Hello Everyone

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Joined
Feb 17, 2009
Messages
257
Revised upon request lol

I was first diagnosed at 16 after several months of excruciating bowel movements and blood in the toilet. I kept all of this to myself because I was a teen and my mother had enough to worry about being a single mom w/ 3 kids. But I remember waking up and literally not being able to move, I was paralyzed by pain, like the feeling of someone putting you through a slow meat grinder. I was brought to the ER via ambulance and the doctors ran all sorts of test and came to the conclusion that I had crohns, this was my first hospitalization 16 yrs old 5'9" 155 lbs(last time I would be this weight for 6 years). The doctors scheduled me for a colonoscopy the very next day and referred me to a specialist GI. Well at this point I had been reduced to injesting nothing but pediasure in some hope that it something would be absorbed. I was expelling fluids from my body faster then I had ever thought possible and all the doctors could do was tell me this is normal for someone with my condition and I would have to wait for the test results. The results came back from the test to revel that I not only had crohns disease but one of the most aggressive cases my GI had ever seen. So I was immediately started on a diet of 36 pills a day taken orally with a proto foam canister to use whenever I had to use the bathroom, which at thsi point was every 10 minutes or so. But nothing they seemed to put me on seemed to slow the crohns down and my body was rejecting every single medicine they gave me with horrible horrible side effects. Then came MP6, which had just come out and they said it was my only chance before surgery was my only other option. All this happened over the span of 3 months time, my body reacted so bad to the MP6 that it sent me straight to ICU in convulsions, blackouts, muscle spasms which ended up with me in a "comatose state" for 91 hours. A week after I regained consciousness I had another colonoscopy to reveal that the aggressive crohns was even worse then before having scarred beyond repair 12 ft of my intestines and was fast making its way towards my stomach. The doctors basically told us if they didn't operate the crohns would make it to my stomach and I would start to hemorrhage and death is a high possibility at that point. But my mother found me a alternative doctor a taoist specialist in chronic illness. I was now 97 lbs and scared I was going to have to have the surgery but not even sure I would live through it because of the ghastly state of my being. But it seemed this guy knew exactly how to help me and I believe he saved my life, over the next 4 months I took 16 herbal pills of his making a day, along with the strict diet that I still follow today. At the end of the 4 months I had actually made it back to 110 lbs, I could eat soild food again and for the first time in months I had enough strength to walk without a walker of being in a wheel chair. I went back for another colonoscopy and my number had basically dropped off the charts, my insides where still scarred beyond anything but 90% of the inflammation was gone and the crohns had stopped progressing towards my stomach. He asked me how id been able to make such a turn around and I told him I'd been seeing an alternative doctor and he excused me from his office promptly and refused to see me after that. I stayed on the herbal pills for 7 months after that then eventually used them only to control flares and then not at all.

Several years later I had to have an appendicitis, I asked the doctor for a no card diet because I had crohns disease and I can't tolerate carbs. Also told her that the ct solution was bad for me and if there was another option. She dismissed all my claims and had me drink the ct anyway. Well I went directly into surgery, where they removed my appendix which was about 3 hours from busting. I had just come around after the surgery and had to wait 4 hours after I hit my nurse call button for someone to come in and see if I was ok, whole time i was waiting on pain meds for the surgery that had just happened. Well I went back to sleep finally only to wake up again several hours later with horrible muscle spasms and nausea and less then a half hour later I slipped into a coma for 23 hours. Turns out the ct had caused my kidneys to shut down (thank god they started working again) and between all the drap in the ct and the carbs I had to eat had given me the worst flare since my diagnosis and I just sorta slipped into a coma. I filed a complaint against the doctor and the hospital but nothing ever came of it. As soon as i left the hospital I went adn got more herbal pills from my doctor and was able to get it back under control within a week of heavy herbal medication and the dieting. Since that I have been flare free for 4 years this May. I control everything by diet and that is just fine by me.


I hope that my story can help people and show you that there are other options out there besides all the meds and there's life where crohns takes a back seat. I'm currently a full time med student pursuing my MD in radiology so I can help people and they won't always have to deal with a close minded person in a white coat.

I hope my story helps anyone who thinks its hopeless.
(I'm also posting this diets)
 
Last edited:
Hi Patrick!! Welcome to the boards! I was 12 or 13 when I started getting sick too...but I wasn't officially diagnosed until about 3 years ago now...when I was 23. I was also able to control the Crohn's at first with diet, but I had a major complication, and am now on meds, but for a while, I was able to totally control it with diet and exercise.

I really hope that your CD doesn't rear it's ugly head at you, and that you are able to continue doing what you are doing and that it will keep working for you!
 
hi Patrick, welcome to the forum :)

great to read that you've found a way to manage your Crohns and get control of your life again. i agree, it is a bad thing to cope with when you're still a child.

i too would be interested to hear what the diet and the herbal medicine is.
 
Patrick, I was diagnosed when I was 16 (37 years ago now) and I was horribly ill at the time, didn't really see any light at the end of the tunnel. I went on to have a rather active life for a lot of years... getting a bit creaky now, though!
 
Hey Patrick.
I'm 20 too, was diagnosed at the age of 6! But have never really spoken to anyone else with it, so that's also why I joined here.
What's the carb diet????
 
welcome patrick! :) I'm 23 and was just recently diagnosed with crohn's but have had issues since childhood...look forward to comparing how your treatment is going. There's tons of great people on here with a LOT of knowledge. :)
 

Latest posts

Back
Top