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Need input - part of long story...

Fri, March 02, 2018 5:02 PM

I will try to be brief... Purpose of this entry is to seek guidance/input - and while I know that few of you are doctors, you have real-world experience - which most docs don't have.

I was diagnosed with Crohn's in 1981 (I was 16). - or what turned out to be a "Lite" case of Crohns. Had pain..... surgery, removed 12" of small and 3" of large intestine. Things were good... no problems for many years.

Move forward about 35 years to last fall... once in a decade colonoscopy... GI doc found swelling in lower bowel and some scarring where they previously joined my intestines. I do not have much pain although I feel a little bloated and can be constipated recently. Thus began our current "Wild Ride of having no answers". This is what we have been told:

1) Doc # 1 - GI doc who did Colonoscopy and several more, expensive tests: You have Crohn's (there was heavy doubt for last 30 years) - it is active - here is your prescription for Humira. We will set you up to start this now. They tried to fill my prescription twice even though I told them I was not sure I wanted to do this (Humira seems to be pretty serious stuff - and once you go down this road - not sure you can get off).

2) Doc # 2 ... who happens to specialize in Homeopathic and Nutrition Therapies: (after running a blood test for food allergies). We do not believe that you have Crohns. Your blood test came back showing that you have a number of food allergies - specifically Celiac disease (like being super sensitive to Gluten) . You need to remove all of these things on this list from your diet (long list) and probably stay Gluten free for rest of your life. He has also prescribed a number of supplements that I take 3x a day. I have been feeling a bit better with this regiment and dropping Gluten.

3) Doc # 3... GI specialist at local large, well known hospital in DC area (who are supposed to be leaders in the world in IBS, etc). After reviewing my tests and information that we have: You do have Crohn's although we are not sure about Celiac because he did not run one of the key tests we suggest. We need to run another blood test although eat what you want for now (staying Gluten free before the test could give us a false negative). We really do not know what causes Crohn's - we really end up treating the symptoms. Your two issues are the inflammation and the stricture in your intestines. We do have a way to do a colonoscopy on you... and insert a balloon in the stricture to help open it up - which can last from 3-12 months or longer. We do, though, need to decrease your current swelling and get your colon healthy before we do this. It also looks like this is a long-term, slowly progressing situation because of the scarring in your bowels. Thus, we suggestion Entyvio for 6+ months and then we look at doing the procedure to open the stricture. BTW, while a modified diet might help you feel better, it will not really treat this: there is no research which supports any links between diet and Crohns.

So, there you have it (heavily paraphrased, as it were)... three different opinions about three different paths to take. I am not fond of the idea of one of these drugs for many reasons (they are expensive and you stay on them forever - I do not trust big pharma for obvious reasons). I do not, though, want to make things worse by only adjusting diet and then, in some time, need another bowel resection which costs me mucho bowel because of the current swelling and lack of healthy tissue.

I am leaning towards starting on Entyvio for 6 or so months... modifying my diet (gluten free

zoomjay
Joined Mar 2, 2018

Fri, March 02, 2018 5:05 PM

Reply posted for zoomjay.

(looks like it chopped off the end)... I am leaning towards trying Entyvio for six or so months... staying gluten free... having the procedure to open the stricture... and then evaluate whether or not I want to stay on Entyvio. Seems like an odd plan although with little actual factual information this seems reasonable... besides from the fact that I am real uncertain about Entyvio... Thoughts?