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I have a jpouch and have developed fistulae (3 setons) that won't heal.  i've failed all medications/biologics.  Pain is constant, bleeding is constant, surgeon and MD are both telling me to get a permanent diversion and remove j-pouch.

When I had my jpouch surgery (in 1999), the temporary ileostomy  didn't work well at all.  Constant leakage, skin was on fire 24-7.  I can't live like that again.  So naturally, I've resisted this surgery and I'm terrified.

My biggest fear is constant leakage.  I know there are things I can do to thicken it, but what are the odds of incurable leakage problems? 

I live alone and so I'll have to take care of myself (I had had help with the temporary one)--how hard is it?

I should also say: I've got a big belly with lots of scar tissue from prior surgery.  Any fellow fatties out there have advice?

Finally, should I keep trying to live with the setons?  I'm afraid I'm trading one awful experience for an even worse one.

Lots of questions, any feedback is welcome. 

 

 

Original Post

I had no issues with my end ileostomy but constant leakage and issues with my loop. End no burning, loop constant burning and leakage. I would assume if going to a permanent it would be end. In the 3 months I had the end ostomy I had no issues changing it. Making sure you have the right supplies for you is key and an ostomy nurse can help with that.  I'm sure this is a very difficult decision, it would be for me.  Best of luck!

I had a large, indented scar on my right side, so the surgeon put the permanent ileostomy on the left.  I also had a fistula and many, many repairs, but it never closed.  Please read my posts on my page.  Permanent ileostomies are so much easier than temporary ones.  They are a whole different ball game.  If you have any left over supplies, try placing them in different positions on your belly.  Do this with the ET nurse to find just the right spot for the stoma.  I made sure that it was placed below any pant waistbands.  You deserve a new, wonderful, healthy life.  I waited a long time before my permanent ileostomy, and I wish now that I had done it sooner.

Caty 

I have heard this many times from many people, that the permanent end ileostomies are a "different ballgame" than the temporary loops. It's never been made clear to me why that is. I had the temporary ileo for 3 months and it was constant leakages, burning and a yeast infection around the stoma which only resolved with takedown. I couldn't get a good seal on the ostomy bag appliance where it adheres to the skin and nobody has ever been able to explain how, exactly, that issue would be different with a permanent end ileo. 

Last edited by CTBarrister

A well constructed end ileostomy tends to be quite symmetric, since the thing being attached to the skin is circular. The shape of a loop ileostomy tends to be asymmetric, exiting from the side of a loop of bowel. Even if the loop ileostomy looks circular the tensions may be uneven at different points along the circumference.

Last edited by Scott F

I was in much the same situation, finally had a diversion (with end ileostomy), and a yr later my pouch, fistulas (2) and abscess were all removed, I got a "Barbie Butt", and my stoma was revised, due to a kink.  The end ileostomy is indeed much easier to deal with, although it may take some trial and error in getting the right equipment.  Find a good ostomy nurse to help you with this if you decide on the surgery.  Also, I really don't know what surgeons have to take into consideration as they're constructing a stoma, but I'd ask about getting a longer rather than shorter one.  My revised one is just under an inch, and that seems just right for me.  The first one ("kinked") was just barely above skin level and that caused issues.

I started a thread here:  https://www.j-pouch.org/topic/...-and-time-set?page=1 that details my journey through the removal, if you are interested.  Best of luck with everything!

@CTBarrister posted:

I have heard this many times from many people, that the permanent end ileostomies are a "different ballgame" than the temporary loops. It's never been made clear to me why that is. I had the temporary ileo for 3 months and it was constant leakages, burning and a yeast infection around the stoma which only resolved with takedown. I couldn't get a good seal on the ostomy bag appliance where it adheres to the skin and nobody has ever been able to explain how, exactly, that issue would be different with a permanent end ileo. 

Yeast infections around the stoma??? Dang that sounds super painful!!! I never knew that could happen! I could not imagine going through that!

@n/a posted:

I was in much the same situation, finally had a diversion (with end ileostomy), and a yr later my pouch, fistulas (2) and abscess were all removed, I got a "Barbie Butt", and my stoma was revised, due to a kink.  The end ileostomy is indeed much easier to deal with, although it may take some trial and error in getting the right equipment.  Find a good ostomy nurse to help you with this if you decide on the surgery.  Also, I really don't know what surgeons have to take into consideration as they're constructing a stoma, but I'd ask about getting a longer rather than shorter one.  My revised one is just under an inch, and that seems just right for me.  The first one ("kinked") was just barely above skin level and that caused issues.

I started a thread here:  https://www.j-pouch.org/topic/...-and-time-set?page=1 that details my journey through the removal, if you are interested.  Best of luck with everything!

Did you have blockages with your ostomies???

Yeast infections around the stoma??? Dang that sounds super painful!!! I never knew that could happen! I could not imagine going through that!

Basic fact of nature and biology: Yeast/fungal infections flourish anywhere the sun doesn't shine and where there is moisture. When you have nonstop leakages and the sun is not  shining on your abdomen, the two elements to create the medium in which fungi thrive are present.

I battled yeast infections for 25 years taking antibiotics. In an average male the most common fungal infections are jock itch (underside of scrotum) and athletes foot (soles of feet), again, areas of the body where (1) sun doesn't shine and (2) moisture collects during activity.

In my experience however with antibiotics, the 2 areas where I would get yeast infections were armpits and leg pits, for the aforementioned reasons. And you stop the yeast infections by keeping the areas dry and getting light on them and using antifungal powder.

The temporary ileostomy and constant leakages and the appliance created a situation of constant moisture and since I couldn't get light on my scar, or keep it dry, I couldn't solve it. Takedown solved it. But for the constant leakages that NEVER would have happened.

