My whole story

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Joined
Feb 17, 2009
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Revised upon request from ding

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. Currently 165lbs :)


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.
 
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thank you so much for writing that all out for us, Stleg... i know it was crazy late at night for you, and a lot of not so nice memories to revisit while you were typing... but having heard some of your story earlier, i just thought it would be fantastic to have it here for all to read.

a lot of people have difficulty understanding how herbal medication & alternative treatments can work. personally, i don't understand it fully, but i do believe in it. i've seen too many people improve with various conditions by these means to be able to walk away and say it's a coincidence...

i'm delighted you found this doctor, and very sad that your GI acted in such an ignorant and unsympathetic way. the least he could have done (in my opinion) was say 'try it - and come back if you need me'.

like every medication, it may not work for everyone, and people may not be as lucky to find the herbal expertise that you did - but thank you - this thread might just end up helping someone who cannot tolerate traditional meds or who is looking for something alternative.
 
He was a specialist in Taoist traditional Chinese medicine, he made the pills at his office, I will email him and see if he will tell me what exactly he put in them, to be honest I never even thought of it, I was just so happy it worked but ill try to find out :)
 
I wrote a email to my doctor and this is what he said

Hi Patrick,
There normally would be no problem with me sharing the formula. It isn't a trade secret. However, because of the volume of patients coming through my door we have on hand only the files of patients we're currently working on, and all others are in storage, so it would take me a while to find it. The way I practice is that there isn't one formula for Crohn's Disease. Instead, I evaluate each patient differently and custom design a formula for that patient. I have somewhere around 300 different herbal extracts in powder form in my pharmacy, and part of the art of using Traditional Chinese Medicine (TCM) is knowing the quality of each of these herbs and what they do, and then selecting a group of them that will help that one patient. There is also an art to how the formulas are compounded. There is a main herb that directly addresses the chief complaint, and then various supportive herbs for other symptoms associated with that patient. Then there are herbs that move in the direction of the body where the symptoms occur. For instance, in the case of a woman with uterine fibroid tumors we'd add herbs that "move" the rest of the formula into the lower part of the body. Therefore, I could have 10 Crohn's Disease patients come into the clinic and they would receive 10 different formulas because, as I'm sure you're well aware, no two CD patients have exactly the same symptoms. CD is a disease description that contains a wide variety of symptoms, and many CD patients have symptoms that are not described in the medical texts that are unique to them. Therefore, one can't design a "one size fits all" approach to treating CD, or any other disease, with this type of medicine. Notably, the "one size fits all" approach is what the pharmaceutical industry tries to accomplish, which, as you well know, doesn't work out so well in many cases.
I hope this explanation helps. As I said, I'd gladly give you the formula prescription I wrote up for you, but it would take me some time to dig around for it. I wish you continued good health.
______________________________________________________________

I totally agree with him and told him I didn't want him to have to go through that much trouble. But as you can see he knows what he's talking about :).
 
Hello Patrick and welcome to the forum! :)

I am so glad you are getting the relief you need.

Make yourself at home here.

Nancy~
 
nancy i've been here since February lol but yeah ill see if he might have some colleagues near ontario or anyone he can refer
 
Geez, that's some crazy stuff. I can't imagine how scary it must have been to be in a comatose state like that, twice no less.

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.

How come? Was he mad that you went to someone else and actually had some success? :S
 
Hi Stleger. What an incredible story! It really put things into perspective for me. I'm so glad that you got some relief.

I take herbal remedies and homeopathic medicine as well as my medication. Recently I have seen some great improvements and not quite sure what is helping and what is not, but I truly believe that alternative treatments are really beneficial in supporting your body when it has to cope with medication and symptoms.

Thanks again for your inspirational story.

Amanda
 
Yeah he apparently didn't think much of alternative medicine, but I was gonna go with what was helping me ;-)
 
wow its great to now know your story!
jeez comas and everything? ugh thats scary. to anyone who thinks crohns is just a tummyache-this is proof that NO, this disease is serious and can kill.

where is this alternative doctor you see? as all meds have basically failed me too, i have been wondering more and more about the other therapies. unfortunatly, i got too serious and had to go with the surgery, but i defnitly am still interested in pursuing alternative things still
 
he practices in Tampa, Fl actually, I used to live in florida that's how I was able to see him and Pen sorry he said he doesn't know anyone in Canada :(
 

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