Having the pouch removed after 25 yrs.  What are the factors for choosing location of the stoma?  Seems like they usually put it on the right, although I am not sure why.  I sleep mostly on my left side, so would probably be best for that.  I think it is usually above the the belt line to accommodate wearing pants.  I have an upcoming pre-op stoma appt to determine location, so would appreciate any input you could offer.

 

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I had my J pouch removed after 30 years and opted to get a BCIR (similar to a Kock pouch), a continent internal pouch that does not require having an external bag.  The stoma is located below the belt line and covered with a small absorbent dressing.  The pouch is emptied 3-5 times a day at your convenience using a small plastic catheter and there is no leakage. I can wear any clothing I want and nothing about my procedure is visible. I can sleep on either side with no problems.  I do not know if you are aware of this option or would be a candidate for it.  Please feel free to send me a PM with any questions that you have.

I had mine removed at 25 years, too.  My ileostomy was placed where my temp stoma had been 25 yrs ago.  I didn't have any problems with it 25 yrs ago, so thought that would work out, and it has, for the most part.  It probably would have worked a bit better if it had been placed just a tad lower, due to most pants coming across the stoma - but my stoma placement was done on an unplanned basis while I was in the hospital with no pants!  So ... wear slacks that you like to normally wear to your appointment.  As for sleeping, I can sleep on either side, with no problems with my right-sided stoma - I toss and turn a lot, and haven't run into any issues - I keep the bag tucked into my high-waisted briefs at night to keep it secure.  Others may have different experiences.  Best of luck with  your surgery.  

Above the belt line. Definitely. 

Which side doesn't matter.  It doesn't hurt it to sleep on it. Mine is in the right. I sleep on it no problem. 

They will mark your belly with a permanent marker where you want it. It's what they did with me.  Request it. Then they know where to put it when you get in there. 

Just ask to make the stoma long. If possible. I realize it's not in all cases. But definitely bring up the length of your stoma. I did and she gave me one that is 3/4 inch long and works well at that length. 

Good luck.. 

As Mysticobra suggested, ask the surgeon to make your stoma long so it sticks out, and "hangs" away from your body. I only had a temporary stoma and now have a j pouch, but my surgeon didn't make my stoma long enough, or use a rod to hold it in place temporarily, and it retracted to below skin level. The burn every time it emptied and the leaking was excruciating, and thankfully it was temporary. For your permanent stoma, longer is better. Good luck with your surgery.

Yes, long is absolutely better.  I had a short one for a year (when diverted) and a long one for the last year, and what a huge difference in ease of care.  Also, if you're left handed, it might be easier to handle on the left side?  You want to be able to see it and work with it easily.

Thanks for all the replies.  Being right-handed, I think on the right makes sense.  I will ask about the stoma length at my appointment.  My temp was a couple inches above my belt level.  I can't imagine having it below.  It seems like it would be down in the groin area.

I didn't have a choice of side with the temp or the perm ileo. My temp was placed on the right and perm is on the left. I did request she not place it by or above my waist. Sounds like men on here like it higher than I would want.

Best thing ever invented for us is ostomy underwear. It has a shelf on the inside that you place the bag in. It keeps material between you and the bag. Some bags come with heavier cloth like backing but it's not enough in my opinion. There are bag covers you can purchase on Etsy. I used them until I found the underwear. They fit around your bag and you remove them every time you empty.

JMitch,

I don't know if you've had the surgery yet, but if it's still upcoming see if your stoma can be on a completely flat area of your stomach. Avoid areas with dips or crevices or folds. My temporary stoma was placed near a dip (like a small gully) and that spot was exactly where the appliance hung. The dip didn't allow proper adhesion of the bag, That spot leaked all the time until takedown. When they dot your spot with the marker pen, try sitting, standing, bending, stretching up, twisting, so you and the pre-surgery nurse can see if you have any folds or dips in your tummy area. Remember to ask for a protruding stoma so it doesn't retract later. Best wishes.

One thing I did before I got mine is I wore a bag and wafer for a few days. With applesauce in it. Lol. 

You can just stick one on where you think you might want it placed and wear it a couple days.  

I know it sounds silly but it gives you some insight on how it will feel. Can't hurt to try it. 

Richard. 

I'm having surgery October 4th to remove 2 hernia's. My ileo location might have to change so I'm going to try the applesauce suggestion Richard.  

I tried wearing hernia belts after the j-pouch removal surgery and they bothered me. Here I am 3+ years out needing further surgery as several loops of bowel have made it through the opening where the intestine was put thru to create the ileo. I'm having a difficult time keeping a bag on plus I have a large bump on one side of my abdomen and it's noticeable when wearing clothes. 

