Reconnection surgery with no colon question

[Gregory8]

This is my first post on this message board and hope the community can answer some of my questions.

I am 32 yeas old and have had Crohn’s disease since I was 11. I had two small bowel resections and a year ago had my colon removed and was left with an illiostomy. I am having a very hard time with this new life style. I have spoken to many people with ostomys who say it is the best thing they have ever done, unfortunately, I am not there yet. I feel as if this is the worst thing I have ever done.

I went to the Cleveland Clinic because I have heard they are the best. The surgeon I spoke to said he could reconnect me if I want to give it a try. Unfortunately, he could not tell me the success rate. Some people are fine for 10 years and others are back in surgery with an ostomy in weeks.

Has anyone had experience with reconnection surgery with no colon and Crohn’s disease?

Any info would be greatly appreciated.

Thanks

[susan f]

Hi Gregory,

I would think long and hard about this. The output that currently goes to your ileostomy bag will go straight to your anus. If it is liquid now it will probably continue to be liquid. I think the biggest concern would be continence and frequency of stooling.

The following article is a bit old, but it does say that of six children with straight pull-throughs, five were converted to a reservoir because of stool frequency (the great majority of the patients in the study had some kind of reservoir - not a straight pull through). http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1242370/

My personal history is that I had UC and a j-pouch (which they won't normally do for someone with CD because of the high failure rate). I had chronic pouchitis for 15 years including fistulas and anal abscesses. I averaged around 15 BM a day with the pouch. The doctors kept trying to rule out CD, because my symptoms seemed very CD like. I finally had the j-pouch excised and a permanent ileostomy. I had had a temporary ileostomy for about a year, and I hated it. I can tell you that life with an incontinent j-pouch was vastly more horrible than having an ileostomy, although it took me years to get to the point where I was ready to admit it.

Good luck with your decision, I know its a hard one.

[Gregory8]

Thanks for writing back susan f, the info was helpful. I know you said you were visiting the bathroom about 15 times a day. If you don't mind me asking, did you have full funtion of you anus? That is my main concern right now. I can deal with 15 batheroon trips a day...doing that now with an ostomy bag, but obviously could not deal with not having control of my bowels.

Gregg

[susan f]

If you mean did I have leakage? Yes, I did, especially after the three anal abscesses as they had to be drained and there was damage to the sphincter. Before the abscesses I would have leakage at night but not usually during the day. The problem with 15 trips to the bathroom is your bottom starts getting really raw fairly quickly, since as you know, our output is very caustic. And then it is a vicious circle, because a raw bottom (we called it "taco butt" because you have to develop a sense of humour!) leads to more leakage, which leads to rawness.... I used to use diaper rash creme fairly regularly.

The other thing that was unexpected with the j-pouch was the sheer noise of bowel movements. It is very hard to distinguish gas from stool, so inevitably I would go to the bathroom and sometimes it would be gas with only a little bit of liquid. And it would be loud. Very loud.

Bear in mind that with a straight pull through you don't have the reservoir that is created with j-pouch surgery - so I would think that you would have more frequent stooling than with a j-pouch.

I'm not actively trying to discourage you, but given what little I have read about straight pull through it sounds like it has a lower success rate than a j-pouch, especially in adults.

[nicola smith]

Not all jpouches are noisy. Mine makes no noise at all. I can also distinguish between gas and stool but that took a little time.

[susan f]

Oh, that is interesting Nicola, most boards I have read people mention that the noise is startling. Although it could have been because of the strictures I had as well. Who knows, my j-pouch didn't function very well.

If you have a successful j-pouch you are having a vastly different experience than I did, so I think that would be a good data point. Although Gregory has CD and is looking at a straight pull-through so I'm not sure how that would be on noise. No reservoir. Could be better or worse, I don't know.

[nicola smith]

Oh, that is interesting Nicola, most boards I have read people mention that the noise is startling. Although it could have been because of the strictures I had as well. Who knows, my j-pouch didn't function very well.

Susanf, you are right that there is a lot of mention on the boards about the noisiness of jpouches and it was one of the things I was anticipating. Just didn't happen. My temp ileo also made no noise. So far, 7 months out, my jpouch experience has been very successful and I don't regret it for a minute.

I take vsl#3 (a strong probiotic) daily as a preventive against pouchitis which is common in people with a history of UC or Crohn's. http://www.vsl3.com. It might be something for Gregory to consider too.