood work, a CAT scan and stool testing I was admitted to the
intensive care unit with severe dehydration and anemia but the doctors still
didn't know or tell me what was causing this. The pain meds they gave me helped
a little but I was still having urgent diarrhea and had to keep getting up from
my hospital bed, dragging the IV unit with me to the bathroom. It was
impossible to get any rest in the hospital. I spent 5 days there. The meds they
gave me seemed to be calming my guts down some. I was on prednisone and Cipro
along with a few other pills that I don't remember. I was released to go home
but still in great pain. The diarrhea slowed down some and with the pain meds I
could sleep a little. I was glad to get out of the hospital but the severe
damage to my intestines would take more than 6 months to heal.
At
this point I had to go on Workman's Compensation as I still could not return to
work. At 60% of my wages it wouldn't be long until we were so behind in our
finances that we would be in a hopeless situation. I had to get back to work
ASAP! After a month at home I decided to press my family doctor into releasing
me to return to work. She did so reluctantly and I went back thinking this was
all behind me now.
I
tapered off of the prednisone over the next few months and seemed to be gaining
my health back very slowly. I kept thinking that my G.I. was wrong and that I
was better now. I was so wrong. Slowly my diarrhea came back and the bleeding
started up again. This time I was determined to search the internet for a cause
and cure. I knew there had to be answers out there and I would find them. I was
not going to let this disease ruin my life!
As
I searched and searched online I kept running into so called cures. All I had
to do was send $49.95, or $79.95, or $159.95, and I would be sent the
information and/or supplements that were 'guaranteed' to cure me of this
disease. The sites had many, many, reviews and they were all extremely
positive. Of course I was also very suspicious of these cures. It took a long
time, actually several months, before I finally stumbled onto Elaine
Gottschall's website Breaking the Vicious Cycle
www.breakingtheviciouscycle.info. After reading through this site and seeing
that they were giving information away for free, I was impressed. I bought the
book at Barnes and Noble and began the SCD the next week.
I
was absolutely amazed at the results and didn't have a bowel movement for over
a week! I was afraid that I was getting blocked up inside even though I had no
discomfort. It was a relief to not go for a while. Finally I had a bowel
movement and it was not the bloody diarrhea that I was having before. The pain
and cramping were subsiding. The diet was fixing me! I steadily improved and
quit taking Asacol. I was seeing a new G.I. doctor at the time and he asked me
every time I saw him 'how many times per day did you have a BM when you were in
high school?' Jesus Christ! That was over 30 years ago! Was it really
pertinent? After several visits with him I told him that I quit taking Asacol.
He got mad and said that I didn't trust him. I told him that I trusted how I
felt and that the Asacol wasn't helping me and that I thought that it was
actually hurting me. He threw my chart down on the counter and said fine, call
me when you have another flare because you will! I called him alright! Every
name in the book! What a jerk! I got my medical history from him a week later
and never went back. (Dr. Kiel passed away 8/20/13 due to an accident).
I
was convinced that all I needed at this point was the SCD diet. I didn't mind
cooking and I didn't care about all the 'illegal foods'. All I cared about was
that I was feeling better and could function again. I gained some weight back
and was now feeling pretty good. Before this all started I weighed 210 lbs. and
I had lost 30 lbs. from the first flare. I was around 180 at this point and
felt that it was close to my ideal weight. I had lost a lot of muscle mass too
and had to buy new clothes that fit. I went from a 36 waist to a 32! All my
shirts were like tents on me. I was following the diet strictly. If I was
unsure about anything I did not eat it. I made my own meals, dressings,
ketchup, and yogurt. I could eat as much as I wanted and learned how to cook. I
bought some really high end knives and learned how to use them. It was fun and
I was happy. Feeling much better and hopeful.
I
found a new G.I. doctor through my family doctor. He worked for Bayfront
Digestive Diseases on State Street almost directly across the street from Hamot
Hospital where I had been admitted to the emergency room in 2007. Bayfront
Digestive is part of the UPMC health care system and affiliated with Hamot. I
found him pleasant but he was unconvinced that diet had anything to do with
this disease. I consider it a condition and not a disease. I brought a copy of
Breaking the Vicious Cycle with me to show him but he had no interest in it. He
wanted to do another colonoscopy but I was terrified of the prep since my first
experience was so bad. I sucked it up and agreed to go through with it again
because I wanted to show him that the diet had cured me. This time the prep
wasn't too bad but the results of the scope were less than I had expected. He
said the disease had progressed and that I still had inflammation. In his
opinion it was worse than the first colonoscopy. How could that be? I was
feeling better. He wanted to put me on Remicade. Doctors must hate the
internet! I Googled the side effects and was terrified! No way was I going on
that! I had a chest X-ray and test for Tuberculosis and it came back negative,
but that scared me. Could Remicade really cause a dormant bacterium to come to
life? Sure seemed like it to me. He agreed to allow me to continue on the diet.
This doctor was pretty easy going and more than willing to allow me to make my
own health decisions. He did warn me of the chance of cancer if left untreated
and I understood the risks. I just did not want any immunosuppressant drugs. I
felt like I had not explored all of the options yet and that the diet had
helped. I still believed that there had to be another answer, another
option.
Two
years into the diet and I was starting to think I was really cured even though
the colonoscopy had shown otherwise. This was October, 2011. I decided to take
a chance and eat something that was not allowed on the diet. I had a
piece of fresh Italian bread with butter and it was delicious! After a week
with no reaction I was happy to try another piece. Another week went by and I
was ready to try some breaded chicken Parmesan at a local restaurant. Once
again a week passed and no problem. I then tried the lasagna which I knew had a
slight amount of sugar in the tomato sauce. A week passed and I was sure I was
cured. After a night out we stopped at Taco Bell and I bought 2 regular tacos
and ate them both. Man I missed the junk! Still no reaction! Halloween was here
and my son in law made some caramel filled dark chocolate candies. I had a
couple and they were so good! I had a couple more the next day and that was a
big mistake. A few days later I began to notice something weird
happening. Oh no! What was going on? I immediately went back on the intro diet
but I was going downhill fast. The diarrhea was back and I was noticing blood
already! What the hell? I began 40mg of prednisone but to no avail. A couple
weeks passed and I was back in the hospital again worse off than I was the
first time. I dropped all the weight I had gained and was tipping the scales at
around 150. I could not believe it! All the progress I had made was gone and I
was back at the beginning. Dammit! The pain this time was excruciating. I felt
like I was being torn up from the inside. The sugar was like a nuclear
explosion in my gut and there was nothing I could do but suffer through it. I
spent another 5 days in intensive care and my doctor didn't come to see me one
time. I understand that he was busy but I was there 5 days and his office was
kitty-corner to the hospital. He sent a few other doctors the see me but it just
made me feel like he didn't really care since he couldn't take 1/2 hour out of
his day to visit me. Maybe it was because I refused the drugs and helping him
to make his drug quota. I know that seems harsh but money does come into play
here. Don't kid yourself.
After
getting out of the hospital and again using all my vacation time to recuperate
I was forced to return to work too soon. I looked like a holocaust victim! My
eyes were sunken and dark, my energy level was so low that I had to be careful
about moving too fast and bringing on a dizzy spell, my guts ached and I wasn't
sleeping well and yet I had to work or lose everything. I was on prednisone and
needed to taper off. My doctor was once again pushing the immunosuppressant
drugs. I asked him to give me time to let the diet work again and he
reluctantly agreed. Every time I would get down below 5mg/day of prednisone I
would begin to have diarrhea and bleeding. The diet wasn't working the same way
it had at the beginning. I did the intro diet 3 times and it didn't seem to
help. Finally I bought an E book called Surviving to Thriving written by Jordan
Reasoner and Steve Wright www.scdlifestyle.com. In this book were stages of how
you should progress on the SCD diet. I followed the stages and was able to wean
off of prednisone this time without the problems starting back up again. This
was a relief and I thought I was finally back on track.
I
was wrong again. Through the rest of 2012 and into 2013 I got progressively
worse. The diarrhea continued and I was forced to wear adult diapers. The
bleeding had come back and even though I was not in a terrible flare I was
making many trips to the bathroom. I was always worried about having an
accident. Introducing Tenesmus! The feeling that you have to have a BM but when
you try nothing happens. You leave the bathroom but feel you have to go again
but once more nothing. This should be renamed torturemus. You try to ignore it
but then have an accident. So many hours spent on the toilet! My wife waiting
and waiting for me to come out of the bathroom. Pure torture!
I
tried to add some supplements to my diet because I had been feeling so weak.
The supplements - multi vitamin, vitamin B and calcium caused me more problems
so I immediately stopped taking them. I tried a probiotic called Critical Care
by Renew Life and L-Glutamine and they seemed to help for a little while but I
was still having problems. My situation was getting so desperate that I decided
that I needed to find a new doctor. I wanted a GI who was unaffiliated with the
local hospitals. I found DR. Bansidhar. He was young and very intelligent. I
was hoping he could help me. I had one appointment with him and he stressed how
serious this disease (condition) was if left untreated. He was also very
concerned with my family’s' history of bowel problems and cancer. Once again he
did not believe that diet affected bowel function. I brought up the subject of
fecal microbiota transplants (FMT) but he said that there was not enough proof
through clinical trials to show that it worked for people with UC. I agreed to
have a colonoscopy with biopsies taken every 10cm throughout the entire colon.
This was performed on Monday and I waited nervously for the test results. They
told me that if I didn't hear from them in the next week that the biopsies for
cancer were negative. It's hell waiting for a call that would change my life
again forever. They should let you know that you are all clear as soon as they
have the test results. It's a poor policy and added to my stress.