My local stoma nurse told me I had the hernia and she tried to help me but I was changing the appliance almost daily.  The stoma nurse at Mayo's helped me get them to stay on 2 days. And she put a hernia belt on me which I'm getting use to.  It's difficult because of my fibromyalgia. I feel it all the time, like it's screaming "take me off ". I can't have surgery every few years because I will keep getting hernias if I don't wear one. So I'm forcing myself to wear it. 

There are different belts and I have one that is lighter than the normal one. Insurance pays for a new one ebery 6 months. 

Has anyone else needed hernia surgery? My midline hernia came back too so she's going to fix it as well..... I originally got it 6 months after my j-pouch take down.

Beware of hernia's folks. 

Sorry to hear that. Surgery. Nasty word. Hernia is right up there too.   

Yes. Seeing how we are cut where we are it makes us vulnerable to hernias  I hope I never have one. I try to be careful. 

Good luck to you. Seriously. 

I would have a problem if I had to have another. I try not to think about it.  I've only had four surgeries. That's nothing compared to some here. But it's pure hell. 

Richard. 

Sorry to hear that, TE Marie.   Hernias are something we all fear.  I've not had one (knock on wood).  However, if you use Facebook, there's a group called "The Real Ostomy Support Group", which has been enormously helpful to me in many ways, and I've read of many people there with hernias who either have had surgery, or are looking for other help with hernias (including belts).  It's a closed group, you need to request approval to join.  You might get some additional responses from those folks. 

As an aside, I had my stoma revised (unplanned, done during pouch removal), and the new stoma is miles better than the original stoma.  I hope you get similar positive results!

Good luck, I hope you keep us updated.

TE Marie, I am sorry to hear about your need for a hernia surgery. I had one 5 years ago -- after 3 colon (j-pouch) surgeries in the 5 years preceding it and before a k-pouch surgery 2 years later. The surgeon repaired both a large, post surgical, midline and a small stoma hernia using a "component separation" technique and "biologic mesh" (pig tissue.) 

I will tell you what I remember my doc (McIntosh, who was highly recommended as the best hernia surgeon in Metro Detroit and the mid-west) telling me after my surgery. First, he said hernia belts aren't going to do anything physically, just help mentally or for comfort. I said a nurse recommended one -- he reiterated that any medical professional advising them for more than comfort or that wearing a belt would prevent occurance/reoccurance were not following current medical guidelines. So I wouldn't worry about not wearing it previously, it likely more helps with comfort or bagging in your situation now.

Second, he said the component separation technique with biologic mesh had the best chance of not needing repair for this type of hernia -- but it can't be performed by the average general surgeon as the increased level of difficulty means it requires additional special training (as one of the early pioneers in the technique he actualy does nationwide training.) You can look up "component separation hernia" online (pubmed?) but basically it involves sandwiching mesh and a relocated top layer of lateral abdominal muscles to cover the midline. I think my stoma hernia was just taken care of in the "sandwich."

Lastly, when I asked about when I could return to my normal activity after surgery, he said as soon as I was up to it as long as it didn't involve strenuous activity, weightlifting, or abdominal workouts. He to absolutely never lift over 10 lbs or do any of my favorite kickboxing or pilates again. On this he was firm -- he actually chastised colorectal surgeons who tell all their patients to return to their pre-surgical activity levels, saying that's why he had so many post-surgical hernias to repair. He added that while some patients with more limited abdominal incisions might be able to do it without adverse affects, it was especially ill advised for those of us with multiple, large, midline incisions (all three of mine were "stem to stern.")

Now I understand everyone's activity levels are different and also tied to mental health as well, so this has been difficult for me to swallow. But I've adhered to his edict as best I can and have had no reoccurrences. Given your experiences , I pray you have the best surgeon and get the best procedure for your particular situation. With all your other health problems, the last thing you need to be dealing with is trying to keep your guts in where they belong!

I've been bad about checking the private message section here, but will try to keep an eye on it if you want to talk further. Best wishes, Jennifer

Thanks JenJen,

I might have you beat in number of surgeries. My husband told me to have them put in a zipper. I hate wearing that 6" wide elastic belt so really appreciate you sharing your doctor's guidance. It really bothers me as I have fibromyalgia and most bras bother me too.  My surgeon didn't tell me to wear it and I do think the nurses fit me for it in order to keep the appliance on longer. I have been wearing it for a few hours after I put on a new bag. It is worth that time because it's reduced the worrying about bag failures and increased appliance wear time.

I switched my care to the Mayo Clinic. My GI there helped me deal with my difficult j-pouch until he and I decided it was time to go. My surgeon, Kellie Mathis there is wonderful. She not only for removed my j-pouch but also diligently worked on my abdominal adhesions.  I'm going to ask her directly about using the belt "forever" as I won't be able to do it all the time.

 

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