Surgery Dilemma

[AmandaNG]

I was diagnosed with Crohn's at age 17, and I'm now 26. I have been lucky enough to avoid surgery so far. I had a bad flare that began last October. I went back on Humira, which I had stopped taking because of severe sinus infections, and started taking Entocort.

I wound up in the hospital at the end of November. A small bowel follow through showed 2-3 cm of "threadlike" narrowing at the end of my terminal ileum, which is the area that always narrows when I flare. The first night in the hospital, I saw one of my GI's partners, who recommended IV Prednisone and a surgery consult. My GI, however, wanted to avoid surgery.

I was on Prednisone for 6 weeks and went back to the hospital in January with severe abdominal pain. My GI did a colonoscopy and said that I appeared to be in remission. He thought my symptoms were now more IBS-related.

I have been taking Elavil for the IBS but continue to have symptoms of abdominal pain and diarrhea followed by several days of constipation. I had another small bowel follow through last week that showed "slight improvement" but continued narrowing. A stool sample and bloodwork came back negative for inflammation, which to me means that the narrowed area must be scarring. My Crohn's specialist is on maternity leave, but her PA recommended that I see a surgeon. However, my regular GI does not think I need surgery. I know 2-3 cm of narrowing is a comparatively small area. Is it worth pursuing surgery for this? I am on medical leave from work because of the pain, and I just don't know what else to do!

 

[Manzyb]

I would think that if you had narrowing because of scarring, they would have seen that during your colonoscopy... unless they couldn't get the scope into the ileum.

I don't think it would hurt go get a 3rd opinion! It's a big decision to make. I had 18 inches removed because it was all strictured from scar tissue. It was a painful surgery and it took some time to heal.

In the end, it does have to be your choice. Is the Humira not helping you at all then, I guess? Are you still on the Entocort?

I do hope you start to feeling better soon!!

 

[AmandaNG]

That's just what I don't understand. I had a CT done the day before the colonoscopy that showed narrowing in the TI, and the small bowel follow through from last week also showed continued narrowing. So how was there nothing visible on my colonoscopy?

I do feel somewhat better on the Humira, and recent stool samples and bloodwork came back negative for inflammation. Right now the Humira is the only med I am taking for the Crohn's. I am taking Librax and Elavil because my doctor thinks I also have IBS.

And don't get me wrong, I'm not exactly eager to be cut open. But I am still having pain in the same area as usual, and so I am seeing a surgeon on Tuesday. I'm just afraid that he will recommend surgery simply because that's what surgeons do....

 

[Manzyb]

Maybe the could end up doing a stricturoplasty (spelling horrible I think!) instead of doing a resection. If it is scar tissue then it would just open up the narrowing since it is such a small area.

That does sound really weird that it showed up on CT and on the SBFT but not the colonoscopy!

Well, I hope that you get to feeling better either way! Let us know how it goes for you

 

[AmandaNG]

Thanks! I am definitely going to ask the surgeon about that. Hoping that they can do it laparoscopically (excuse the spelling) as well. BTW, that is a very cute baby you have!

 

[Manzyb]

I don't see why they couldn't do it laparscopically. But then again, i'm not a doctor!! I had 3 previous lap surgeries done, and they did my resection that way without problem. Well.. it ended up being a hand-assisted laparoscopy. Still, the scar is not that big at all.

Thank you!! She's a trip! I need to put a new picture up of her, she's a big bigger now!