The
first time I read about fecal transplant therapy I nearly vomited. I had to
stop reading because I was so grossed out. I didn't understand that there was a
procedure to follow. I imagined the worst and it was unthinkable. I slowly got
used to the idea and decided to give it another chance. I bought an e-book
called Fecal transplant Cures Ulcerative Colitis by Michael Hurst
(www.fecaltransplant.org). He suffered from UC for 12 years and was now
cured! In his book he outlined the steps that he took to do home fecal
transplants to cure his condition. I was convinced that this was the answer. It
made perfect sense that the bacteria was out of balance in my gut and needed to
be brought back by infusing fecal matter from a healthy donor. The day after my
colonoscopy I began to take 60mg of prednisone without the doctors’ knowledge
to calm the inflammation in preparation for the FMT that I planned to do as
soon as healing allowed. When I saw my G.I. again I planned to convince him to
partner with me in this. I needed him to supply prescriptions for prednisone,
antibiotics and hopefully a sedative so I could follow Michaels' protocol and
cure myself. I didn't think he would go along with it but I had nothing to lose
and he had no answers or cure. He wouldn't take responsibility if I had a
negative reaction from Imuran or Remicade would he? No, so there should not be
a problem. I thought that together we could prove that this is curable.
At
this point I would like to step back a bit and tell you a little about how UC
has changed my life.
Before
UC I was healthy and active. I have always had alot of energy and with the
exception of heartburn had no digestive issues. I took Tums for this and
eventually started taking Prevacid once a day. I was happy to not have any
heartburn anymore after suffering from it from a very early age. I am
suspicious of the Proton pump inhibitor drugs (Zantac, Prilosec) now and wonder
if they too were somewhat responsible for my getting UC. These drugs inhibit
the formation of stomach acid allowing undigested food to move through the
system where bacteria can feed on it in the colon. Not an ideal situation to
say the least!
I
went from a busy carefree lifestyle to cooking all my meals, checking all labels
and avoiding illegal foods, not eating out, no alcohol, loss of energy, and
constant fear of being in public without a bathroom nearby or worse yet it
being occupied. Our conversations at home revolved around shit! All we talked
about was shit! We were talking shit every day, everywhere we went, no matter
what we did or how we tried to avoid it the subject would eventually come up.
We made jokes about pooping and laughed and cried about it. We were angry at
the doctors and at a medical system that didn't care about finding a cure for
UC. The constant push to take Immunosuppressant drugs like Remicade, Imuran,
and Humira pissed me off. Doctors do not have incentive to cure people. A new
cure will be debated and contested for years. It invites trouble so they
simply give in and give up. I know this is a difficult condition to cure and I
know that everyone’s system is unique but medication is not the answer. I
cannot believe how many times I have heard a doctor say that diet has nothing
to do with bowel problems. Really? Whatever happened to you are what you eat?
My
musical career was on hold, my body ached from malnutrition and I felt like
arthritis was affecting my joints. I got mad at myself when I had an accident
or we had to change plans because of UC. There were times when I was feeling
good that we decided to go out but as I was on the way had an accident and we
had to drive home. This was all so depressing and at times I felt that I wasn't
a man at all anymore. I was a shell. I shrank! I was just a little fellow now.
I used to be strong and muscular but now I was bony and skinny. I hated it!
This was no way to live and I got tired of my life being about shit. There was
nowhere to turn and nothing to do so I just learned to take it one day at a time.
What else could I do? At least I was still alive. Not much of a life though,
compared to how I used to live. It just sucked!
Twelve
days since the colonoscopy and the doctors' office hadn't called so I was
fairly confident that no cancer was found. I was on prednisone 60mg/day since
and had seen remarkable improvement. Not running to the toilet 20 times a day,
less accidents, joint pain gone, muscles and tendons loosening up, I even
started exercising again! There were some side effects. I would wake up about
an hour after falling asleep every night and then every hour after that to pee.
I started taking a teaspoon of cannabis leaf and some valerian root to help me
sleep. My wife said I seemed grouchy. I felt irritable. My face was rounded out
a little. I didn't have moon face (a common side effect from prednisone) yet
though. I thought I actually looked better. My cheeks weren't so sunk in. I
knew that I couldn't stay on prednisone forever but it sure was a nice break
from the flare I was experiencing. I was not bleeding at all. I felt almost
normal!
Monday
was D day! I would be seeing my G.I. doctor at 2:30 and hopefully would be able
to convince him to partner with me in my plan for home fecal transplant
therapy. I had been gearing up for this for a few weeks. I bought protein
powder (Warrior Force), Vitamin B-12 injections, an iron supplement,
L-Glutamine, and even a small dorm sized refrigerator because my wife would not
allow me to store poop in the kitchen refrigerator. I probably had around $400
invested. I truly believed that this would work and I was using Michael Hurst’s
book for guidance. I was planning on 10 days of fecal transplants right before
bed. I needed more prednisone, Vancomycin or Cipro, and Bupropion or Silenor from
the Doctor. Even if he didn't want to help me I would buy the prednisone online
and continue on it until the therapy was complete. I was moving forward with
this with him or without him. I planned on weaning off the prednisone after the
transplants and hoped that the new bacteria would colonize my system and I
would be cured!
I
met with my doctor and it went really well. I was upfront about the prednisone
even though I was a bit worried that he would be mad at me for self-medicating.
He said that he understood that I was in need of something and would have
started me on 40mg/day but that 60 was ok if that's what worked for me in the
past. That was a relief! I really wanted to work with him and I wanted him on
my team.
He
told me that all the biopsies came back negative for cancer but made sure I
knew that that didn't mean I absolutely didn't have it. They can't biopsy the
entire colon so there is a possibility that it can be missed. Even with that I
was very relieved. Next we talked about the meds he wanted to use to get me
into remission. I was agreeable to Lialda and a slow taper off of prednisone
over the next 6 weeks but if I started to have problems again I would up my
prednisone because I couldn't go back to bleeding and constant diarrhea. No way!
He explained that Liada (Mesalamine) would not get a person out of a flare but
could soothe the colon after the prednisone did its work of reducing the
inflammation. No other doctor had ever explained this to me and previously I
had thought that Mesalamine would work to stop a flare. That was good info.
From our last meeting Dr. Bansidhar got the distinct impression that I was
totally against any meds. I told him that this was not so and that I was
willing to work with him if he would work with me. He assured me that every
decision was mine and that his job was to find the best possible solution for
me. I appreciated that and told him so.
Now
was the time for me to bring up the subject of home fecal transplants again! I
brought Dr. Borodys' study (an Australian doctor who has had success in
clinical trials treating c. difficile using FMT) and several other papers
showing that there was a possibility that the therapy worked. I also brought a
condensed version of Michael Hurst’s story about how he cured himself. My
doctor seemed very interested! He again said that he didn't know everything and
that he was interested in this. I explained that I wanted to use my wife as a
donor and that I would be doing this at home. I also told him I wanted his help
in obtaining Vancomycin and other drugs to make sure I did it right. He said he
would read over the info I gave him and consult with some colleagues about it.
His advice was to wait until I get the inflammation under control before I
started FMT. I agreed and told him it meant a lot to me that he was open to
this. He seemed genuinely excited and I truly believed he would help me. I was
excited as I left his office and even though I needed to wait a little longer
before I started the FMTs I thought the meeting was a success and that I was on
the right path. I made an appointment to see him again in 6 weeks. At that time
I would hopefully be off the prednisone and healing. That would be the
beginning of October and I could then start the therapy.
I
went off of the SCD diet over the weekend starting slowly with some potatoes
one day and some bread the next. I had pasta on Sunday and didn't notice any
ill effects. It was such a joy to eat like that again and the food made me feel
good. We were able to go to a restaurant that we hadn't been to in years and my
wife enjoyed a meal that she missed a lot. The diet helped me when nothing else
would (before I knew about prednisone) but it didn't cure me. It just put the
inflammation down to a tolerable level. I knew bacterial imbalance was the key
here. I got involved in the Human Food Project
(http://humanfoodproject.com/americangut/) and was looking forward to seeing
the difference between my gut bacteria and my wife’s. We both sent fecal
samples using a kit that they provided. We had to document our meds and food
habits for a week. It was cumbersome but I needed to know what was lurking in
my gut. I will speak more about this report later in the book.
I
hated being sick! It consumed my life for 7 years! I used to be a drummer and I
didn't even have a drum set anymore! I used to play guitar. I didn't even have
a guitar now! I was learning to play the blues harp and that was getting me
through. I had the blues! The poopin' too much blues! It was not fun thinking
about UC all the time and I was definitely worried about coming off prednisone.
I felt really great but I had felt this before. As soon as I dropped the
steroid I would start the downward spiral again. I didn't want this to happen.
My doctor wanted me to cut the prednisone dosage to 30mg/day for the next week
and this scared me. I quit the SCD diet and had no problems with bread,
potatoes, pasta or moms fresh homemade peach pie! She was so happy watching me
eat it and I really enjoyed it a lot. I can't tell you how good food tastes
when you haven't had it for years! It's absolutely amazing!
Here
was my dilemma. I wanted to start the home fecal transplants as soon as
possible. It felt like the inflammation had subsided and I was not going to the
bathroom as much. I was not bleeding but my stools were still not formed. I
told my doctor I would wait until I was off the prednisone and in remission
before I started the home therapy. He thought that Lialda might get me to stay
in remission as I weaned off the prednisone. I was highly doubtful. I was also
thinking that I might be playing with fire by coming off the SCD right now. I
knew it was only because of the prednisone that I could eat non-SCD foods. I
wanted to start the fecal transplants now! I was considering ordering Cipro (update - do not take Cipro! it is very dangerous!) and
Bupropion from an online Canadian pharmacy and moving forward with this the
next week. It's so weird how the mind is affected by bowel conditions. I like
to think of myself as a logical and intelligent person but this sickness messes
with your brain. I had difficulty making decisions and remembering things. I
also felt desperate to get well and I couldn't go through another extreme
flare. I didn't want to end up in the hospital again and I didn't want to have
my colon removed. I was just so sick and tired of being sick and tired! I
wanted to be normal again!
Tuesday
morning after the Labor Day holiday I was improving even though I was off the
SCD diet. I was eating anything I wanted. I even had ice cream! My stools had
gotten progressively harder and because I was still a bit sore I started
vitamin E enemas before bed. This brought some relief from the pain while going
and the little bit of bleeding I was seeing because of the hard poop had
stopped. I had great amounts of energy and felt like my old self. I was at
about 80%. I could ride my bike again but I would get tired quickly. I remember
when I could ride and ride and ride without feeling the burn in my thighs. I
wanted that feeling back! Soon! So here's what I started doing: 2 heaping tbls.
