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Crohn's Disease Forum » Your Story » Introduction


07-02-2014, 05:38 AM   #1
Solster
 
Join Date: Mar 2014
Introduction

Hello all,

I've been signed up to this forum for a while, but have not had the chance to introduce myself yet. I've been suffering from the symptoms of Indeterminate Colitis (although they think it's probably Crohn's) for a few years now, but was officially diagnosed last summer after checking myself into A&E because of severe diarrhoea, stomach cramps and feelings of sickness. After the diagnosis they put me on a steroid drip and then eventually on prednisolone once I was well enough to go home again. The medication worked wonders, but because of the side effects they obviously couldn't keep me on it and prescribed a lot of other things. I was stubborn though, and decided not to take the medication once I was off the steroids, believing that I could get things in control with diet and the advise of a herbalist (who'd actually helped me get similar symptoms in control the year before by going on a soup diet).

I played around with various alternative therapies like acupuncture and ayurveda, but none of them really had any effect and to be honest I never really believed in them and gave up pretty quickly. I really believed that diet could help me again though, so I retried the soup diet, juice diets, fasting completely and removing certain things from my diet (meat, dairy, sugar, gluten, etc). But I couldn't really stick to any of them and when I tried a complete water fast earlier this year (which another Crohn's sufferer claimed to have cured him) it actually triggered another flare-up after two weeks and I was put back on steroids. After that I was given the option of taking Azathioprine and although the possible side-effects seem somewhat worrying I felt I had no choice. Things settled down and I actually felt really good for a while, but the frequency of BM's/diarrhoea gradually returned and I had to consult my doctors again for new medication. They proposed biologics (I think infliximab) and now, after a colonoscopy later this week, I have to decide whether or not to go on it.

Anyway, that's my story and thanks in advance for any replies, advise, etc.
07-02-2014, 06:13 AM   #2
Orchid
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Join Date: Mar 2014
Location: Springfield, Oregon

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I'm glad you saw that alternative treatment wasn't helping you before it was too late and you had some very serious lifelong consequences, I've seen that happen to too many good people who were scared of taking effective medication for their illness. Your worries about biologics are valid but recent metastudies suggest they're infact, not an increased cancer risk in the short term (four to five years) and the side effects encountered otherwise are usually mild in my experience. When I inject Cimzia I get a little injection site reaction, which is redness and itchiness and a little burning and low fevers and a headache for a day or two after. But it is so worth it, biologics unlike Azathioprine and 6-MP can cause really powerful overnight improvement. All at once I had energy again, I could eat what I wanted, and didn't have the cycle of constipation and diarrhea that had plagued me for months. The list of side effects isn't a promise, it's just a warning.
07-02-2014, 08:01 AM   #3
Solster
 
Join Date: Mar 2014
Thanks for your reply and reassurance about biologics. I think I will try this next. I'm still experimenting with things like diet though and if I come across any alternative treatment that I find credible I don't think I'll hesitate to try it. Doctors have made it more or less clear to me that it's a chronic illness and it can't be cured, merely kept under control. I'm extremely thankful for having the option of taking the medication and vein able to lead a more or less normal life, but I'm struggling/refuse to accept that this is the way it's going to be from now on. I mean, we were healthy once weren't we, so I don't think it's unrealistic to believe that The right combination of diet/exercise/stress factors will make us healthy again.
07-02-2014, 08:05 AM   #4
Orchid
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Location: Springfield, Oregon

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I'm sorry, it just doesn't work that way. If you stop taking your medication you will flare more often and with greater damage to your digestive system. Think of drugs as a preventive measure, they protect you from needing surgery for fistulas and strictures and inflammation that leads to scarring so bad it destroys part of your digestive tract entirely. If it gets that bad there's no choice but to cut something out because scar tissue in the GI tract never goes away.
07-02-2014, 08:16 AM   #5
Solster
 
Join Date: Mar 2014
Well I do take the medication now, mainly because I want to be able to lead a relatively normal life and not have to be constantly thinking about where the next toilet is. But I don't see the harm of trying things on the side and maintaining some hope that I might eventually be able to come off it altogether.
07-02-2014, 08:20 AM   #6
Orchid
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Join Date: Mar 2014
Location: Springfield, Oregon

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If you stop medication you'll come out of remission and damage your body. The genetic damage is done and there's nothing you can change the fact you have an immune system that's fuckin awful at handling bacteria.
07-02-2014, 08:32 AM   #7
Solster
 
Join Date: Mar 2014
There are people who, through diet alone, have achieved remission and the elimination of all visible signs of the disease (inflammation). Look up Dr. David Klein and the many people who have followed his healing diet. It's probably only a minority, but it shows it can be done.
07-02-2014, 08:34 AM   #8
Orchid
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Join Date: Mar 2014
Location: Springfield, Oregon

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The word of one doctor against dozens of medical studies, exhaustive peer review, and the horrors of an FDA licensing committee. That's not how science, especially medical science works.
07-02-2014, 08:47 AM   #9
Solster
 
Join Date: Mar 2014
I'm not talking about science and I'm not saying that his diet is necessarily the right path to healing for everybody. I'm saying that there are people who have, for all intents and purposes, been cured of a so called chronic illness. And if they managed it, then that gives me hope that I might too...
07-02-2014, 09:13 AM   #10
Orchid
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Location: Springfield, Oregon

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This has everything to do with science. By talking about treating something as a serious therapy for Crohn's Disease that immediately puts it into the context of the results driven world of medical research. All the evidence he has on this is anecdote and hearsay, which means nothing in medical science. The silent and insidious nature of IBD combined with the placebo effect is incredibly dangerous.
07-02-2014, 09:35 AM   #11
Solster
 
Join Date: Mar 2014
Maybe you're right, but on the other hand I don't see medical science trying very hard to replicate the results of people like Klein. And I think this because they're not really interested in it, there's no profit there. Surely studying these people should be a priority though and might bring us closer to what's really at the root of the disease, instead of all this crap about it being 'genetic' or whatever.
07-02-2014, 09:43 AM   #12
Orchid
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Join Date: Mar 2014
Location: Springfield, Oregon

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I resent that implication, it implies we're a bunch of lizards out for ourselves. Researchers are people with chronic illnesses too, we have loved ones and family who suffer as much as anyone else. Do you think if there was a real honest to god cure we'd hide it? No way, we'd publish papers and work hard to get the grants to get it into trials because we want to help people as much as anyone else.

How wouldn't there be profit in it? If you make The Cure for any serious chronic illness your stock price goes through the roof, what else makes investors happy? We simply don't have it. Researchers and professionals who have something to contribute to the scientific community take it to a journal, where they can get peer reviewed, find the weaknesses in their work, and drum up support and interest so we can learn how to help people.

I'm personally involved in the CBT for psychosis movement, and we can always find the money for studies because we can get serious results. In your world of corporate world it shouldn't be possible because so many of today's blockbuster drugs are targeted towards mental illness.
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