HealingWell
Search Close Search
☰

J-Pouch Pain/Incontinence

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/29/2016 4:46 PM (GMT -5)
A question for those with a J-Pouch, especially in the early stages after takedown. Have you had to deal with any incontinence? Initially I had minor leaking, more of mucus than anything but this last week I've had bad soreness of what feels like my rectal cuff and during the night while I'm sleeping I have a small amount of stool that comes out. I'm up quite a few times because the stinging and soreness of my skin usually wakes me due to the stool that leaks out is sitting against my skin. Even if I get up and empty my pouch, clean up and go back to bed, it happens again. I don't know if the soreness is giving me trouble in holding it in or why it only seems to happen when I'm asleep. It's only been like this the past week when the bad soreness kicked in. If I feel the area that's sore, the skin seems hard while the rest seems soft.

Post Edited (blksteeda) : 3/2/2016 9:37:56 AM (GMT-7)

Posted 2/29/2016 7:15 PM (GMT -5)
I feel very lucky because I never dealt with any type of leaking. I did have a few bouts of gas that I miscalculated but that could happen to anyone really. Push too hard, you never know what you're going to get. I will tell you, things improve a lot after those first few weeks, they did for me anyway. I read about leaking in the night and I've heard it is quite common. It is something that scared me a lot. My surgeon told me it's something people deal with and I asked if you should wear a pad or panty liner and he said generally people don't need to. I haven't had anything "leak" out involuntarily. I think you're going to have to be patient. You're still very new to all of this. My skin back there was pretty bad for a while simply because the output is a different PH than my butt is used to.
Posted 2/29/2016 7:24 PM (GMT -5)
I think it happens because you relax the muscles in your sleep. You should do kegals regularly to try to get better control and tighten. I do them when I remember.
Posted 2/29/2016 9:18 PM (GMT -5)
about four weeks after my take down I had some issues with leakage (mainly at night) and some pain and pressure. It was an anal stricture causing it. Once I had it dilated in my surgeons office, it all stopped and I felt so much better. Do you have any post op appointments coming up with your surgeon?
Posted 3/1/2016 9:33 AM (GMT -5)

ByeByeUC said...
about four weeks after my take down I had some issues with leakage (mainly at night) and some pain and pressure. It was an anal stricture causing it. Once I had it dilated in my surgeons office, it all stopped and I felt so much better. Do you have any post op appointments coming up with your surgeon?

I had seen him just over a week ago and the symptoms started a couple days after that. I just called and asked for the nurse to call me back. I'm due to see him next week but if the nurse feels I need to be seen she'll get me in asap

The pain is bad at times, I noticed this morning that some of my skin is bleeding slightly and I've been using the cream a lot. I don't dare wipe, I strictly use my bidet bottle and dry off by patting, no wiping. I noticed that there is one section of skin on the edge of my rectum that is very hard and that seems to be what's throbbing
Posted 3/1/2016 10:42 AM (GMT -5)
Gordon,

I'm sorry but I've never dealt with this before. Have you tried looking for the info on j-pouch.org?

Have you tried any bowel slowing agent at night? I know that some people have had success with tincture of Opium for their night time leakages with J-pouches. So maybe imodium or similar med could help you.
Posted 3/1/2016 11:01 AM (GMT -5)

ks1905 said...
Gordon,

I'm sorry but I've never dealt with this before. Have you tried looking for the info on j-pouch.org?

Have you tried any bowel slowing agent at night? I know that some people have had success with tincture of Opium for their night time leakages with J-pouches. So maybe imodium or similar med could help you.

I've been using Lomotil during the day and just before bed, Pepto to help with the butt burn and tylenol for the pain which is pretty much useless. I got a call back he'll see me tomorrow at 4:15 to see what's going on
Posted 3/1/2016 1:18 PM (GMT -5)
I've been using calmoseptine and a&D for butt burn. sometimes I wonder if all these creams and things actually make things worse. I wonder if you have a abscess, skin tag, hemmie, or something? It will be interesting to see what the doctor says. Good luck!
Posted 3/1/2016 6:59 PM (GMT -5)

notsosicklygirl said...
I've been using calmoseptine and a&D for butt burn. sometimes I wonder if all these creams and things actually make things worse. I wonder if you have a abscess, skin tag, hemmie, or something? It will be interesting to see what the doctor says. Good luck!