Ultimate Warrior Food (chocolate), 1 tsp L-Glutamine (fermented), 1 cup
blueberries, or 1 peach, 2 tbls. of honey, 2 tbls. fish oil in a shake each
morning for an extreme protein boost, Vitamin B-12 shots (1000mcg-musclular)
for 7 days, and then every other day for 7 more injections, 25mg Gentle iron
(Solgar Iron Bisglycinate) 2x daily, Freeda calcium (5x), multivitamin (3x),
ultimate b (1x) Ultimate Flora Critical Care 50 Billion Probiotic (1x),
prednisone 60mg daily, Protonix 30mg - not liking this Lialda (2x), Valerian
root (4x at bedtime), and a vitamin E (D-tocopherol 10x 1000 mg) enema at
bedtime
I
was off the SCD diet and eating what I wanted, still eating healthy and only
having really bad foods occasionally (cake, ice cream, sweet drinks -no pop)
I
want to bring something up that I have experienced that might be somewhat
controversial. I don't want to be a downer about the SCD diet or discourage
anyone from trying it or depending on it. I did for years. The diet calmed my
symptoms and allowed me to function without medicine. Here's the problem: Even
though I was doing better the inflammation was still there just under the
surface. I wasn't really getting better. I was maintaining. How do I know this?
Just a week after going off the diet I was in a full blown flare! It didn't
take weeks or months, it happened almost immediately. I had a colonoscopy and
was told that I was worse than I was 2 years before when I had started the
diet. After being on the diet again since my last flare in 2011 my colonoscopy
showed the same thing. "Inflamed from stem to stern" is how my doctor
put it. He warned me very sternly about letting this inflammation continue.
That is why I have surrendered to the meds and am moving forward with the FMT.
My main point is that even though you might feel that the diet is working and
that you are getting better, the inflammation might still be there. It's just
not so bad that you are being bothered by it. You cannot let this linger.
Cancer is the main threat if you do. Make sure you are getting the inflammation
under control. Get a colonoscopy to be sure. That's all I have to say on this
for now. I hope everyone can be cured of this terrible condition someday.
Now
it was time to begin a taper off of the prednisone. My doctor wanted me to go
to 30mg/day but I wanted to stay at 60mg because of all the non SCD food I was
eating. I ordered Cipro and Wellbutrin from a Canadian pharmacy without a
prescription. The next step would be 5 days of Cipro to weaken the hold that
any bad bacteria had in my gut followed by a 10 day regimen of evening fecal
transplants while taking the Wellbutrin (Bupropion) to calm my system down
while continuing the slow prednisone taper down to zero. I hadn't had any
urgency lately so I was thinking my system was ready. I was very excited to be
doing this and extremely hopeful that it would be the answer to my hope for a
cure.
I
decided to give in and lower my prednisone dose to 30mg/day per my doctors’
insistence. That night was bad. I started having diarrhea and urgency again and
that scared me. I immediately went back to 60mg/day and called the doctor. He
was adamant that I stay at 30mg and said that it was probably just a
coincidence that I started having problems right after cutting the dose. I
wasn't convinced and since I had a wedding to go to on Saturday I told him I
was going to stay at 60 until Sunday and then cut it to 30 and see how it goes.
I felt better the rest of the week and had a nice time at the wedding without
any problems. On Sunday I did as I said and cut the dose to 30. I felt ok
Sunday but Monday started going more often and my butt started getting
extremely sore. My stools were slightly formed now and somewhat hard making it
painful to go, especially 5-6 times a day. I had been eating a lot more than
usual. I was so damned hungry all the time! I believe this was from a
combination of the prednisone and also my body demanding nourishment. I did
gain a few pounds and was up to 174 lbs. as of that morning. I had 5 bowel movements
the previous night and 3 in the morning and they were very painful and urgent
at times. I didn't know how he could say that the prednisone had the same
effect at 30 as it did at 60. He told me that the amount shouldn't matter at
this time. It sure seemed to matter to my guts! I was going a couple times a
day and suddenly I was going a lot more. I knew I had to cut the prednisone but
maybe at a slower rate. I needed to stay healed to do the fecal transplants. I
was still waiting for my meds from the Canadian Pharmacy. I hoped they would
come soon but I was too sore to do the therapy at this time anyway.
I
was continuing to build up my albumen levels with the protein powder and giving
myself the vitamin B-12 shots every other day. I stopped the vitamin E enemas
because they didn't seem to be helping anymore. I read that coconut oil could
be very soothing so I thought I might try that instead. I was not feeling well
and had noticed a lot of muscle cramping lately. Not sure what that was from.
Probably malnourishment. My hands were getting cramped up just from holding my
steering wheel. Very strange. I felt depressed too. Having accidents again made
me feel really bad. I was trying to keep my spirits up and was still hopeful
that the fecal transplant therapy would cure me. The waiting was killing me
though. My doctor was very stingy with the prednisone and my prescription ran
out because I stayed at 60mg. for an extra week. I was hoping he would re-fill
it for me since I only had a couple days’ worth left. I knew I would also be
buying that from the Canadian Pharmacy soon. It was so expensive though. I
payed around $7 for 50 - 10mg pills through my insurance but the Canadian
Pharmacy charged around $50. I would have to do it, I had no other choice.
I
was still off the SCD diet and enjoying eating what I wanted. I didn't have any
reaction to the foods I was eating. I had pasta for dinner and it was great. I
also had a sub from my favorite lunch spot Marias. They make a killer meatball
sub and I got banana peppers, mushrooms and cheese on it. It was great! I went
to McDonalds drive thru and ordered a Big Mac. When she said it would be $4.59
I said what??? $4.59 for a Big Mac??? Forget it and I drove away. That was
probably for the best. That food is so bad for you. (I really wanted one though
hee hee hee!)
I
called the pharmacy to see if Dr. Bansidhar had refilled my prednisone
prescription but they told me they had not heard from him since they called on
Monday. I called him again and told his assistant that I was down to 6 - 10mg
pills and would need more soon. She called back and told me they needed me to
stay with his taper program which is 30 this week, 15 next week, 10 the week
after, 5 the next and 5 every other day for one more week and then stop. I knew
he was going to add up exactly how many pills I needed because he didn't want
me to have any leftover. I decided to buy from the Canadian Pharmacy. I ordered
from here www.thecanadianhealthcaremall.com. I placed the order and got my
pills in less than 3 weeks.
I
was still having trouble with anal soreness. I wasn't going as much but it was
excruciatingly painful when I did. My guts were healing from all the
supplements, vitamin B-12 and protein meal replacement shakes. I was not
bleeding at all and that was great! I asked Dr. Bansidhars’ assistant about the
soreness which was just at the end of my rectum and the inside of my cheeks.
She said he suggested an ointment called Calmoseptine. I bought some at
Walgreens for $5.99 and tried it that night. It did not help at all. The only
thing that helped was rinsing with a warm spray in the tub after going and
applying Vaseline after I dried. I couldn't do that at work though so I would
just wet some TP and dab. I tried some Bacitracin in a tube and that helped. It
seemed like my stools were made of pure acid!
Dr.
Bansidhar insisted that I go on Protonix to make sure I didn't get a stomach
ulcer from the high dose of prednisone. I had been on Protonix before as well
as other Proton pump inhibitors and they worked well for me. No heartburn at
all. Having anal pain is enough! Flaring and having extremely painful heartburn
at the same time is no fun at all. That is why I agreed to take it again. I am
not sure how good it is for me and I am suspicious that that is why my stools
were so acidic. I needed to do something to make my stools less painful. I knew
that coming off the SCD may have been responsible for this but after eating
anything I wanted I didn't want to go back. I didn't know if I could. The
thought just bummed me out so bad. I was not reacting to anything. I just had
to get healed up to do the FMT. I would go back on the diet if this didn't
clear up in the next few days. Pooping was so painful that I dreaded going. I
could hardly walk after, it was awful. I was glad I had an elevated desk at
work that allowed me to stand and work. I could not sit for more than a few
minutes.
Another
thing I want to mention is that I had been taking 1 tsp. of dried cannabis leaf
and Valerian root (530 mg x 4) before bed. That really helped me sleep. Sleep
is very important. I know it's illegal and if the government wants to bust me
then I say come get me. I am trying to be as honest and helpful as I can. That
is why I am telling you everything. I want you to know my experience and I am
hoping it will help you or your loved one. No one should suffer like this.
My
doctor had me lower the dose of prednisone to 30mg/day starting on a Sunday. I
did ok and really didn't have any problems other than the ones I have been
having with the soreness and acidic stools. I had been having 8-10 BMs a day
and some gas and urgency. They were very painful and it felt like I was
crapping razor blades. A week later he had me lower the dose by 1/2 again to 15
mg/day. I did ok on Sunday but had a rough night sleeping Sunday night and woke
with a headache and slight fever (101.6°) Monday morning. It was hell going to
work with chills and a headache but I made it through the day.
That
night I was freezing and had a hard time sleeping. I had 3 BMs during the night
and 3 more in the morning. I got to work ok but as soon as I got there I had to
run to the bathroom. I nearly had an accident. My temp that morning was 99.6°
and I woke with a headache and tightness in my lungs. Reading online, these symptoms
are indicative of a too fast taper off prednisone. Dr. Bansidhar gave me a
prescription for 28-10mg pills. That wasn't much. He wanted to force me off the
prednisone ASAP. After my colonoscopy I put myself on 60mg/day. I was honest
with him about that and he asked me where I got the prednisone. I told him I
had it leftover. Apparently he didn't like that and was making sure I didn't
have any leftover this time.
I
had to follow his taper schedule because I was sure he would not prescribe any
more. I was also reading that you should not take antibiotics while tapering
off prednisone. I planned on staying at 10 while doing the home FMT. I had the
Cipro and Welllbutrin but could not proceed with the therapy until I got the
soreness under control.
Not
sure what was causing the acidic stools but I quit all supplements in hopes
that would help. I was still taking the meal replacement shakes and had added a
tablespoon of fish oil. I also made the shake with an Avocado. I was hoping the
oils in the Avocado might offer some relief. Maybe this would help. If not I
would discontinue the Warrior Food next. If that didn't make a difference I
would stop the Protonix. It was so painful having a BM that I would nearly pass
out. I had to use wet toilet paper to wipe and was also using Bacitracin at
night. I tried the Calmoseptine again and it seemed to soothe. I also tried A
& D ointment from Walgreens, it was very soothing and I highly recommend
it.
