I had my J-pouch removed almost 4 years ago. I have a permanent iliostomy Unfortunately I am still having discharge from what is left of my rectum. I have pain at times right above my pubic bone. After the pain I will usually have more discharge. It is particularly bad at night when my muscles are totally relaxed. It is so frustrating to have bloody foul smelling discharge every day. I have to wear a pad every day and will have to change it every night those times I get up to empty my ilio pouch. Am I the only one having this problem? If you had the problem and found a solution, please tell me what you did to clear it up. thanks
I only had that problem with my temp loop ostomy. After that I lost the rectum so the problem is obviously gone. I'm so sorry, that is do frustrating. Mine was never painful. Hope you find answers.
Are you sure they removed your J pouch? This sounds like what I had with a disconnected J pouch and an end ileo, except no pain. If your J pouch was removed, and you don't have a "barbie butt" you should have at most a tiny bit of rectum plus your anus. That is what I have, maybe total of 2 to 3 inches. I have a tiny bit of mucus which doesn't amount to anything really. A disconnected J pouch or if they left too much can and often does get what is called diversion colitis that is very hard to treat, I had to get my J pouch removed to end it.
The other possibility I can think of is, that makes sense with your pain is that you have an abscess leaking out. This can be treated. Probably need a CT to confirm.
It sounds like you need to see your GI or Surgeon. I didn't have much of a discharge when I was just diverted to a perm ileo and still had my j-pouch. (In a subsequent surgery I had it all removed and now have a Barbie butt.)
HI Holly, I am in the same boat as you and I understand this is completely normal when your pouch has been disconnected but is still left in place ie. not fully removed. Its really annoying I agree. Its just that the lining of the bowel is wired to create mucous. So it just keeps doing it. I have been putting up with it for several years now, the option is really a final surgery to have the pouch and remains of the rectal cuff removed.
Thanks for the replies. I have for the last couple of weeks passed gobs of bright red blood. I am having a scope if it can be scoped. Let y’all know what happens
Sadly it sounds like you might still have something like cuffitis. If you need the surgery to have it all removed and go to a barbie butt then know the recovery is mostly uncomfortable when sitting without a cushion for months.
Oh, yikes. I've had my permanent stoma for a couple of years now and just last month started with anal mucous discharge. It was only a tiny bit at first, but sometimes now it is almost a cup or more and has me running to the bathroom -- or worse. My pouch is disconnected but not removed; sounds like I might be facing another surgery if this gets worse. Yee haw.
I have had this with my disconnected pouch, too. I also have a couple of attached fistulas, which probably contribute. My surgeon put me on Keflex in August, I'm now taking 250 mg 1/day, and it seems to have helped. I feel like I have to "go" like - NOW - "only" once or twice a day anymore, and sometimes there's quite a bit that comes out.
I'm waiting for a call from my GP to get a referral to a GI. Think that's the route I need to go. Unfortunately my surgeon is not in my city, and getting an appointment can take a very long time. As I've been well for quite a while, officially I'm discharged... But I think if I see the GI here, he/she will simply bump me up to my surgeon, which means a faster appointment time. Gotta know how to work the system!
Hoping something else works other than surgery. Really don't want to do that again.
Is there any new info from anyone on this? I’m having the same issues and have a scope next week. I’m in a temp end ostomy and nothing is connected to my pouch so I shouldn’t be having this pus/blood coming out a ton my Dr said.
Yikes! sounds like something is going on! Hope he can figure things out for you. I would have this taken care of before your connected. Prayers for you!