Last edited by CTBarrister

Think of a permanent ileostomy like this:  Grab a piece of paper, cut a small hole in its center, poke your thumb through.  That is a permanent ileostomy.  It sticks out nice and straight and does not tip down.  This is not meant to be silly; I'm just trying to make a point that probably just about everyone has had a problem with their temporary loop ileostomy.  I did too.  Everything is much easier with the end ileostomy.  I've had mine for 13 years.  I don't even use skin barrier stuff or paste anymore.  I use a moldable flange, form the hole to my size with my finger tips, place it over my stoma, attach a bag, and I'm good to go.  It lasts four to five days and I live in Florida.  A quick story:  When I had my j-pouch removed I gave my surgeon a picture of a red rose bud and said "Promise me a permanent ileostomy that looks like this" and he did.  A skilled, compassionate surgeon is everything...  Caty  

Last edited by Caty
@CTBarrister posted:

Basic fact of nature and biology: Yeast/fungal infections flourish anywhere the sun doesn't shine and where there is moisture. When you have nonstop leakages and the sun is not  shining on your abdomen, the two elements to create the medium in which fungi thrive are present.

I battled yeast infections for 25 years taking antibiotics. In an average male the most common fungal infections are jock itch (underside of scrotum) and athletes foot (soles of feet), again, areas of the body where (1) sun doesn't shine and (2) moisture collects during activity.

In my experience however with antibiotics, the 2 areas where I would get yeast infections were armpits and leg pits, for the aforementioned reasons. And you stop the yeast infections by keeping the areas dry and getting light on them and using antifungal powder.

The temporary ileostomy and constant leakages and the appliance created a situation of constant moisture and since I couldn't get light on my scar, or keep it dry, I couldn't solve it. Takedown solved it. But for the constant leakages that NEVER would have happened.

Oh my goodness! I bet your stoma was super itchy!!! I never heard of yeast infections around the stoma from anyone until you told me about you. I bet that was awful, I could not imagine that constant itchiness! and just the anxiety from it. I am sorry that happened to you, thank goodness takedown solved everything. Maybe the ostomies belts would have helped with a better seal, I hear that helps a lot of people, but at least you do not have to worry about it anymore with takedown. 

@egk posted:

I have a jpouch and have developed fistulae (3 setons) that won't heal.  i've failed all medications/biologics.  Pain is constant, bleeding is constant, surgeon and MD are both telling me to get a permanent diversion and remove j-pouch.

When I had my jpouch surgery (in 1999), the temporary ileostomy  didn't work well at all.  Constant leakage, skin was on fire 24-7.  I can't live like that again.  So naturally, I've resisted this surgery and I'm terrified.

My biggest fear is constant leakage.  I know there are things I can do to thicken it, but what are the odds of incurable leakage problems? 

I live alone and so I'll have to take care of myself (I had had help with the temporary one)--how hard is it?

I should also say: I've got a big belly with lots of scar tissue from prior surgery.  Any fellow fatties out there have advice?

Finally, should I keep trying to live with the setons?  I'm afraid I'm trading one awful experience for an even worse one.

Lots of questions, any feedback is welcome. 

 

 

Make sure to get OSTOMY BELTS too, they help a bunch! And use lots of stoma powder!

I had an end ileostomy for 6 months between step 1 and and 2 (I had 3 step), and I believe it was a great experience to have. It was so easy that I was considering not even getting a j-pouch at all. Now I have my j-pouch, I am not scared of going back to an ileostomy, if becomes necessary.

When I had the loop, and it was such a nightmare. It was retracted into the skin, directly shooting down on the skin. I had to change on average everyday. One night I had to change three times, because it would leak as soon as I would change it. The skin was so sore all the time. End ileostomy on the other hand was something that I would forget that I had unless I felt the bag for some reason. So there is no need to fear the end ileostomy.

When I had the end ileostomy, I was told to wash my skin with anti-dandruff shampoo between changes to avoid yeast infections, which I am prone to getting. It really works. I always washed the skin around my stoma between changes and used a blow dryer to dry before putting the appliance, and I could avoid yeast infections 100%.

@Elif posted:

I had an end ileostomy for 6 months between step 1 and and 2 (I had 3 step), and I believe it was a great experience to have. It was so easy that I was considering not even getting a j-pouch at all. Now I have my j-pouch, I am not scared of going back to an ileostomy, if becomes necessary.

When I had the loop, and it was such a nightmare. It was retracted into the skin, directly shooting down on the skin. I had to change on average everyday. One night I had to change three times, because it would leak as soon as I would change it. The skin was so sore all the time. End ileostomy on the other hand was something that I would forget that I had unless I felt the bag for some reason. So there is no need to fear the end ileostomy.

When I had the end ileostomy, I was told to wash my skin with anti-dandruff shampoo between changes to avoid yeast infections, which I am prone to getting. It really works. I always washed the skin around my stoma between changes and used a blow dryer to dry before putting the appliance, and I could avoid yeast infections 100%.

A blow dryer?? Dang! You must be a super hero! If I did that, I would be scared lol.

egk

I also had ileostomy for 3 months before take down in 2010.  I had so many problems with leaking.  I had a few nurses trying all different type of bags. I even had the top ostomy nurse trying to help me get the right ostomy bag.   Finally I called the  company of the make of the ostomy bag.  It took a few weeks for me to find the correct fit.  The women that I spoke with was very helpful.  She would send me supplies and explain how to use it.  If that didn't work I would call her back and she would send something  different and explain to me exactly what to do. If that didn't work I called her back.  She was great. after awhile I had it down Pat.  I really should have stayed with ileostomy bag.  I really was doing very good with that. I am sure they have better ones now.     Good luck to you  it isn't as bad as you think.     Grace

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