Should
I call Dr. Bansidhar today and let him know what is happening? Will he care?
Will he do anything to help me? Somehow I didn't think so. Finding a new doctor
is such a pain in the ass. It's a crapshoot! I know. That doesn't seem very
funny. I tried to see the humor in that but I was feeling so shitty. I was
trying to stay positive but feeling depressed again. I was so cold and tired
and my body and skin ached. I had been getting really annoying muscle cramps in
my hands and the front of my lower legs. Sitting on the toilet and having a
painful BM is just so much fun but when your legs are cramping at the same
time. It's just unbelievable. How much pain could a person endure? I was
finding that amount to be a lot. More than I ever thought.
Now
it was a week since I talked to my doctor and he hadn't called me back. I stayed
on 20mg/day prednisone all last week and cut to 17 on Sunday. I was feeling
good and the burning and soreness were practically gone now. I didn't want to
start the fecal transplants that week because we were planning a long weekend
trip to see a band so I would start the antibiotic the following Monday and
start the FMT the following week. I planned to stay at 10mg/day of prednisone
throughout the FMT and then after 10 days of that wean slowly and see how it
went. I ordered 180 - 10mg pills of Prednisolone from the Canadian health &
Care Mall http://thecanadianhealthcaremall.com/ for $75. Now I could taper at
my own pace.
I
was a bit upset with my doctor for not staying in communication with me. I
thought that he was probably mad that I was not following his prednisone taper
schedule. I found this online
http://mpkb.org/home/othertreatments/corticosteroids/weaningoffsteroids and it
made much more sense than his fast tapering schedule. We are individuals and
know how we feel. Doctors need to be aware of that and treat us accordingly. I
stopped the protein meal replacement shakes in the morning for a couple days to
see if that was why I was getting such bad cramping. I was still experiencing
some hand cramping and I was not sure if that was what was causing it or not.
The only things I was taking now were Lialda 1.2gm 2x daily, Protonix 1x daily,
17 1/2mg prednisone, and B-12 injections 2X/week.
I
was been feeling better but still having too many BMs. I was going 6-8 times a
day but they were nearly formed and the diarrhea had subsided. No blood or
mucus either. I was still having some urgency but some of that was just the
panic response I had learned from years of having this condition. I was trying
to get better control of my emotions when faced with an attack. I thought if I
just relaxed and calmed myself I could avoid accidents. The Zen of pooping! Ha
ha! Maybe I'll write a book! We had a nice 4 day weekend in Jim Thorpe.PA. What
beautiful scenery and it was almost the peak of the leaf season. I was feeling
good and had lowered my prednisone to 15mg/day without any problems. I started
on Cypro 500mg/day on Monday. I planned to take that for 7 days and then start
the home fecal transplants. I was a bit nervous about taking an antibiotic. I
was hoping it wouldn't affect my system negatively and give me diarrhea. That
would be devastating at this point. I was relatively healed up and ready to do
the FMT. It had been a long road getting here and I would hate anything to ruin
it now. My wife was having loose stools at the time so I spoke to my daughter
and granddaughter about using them as donors. I wanted to do everything I could
to make sure this worked. Good donations were paramount! They agreed after the
initial shock. I explained that they might just be saving my life! It was
weird having that conversation. My granddaughter Mina kept breaking out
laughing! It was a strange thing to ask for sure!
I
cancelled my appointment with Dr. Bansidhar and re-scheduled for the following
week. They were very understanding about that. It would be interesting to see
his reaction when I told him I was still at 12.5 mg prednisone and planned on
staying at 10 until I completed the FMT. Now that I could get prednisone online
I could taper at my own pace.
I
was feeling so good and gained some weight. I was at 179 lbs. now! Eating more
carbs really helped me gain. I actually thought about not doing the fecal
transplant but I knew that the condition still existed and I needed to move
forward with this to cure myself. Next Tuesday would be D day for no more D! I
was excited to get it done and still very hopeful that I would be cured. I
would be taking Wellbutrin also and planned on at least 10 days of FMT. I was
hoping for a UC free life!
In
the next section I explain the procedure for fecal transplantation and explain
the details. It gets quite graphic so be forewarned.
I
did the first home fecal transplant before bed Tuesday night. The weeks of
preparation really paid off as I was feeling very good. I was down to 12mg/day
prednisone and not experiencing any signs of flaring. My colon felt healed and
I was having near solid stools. I was still going too often though, averaging
8-10 BMs/day. I still had urgency and also had a couple accidents over the
previous 2 weeks. For seven days I took 500mg of Cipro to weaken the bacteria
in my system(Note: do not take Cipro!). Along with the prednisone I was also taking 2 Lialda pills per
day and one Protonix.
The
one problem I was having was getting a fresh donation. My wife left one for me
that she made in the morning before work and it sat in the refrigerator from
6:00 am until 9:45 pm when I used it. I asked my daughters to help me also and
was hoping for some evening donations. Even though it sat in the fridge all day
I was still hoping to benefit from it. I took 2 Imodium, 2 Valerian root caps,
1 tsp. cannabis leaf, and 300 mg Wellbutrin about an hour before the
transplant. I mixed the stool with warm distilled water (not saline) in a
blender on low for about 20 seconds and then strained it into a large measuring
cup using a wire mesh strainer. I stirred in the psyllium fiber powder with a
plastic spoon. At this point I got the bright idea to take all my implements to
the basement so I could rinse everything as I did not want to go down 2 flights
of stairs after doing the transplant. I thought that was brilliant until I got
back upstairs and found that the psyllium fiber has thickened the solution to
the point that I could not suck it up into the turkey baster. After that I
added the fiber right before I was ready to use the solution. I had to add
water to thin it out but the bulb on the turkey baster still gave me trouble.
It was way too soft and when I tried and squeeze the solution out and into me
it leaked air so I had to hold it around the collar with one hand to seal it
and squeeze the bulb with the other. That was very awkward but I got the job
done. I needed a better baster! I was able to insert 3 basterfulls. I rolled
onto my left side for a couple minutes and then on my right side, upside down
bicycle position for a bit and then on my back. I rinsed the container and
baster in the upstairs sink and disinfected it and went straight to bed. I was able to keep the solution in all night
and didn't have a bowel movement until about 4:30 am. It was near solid too. I
felt great the next day and I thought that I could get used to doing this. It's
not as bad as I thought it would be and I just kept my nose plugged for the
whole thing. I had an appointment to see Dr. Bansidhar that day at 2:30. I was
going to tell him what I was doing and hoped he would help. Either way I was
keeping him as my GI for now just in case I needed him.
I
saw the doctor and got a stern lecture regarding following his directives. He
was angry with me for not tapering the prednisone according to his schedule. I
told him that as soon as I went from 30mg to 15mg I started to have problems.
He said that couldn't happen and that it was just a coincidence. It was also a
coincidence that as soon as I started taking 30mg again the problems stopped. I
asked him why every doctor has a different tapering schedule. He said that
every patient is different and that it has to be done with regards to the other
medications the patient is taking and their current condition. He insisted that
I do as he says from now on so I lied and agreed. I was staying on my own taper
of -2.5mg per week. I really don't like doctors. Dr. Bansidhar is younger than
any other GI I have seen and I was hoping we could work together but it's his
way or the highway. I didn't mention anything about fecal transplants. I gave
him some case studies the last time I saw him and he said he would read them. I
don't believe he has any interest in curing this condition. I asked about
tapering off the Lialda but he said that I would probably be on that for the
rest of my life. I had other plans. I sure hoped this FMT worked. I would like
to go the rest of my life without ever seeing a doctor again! My father is 84
and swore off doctors when he was 40. I truly believe that many people die
because of the years of taking medications that are supposed to help them. I
want to say no to their pharmaceuticals.
The
next night’s donation came from my daughter and it was much fresher. I mixed it
with a fresh donation from my wife. The turkey baster was still giving me
problems and I wished I would have investigated better solutions for that. I
thought about putting a hose clamp on the bulb. That would seal it and stop the
air from leaking out. The other problem is that I had to keep the bulb squeezed
while pulling the baster out. Otherwise it would suck the solution right back
up and out of me. That was a real pain. I wished there was a better way. I put
2 full basters in but couldn't hold it. Luckily I had spread some paper towels
out under me so it was an easy clean up. I put another baster full in but once
again I couldn't hold it and headed for the toilet. I still had some in there
so I cleaned up and went to bed. I slept well and didn't have a BM until I had
a cup of coffee in the morning. It was nearly solid. Putting a turkey baster up
your butt isn't fun. I wanted to make sure the solution got in as far as
possible because if you only get it in the end of the colon it's much harder to
hold. I put the baster in about 5 inches. Once I got it lined up correctly it
didn't hurt. Getting the correct angle could be tricky but I was getting better
at it. I used Vaseline to coat the baster making it easier to slide in.
I couldn't wait until this was over but I was committed to doing it and would
continue for 10 days. I thought one baster full was enough. Better to do that
and keep it in than to try and put more in and lose it. So far I didn't have
any negative side effects from this procedure.
Day
9 of my home fecal transplant experiment and things were going well. I bought a
new baster at Walmart for $2. It had a black rubber bulb that fit very snugly
over the tube. It worked great and I was so glad I bought it. The tube was made
of clear, smooth plastic and was a bit narrower than the previous one. It
didn't leak air at all. So far I had
been able to hold the solution all night every night. I found that if I could
have a bowel movement in the evening, preferably right before the transplant,
it made it easier to hold. Makes sense since there is room then. I also found
that if I pulled the baster out a little while squeezing the bulb it went in
much easier. I was getting good at this! Still I didn't want to continue more
than 10 days. The whole process took about 40 minutes and I was getting to bed
rather late.