I've been using the Calmoseptine for my burning skin as well, sometimes it works and others it doesn't. Idk what it could be, I'm sure he'll be checking my opening tomorrow with the dreaded finger which hurts like holy heck. It just seemed odd to me that this just started and hasn't stopped. Maybe it's a normal adjustment but I want to be sure there are no issues
Posted 3/1/2016 8:07 PM (GMT -5)
^Got to love the ol digital exam. Ugh. But it's better to know what's going on. Hope you get some answer(s) tomorrow.
Posted 3/2/2016 9:00 AM (GMT -5)
I would have some minor leaking at night. I am a very deep sleeper and was told if those muscles are relaxed or you pass gas in your sleep, it's not unusual for there to be some leakage especially in the early days, as NSSG mentioned. I never heard of using pepto for the butt burn. My surgeons staff also recommended that I don't rely on bowel slowing agents off the bat so my body could adjust on its own.

My routine of using the handheld bidet, patting dry, and applying a gauze pad with some calmoseptine or burts bees diaper cream with high zinc oxide content for about 4-6 weeks out worked really well. I am over three months out at this point, use standard TP, no creams, and have no issues. I sleep through the night (sometimes as much as 9 hours) without having to get up and without having any incontinence. You are still very early on in the process. I would be patient with it and wear a pad or diaper at night until your body adjusts.
Posted 3/2/2016 9:16 AM (GMT -5)

atwoodt said...
I would have some minor leaking at night. I am a very deep sleeper and was told if those muscles are relaxed or you pass gas in your sleep, it's not unusual for there to be some leakage especially in the early days, as NSSG mentioned. I never heard of using pepto for the butt burn. My surgeons staff also recommended that I don't rely on bowel slowing agents off the bat so my body could adjust on its own.

My routine of using the handheld bidet, patting dry, and applying a gauze pad with some calmoseptine or burts bees diaper cream with high zinc oxide content for about 4-6 weeks out worked really well. I am over three months out at this point, use standard TP, no creams, and have no issues. I sleep through the night (sometimes as much as 9 hours) without having to get up and without having any incontinence. You are still very early on in the process. I would be patient with it and wear a pad or diaper at night until your body adjusts.

My main concern is the pain that's been present for over a week, sometimes unbearable. The incontinence has only started since then. I had read about using pepto over on jpouch.org, it was recommended a few times. With all I've been through I'm not taking any chances
Posted 3/2/2016 10:21 AM (GMT -5)
What kind of pain are you experiencing? Is it cramping, rectal pain that gets intense and then subsides? Or is it a dull, constant pain? Your thread title is "J-pouch incontinence" and you don't mention pain in your initial post...so if your main concern is pain and not incontinence, maybe you should re-title your thread or start a new one.
Posted 3/2/2016 11:30 AM (GMT -5)

atwoodt said...
What kind of pain are you experiencing? Is it cramping, rectal pain that gets intense and then subsides? Or is it a dull, constant pain? Your thread title is "J-pouch incontinence" and you don't mention pain in your initial post...so if your main concern is pain and not incontinence, maybe you should re-title your thread or start a new one.

I had worded it bad soreness in my initial post and that the incontinence has started since the pain has. The pain is a bad localized throbbing pain that gets very intense at times to where I can't sit and hurts to even walk. It's always there and doesn't go away completely. The incontinence has only been present since the pain started 10 days ago
Posted 3/2/2016 4:07 PM (GMT -5)
Fortunately (for me) I did not experience anything like that. I would get strong cramping/jpouch spasms that would spontaneously occur and then subside and the perianal skin would get a little raw if I wasn't diligent about applying the zinc oxide cream, and both are fairly typical for new jpouchers. It's glad you are getting it checked out.
Posted 3/2/2016 6:00 PM (GMT -5)
ding ding ding, we have a winner...I have a stricture. Holy **** did that hurt when he dilated my opening. He put his finger way up in my pouch and rotated his finger all the way around. He has to do it again in two weeks. If this doesn't work he said they can insert balloons up there to dilate it in the endoscopy room. The option after that is surgical where they make a couple of incisions to relax the muscle. He said my skin is horribly irritated and has a specialty pharmacy mixing a cream which will be delivered on Friday. The stricture he said very well can cause my incontinence. Right now my rear end hurts bad. Lets see how tonight goes
Posted 3/2/2016 7:31 PM (GMT -5)
Oh gosh, you poor thing. I am so sorry.
Posted 3/2/2016 9:10 PM (GMT -5)
Had a feeling that's what it was. I just wrote to you about my dealings with a stricture in your UC forum thread.

