Might get temporary ileostomy?

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scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 976
   Posted 10/12/2012 4:01 PM (GMT -6)   
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! turn

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!
CD 2010, Fistula, Pancreatitis
Prednisone, Imuran, Asacol, and Remicade

"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." John 16:33

Lovetoski
Regular Member


Date Joined Jul 2011
Total Posts : 128
   Posted 10/12/2012 4:57 PM (GMT -6)   
Hello, I had a temp ileostomy, now permanent, due to my crohn's colitis and a persistent anal fissure. If your surgeon, just does a temp diversion, he will create a loop ileostomy, which is in itself quite a small op - they don't cut anything out. You shoul recover quickly and once you are train with the pouch change, you shoul be good to go. It will take time though to find the right system and ou will have leaks. I went back to work 2 weeks after surgery and had my first massive leak in the first week back at work. I phone my stoma nurse, we changed my type of bag to convex and no leaks since then.
In our case with the long hospital stay before hand, c diff and pancreatitis, I would look for really a top colorectal surgeon. I'm in th UK, but I heard the Mayo clinics in the Us are specialised centres.
39 yr female living in the UK, originally from Austria
diagnosed in 2002 with Crohns,meds: Pentasa Pred humira which all stopped working, battling with flare and fissures until temp ileostomy on 7/19,QOL improved - I can eat what I like- but still having fevers due to active colitis, proctocolectomy may31.

ActiveUCer
Veteran Member


Date Joined Jul 2012
Total Posts : 1676
   Posted 10/12/2012 6:55 PM (GMT -6)   
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.
http://activeguts.wordpress.com/

Colectomy with end ileostomy August 30th, 2012 - jpouch sometime
Sitting at 10 mgs pred and dropping!

UC (refractory) sufferer diagnosed July 2011
One never ending flare
enemas, suppositories, Asacol, Lialda, and Colazal = worthless for me; Imuran/Azathioprine = bad liver and pancreas values; Remicade = Not very helpful; Paleo not helpful

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 976
   Posted 10/15/2012 12:56 PM (GMT -6)   
Thanks guys, I appreciate the feedback. :) I was wondering the same thing about the c. diff. and I'm hoping that's all it is. I am still doing Remicade. I just worry about getting a vaginal infection from stool leaking through. It's also hard because it means I can't hold anything if I have urgency, but I'm a high school teacher and I can't just run out of the room. I am currently on leave and have a sub, but I can't stay that way for forever waiting for the fistula to heal, you know? At least surgery would be an excuse to stay out if that makes sense.

I am in Utah, actually, but close enough. :) I'll see if my surgeon is able to find someone to recommend and go from there, but it's good to know that Mayo is somewhat near and recommended. Thanks again!
CD 2010, Fistula, Pancreatitis
Prednisone, Imuran, Asacol, and Remicade

"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." John 16:33

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 976
   Posted 12/26/2012 2:08 AM (GMT -6)   
Looks like fistula repair surgery has been put on hold.....I'm pregnant! smhair 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.
CD 2010, Fistula, Pancreatitis, C. Diff.
Current: Remicade
Previous: Prednisone, Imuran, and Asacol

"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." John 16:33

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3062
   Posted 12/26/2012 6:55 AM (GMT -6)   
Congratulations on your pregnancy!

Wow, you have been through a lot. How are you doing with all the issues you mentioned a few months ago? Is the remicade helping? Are you back teaching?

I teach college, and I would not have been able to teach high school sick as long as I was able to keep going w/my job.... high school teaching is so demanding physically.
50 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound Sept 2011. All healed up now. Healthier than I ever expected to be again...

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 976
   Posted 1/4/2013 7:21 PM (GMT -6)   
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.
CD 2010, Fistula, Pancreatitis, C. Diff.
Current: Remicade
Previous: Prednisone, Imuran, and Asacol

"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." John 16:33

ActiveUCer
Veteran Member


Date Joined Jul 2012
Total Posts : 1676
   Posted 1/4/2013 9:23 PM (GMT -6)   
I'm glad to see that your Crohn's is clearing up and congrats on the pregnancy! I hope the hyperemesis goes away soon. I'm heard that's really really harsh :(.
http://activeguts.wordpress.com/

Drug refractory UC
Colectomy with end ileostomy August 30th, 2012 - jpouch sometime
IBD related arthritis and peristomal pyoderm gangrenosome

Humira, finally off of steroids! Aiming to have Step 2 in August 2013.

Tried lots of drugs and diet, didn't work for me.

colitiscanuck
Regular Member


Date Joined Oct 2012
Total Posts : 80
   Posted 1/6/2013 12:28 PM (GMT -6)   
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.
Female 32 dx with UC in 2004, rediagnosed with Crohns Colitis Sept 2012
Current meds
Asacol
Imuran
Lotomil
Cipro Flagyl
Seton and Fistula surgery Sept 2012
Loop Ileostomy Dec 16, 2012
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