I
felt good and believed the therapy was working. I had gotten excited about
other remedies before and been disappointed so I was trying to not get too
excited while maintaining a positive attitude. I believed it would work. I was
still on 10mg prednisone so I wouldn't know for another 4 weeks how I would
react once I was totally weaned off of that. I thought the Imodium, Wellbutrin,
Valerian root, and Cannabis helped to calm my system and helped me to keep the
solution in. The fiber I added also thickened it up after I put it in and I
believe this is essential. The bacteria can feed on this and it will populate
better.
When
I started I was having 6-8 bowel movements a day, now I was down to 4-5. That
was progress and I also gained more weight. I was 182 lbs. now! Just call me
fatty! Hey, hey, hey! I started exercising again and that felt good. I didn't
make a follow up appointment with Dr. Bansidhar. He wanted to see me again in
April and do another colonoscopy in August. I wasn't sure if I would go back to
him or not. I guess I wanted to wait and see how things went. Two more
transplants to go! I would be glad when this was over. It wasn't that bad but
not that fun either. It goes to show how desperate a person can be to regain
their health and get their life back.
I
did the 10th infusion. I was worried because I did not have a donation as of
8:00 PM but my wife came through at the last minute. She was so supportive and
encouraging through all of this and I really appreciate her. I didn't feel like
doing the transplant but forced myself to go through with it. I had a bit of
trouble holding it in and lost some but the majority stayed and I was able to
sleep through the night with it in once again.
I
started feeling a pain under my right jaw on Wednesday night but just
attributed it to doing crunches all week on my incline bench. I was only up to
12 reps but I thought that maybe I strained my neck. I woke in the morning to
swelling in my neck under my right jaw. This is where the lymph node is and I
was very concerned. I read that swollen lymph nodes are the result of a viral
or bacterial infection somewhere in the body and that it usually clears up by
itself. It was still swollen the next morning but not worse. I had a bad sliver
in my finger that got infected and I got that out. I was hoping that was all it
was. My gut felt fine and on the way to work I had to go to the bathroom pretty
bad. I was able to hold it even though it was difficult. I felt great about
that! It gave me even more hope that this was going to work!
Over
the next month I would be tapering very slowly off of the prednisone and then
after I saw how I was doing I planned to taper off the Lialda. My doctor wanted
me to get blood work done again. I wasn't exactly sure what he was looking for
but I figured it wouldn't hurt, especially with the swollen gland. I was hoping
that cleared up soon.
My
only concern through all of the FMT therapy was that on a few days I had to use
donations that were in the refrigerator since early morning. That's one thing I
had no control over. I had hoped that since I recruited 3 people to be donors I
would have at least one fresh donation every day. If this didn't work that
would probably the reason. I read that the fecal matter is only viable for
around 6 hours if refrigerated. I would do this again if it was necessary but
next time would make sure that I only used fresh donations.
I
was feeling good except for the pain under my jaw. Still having 5-6 BMs per
day. I was hoping that would lessen over the next couple weeks. I was not
having any diarrhea, mucus, or bleeding and my gut felt healed.
I
had a nice weekend and it was great to not have to do the fecal transplants. I
hoped I wouldn't ever have to do them again but if it didn't work this time I
would be willing to try again. I was having 5-6 BMs per day and they were soft.
I woke up in the morning very depressed and I was not sure why. I took the last
of the Wellbutrin before bed and didn't sleep well. I felt down all day. I was
very tired when I got home from work and didn't want to do anything. I slept a
little better that night but had strange dreams.
I
was still feeling a bit low the next morning and I was having some discomfort
in my ascending colon. It was a dull ache. My first thoughts were that I was
getting inflamed but I was hoping that wasn't happening. Still no diarrhea so
that was a good sign. I was at 7.5mg/day of prednisone and hadn't noticed any
changes. I was not restricting my diet either. I even had a couple beers over the
weekend!
It's
weird but I was thinking about having UC and something I read. It said 'you do
not know failure in life until you crap yourself'. I remember every single
accident vividly. I stopped thinking of it as failure. I dreaded it and even
though I always had a clean-up kit and spare diaper with me, I still dreaded
it. It was an awful feeling and I sometimes thought of UC as a demon, a living
thing that just wanted to destroy my life and make me feel bad about myself. As
an example, my wife and I went out of town for 4 days. I had no problems at all
for the whole time until we got home. I pulled into the driveway, got out of
the truck and immediately had to go. Before I could even get the key in the
door I had crapped myself! What the hell? There went all my confidence and I
felt like the demon UC was laughing at me! I tried to not let it get me down
but it was difficult. This battle was not only physical but psychological as
well. Now even the slightest feeling of having to go started to put me in a panic.
I tried to settle myself and use meditation practices to calm down but nothing
seemed to stop it. I also felt a dependency on Depends. When I could go a month
or so without an accident or a close call I would begin to try and live without
them. Someday I knew I would wear regular underwear again! I swore I would
defeat the demon!
A
week after I finished doing the 10 fecal transplants I was doing well. I
lowered my prednisone to 5mg/day without any ill effects. My stools were still
soft and I was going 5-6 times per day. I noticed that if I had my afternoon
cup of coffee I usually had to go again but if I didn't I wouldn't have another
BM for the rest of the day. I stopped getting up in the middle of the night
also and was sleeping much better. My swollen gland under my jaw settled down
and the pain in my ascending colon was gone. I was eating and drinking anything
I wanted which was very enjoyable.
Since
I was still on 2 - 1.2 gm Lialda/day and taking prednisone I couldn't know for
sure if the fecal transplants had cured me yet. In the past when I was down to
5mg/day of prednisone I would start having problems but I hadn't been on an ASA
medication (Lialda) for a long time so that may have be affecting things. I
guess I wouldn't know for sure until I was totally off all medication. I was
hoping to see more improvement by now, hoping my stools would be more solid and
I would be going less. I took a couple Imodium pills one morning and only had
one cup of coffee to see if that would help. I went a couple weeks without an
accident so I decided to try and go all weekend without adult diapers. That
felt great! Sleeping through the night was also wonderful.
I
started exercising again. I was doing a light 10-15 min. workout in the
morning, including crunches, rowing, pushups, toe touches, and deep knee bends.
I gained more weight and was now at 186+. I had alot of shirts that no longer
fit and some of my jeans were too tight now so I decided to buy some new
clothes to celebrate! Some joy was returning to my life after all these years
of suffering.
I
was experiencing joint pain and my right shoulder started hurting really bad for
no apparent reason. My knees hurt a bit when I walked but nothing like they
used to. My left knee was feeling really bad as though it would allow my leg to
go forward. Straightening my leg out all the way was painful. I could still
feel this but it was much less and I thought that exercise would help. Overall
I was at about 90% and had much improved energy. My spirits were up and I was
very hopeful. When I thought of the past 7 years I was amazed at what I had
been through and how much pain I had endured. The diet was so stifling to our
lifestyle. It was so nice to be able to stop and have lunch anywhere we wanted.
I had no urgency and had to go badly on the way to work one day but was able to
hold it for over 10 minutes! There is life after UC!
I
was doing pretty good but noticed some changes in the past few days. I was now
at 4.5mg/day prednisone and taking 2 - 1.2 gm/day Lialda. I had more gas and
some wetness but no blood. That made me anxious. I had some urgency and close
calls too. I went alot the following day, 9 times. I even went a couple times
before bed and that was unusual. I felt a bit down again and was afraid that I
was going to start flaring. I thought I might do more transplants but only
fresh and in the evening before bed if possible. I was not ready to give up
yet!
I
thought about going back on the SCD but really didn't want to. I was trying to
eat better during the week but got a little crazy on the weekends. I knew this
might have been be foolish. I had two beers and some vodka on Saturday night.
We danced and had a good time. I didn't notice any digestive issues Sunday
morning but I had a bad headache most of the day. I thought it best stop
drinking beer for now and stop mixing alcohols. I had cake and Ice cream on
Sunday and didn't have a reaction. I ate at TGIF and didn't even have to go
until right before bed and it wasn't an emergency. Many times at restaurants I
would get my food and take one bite and have to run to the bathroom only to sit
there with nothing happening. I felt bad for my wife who had to eat alone quite
often. The sensation is called tenesmus. When your bowel is inflamed you feel
like you have to go all the time. It's enough to drive a person crazy! I had
been going without adult diapers but I did get nervous so I thought I would
stick with them for a little while longer. I hated to depend on them but it's a
crutch I was not ready to give up just yet.
I
gained another pound and was now at 187+. I was still exercising and increasing
my reps. It felt good to have some energy back. I still worried and this
condition had me conditioned to worry. I knew it would take years to heal both
physically and emotionally. I continued to hope for the best. Maybe a few more
transplants were needed. Only time would tell.
I
did another transplant. It was difficult and I had to do it 3 times before I
was able to hold it in. That was hard! I felt much better later in the week,
with much more energy and I started to feel positive about the FMT again. I had
tried so many things without success. I didn't want to be let down again. I was
cautiously optimistic.
We
had a Birthday party for my 10 year old granddaughter on Sunday. I had fun and
it was so nice to join in on the snacks, cake and ice cream. I saw a little
blood on Monday morning and that really bummed me out. Not dark red but more of
a pink color but there was no denying that it was blood. This may have been related
to eating so much sugar on Sunday. I didn't have diarrhea but did have some
urgency. I saw a flash of a future that included Remicade or Humira or even
surgery. Man that was scary! I sure as hell didn't want to go there.
I
stopped taking the protein breakfast replacement shakes and lowered my Prednisone
to 4mg/day. I was still taking Lialda but wanted to stop taking Protonix soon.
I weighed 189+ now!
After
seeing the blood on Monday morning I was really depressed. I didn't see any
more the rest of the day or the next morning so I was hopeful again. I was
having too many bowel movements each day. I went 9 times that day! That was
hard on me and even though I was not having diarrhea I had some urgency and had
a really close call at work. This shit was nerve racking!
It
was nice to go out on Saturday and have a few drinks. I stuck to Tanqueray and
tonic and stayed away from the beer. I had a slight headache on Sunday but
nothing too bad. I enjoyed seeing some old friends and they all were amazed at
how much better I looked. I didn't talk about UC but just said thanks. I also
didn't talk about my sickness with my family at the Birthday party on Sunday.
