I have a pouch from an original UC dx and now am suspected to hace crohn's. The doctor mentioned going to a permenant ostomy as an option if things continue to good wrong. I've had two temps...is there a difference in maintaining a permenant one?

I dislike the terminology of permanent and temporary ileostomy because they only tell you what the intentions are for them, not the functions of each.

Usually, when you hear temporary ileostomy- it is in reference to what is called a loop or diverting ileostomy. This is where there is a double barrel design and both the upstream and downstream ends are brought out as an ostomy. This tends to have more problems with appliance fit and leaks are common.

What is usually considered a permanent ileostomy is an end or Brooke ileostomy (but sometimes these are temporary, and that is why I don't like that term). An end ileostomy contains the opening only to the end of the upstream ileum. There is no connection to the anus. It is much easier to care for and less problematic. This can be temporary when it is the first step of a 3-step procedure (after total colectomy but before pouch creation).

When you have a failed pouch and revert to an end ileostomy, there are still some choices to be made. Some people have the entire pouch, sphincters and anus removed. Others have only the pouch, but retain the anus and sphincters. Still others just have the pouch closed as a "blind end" without connecting to anything. However, in that instance it is at risk for diversion pouchitis and must still be monitored by scope.

If you opt for an end ileostomy, you can still decide to have a continent ileostomy (such as the Kock pouch) done at a later date if you find that the external appliance is not manageable for you.

Jan

Permanent ones are rumored to be much easier to care for as the output isn't as liquidy. I'm sure that varies with everyone and every stoma though.

Lori

Hi Marcene,

I am so sorry that you may be facing a perminent ileostomy. I can fully understand your concern because I am in the same situation as you regarding the Crohns diagnosis, although I already do have a perminent end ileostomy.

Yes there is a difference between temporary ileostomy (loop ileo) and a perminent ileostomy (end ileo).

Loop ileos can tend to retract to skin level (or below) causing leakage and skin issues. They are also usually quite high output because they are further upstream and this can result in problems with dehydration and poor nutritional absorbtion.

The end ileo is just that... it is made up from the end part of your small bowel (ileum) and is much easier to manage because it utilises much more bowel than a loop ileo (which tends to be further upstream).

End ileos tend not to retract and usually have quite a good spout so there is much less risk of stool seeping under the wafer which can cause skin excoriation. Also, as they do utilise more bowel so fluids are absorbed much more efficiently.

Having said all of this, it's not necessarily the case that you will loose your j-pouch unless there is evidence of Crohns in the pouch. In fact most surgeons will try to preserve as much bowel as possible whenever Crohns is involved.

I hope this answers some of your questions, but I'm sure there will be others on soon who can give you more advice. Take care and keep us posted.

Shell

P.S. Looks like Jan and Lori pipped me to the post!

Thank you all, that was very helpful. It is not as daunting just knowing that an end ileostomy is not worse than a loop. I found the loop manageable when I had it for a year, but still a pain at times. I have yet to get my pouch biopsies back but should it show crohn's in the pouch I will try to look at some positives...I mean having a pouch is so much less painful and much more conveinent at times that all the bum problems and diarrhea!