recent surgery not happy looking for alternatives

Loop ileos are generally more difficult to manage than end ileos. Output is usually more liquid, and many people experience hydration problems with a loop. I'm not sure how changing from an end to a loop fixes your son's problem anyway?

Are you using eakin seals? They help me tremendously and are moldable so you could work around the unique arrangement. Also, try the Convatec moldable convex appliance - it would allow you to create a specially shaped opening to fit the double issue.

I don't use any preps, wipes, removers or paste. I find just an eakin and the wafer works better for me - I have sensitive skin.

I hope you find some answers - I hate hearing of such little ones going through this.

Are they going to connect the j pouch and do you know when? A BCIR or k pouch procedure are major surgery and not temporary fixes, they create a continent abdominal pouch (like the j pouch but with an anti reflux valve that you need to empty with a catheter)...it is a viable alternative to an end ileo for a young person (or anyone) but it is not something that they do for a short while or as an interim solution...are they going to connect him to the j pouch any time soon? Once connected he should be just fine (kids tend to recover quicker) and he will have a good quality of life that way...
Have you spoken with his stoma nurse about possible alternatives to the system that he is using or being creative wth the flange? Could he maybe use a system with a belt? Can you contact the various manufacturers for samples?
Sharon

I had a mucous fistula and end ileostomy but had 2 bags. A very small bag on the fistula and another one on the ileo. However to make it stay and improve the fit to stop leaks the stoma care nurse had me use rings under the ileo stoma bag and then an extra half moon seal to make it stick. I also tried different makes / types of bags to find the best one. I think its worth talking to your stoma care nurse to see shat else can be done to make life more bearable. I really hope you find a solution.

hi all yes we have tried all different products and have 3 stoma nurses and the manufactures come out and try different products none of which are working. to answer your question no h is not being reconnected he only had the j pouch created and the mucous fistula because of the chronic infection in his rectum which was all dead. they were unable to sew the rectum shut because of his age and the risk of effecting his reproductive system so they had to get creative. he did have an end ileo prior to this last surgery. his stool is all liquid so i don't imagine that it could get any more watery and yes he already has chronic dehydration issues where he is hospitalized every other month for 2 weeks to rehydrate him. he now has the port so that we can handle that issue at home and limit the time we spend in the hospital. the reason i am looking into the loop and the bcir is because i want him to have abetter quality of life which he had prior to this last surgery. he can no longer swim because of the chronic leakage, and he is in constant pain from the skin deteriorating from not getting a proper seal. i was hoping that with the loop we may be able to get a better seal or the bcir eliminate the entire need for an external pouch. we are do to go in to the see the surgeon yet again next week so we can hopefully decide on the next course of action

I am confused.

If a j-pouch was created, why is there no plan to connect it?

My other question is why would the loop ilestomy be an improvement, since poor appliance seal is a typical complication?

If a mucous fistula is absolutely necessary as a long term and/or permanent fixture, I would think the best solution would be to have the ileostomy and fistula on opposite sides of the abdomen, so that both appliances can get a good seal.

I am not sure he would be a candidate for a BCIR or Kock pouch (at least not until he is older). The fact that he suffers from short bowel syndrome may be a contraindication.

Jan