That was awesome! I realized that I am not one of those people who like the
attention that sickness brings (Munchausen syndrome). I wanted to be better and
I longed for a day when I wouldn't have to think about UC. There was a bright,
beautiful future for me and I knew it was going to start soon!
I kept a
journal of my healing. It's the best way for you to see how the healing occurred.
It took many years to get sick so it would take quite some time to get better.
11/20/2013
After
lowering the prednisone dosage below 5mg per day I always seem to have
problems. This time was no different. All last week I noticed more mucus and
looser BMs. I ate dinner at Bob Evans on Friday evening and had the chicken
Alfredo penne pasta. This brought on a bad reaction. I was thinking I was going
to end up back in the hospital. That's how bad it was all through the night. On
Saturday morning I upped my prednisone. I took 5mg then and 5mg at dinner. My
system settled down and I was fine by Saturday evening. I can tell you now that
I was really scared as I have spent too many holidays recovering from flares.
I
actually started bleeding Friday night and even today noticed some blood.
Nothing heavy but undeniably there. I thought I was in remission and healed up
inside but this leads me to believe that wasn't true. Does prednisone simply
mask the symptoms? That's what my GI said. Maybe he is right. I don't really
know the best course of action to take now. I can still function with
prednisone and I hate the idea of trying something else. I don't want to have
my colon removed either. This really sucks!
As
you know by now my idea was that after doing a series of fecal transplants I
could wean from the meds and be cured of UC. I believe it takes a long time to
get everything back to normal. My tentative plan now is to stay at 10mg
Prednisolone until the end of the year and then slowly drop back to 5mg and
wean to zero slowly while watching for any problems.
1-6-2014
The
New Year is here and I am still doing pretty well. I made it through the
holidays without any issues. It is taking much longer than I thought it would
but I am beginning to think the fecal transplant worked. I have been off Lialda
now for a week without any noticeable changes. I have lowered my prednisone to
7.5 mg per day. I still go too many times a day but I think it's because of the
damage to my colon. I won't know for sure until I am totally off the meds. Like
I said I am still hoping I am cured.
1-23-2014
I
am down to 3mg prednisone per day and am off all other drugs except 1 Protonix
per day for heartburn. I have been eating anything I want and gaining weight. I
am currently holding steady at 193. I still go to the bathroom a lot but no
blood and I am beginning to have more control. This is great! I received my
bacterial data back from American Gut a few weeks ago and sure enough it shows
that my bacteria is a lot different than the rest of the people who had the
test. I will expound on this more later. For now I feel great and am doing
well. I am beginning to think that this will be successful after all!
1-28-2014
I
have an appointment with Dr. Bansidhar this afternoon but I am going to cancel.
I just don't want to see him. I am feeling pretty good and I believe I am on my
way to being cured of Ulcerative Colitis. As of Sunday I am on 2mg/day
prednisone and 1 Protonix. I started taking 2 Tablespoons of extra virgin olive
oil per day also just I because I think it is good for me. I am still making
the protein meal replacement shakes with the Warrior Food a couple times a week
to keep my Albumen levels up and 1 to 2 vitamin B-12 shots weekly (intramuscular).
I
have 8-10 BMs per day and they are small and sometimes formed. I have no gut
pain, no gurgling and very little gas. I am eating what I want and weigh 193
lbs. now. I have started taking Epsom salt baths 1-2 times a week to see if I
can relieve some of my joint pain. The joint pain is mainly in my knees but I
also feel stiffness in my lower back. My wife says maybe that's just because I
am getting old. I just laugh at that! I have no bleeding and have not had an
accident in well over a month. Last Saturday evening we went to our club to
hear some live rock music and do some dancing. I had to take a crap as soon as
we got our drinks. I went into the men's room and the toilet was occupied and
there is only one stall so I had to wait. I waited over 10 minutes and was very
proud that I could hold it that long. I didn't have a diaper on either! We
danced and had a great time the rest of the evening!
Now
I would like to go over the results of my American Gut sample. If you haven't
heard of this it's a group of scientists that have joined together to study the
micro biome (what bacteria we have in our guts). Here's a link if you're
interested in learning more about the project www.americangut.org.
My
sample shows that the bacteria in my gut are quite different than the majority
of other people's samples. I have high levels of Firmicutes, low
Proteobacteria, very low Bacteroidetes, and moderately high levels of
Actinobacteria. Other samples show some Tenericutes and Cyanobacteria but mine
has none. Isn't that interesting? It's no wonder that I have found some balance
after doing the fecal transplant. This test proves that my bacteria were out of
whack and I am so glad I spent the money to verify that!
I
believe the problems I am still having are related to the damage my colon has
experienced from the long bouts of diarrhea. I am healing very slowly. I think
this is the cure and I will continue to update you on my progress. Please feel
free to ask questions and I would highly recommend that you consider FMT if you
are suffering from Ulcerative Colitis. The idea that our immune system is
malfunctioning is wrong. It is functioning as it should considering the
condition of our systems.
2/10/2014
Last
week I increased my intake of extra virgin olive oil to 2 tablespoons in the
morning and 2 in the evening. I noticed that I started having looser stools and
Friday it felt like I was pooping acid! I didn't take the Friday evening dose
and haven't had any all weekend. I feel much better today. Extra virgin olive
oil is hot when you swallow it and for me it was hot coming out too. It may
benefit some people but not me.
I
quit the prednisone Saturday and cut my Protonix by half. I feel great today
and haven't gone more than a few times. I think I may have a donor from outside
the family for doing another transplant. I believe I would benefit from that. I
plan on doing only one and seeing how it goes. It's been a long time since I
was able to get off prednisone and I am happy about that. I am still eating
anything I want but being careful to eat mostly healthy. I love pizza and honey
mustard wings. I can also have pasta and bread without any reaction.
I
am very happy I did the fecal transplant and am still healing. Life is good and
I have planned a vacation with my wife in the late spring. I feel like I have
my life back!
2/24/2014
I
decided to see my GI doctor even though I don't need to. I guess it's like
paying a retainer to keep him on. I can take my info from American Gut and show
him the disparity of my bacteria. It will be interesting to hear his thoughts
on that. My appointment is today at 4:30. I am sure he will not be happy that I
quit the Lialda. I hate taking medicines that don't seem to do anything. I
think they can cause more problems.
I
have been feeling steadily better, especially this weekend. I still have many
BMs throughout the day, averaging 8-10. I only went 5-6 times on Saturday and
today only 4 so far. That's pretty good for me. As I have stated previously, I
have damage to my colon therefore I have to relieve myself often. My stools are
still soft but not diarrhea. It's just a matter of time until I am totally
healed. I have no gut pain and don't have to run to the BR.
I
have been trying to find a donor outside the family but am finding it
difficult. I think if I could do another couple transplants I could speed up
the process. It takes a long time for the bacteria to stabilize and for the
balance to be found. I am on the right track and haven't felt this good in
years. I have some joint pain in my knees. This may be something I just have to
live with.
I
hope you try fecal transplant and it works for you as well as it has for me.
Good luck!
3/25/2014
I
am still improving. I did another transplant from a male donor outside the
family. He was hesitant which can easily be understood but finally saw it as a
good thing. I had a hard time doing that one. I tried 3 times before I was able
to hold it. I did not think it would be that bad. I think it's because I'm full
of shit now. Hahaha! I have gained back almost all of the weight I lost since I
first got sick. I was 220 then (slightly overweight) and am now holding steady
at 196. I can't say I am totally 100% but I am doing well and able to function
again. I believe that the healing just takes a long time.
I
saw Dr. Bansidhar last month and he was amazed at how good I looked. He wanted
to schedule me for an upper GI but I refused this. I am tired of the tests and
his explanation was that he wanted to see if there were any stomach issues
because of my heartburn. I have been on Protonix for a few months now but
finally quit those cold turkey last Friday. I should not have done that. I
should have gone to an H2 blocker and then weaned off of that. I got really bad
heartburn Saturday and Sunday. It's called bounce back. The Proton pump
inhibitor stops the stomach from making acid and when you take it away the
system bounces back and creates much more than needed. I started taking fresh
squeezed lemon juice in a glass of warm water in the morning to see if that
would help. I also take 1 tsp. of baking soda in a glass of water when the
heartburn gets unbearable. I didn't have heartburn very much when the doctor
started me on the Protonix. He wanted me to take it because the prednisone is
hard on the stomach. I wish I had not started taking it. I do not want to be
dependent on any drugs.
I
totally believe in the fecal transplant as the cure for Ulcerative Colitis!
4/8/2014
I
think I found the cure for my heartburn! After stopping the Protonix I had a
couple real bad episodes. I would take baking soda or a Tums at home but when I
was away from home I didn't have anything so I drank water to quash the burn. I
found that the water helped right after I drank it but the heartburn would come
right back and would sometimes get worse. This got me to thinking about water.
I started drinking a lot of water nearly 30 years ago with the idea that
hydration was imperative. I still think it is but I don't know if everyone
needs to drink a lot of it and I actually think it was causing my heartburn! I
did an experiment yesterday and drank much less. No heartburn all day. Today I
squeezed lemon in my water bottle and have only been sipping on that. Still no
heartburn. Is it possible that the water has been diluting my stomach acid
causing indigestion? Seems possible. I am going to continue to limit my water
intake and not drink at all with meals to see if this is really the answer. I
feel pretty confident right now.
I
am still feeling pretty good. My stools are not perfect and I am going more
than I want to. I am having a lot of gas too. The only way to tell if the FMT
therapy is a success is to wait and see. I am doing better than I have in years
and am pretty convinced that this is the answer. Getting the gut bacteria
balanced may be a lifetime project.
I
read an article about Rheumatoid Arthritis patients having increased
occurrences of IBS and IBD. The article attributed that to steroids and Nsaids
and said to contact your doctor. It also said that not much was known about the
causes of these conditions and that they were auto immune diseases. Bullshit!
These are conditions caused by prescription drugs or bacterial imbalance and
they do not know how to treat them because their drugs are the cause. They are
afraid to look at bacterial imbalance because every system is different and
they can't figure it out. They want easy answers and so do we. I hope American
Gut can find some real answers with their studies. That is the only hope for RA
and IBS/IBD patients!
