Might get temporary ileostomy?

Hi everyone! I am new to visiting the Ostomy forum, although I've been on the Crohn's forum quite a bit. I've asked about this over there as well, but I'm hoping maybe some of you could give me some input on my situation?

I've had an interesting couple of years in terms of my health. In March 2010 I got c. diff. from too many antibiotics. 6 months later I was hit with really bad symptoms of what was diagnosed as Ulcerative Colitis (although now we've changed the diagnosis to Crohn's Disease). Last year I was pretty good; I got in remission after 10 months of prednisone, and just hit a small bump when I got salmonella. I was taking Imuran and Asacol (immunosuppressants) as maintenance meds. Then I got married in December!

Then it got pretty rough pretty quickly. I got c. diff. again, which caused a flare. This in turn caused a perianal abscess, that when they cut and drained in the hospital gave me c. diff. again. Then the abscess turned into a rectovaginal fistula. They put in a draining seton because I was going to wait about six months before starting Remicade since I was moving to another state. But then the Imuran caused me to have Acute Pancreatitis, so we started on Remicade right away and they removed the seton.

Over the summer, the fistula healed almost completely. I still struggled with the pancreatitis; it kept flaring up even when I followed the strictest of diets. I spent the entire month of August in the hospital and half of September. They put in an NG feeding tube for three weeks, but even sips of water to take pills would cause the pancreatitis to flare up (just FYI, I don't drink). They even removed my gall bladder on the off-chance that there were stones that the x-rays, MRIs, and CT scans couldn't see (no such luck).

Then the last week in August I got another flare of c. diff. again. The diarrhea/bleeding from the c. diff. combined with constipation from the IV dilaudid in the hospital to control the pancreatitis pain (worse than the gall bladder removal, let me tell you!) made the fistula re-open and get bigger. At least, I've never had so much leak through before.

I saw a general surgeon today who is one of the best in my state. My GI and PCP (who are also the top ones in the area) referred me to him. He told me that he isn't even going to touch the fistula to do repair and is going to call his partners and ask around to find the top colo-rectal surgeons here. He said he knew of a couple, but they "are idiots" and he "doesn't trust them." He said if any surgeon ever tries to say that this is an easy fix, to run away screaming. He's also concerned that this might cause my pancreas to flare up again. They never figured out why it's stopped flaring. An upper endoscopic ultrasound showed no calcification or sludge, so it's not chronic.

Anyway, the surgeon said that if there is a surgery to repair the fistula (he doesn't like the idea of just leaving it), then I would have a temporary ileostomy for 6-10 weeks while the surgery site healed. This makes me so nervous. I plan on following all of the counsel and advice of my GI (who I see next week) and the surgeons that my surgeon today will recommend.

If they do a temporary ileostomy, what are the chances that the reversal won't be effective? That they'll reverse but my colon won't be able to handle processing food again. How long does it take to recover after getting an ileostomy and then the reversal? I am a high school teacher and I haven't even met my students this year yet because I haven't been able to go to a single day of work - this is the longest I've been out of the hospital, and it's only been 2.5 weeks and I'm still slowly getting strength back.

In those 6-10 weeks with the ileostomy, would I be feeling well enough to go to work? Could they mess up the surgery and accidentally make the ostomy permanent? Will this repair even be effective? What are the odds of the fistula coming back?

I know that some of these are Crohn's-specific questions, but I was hoping you guys could give me some insight and opinions about temporary ostomies and reversals.

Thanks!

I don't think there's anything in particular you need to be worried about with the temp ileo. Lots of people get re-connections, even after even more massive surgeries. There's always a risk that you will have a complication (like not being able to reconnect), but I don't it's a huge risk. You can ask your eventual surgeon. You've had really tough time recently. You will probably find that having the ileo might be better than dealing with the problems you are currently dealing with.

For surgery, normally when it's complicated people recommend Cleveland Clinic or Mayo Clinic. I'm not very familiar with the SW (saw in your profile that you are in Nevada). I did research a bit and saw that they have a Mayo Clinic branch in Arizona - not sure exactly where though. I know traveling isn't fun, but since your general surgeon is recommending an experienced colo-rectal surgeon, you might consider traveling several hours to find a good surgeon. Maybe others on this board will know more about that area and can give you recommendations for good C-R surgeons.

Looks like fistula repair surgery has been put on hold.....I'm pregnant! Definitely a surprise, since I was on the pill. But we're thrilled. We found out on our one year wedding anniversary last week. I'm pretty sure that's the first time my GI has made that phone call, lol.

Thanks! Things are finally starting to clear up, although I'm having a hard time with extreme morning sickness called hyperemesis or something like that. I have to go in to the hospital every day to get fluids, and next Wed if it hasn't worked they'll give me a feeding tube because on my own I was throwing up even just a swallow of water.

I had gone back to teaching, but right now I can't because the fluids take up to 5 hours to get and they won't let me go in after 1p. Hopefully I don't flare with the Crohn's - I've been struggling with diarrhea the past few weeks too.

Your situation is different than mine due to the fact that my fistula is personal and I am not pregnant. I had my temporary loop ileostomy three weeks ago.. since having the operation my fistula has felt so much better and is not draining all the disgusting mess like it was. It is nice not to have to run to the bathroom 20 times a day. I am starting to gain weight and can eat again after two years of not wanting to/very limited diet. I am still very tired and could not work yet but every day I am feeling a bit better. It was a scary decision to make but I am glad that I have done this. Hopefully once I start on remicade and clear up the fistula and let my colon rest I can reverse and poo normally for once. IIhope that you can find some relief soon, you have been through so much already.