Hi!

[acemagic]

Hey everyone,

Long time reader, first time poster, Adam here.

I wanted to say hello and tell you a bit about myself.

I'm 30 years old and was diagnosed with Crohn's at age 17. Between ages 17 and 20, I went through every medication available and have had negative reactions to most of them. 6-MP gave me massive bruises on my legs, which ended up paralyzing me for a couple of days. Methotrexate made me nauseous for weeks on end. Prednisone...well don't get me started on Prednisone.

Remicade worked wonders for me for about a year, but the symptoms came quickly back and things got really bad really fast. I ended up needing emergency surgery in December of 2002 to get rid of an abcess, crohn's and my appendix, all at once. I also received an ileostomy for 6 months. In May 2003, the my ostomy was reversed via surgery and things were good until 2006 when complications from the original surgery (scar tissue) needed to be removed. So I had a third surgery and have actually been pretty good since!

Fast forward to 2010. No medications for 4 years, but I've been ending up in hospital about once every 9 months due to a bowel obstruction (likely caused by more scar tissue). Over the last year, these obstructions have been getting more and more frequent, and I'm getting hospitalized once every month or two for the same thing. The only thing that helps is major pain killers and rehydration to allow the blockage to pass. Finally I decide to go in for a small bowel follow through and ultrasound, and guess what they see? 5 inches of Crohn's has returned and appears to be causing the blockages.

So unfortunately, I'm up for surgery again. May 25th 2012 is the date. And now I'm finding myself browsing the forums again, hoping that someone out there has had success with drastically reducing their Crohn's disease so that I can mimic their actions and wont have to go under the knife again. I've tried the SCD diet, but couldn't hack it. Remicade/Humira causes cancer, so I'm refusing those treatments (and by bowel is so thin right now that my doctor wont give me Remicade as my intestine would likely fuse together). High residue foods CAUSE the blockages, so I'm stuck with eating meat, potatoes and noodles until my surgery.

If anyone has any last minute ditch efforts that I can try out, I would definitely appreciate it, and if not, I look forward to talking with you all soon! Thanks for reading!!

-Adam

 

[Emily]

Hey Adam, welcome to posting on the forum! I wish I had some great advice for you, but unfortunately I don't have anything magical. Have you ever tried Humira? That is what's working for me, and I don't believe it causes cancer, but lowers your ability to fight certain infections. Really and truly, I'm always trying to relay to people on here afraid of it that it really isn't scary, I have none, zero, zilch side effects and it's really helped me.

I know you've still got to go through with the surgery, but maybe commencing on a biologic directly following it could do the trick? I know everybody's Crohn's is different, so I'm just throwing in what worked for me. My heart goes out to you for all that you've gone through, you've got to be a really strong person for it all! :hug:

 

[acemagic]

Hey Em,

Thanks for the response! Everything I've seen online suggests that Humira can cause cancer. It's even posted on Humiras webpage. I hate to be the one to tell you that, but it's right at the bottom of the page: http://www.humira.com/

I've also tried Medical Marijuana, with no real success. I just posted in the Medical Marijuana section if you'd like to read that. I'm definitely looking for some sort of "alternative" treatment at this stage. Thanks so much for the reply!

 

[Emily]

Well I believe the risks outweigh the benefits in certain cases. Like you I have failed pred, all mesalamines, 6-mp, azathioprine, and methotrexate. This is the first drug that's doing the job so I'm going to stick with it. But I definitely get where you're coming from!

And I used to smoke marijuana recreationally and it did help a little with my stomach but it was always temporary, once the high wears off, the medicinal effects wear off too. Anyways I hope someone better versed in some other alternative treatments comes along with some suggestions! Best of luck!

 

[David]

Hey there Adam and welcome. I'm sorry you're having trouble and potentially going to have surgery.

Have you tried any form of enteral nutrition? How about Low Dose Naltrexone?

What about the Specific Carbohydrate Diet could you not hack? I'm on it right now and doing quite well other than the intense cravings and killing one of my chickens so I could eat it thing...

 

[acemagic]

Hey David,

Thanks for the welcome message! Yeah, surgery certainly sucks, but sometimes it's pretty necessary.

I haven't tried enteral nutrition or LDN. I will certainly talk to my doctor about LDN, but from what I was reading on the forums, the success rate appears to be quite limited. Still might be worth a shot.

I couldn't hack the SCD diet, simply because A) I didn't have enough time to prep everything with my ridiculously busy schedule and B) High residue foods are what is really causing all my blockages at the moment, so vegetables are pretty much out anyways.

Whenever I can, I eat SCD approved foods. I mostly stay away from breads, grains and dairy. The only thing I eat from that category are noodles.

Enteral nutrition sounds rough...I'm already underweight and would have trouble sticking to a liquid diet for any amount of time. Even when I'm in the hospital, I can't stomach the liquid diet they give me. I just stop eating for a couple of days instead.

I guess my stubbornness is what's really holding me back. If I go on an enteral diet, then I feel like the Crohn's has won because it's affecting my quality of life to the point where I can't enjoy food anymore. I'm okay with removing 5 or 10 things from my diet, but removing everything is hard to stomach.

How long have you been on the SCD Diet for? Have your symptoms completely resolved? And most importantly, were they bad to begin with, when you went on the diet? I guess what I'm asking is, have you noticed a significant reduction in symptoms, or just a slowdown in progression of disease?

 

[David]

Hi Adam,

Enteral nutrition is quite tough on most adults because we're (in my opinion literally) addicted to many foods. In the pediatric population, it has about the same remission rate as prednisone, I think in large part because the peds are forced to stick to it and us adults cheat. It's amazing how we tend to put our food addictions before our health.

I've been on the SCD for about two weeks now. Please note my form of inflammatory bowel disease is called Lymphocytic Colitis so I'm different but so far, so good. I'm not symptom free, but I'm in much less pain than I was 2 weeks ago.

Another interesting alternative treatment read for you would be fecal transplants. Be sure to read through the entire thread as we have a forum member actively doing a transplant with amazing results.