4/21/2014
I
went out of town for a couple days for the Easter weekend. I don't know if it
was the stress of driving or staying in a motel room, eating differently or
what but I did have some urgency and actually had an accident on the way home.
I took Imodium last Monday to help me get through a day of meetings at work and
it did help as I had no problems but I think I got a little backed up. I always
seem to have to pay later when I take Imodium. I am going to avoid it from now
on.
I
am feeling good even though I did see some trace amount of blood over the
weekend. I weigh 193 now and have been holding steady there for the past couple
months. I notice a lot of wetness in my BMs lately and some mucus also. I saw
white streaks the other day and Googled it. It said it could be the result of
the gall bladder not processing fats. I think it was just mucus. I feel better
today and had our family's traditional Easter soup yesterday and some cheese
cake that my mom makes every year. When I was on SCD I thought that I would
never be able to eat these things again so that was a real treat after 6 years!
I
started walking again at lunchtime. My knees have felt like they could let my
legs collapse and when I tighten my knees up and push my lower leg forward I
feel pain. Walking seems to help and my knees feel a little better. I have to
be careful. I feel like if I'm not I could fall and pull something and get hurt
badly. I never felt this until I got UC. I tried a rowing machine and I tried
deep knee bends which I can do easily but these exercises don't seem to help
much. I decided to ease back into exercising this morning with some crunches,
pushups, toe touches and stretching. I can't wait to start riding my bicycle again!
5/15/2014
I
am continuing to improve. My only problems stem from damage to my colon from
the doctors waiting too long to help me. I get very angry when I think about
how they put me off and how I may have to suffer for the rest of my life
because of it. Even though I am not having diarrhea I still have urgency. When
I have to go I have only a few minutes to make it to the restroom. This isn't
always convenient and I am having accidents on rare occasions. If the doctors
would have put me on prednisone immediately I would have avoided the damage and
might be 100% right now. Bastards!
Enough
of that. I told you I had started taking walks again and that has been awesome!
I dropped 5 lbs. recently and was worried until I realized that it was just
because I was getting that mile+ walk every afternoon. My knees still ache and
I have a lot of stiffness but it seems to be improving. Maybe I will try to
find a natural remedy for joint pain. The peppermint tea helps for the
heartburn. That has subsided to a manageable level. I have most of my energy
back and am once again taking projects on. My most recent venture is learning
to play the blues harp and repairing, tuning, and customizing harmonicas. I am
in the process of building a harmonica tuner. That's pretty exciting and I feel
like my old adventurous, inventive self again. I don't know if I will ever be
able to play music for a live audience again because of the bathroom
emergencies but maybe someday. I might even talk to my GI about surgery to
repair the damage. Maybe. Probably not.
6/6/2014
My
weight is holding at 193. I wish I could get back to exercising daily. It seems
like every time I start I end up with some kind of pain. I did 20 crunches on
my incline bench before I went on vacation and ended up with a pinched nerve in
my back. It didn't happen right away but lasted all week. It was actually more
in my left hip and then moved to include my right hip also. Then I got another
pain in my back in the Latissimus dorsi m. muscle that hurt until today. It's still
sore but feeling much better now. I won't stop trying to stay in shape. Monday
I will start my routine again. The walking has helped my knees even though I
feel that collapsing feeling like my knees are going to buckle backwards. I
hate that!
Last
week I was on vacation. It was great to get some stuff done around the house
and to get out of town for a couple days. I drank a couple beers early in the
week and then had bad gas the rest of the week. Honestly I don't know if it was
the beer. I seem to be cycling. I do well for a day or two and then I do badly
for a day or two. I did see a small amount of blood last week. Nothing like I
have had in the past but I am still having to go to the bathroom 10-15 times a
day. When I have a gas attack I feel like I have to have a BM (tenesmus). Many
times I go to the bathroom and nothing happens. I get tired of that so I hold
off on going to the bathroom and inevitably I have an accident. I still wear
Depends Real Fit. They are great and have never let me down. It sucks but that
is my reality these days.
I
want to improve so much more. I don't want this urgency. I don't want the gas
attacks. What should I do now? The 10 days of FMT really did a lot. I am not on
any meds. I think the next step is 10 more days of transplants. Dr. Bansidhar
wants me to get another colonoscopy in August. I will hold off until summer is
over. I want him to see that I am cured so I need to plan for another round of
FMT soon. I am not looking forward to that but what options do I have? I want
my life back dammit!
7/7/2014
I
had a really nice Fourth of July weekend and didn't have many problems. My
system seems to be functioning properly even though the damage is still
evident. I am processing food well and gaining nutrients. My BMs are formed
though I still have wetness. I have gas attacks still and feel some urgency but
all in all I am much better than I was last year at this time. I was able to
swim in the pool with the grandkids without worrying about having an accident.
Last year I put a bucket in the garage just in case of an emergency. I never
used it but I had it available.
I
started exercising 3 weeks ago and managed to go 2 weeks, 4 days per week. I
was doing stretches, pushups, crunches, rowing, toe touches, weight lifting and
a few other light exercises. I stopped last Monday because of stiffness in my
back. I have been walking and riding my bike daily also. I plan to start a
light routine tomorrow. I do it easy to get in the habit. I will start at 10
reps and work my way back up to 50, that's where I was before I got sick.
I
am going to the bathroom a lot. I feel like I have to go bad but often when I
sit down I don't produce much. Up until recently I would have to go every time
I started to eat. That has stopped and I can now go to a restaurant and eat a
meal and not have to excuse myself. That is awesome!
I
did an experiment and ate 2 cream filled Dolly Madison chocolate cupcakes from
the machine here at work last week. I know it was foolish but I was so hungry!
That evening I had D and was up a lot throughout the night. I suffered for a
couple days with gas and actually thought I was going to flare. My system
settled down then and I went back to normal. No more super sweet junk foods for
me! I am able drink a beer or two without noticing any changes. I enjoy that. I
also noticed that when I have a few vodka and tonics on Saturday night that on
Sunday my BMs are more solid. I decided to try 2 shots of vodka medicinally
before bed to see if it would help my system. It didn't really do anything but
make me more tired in the morning. I am quitting that. I tried some coconut
water last week but got D from that. My wife read that it was real good for the
digestion among other things. I think I drank too much and am going to try it again
this week in smaller quantities.
I
keep looking for something that will help me step up to the next level. I have
gained some footing this past month and feel better. I feel hopeful that I will
continue to improve and someday be normal again. Well, as normal as I can be!
8/5/2014
Here
we are in August already. Holy shit this summer is going by fast! We have had a
lot of rain here in Erie, PA and it has been an unseasonably cool summer but I
have enjoyed it very much. That's because I don't have Ulcerative Colitis
anymore and I am feeling great! Through the first weeks of July I was still
very gassy and had a lot of wetness. I felt myself getting better the past week
and today I feel wonderful! I have been going less and feel much more
energetic. It's like I have been taking little tiny baby steps and suddenly
took a big step! I don't know what caused that but I know it's good. My gas is
way less and I am not running to the bathroom all day long. I can eat and drink
what I want (including extreme sweets like cake) without any problems. I am
sleeping well and enjoying doing all the things I used to do before I got sick.
My wife and I don't talk crap anymore either. When it was consuming my life it
seemed to be all we talked about. I am loving this!
I started
taking an iron supplement (Gentle Iron) last week. Maybe that has helped me
step up. I had to start taking Omeprazole for my heartburn on Sunday. I tried
everything and was starting to take too many Tums again so I decided it was
necessary to medicate. After only 3 days I am heartburn free. I think the H2
blocker is better than the Proton Pump inhibitor. I wasn't having Gerd, I was
getting burning low in my stomach and was afraid I might be getting an ulcer. I
will let you know how it goes with this. I really don't like taking medicine
for long term. It was getting so annoying that I had no choice. It pisses me
off that my flexible spending plan will not pay for over the counter meds.
That's just wrong!
I
started taking a protein drink in the morning again. I had some leftover
Warrior Force so I figured I might as well use it up. I wanted to boost my
Albumen levels again now that I am not having D to allow my body to repair the
damaged tissue in my colon. It seems to be helping. I also started exercising
again. I like the way I feel after a light workout. I haven't been riding my
bike much. I have to start doing that again. Winter isn't that far off.
I
still wear the adult diapers but am planning to stop those soon. I only had one
small accident last month so I think it's time to start thinking about giving
that security blanket up. I hate wearing a diaper in the summer. It's so hot
and irritating. I remember when I was a kid thinking about how some old people
have to wear a diaper and how weak they must be. Like it was something they
wanted. I am the old man now. It sucks. It's embarrassing and I can't wait
until I can live without them!
Dr.
Bansidhars’ office has sent me some reminders 'time for your colonoscopy'. I
thought it over seriously and have decided not to get another one. It's
invasive and can cause a lot of problems. I feel great and am healing nicely
and don't want to do anything to disturb my progress. He worries about me
getting cancer but I am not worried. I guess I don't have any faith in him or
any doctors. I know he cares but I think he may be brainwashed by the system.
He wants to make money, he needs to make a lot of money to continue his
practice. I am not saying he is just in it for the money but it is a reality in
the world we live in. I am going to take my chances and hope for the best. If I
didn't have to pay so much for insurance and flexible spending I could retire
much earlier. It sucks. I pay so much but don't want to go to the doctor. I
don't think they can help with chronic illness. I keep my insurance for major
medical emergencies. That's it.
That's
all for now. The fecal transplant worked for me. If you are like me and want to
get back to normal I suggest you give it a try. You have nothing to lose and
everything to gain. It's not that bad and I am very glad I did it. Life is fun
again!
8/25/2014
I
have been going without adult diapers for 2 weeks now and things are going
well. I have not had any accidents. I do wear them when I go somewhere and am
not sure if there will be a bathroom. I have gained a lot of confidence and
soon won't have to wear them at all. That is huge!
I
wanted to correct something from my last post. I said I was cured of Ulcerative
Colitis but I am still seeing some blood even though I don't have D or urgency
and have been making solids for a while now. I don't know if the blood is from
a damaged colon or if I still have ulcerations. I only see a small amount of
bright red blood after I go in the morning and usually only on Monday morning.
