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So I had my pouch redo about 5 years ago now. I do sometimes experience a very small spot of leakage, and for that I wear a pad just in case. Now Dr Shen stated that with redos, the pouch sits closer to the anus so irritation is common. I have tried everything under the sun to try and help this irritation/burn and nothing seems to work.

I have tried;

calmoseptine-a sticky mess

Ilex- sticks to hairs on my butt and when using a bidet it becomes a mess

Bag Balm- no real help

Vaseline-no real help

Vicks- cools and feels good for a bit but only temporary

Lidocaine- numbs pain shortly but only temporary

A&D ointment- no help really

Nupercainal-- some relief but not much

I don't know if the pads are irritating the area or the leakage that occurs occasionally, but its horrible.

any other suggestions??

Last edited by Pouchomarx
Original Post

Guarantee it’s the leakage.

Although, you’ve tried ilex and it’s caused issues, have you ever tried applying it just to the inside of the anal sphincter ?

I’ve had tremendous results when treatIng and elevating the pain and discomfort of an anal fissure, by applying the ilex internally.

Yeah, it sounds horrendous and somewhat uncomfortable but sometimes, needs must, especially when the benefit outweighs the discomfort; also, when applying it, it’s not so bad. 

On the ilex Box and Tube, it clearly states for “ External Use Only ” although I’ve been using it as I’ve described, on and off for 5½ years and without issues.


Unless treating severe diaper rash type butt burn or extensive skin erosion around a stoma; I find less is more; meaning to prevent butt burn or skin erosion; only a small pea size amount of ilex is required and smeared over the area to be protected, so it lies on top.

Otherwise, as you say, it becomes thick and gloopy and difficult to remove; although, I believe it’s easier to remove by way of baby oil. 

Last edited by strange

yes I do apply a little to the inside, that's where it hurts. I have a scope with my surgeon next month since I am almost 2 years from my last scope. I did get scoped right as I started having this soreness on last scope but nothing was found. Shen just said typically redos have irritatiob issues there as the pouch is sewn closer to the anus. but I was fine for almost 3 years after the redo, now last 2 I have had this

i have had a jpouch for 25 years and am finally going to have it removed because i have fistulae that won't heal, but i can tell you that bad butt burn has been a persistent problem.  sometimes, it is so severe that i need narcotics to fall asleep.  the only thing that helps is being religious about sitz baths--4x day--and barrier cream (i use calmoseptine, and yes it is a mess) every single time i go.  

not having it anymore is the only reason i'm looking forward to a permanent ileostomy.

Sorry to hear about your pain. I’ve had my Jpouch for 26 years and have diarrhea every time I go to the toilet. Most medications for diarrhea work for a few days then stop working. I also had a redo in 2009. Working much better.  I suffered with but burn most of the time so I totally understand your pain. Finally I got a BIO BIDET. It is a life changer! Got the last one on New Egg right as the pandemic started with the toilet paper shortage. Feel very luck. But you can even use a squirt bottle the clean yourself and get rid of the acidic stool. Epsom salts baths helps too. Try a bland diet?

@BarbieG posted:

Sorry to hear about your pain. I’ve had my Jpouch for 26 years and have diarrhea every time I go to the toilet. Most medications for diarrhea work for a few days then stop working. I also had a redo in 2009. Working much better.  I suffered with but burn most of the time so I totally understand your pain. Finally I got a BIO BIDET. It is a life changer! Got the last one on New Egg right as the pandemic started with the toilet paper shortage. Feel very luck. But you can even use a squirt bottle the clean yourself and get rid of the acidic stool. Epsom salts baths helps too. Try a bland diet?

Why did you need a redo???

@egk posted:

i have had a jpouch for 25 years and am finally going to have it removed because i have fistulae that won't heal, but i can tell you that bad butt burn has been a persistent problem.  sometimes, it is so severe that i need narcotics to fall asleep.  the only thing that helps is being religious about sitz baths--4x day--and barrier cream (i use calmoseptine, and yes it is a mess) every single time i go.  

not having it anymore is the only reason i'm looking forward to a permanent ileostomy.

I am sorry to hear that! Have you had problems with ia ileostomy in the past???

@egk posted:

i have had a jpouch for 25 years and am finally going to have it removed because i have fistulae that won't heal, but i can tell you that bad butt burn has been a persistent problem.  sometimes, it is so severe that i need narcotics to fall asleep.  the only thing that helps is being religious about sitz baths--4x day--and barrier cream (i use calmoseptine, and yes it is a mess) every single time i go.  

not having it anymore is the only reason i'm looking forward to a permanent ileostomy.

How did you get a fistula??? Crohns disease???

@Lauren Of Emerald City posted:

How did you get a fistula??? Crohns disease???

Yes--I have crohn's and a j-pouch.  did very, very well for 25 years and then suddenly started getting fistulae that won't heal, even after 3 setons.  very painful.  got sepsis.  the whole deal.  now they're saying surgery is the only cure for recurrent fistulizing crohn's that doesn't respond to 6mp or biologics.

by the way, the only thing that changed before my flare was that i started drinking sports drinks with carrageenan.  

