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Duodenal Crohn's

Hi All,

I've been reading this forum for a few weeks so I figured it was time that I share my tale of woe. It all started for me early this year. I started having pain in my upper right quadrant infrequently. I assumed it was an ulcer, because I had an ulcer that was successfully treated about 9 years ago. I decided not the seek medical help and just doubled up on my Omeprazole. Fast forward a few months and vomiting started. At that point, I saw my doctor, he suspected and a sonogram confirmed gallstones. When I had my gall bladder removed, my "recovery time" went horribly. I actually got sicker as time went on. Finally someone decided to do an EGD and through a series of events I was diagnosed with Duodenal Crohn's about 6 weeks ago.

Twice my duodenum has completely closed off due to inflammation leading to hospitalization. Prednisone hasn't helped at all. Now we are trying Humira. I'll be taking my 3rd dose tomorrow (start of the 5th week). There are still no signs that it is working. My doctor has been doing weekly EGDs for the last 3 weeks to dilate my duodenum and keep it open long enough to give my Humira a chance to work. However, it sounds like he's starting to lose hope in this plan. Assuming that things continue as they are, I'm probably looking at having surgery to cut a new hole in my stomach sometime in the coming weeks or months. This scares me tremendously.

Anyway, that's my tale so far, It turned into a novel, so I'm sure it'll go unread, but I wanted to join in on the action.

Has anyone successfully treated duodenal crohn's with Humira?
 
I think Remicade is slightly more effective than Humira, but then again Duodenal Crohn's is somewhat rare. I think you need to "buy time" before going into a surgery you might regret. Consider doing a liquid elemental diet to get things under control. Consider trying Low Dose Naltrexone.
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome!

Wow, I'm so sorry to hear what you're going through :( Obviously if surgery is absolutely needed then that's the way to go, but the surgery they're thinking of doing is definitely one you want to avoid if at all possible. As such, I'd strongly suggest hitting your Crohn's from every single angle possible. For example:

- Western Medicine - Utilize the Humira. Maybe even ask them about adding Azathioprine or 6-MP to the mix.
- Dietary changes - Enteral/elemental nutrition is a big one if they don't already have you on that. From there, the [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki] would be worthwhile to transition to. Juicing is also growing on me a lot.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a fan of Low Dose Naltrexone. Research it. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas.
- Alternative medicine - This could be stuff like acupuncture, including a naturopath in your treatment team, etc.

Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above.
 
Thanks for the responses guys.
I'm really hoping my Humira kicks in at some point. So far, we've really only tried Prednisone (which didn't help at all) and the Humira with EGD dilations. My doc has pretty much ruled out Azathioprine and 6-MP because I have gout and take Allopuranol for it. He hasn't really mentioned any other treatments besides surgery...which I guess should worry me because I really do not want it. I have another EGD dilation scheduled for this coming tuesday and then a regular office visit on Wednesday. At the office visit, I might mention some of these other treatment options that you brought up, David.
I'm extremely reluctant to do the surgery because I actually feel pretty well most of the time. When I'm on a liquid diet, I feel totally normal and I've been able to maintain my weight while on liquids. My doc keeps switching me from a full liquid diet to a diet that allows pasta, potatoes and other soft mushy foods depending on how my duodenum looked during my previous EGD. However, it seems that I can't go longer than about 3 weeks between dilations without my stricture completely closing off. So I understand my doctor's concern and desire for quick results.
 
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David

Co-Founder
Location
Naples, Florida
Some people take allopurinol WITH their 6-MP or Azathioprine on purpose. The dose for the AZA or 6-MP is lower but the allopurinol can compliment it.
 
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