Usually I make a nice solid and go a lot and then see the blood when I wipe. I
also have some wetness still and sometimes make small white raisins. I also see
white streaks in the solids sometimes. It's weird. I know I am doing much
better and have resumed living my life. I guess I need to have a colonoscopy
and let the doctor tell me I don't have UC anymore before I can make that
statement with assurance.
That's
all I wanted to say for now. I am doing well and I truly believe that fecal
transplant is the answer.
10/28/2014
It's
been a couple months since I wrote so I wanted to give an update. I had an
amazing weekend. Went to see the Canadian rock band Big Wreck at the Town
Ballroom in Buffalo on Saturday. Had a huge dinner at the Bijou including salad
with my favorite dressing - blue cheese, caponatina for an appetizer, a couple
of Labatt Blues (bottle), chicken pot pie for the entre', and apple crisp with
vanilla ice cream for dessert. I do not miss the SCD at all! I have had a bad
cold for a couple weeks and am not completely over it but I enjoyed the show
anyways. It's so great to be able to go out again!
Here's
where I am at in my healing. I am having less bowel movements, averaging about
5 per day. I have found that draft beer really does upset my system where
bottled or canned does not so I am avoiding that. I still see a tiny bit of
blood from time to time and have some wetness but that seems to be lessening. I
am much less gassy and my BMs do not smell that bad. I quit the adult diapers
completely and have not had any accidents. I can actually hold it for a while
and am beginning to get over the panicky feeling. I am taking Omeprazole. I
have tried so many things for heartburn and some actually helped but the main
issue is that I get it when I am doing something physical. I need instant
relief and do not want to take Tums so I am staying on the H2 blocker for now.
Maybe someday I can figure that out too. I take an Iron supplement and a B
vitamin daily. I am exercising 4 days a week in the morning. I walk at
lunchtime, a little over a mile. My knees feel better but I have some pain in
the joints. It's not as much pain as discomfort and I still have the feeling
that my knee might buckle if I kick my leg out too far when I'm walking. I feel
improvement but it's a slow, slow process. My weight has leveled off at 191 and
I think that is perfect for me (I am 5'10" tall). I was using Aussie
Freeze on my hair (I have long hair) to keep it from looking crazy but noticed
that I was losing a lot. I clean the shower drain every Friday and was removing
a lot of hair out of it. I changed from that product to Argan Oil and in the
past few weeks noticed a dramatic lessening of hair in the drain. My wife told
me that the Aussie wasn't good for my hair and she was right again!
I
have many random thoughts about what I have been through and sometimes feel
very angry at a medical system that let me get so damaged inside. Healing the
colon is like trying to heal a broken leg while jogging. It's a slow, painful,
almost impossible process. If I had gotten proper treatment and a fecal
transplant sooner I would be totally cured by now. If you think about it we are
all pretty much screwed. I have decent insurance (I pay $250 deductible and 20%
of the total which I think is bullshit!) so the incentive for the medical
community is for me to have expensive surgery and/or meds. If I get better they
make nothing. I believe that doctors would want to help but they are blocked by
the insurance companies and by fear of being sued. I would like to find a
doctor that I could pay cash. I would even pay him a yearly retainer fee. I pay
$80 a week for insurance and I have $40 a week taken out for my flex plan.
That's over $6000 a year and I am afraid to go to the doctor! I am afraid that
they will look at me and see dollar signs! I would be willing to bet that there
are doctors who are getting tired of this system and would consider taking a
limited number of patients on retainer and a cash basis only. Drop the
insurance, promise not to sue and form a trusting relationship. That's
possible!
12/4/2014
I
had a very nice Thanksgiving holiday. I didn't stuff myself but it was nice to
be able to eat anything I wanted without fear of flaring. I am healing and
getting better every day. When I think back to how I was a year ago I am
amazed! I feel normal again. I am losing the fear of having an accident because
I can hold it now. I have held it for an hour! No more panicking, no more
diapers, no more Ulcerative Colitis. I am seriously considering going without
medical insurance. People think I'm crazy when I say that. What I think is
crazy is paying into a system that wants me to stay sick. I don't want their
drugs. I don't need them telling there is no cure for my condition or that I am
a defective person. I don't live extravagantly by any means but I cannot afford
insurance anymore. I am in debt and it is getting worse. I need that 6K!
2/3/2015
Had
a wonderful Christmas and a nice quiet New Years. My health is improving even
though I have continued to have some wetness and a small amount of blood when I
wipe some mornings. I believe this is due to the extent of the damage that
occurred while I was flaring. If I had one word of advice to give to people
about UC it would be to not wait until it gets so bad that you have to be
hospitalized like I did. It seems that once you get so severely damaged you may
never heal completely. One thing that prompted me to write today is a major
improvement I have had recently. I quit drinking flavored vodka and tonic water
and my gas has gone way down. I have solids every day. I also noticed that
fruit seems to make me gassy as well so I keep it to a minimum. I can eat and
drink anything but I have noticed some foods cause slight reactions, mainly
gas. With the wetness I sometimes experience, gas can be a problem (can you say
sharts!).I gained another pound and now weigh 194. I have been exercising and
my previous energy level has returned. It's great to be able to do things again
without worrying about where the bathroom is. I still get nervous when I have
gas but am doing so much better. It takes a long time to heal physically and
mentally. I am so glad that I did the fecal transplant. I decided to cancel my
medical insurance. My wife agreed and had me cancel hers too. I was a bit
nervous but we made it through January and we're both still alive and doing
well. There is a sense of freedom when you know that if you need a doctor he
won't be looking at how much you are worth. My father didn't trust doctors. He
isn't on any meds and just had his 85th Birthday! There are good doctors and
there are times when you need a doctor. The for-profit medical system in this
country is wrong and we all know it. Can it be changed? I don't know but as an
act of civil disobedience I protest being forced to pay into a system that I do
not value or trust.
3/23/2015
I
am convinced that I am cured. I have not had any major set-backs since I began
this process. There have been times of doubt but I haven't flared. I took
another step up in my health recently and I attribute that to changing my work
schedule and possibly the hemp protein I began taking in the evenings. I feel
very happy these days. I am getting back into my music and my energy levels are
almost back to normal. I continue to heal seeing very little blood and having
less and less urgency. I haven't had any prolonged diarrhea since I did the
transplants. I do not wear adult diapers on a regular basis anymore. I only
wear them when I am traveling or someplace where a bathroom is unavailable. I
highly recommend this therapy. It has been amazing to have my life back. I just
wish I didn't have so much damage done to my system. It could have avoided, had
I known about FMT sooner. I blame the doctors for that.
4/21/2015
I
quit drinking draft beer completely since I was having a lot of gas. I
didn't want to blame it on beer but since I stopped drinking it my gas has gone
way down. I always enjoyed beer but have switched to Twisted Tea. It's pretty
good and doesn't bother me at all. I continue to heal albeit very slowly. It's
weird though but because of the damage to my colon when I have to go I feel
like I have to go now (tenesmus again). I can hold it but as I walk to the
bathroom I feel this nervousness and anxiety like I'm not going to make it.
It's psychological damage. I don't have accidents anymore but I still have
anxiety. I think this will eventually go away but it takes so damn long. Things
are going good and I have no fear of relapse. FMT was the answer for me.
4/5/2016
I
am cured! It's been almost a year since I last wrote and the healing has
continued. I bought a new guitar recently and have been playing again and am
getting back to songwriting. I have had my energy return and UC is no longer a
part of my daily life. I feel wonderful and this experience had made me so
grateful for my health. I eat and drink anything I want, I don't have any more
symptoms and I am living again. I hope my story has helped you to have hope. I
want you to be cured as I was. Do what needs to be done and get back to living!
There is so much more I would like to say about what I have been through
but I think a few main thoughts will be enough. The feeling of helplessness you
get when you are diagnosed with an incurable chronic illness is absolutely
terrifying! I spent 10 years, all of my fifties on this! I will be 60 this
coming Sunday May 29th and there is only one way I can see any good
coming from what I suffered. That is to help others. When I hear stories of
people, especially children who have been diagnosed with bowel disease I feel
so sad. To think of their lives being put on hold or maybe even ended by a
condition that is totally and easily curable just makes me want to cry. A
person who has not suffered with this cannot begin to comprehend its horrible
reality. We go to the bathroom and forget it. We take its simplicity for
granted. Imagine getting up every half hour after going to bed at night,
imagine lying in bed so tired and worn out that you can hardly move but still
you have to get up because otherwise you might have an accident. Imagine being
in the shower and having an attack. Trying to drive to work or just make it to
Country Fair. Imagine not being able to make it and pooping in your underwear
while you’re driving. Imagine your wife or husband sitting in the car with you
suffering the smell and the inconvenience of having to turn around and drive
back home. You cannot make any plans. Imagine not being able to go anywhere
without knowing if there is a bathroom available. You are at a restaurant and
find that the single stall bathroom is occupied. You are at work and have an
emergency and the restroom is full, you make it to another restroom and it is
occupied also. You have an accident at work! You make it home and are so tired,
bleeding, but the lawn needs mowed or the snow cleared from the driveway. You
are starving but do not want to eat. The pain in your belly feels like an angry
weasel is living in there. You call the doctor and they tell you to take some
Imodium. You live moment to moment in terror. You feel like you have to go but
are not sure. You try and nothing happens. How long do you sit on the toilet
and wait? You finally give up and leave the restroom but you feel like you have
to go again. You are home watching TV with your loved one and five minutes into
the show you have to go to the bathroom, fifteen minutes later you try again
but you still feel like you have to go. You wither away little by little until
nothing is left. You end up hospitalized with only one option. Removal of your
Colon. Even after that you can have serious problems. You can even continue to
have UC! This shit has changed me forever. Sure I can joke about it. I am
living proof that UC is curable! I am strong again! I am healthy and living
fearlessly. Life is good and I am glad that god didn’t answer my prayers. I
asked him to let me die. I begged him! I
don’t even believe in a traditional god and yet I pleaded with him to take me.
I hope to get back to making some new music soon. This time I am going to write
songs that are happy. Songs of love and hope. Songs that inspire and
strengthen. Yes I am happy to be alive. Happy 60th Birthday to Me!