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I had a mucousectomy when my pouch was created. I have questions about it myself. I have not had take down and its been a long road thus far. I have some leakage issues that come and go and I'm not sure what is going on when that happens. Sometime my butt feels sore on the inside for no real reason. I see red blood from time to time. Comes and goes.

I've been put on antibiotics a few times and I will say it does clear me up for a while.

It sometimes feels like I still have UC down there. I hope not. Lots of questions.

 

 

Has anyone here who had the mucousectomy had leakage of stool issues ? I just had my pouch totally redone 8 weeks ago by Dr Remzi at the Cleveland Clinic and I have to use a pad back there due to the mucous leaking out. Sometimes I can feel it coming and can squeeze and hold it, but sometimes the pad is soaked and I was not aware it happened. I had the manometry test 2 weeks ago where they test your sphincter muscles resting and squeezing positions, and I was told my one side was normal and the other side was on the low end of normal. I will be getting connected back up on March 7th but I am scared of crapping myself now. I know the mucous is normal but I had no issues at all with it leaking after first pouch but now the new pouch with the mucousectomy I have a lot of it and sometimes cant hold it. Is this just more difficult due to it being more slippery and liquidy? once I am hooked up and the stool is thicker should I be ok? Does the manometry test have any bearing on outome, even after the mucousectomy and the mucous coming out unnoticed?

Poucho, the mucus leakage does not predict post-takedown leakage. It's best not to try to use meaningless information to predict problems. It's true that a mucosectomy carries a higher risk of leakage, but it was a sensible, calculated risk to take in your case. It is excellent news that your sphincter muscles are working well - that's meaningful information!

Scott can speak for himself, but I think he means that collecting information about others who had leakage issues after mucosectomy will only add needless worry. You will not know about your specific case until after your takedown and adaptation phase. You already know there are risks. If there weren't, they would do mucosectomy routinely.

I know it is easier said than done, but you may as well assume that things will go well for you. Worrying about what may not happen is a waste of energy and can even create hormones and other chemicals that sabotage healing. There is power to positive thinking!

Jan 

Jan nailed it, of course. The procedure has risks. If it failed too often they simply wouldn't perform it so willingly, but it carries enough risk to make it best reserved for a second choice. Whether or not some of those successes or failures happen to see your post and respond doesn't change this reality.

I think you'll do fine, as most do, particularly in the hands of a gifted surgeon.

Last edited by Scott F

To revisit this, I have had my redone pouch with mucousectomy now for almost a year and a half since takedown. Had my annual scope last Friday. The pouchoscopy done my Shen, he said it looks good. Biopsy showed very mild inflammation in the cuff.  I haven't had any symptoms of this inflammation that I'm aware. I'm waiting to hear back from Dr Shen on this but do they treat this if it visually is not there but just shows on biopsy?

Maybe not. I was actually having this discussion this week with my GI as I'm on Entyvio and doing well ( btw I also had a mocousectomy 18 years ago) anyway I have not had a scope in 2 years and was like I feel ok what if you find inflammation? I'm ok do I really need to do this? Anyway my surgeon says that most jpouchers have some sort of inflammation, some it bothers and some it does not. Mine was mild but I was very very sick. Go figure, he's seen some pouches really messed up with no symptoms. 

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