Please help - Uncommon case of "Crohn's" disease

Hello CureZone,

I am hoping the people on here can provide me with some information and insight as I try to heal myself as many have tried and are still trying to do.

About 5 years ago I was diagnosed with Crohn's disease after coming back from Bermuda and had some common symptoms: diarrhea, stomach pain, etc.

I took a course of anti-biotics (Cipro/Flagyl) along with Pentasa and I was pretty symptom free for about 5 years (aside from some joint pain).

Now, after getting back from Puerto Rico, I began having problems. It started with severe weakness and diahrrea (once and only once), then a fever for a week, and then a little stomach pain and eventually a small bowel obstruction.

I went to the hospital for that and it was treated with IV steroids and anti-biotics, as well as an NG tube, and I was told to start tapering off Prednisone.

Two months later I was back in the hospital for a small bowel obstruction and an MRI showed inflammation and scar tissue in a 10-15cm segment of my terminal ileum. The doctors (Mt. Sinai hospital in NYC, supposedly top guys for Crohn's) told me my choices were surgery, and/or biologics.

Well I didn't like that. So I began researching. I didn't realize that it would consume my life and destroy almost all home in the medical community!

So here is why I consider my case of Crohn's to be unique:

I have no symptoms! Until my bowel obstructs, I have normal bowel movements, no pain, nothing! Additionally my body seems to be able to handle any food, while dairy if consumed in large amounts (full size ice cream) can make me a little extra gassy. Most people see this as a blessing, but I don't. I live in constant fear of a bowel obstruction with no way to tell when it will happen until it does. There are no lead-up symptoms and I only feel the pain and lack and BM's once I obstruct, which is then too late.

Has anyone else seen a similar case? I really never believed that I had Crohn's disease but there is definitely "something" wrong down there. I have tried a 2-3 week long course of Cipro/Flagyl and that didin't work, and now I am on Pentasa and 35mg of Prednisone.

I am working with Jetti Katz lab and Dr. Asher to try to detect some parasites and have been off the anti-biotics for two weeks so I hope that does no interfere. Assuming that comes back negative, my next options for treatment are as follows:

1. Rifaximin

2. Beck's Protocol + Topical DMSO/ICS (//www.curezone.org/forums/am.asp?i=1369762)

3. LDN (Won't "cure" anything but it looks like a good alternative to biologics)

4. MAP Treatment (Would like to be diagnosed with a MAP infection first though...)

5. Your suggestions!?? Help!

6. ...biologics...

Does anyone know the next steps I should take? I am hoping that the Topical DMSO/ICS will help me in the case of another obstruction since the claim in that curezone link seems to be "immediate" results. In the hospital I was told that there is no way to determine "how much" of my stricture is inflammation and how much is scar tissue, but since the treatment (steroids/anti-biotics) worked at least temporarily, I believe that the scar tissue is not the all-encompassing problem. The docs told me that if my stricture was caused by mostly scar tissue the drugs would not have worked and I would NEED surgery.

In addition, before Puerto Rico I was on a "modified" Paleo diet which is to say I had a lot of fiber and a lot of nuts/seeds so if I did have that much scar tissue I would have obstructed a long time ago.

To sum it all up, I think I have an infection in my intestines and no idea how to go about solving it. I am slowly tapering off prednisone (5mg/week) and assuming I CAN get off it I will have been on the stuff for 4-5 months so I need some way to prevent a relapse. I am currently on a low residue diet and will be for a LONG time until I know what is going on. I will likely switch to liquids when I get to low doses but for now I am doing well.

Please help me! Thank you!
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