I am sorry to hear that! Have you had problems with ia ileostomy in the past???

Yes--had a temporary one before my jpouch takedown.  leaked constantly, horrible bloody rashes from it, felt like i was literally on fire 24 hours a day.  worst 2 months of my life.  i told my surgeon i WON'T go through that again--i would rather die.  both my local surgeon and cleveland clinic assured me it won't happen with a permanent ileo, but i'm skeptical.  i'm also overweight, and i've read that 1 in 3 ileostomy patients with rounded bellies have moderate to severe leakage and skin problems.

@egk posted:

@Lauren Of Emerald City posted:

Yes--I have crohn's and a j-pouch.  did very, very well for 25 years and then suddenly started getting fistulae that won't heal, even after 3 setons.  very painful.  got sepsis.  the whole deal.  now they're saying surgery is the only cure for recurrent fistulizing crohn's that doesn't respond to 6mp or biologics.

by the way, the only thing that changed before my flare was that i started drinking sports drinks with carrageenan.  

I am so sorry . I doubt sports drink did it since we all have drank that, but goodness! I am sooo shocked it failed after 25 years.

@egk posted:

Yes--had a temporary one before my jpouch takedown.  leaked constantly, horrible bloody rashes from it, felt like i was literally on fire 24 hours a day.  worst 2 months of my life.  i told my surgeon i WON'T go through that again--i would rather die.  both my local surgeon and cleveland clinic assured me it won't happen with a permanent ileo, but i'm skeptical.  i'm also overweight, and i've read that 1 in 3 ileostomy patients with rounded bellies have moderate to severe leakage and skin problems.

I heard the end ilestomy works better than loop. I sure it will be okay for you. I hope the permanent ileostomy works out for you! When do you get it done???

@BarbieG posted:

Lauren of Emerald City

I had a redo 15 years after my first surgery. My doctor at that surgery said it looked like my Jpouch was in upside down? Working good now. I think as time goes on it changes to work more like a colon, at least that’s what one doctor told me. 

Oh my goodness! Maybe the prior surgeon did it wrong. He needs to get sued big time, might be hard to prove he messed up after 15 years though. I am glad you are better and thank goodness you did not get septic! 

Lauren

Tried suing, for another reason, but I was in better shape after the surgery. If I would have died, my husband would have a case and no attorney would touch the case because that surgeon was in the big leagues in that area. He’s probably dead now. Basically I would have died without surgery at that time. Jpouch did work but not properly. It was still kinda new in 1994. 

@BarbieG posted:

Lauren

Tried suing, for another reason, but I was in better shape after the surgery. If I would have died, my husband would have a case and no attorney would touch the case because that surgeon was in the big leagues in that area. He’s probably dead now. Basically I would have died without surgery at that time. Jpouch did work but not properly. It was still kinda new in 1994. 

I hate how a lot of people in the medical field are soo protected when they do something wrong. Its not fair but then again life is not fair a lot, especially for sick people. I wish your surgery was free since they messed it up the first time. Its a shame! I am soo happy you are better though . I hear robotic is more safer nowadays. 

I've found this a little hard to come by, but ProShield Plus has never let me down. If you use a very thin layer, it dries and feels a little like rubber. I know this, because I've used it on my upper lip when I've had a bad cold. It prevents the skin from becoming raw and flakey. 

Bought a case of it last time I bought it, because Hospitals use it and the inventory is low at times. 

I hope you find something that works.

-Roni*

 

@BarbieG posted:

Sorry to hear about your pain. I’ve had my Jpouch for 26 years and have diarrhea every time I go to the toilet. Most medications for diarrhea work for a few days then stop working. I also had a redo in 2009. Working much better.  I suffered with but burn most of the time so I totally understand your pain. Finally I got a BIO BIDET. It is a life changer! Got the last one on New Egg right as the pandemic started with the toilet paper shortage. Feel very luck. But you can even use a squirt bottle the clean yourself and get rid of the acidic stool. Epsom salts baths helps too. Try a bland diet?

I do use a portable squirt bottle at home. Dr Shen told me with redos, the constant irritation is somewhat normal due to the pouch being sewn closer to the anus.. this sucks

@Pouchomarx - I've posted about this a number of times so apologies if it's a repeat to you.  Like you, I was at the end of my rope with skin problems down under.  I had massive problems with this and it got worse and worse over the years.  I thought I had tried everything (although I doubt that now, after seeing your list).  I saw docs ranging from my internist, two different GI docs and two different dermatologists.  The last dermatologist I saw (she had a waiting list of 10 months but came very highly recommended) finally cracked the code for me.  She sent me to a third dermatologist that specialized in skin allergies.  I thought the tests would come back negative.  Some testing later, and lo and behold, I am allergic to a bunch of chemicals and some food.  The doc helped me figure out what was safe for me.  My biggest food culprit was tomatoes.  I eliminated them and voila, my butt burn all but disappeared.  I changed my body care products (shampoos, soaps, etc) and the rest of my skin is now lovely and honestly, I hadn't realized that the rest of my skin had so many issues.  

You may not have food allergy issues but it's another path you may want to check out.  Best of luck to you.

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