My story

Born in 1987 I had bouts of stomach pain throughout my life and some instances of low blood counts. I was finally diagnosed in 2008 after investigating my low blood count level. I had (and have) multiple strictures and fistulas. Other symptoms include increasingly restricted diet, bad gas, and bouts of pain/obstruction.

The specialist I saw at the time--Stenson of Barnes Jewish Hospital recommended imuran. This did not solve my blood counts but he recommended I just supplement with iron and wait until I obstruct.

I later moved to DC and saw Cross of UMD. He put me on Humira and recommended a resection. I got a second opinion from Shah and another doctor in CA, the former also recommended a resection (seemingly without much consideration), while the latter agreed that Humira was a good idea but recommended putting it off surgery as long as possible.

It would be nice to get rid of the gas/pain/bloating/risk of obstruction, but I don't want to create more problems for myself (e.g. D, anastamosis) and would also like to delay the surgery so I hold on to as much of my intestine as possible.

I mainly put "my story" out there so that others know that 4 qualified Experts had very different opinions. Crohn's is not a broken bone--not routine--so I greatly appreciate having a site like this with others' experiences.

I will be researching a lot on resections while I am here, but if you have any input directly for me that would greatly be appreciated.

Hi Ajax and welcome!

You are very right - Crohns and IBD are not routine and every patient is different! Seems like every doctor is different, as well, in what they recommend.

I understand that you want to put off surgery for as long as possible. But....as someone who has HAD to have surgery several times, most recently for a permanent ileostomy, I would encourage you to look at surgery as a treatment option, not just a last resort. If the Humira can work for you to take care of the issues you are having, then go for it.

Just know that a lot of people have had successful resections and enjoyed much better quality of life afterwards.

Good luck with everything! I hope you start to feel better soon, and find lots of good information and advice here on the forum!

- Amy

Hi Ajax! You are so right - Crohn's is not at all like a broken bone. Each case is so very different. And I agree, depending on who you see, treatment options can vary greatly. Thank you so much for sharing.

I personally don't have any experience with resections, however, many on the forum do. I hope someone will come along with some advice shortly. If not, don't hesitate to post your questions. This forum has helped answer many of my questions.

Welcome to the forum!

Hi Ajax and welcome!

I think you're right to try and avoid surgery if poss, although if things get really bad i think u would welcome it like i did. My GI said life wouldn't be the same after surgery, but in '01 i elected to have it rather than keep fighting a losing battle with a stricture in my ileum.

The 2 main differences to my life post-op are low energy levels due to under-nutrition after 2ft (60cm) of small bowel at the ileum were removed, and frequent loose bowel movements, again due to the shortened bowel. The relief of being pain-free was immense though and i would do the same again. Indeed in 2005 i had another surgery after an abnormal loop formed, stricture-plasty this time, but again my energy levels have dropped further.

Even after a resection there's no guarantee that the Crohn's won't return, and in my case it has. Like you, i now have 'lots' of strictures in the small bowel and 1 in the ascending colon which causes me lots of pain due to obstruction. I cannot eat a full meal without consequences and have a limited diet and even less energy. The doc is trying to treat with Azathioprine (Imuran) but if the strictures are fibrous (scar tissue) the drugs won't work.

Do you know where your strictures are? If they are in the colon there's a possibilty of opening them up with a balloon through a colonoscopy, something that another member has just had successfully (we hope) and something that i will ask my GI about next week, as its the colon stricture that causes my obstructions.

I hope that helps a little, feel free to ask any further questions. And i hope u get some relief soon - i know ur pain!

Ian