Your butt is going to be sore for a few days.
Posted 3/5/2016 1:43 PM (GMT -5)
I'm so glad they found out what is going on.

I hope the dilation works, or if necessary to have surgery, then that will work and make it all smooth for you.
Posted 3/8/2016 10:46 AM (GMT -5)
I am improving a little each day, my skin issue is coming under control and the incontinence is vastly better, only minor leak or two during the night :)
Posted 3/24/2016 5:20 PM (GMT -5)
I,m new here, had a total colectomy with ileostomy abut a year now , still not made my mind up abut reversal op, reading these threads eeek ,... not sure if I want to go for it lol !!!
Posted 3/25/2016 8:09 PM (GMT -5)

sprinkly said...
I,m new here, had a total colectomy with ileostomy abut a year now , still not made my mind up abut reversal op, reading these threads eeek ,... not sure if I want to go for it lol !!!

read mine over in the UC forum titled "Decision Made". It's pages of my experience from my decision, through surgery, complications and now reversal. I'm very happy I got reversed
Posted 3/27/2016 10:23 AM (GMT -5)

sprinkly said...
I,m new here, had a total colectomy with ileostomy abut a year now , still not made my mind up abut reversal op, reading these threads eeek ,... not sure if I want to go for it lol !!!

I had mine reversed in November and it was a piece of cake. I had 3 steps... I am not sure if you're one or two steps away from getting reversed. Steps 1 and 2 were difficult for me, but step 3 was a breeze.

Overall, the surgeries weren't easy, the whole process was long and arduous, but looking back, it was the best thing for me. If you made it through the first step, chances are you would manage through the others if you want the reversal. Some people don't want it... there are risks.

I have no regrets at the moment. I didn't have complications that required extra hospital time. Healing was quick. I didn't take a ton of time off of work to recover. With each step, I was out of the hospital in 2-5 days, never readmitted. It's all very individual. Some people do really well and others have a much harder time recovering. It's impossible to know how it will work out. That's why surgery is a very scary proposition. Even in the case of having an ileo and considering a reversal.
Posted 3/27/2016 11:52 AM (GMT -5)

sprinkly said...
I,m new here, had a total colectomy with ileostomy abut a year now , still not made my mind up abut reversal op, reading these threads eeek ,... not sure if I want to go for it lol !!!

On going issues are in the minority not the majority. I love my j pouch. The only thing that would be better is a healthy, non UC riddled colon. But that wasn't in the cards for me. Good luck deciding!
Posted 4/7/2016 9:05 AM (GMT -5)

sprinkly said...
I,m new here, had a total colectomy with ileostomy abut a year now , still not made my mind up abut reversal op, reading these threads eeek ,... not sure if I want to go for it lol !!!

As others have said its different for everyone. Some are ready to be up and out a month or two after surgery, I still have issues 3 months post takedown. My surgeon says because my body went through so much ( raging UC, high risk pregnancy, systemic RA,etc) I can expect to have more issues than some, he still estimates a year before I'm back to "normal". I still leak at night, I still experience the type of pain the OP is talking ab in the rectum area, I still occasionally have to use an opiate to deal with the pain... And I definitely still need butt creams. But that's just my road to recovery. Yours, depending on your disease and your body, may go very easy with little complication. I find more people than not say that even if they have complications, it's still worlds away from living with UC or Crohns.
✚ New Topic ✚ Reply