New j-pouch discomfort

I would say it's typical. I experienced this and all of it resolved for me when I had takedown (I'm also a 3-stepper).

But just to be on the safe side, give your surgeon a call.

kathy

Thanks Kathy Seems no matter how diligently I read about this stuff there's always some new experience, which is totally typical, that I'm surprised by. My post-op appointment is on Tuesday so I'll check in with the surgeon then! (Fingers crossed he OKs me to graduate to full low-residue diet then too).

oh liz.. that is EXACTLY how I felt after step 2. Please talk to your surgeon in detail. Don't want to scare you, but I ended up with extremely bad diversion pouchitis and then ended up with massive stricturing which required dilatation. Problem is my surgeon didn't listen to me and things kept getting worse. So about 4 months after step 2 I was back in the OR getting a dilation. But even after that I still had to deal with the diversion pouchitis until step 3.

I'm a bit concerned for you because you had the same rectal garbage going on that I did after step 1. Please question your surgeon about diversion pouchitis. For me, it caused whole body problems, much like a massive UC flare - unbearable joint pains, fevers, etc.

hopefully for you, this is all just post surgery gunk trying to get out and everything will resolve in a few weeks.

AND PS. cut out ALL sugar, I mean ALL sugar. Also try drinking only a true WHO solution all day every day and not plain water ever. These two things should reduce your ileo output.

Hope you get some answers, good answers tuesday. What is WHO solution?

Take care.

sigh... I will definitely push for solid answers on Tuesday. Thanks for the perspective Liz.

I'm going to mix up the WHO solution today and make the switch from plain water. I've gotten my output down to about 1000 cc consistently by eating only thickeners, no sugar, and separating beverages from meals, but I still have at least a bag or two of pure liquid each day and I know I should be closer to 750 than 1000. We'll see.

Try not to worry. You are fresh out of surgery and things take time inside to heal. I had that pressure feeling a lot to. It wasn't constant but I was aware of it many times. I also expelled a lot of mucus before takedown. Make a list if everything that is concerning you to take to your appt. I would always blank out when I got there because I never wrote anything down.

My hubby had things coming out of his bum the entire time he had his ileostomy. Every day he was expelling mucus. We were told it was completely normal because your bowels are still "active" and even though they aren't producing poop they are still working.

It was a long time ago, but I remember when I had my loop ileostomy, and my pouch was healing, that there was mucus discharge that would happen. At first it had a blood tinged look to it, then it just was mucus. I would get this spasmy feeling, and then it would come out, and I had no control over it. I wore a pad for probably the first two months after my first surgery because of it. But it dwindled over time.

My surgeon said to me that when the mucus discharge became less, that was his cue that I would be ready for reattachment, and to start using the J pouch. It was almost four months to the day that I had my takedown, and my discharge was very little if any at that time.

Very interesting Rachel, I will definitely ask my surgeon about that. Gosh sorry to hear you had leakage for so long!! When I realized I was subconsciously "holding" the mucus and drainage was my first "wow" moment with the j-pouch

The pressure feeling definitely comes and goes, so hopefully as the days go by it will be more go than come, so to speak. I'll definitely ask my surgeon tomorrow about how long I can expect to have this discharge/sensation and how we would identify potential cuffitis or diversionary pouchitis vs. normal discharge. Will update after the appointment, thanks so much everyone!!

(PS - Amythyst so happy to hear how well your husband is doing!!)

Liz,

I used to have the same urges and uncomfortable feeling for quite a few days after the creation of the j-pouch. They went away with time. I am hoping that is the case with you too!

Glad that you are doing better.

Hey all!

Had a very fruitful meeting with my surgeon. He says the discharge is normal though he does expect it to taper off, as well as the feeling of pressure. He says he doesn't think I have any cuffitis or diversionary pouchitis but it would be basically impossible to diagnose either of those at this time, so basically just stay vigilant. He also did a rectal exam and says the anastomosis feels great with no narrowing. Also relieved to hear that pathology was totally as expected on all samples (severe UP in the rectum, completely normal ileum).

Thanks for the kind wishes and advice... I'm sure I'll be back with some more neurotic concerns before long

Great news! Thanks for letting us know.