new j-pouch not emptying, help please

Hello, Kate and Matt.

This is so difficult for you both. What is your typical day of food and drink? 

What did the surgeon tell you to do, besides diagnosing a strong muscle structure? 

Hi Kate and Matt

Try moving in different positions while on the toilet.  Sometimes putting pressure on different areas of your rear end will help.   Also, a sits bath may help him to relax.  I do this sometimes when I have difficulty.  I ordered the sits bath online through Amazon, and  I don't use the bag or tubes.  Just fill the bowl with very warm water, place it on the toilet with the seat up, and sit.

Hope this helps.   

thanks Winterberry and CLWakley for your kind replies. So good to know people are out there trying to help. Since my post we've spoken to specialist pouch nurse (not Matts stoma nurse who didn't have a clue) and she said it sounds like a pelvic floor problem, over developed muscles perhaps caused by decades of holding in loose BMs. There is a 'paste test' called a defacating pouchagram to confirm the pelvic floor diagnosis. Then Matt can be referred to a clinic for Biofeedback therapy or to a pelvic floor clinic for, I assume, some exercises or physiotherapy. We are now waiting for the referral. Will update when we find out something more concrete in the hope it helps someone with the same problem. Again thank you for your replies, much appreciated

Kate & Matt

I had the same problem a few years ago back in 2014.I ended up needing to be dilated 3 times before my jpouch would work correctly.It is common to develop a structure in that area.I went to two different surgeons before the issue was fixed. I know what pain your husband is going threw I hope he gets this issue fixed. 

Hi Raymond & Kate & Matt,

Did you manage to get it sorted? My husband has had his jpouch for about 10 years, he has probs going to the toilet. He has to use the jet on a shower to open the muscle so he can go to the loo. Also has a structure. He has dilatations every year-ish to help. Things are up and down for him. The last one didn't really help that much and for the past month he's had more trouble than normal emptying his pouch. He also uses a plastic thing to stretch him out given to him by his surgeon but even that's not been helping much and he's using it everyday ATM. We're looking into catheters to see if they will help but he's beginning to really worry he's running out of options. He really, really doesn't want to go back to having a bag. 

Any thoughts or suggestions? 

Hi Raymond, thanks so much for your reply. Apologies its taken me ages to acknowledge it. We are still waiting/trying to get a clinician interested in Matts problem so I have no news yet, but its helpful  to know that the anus may be dilated and more than once. Will add it to our list of questions once referred.

I hope you're ok now Raymond, and thank you again for your reply

Kate & Matt

Dear lolly & all, thank you for your reply Lolly, we are waiting to be referred still so just trying to do online research to educate ourselves. So sorry your hubby still has problems, it can take over your life when it's going badly can't it. Over the 3 day bank holiday weekend all we've managed is a 3 hour trip out to the cinema, and he did well to do that, then he might feel pretty good tomorrow, can't plan anything. I'm sure not news to you guys or anyone else reading this, I feel for you all, it's a tough gig (massive understatement) and you do brilliantly!

Lolly, I don't know if there's anything you guys don't already know as you're a lot further down the 'life with a pouch' road than us but will keep updating here as we discover stuff. So far we think Matt has an overly tight pelvic floor wrapped around his anus which is preventing him from evacuating any stool or wind. We think that Biofeedback therapy to retrain his brain/ muscle reactions should help as his surgeon has had a good look and is confident there is no physical issue. Or as Raymond & you mentioned perhaps he could be dilated or stretched in some way. Matt was discharged from Addenbrookes without pouch function and before discharge we asked his surgeon if there was a way to stretch his anus area but he just dismissed it, so Matt is still reliant on a tube and KY Jelly to evacuate his stool and wind. The wind ( gas if you guys are stateside!) is very painful for Matt but we keep reminding ourselves that it's very early days and much of his discomfort will probably settle down. He avoids eating fibre or wind making foods obvs.

We are told that stress/tension may be the problem, holding him tight shut so we are trying to chill but, well you know...

Once referred we hope he gets a 'paste test' where they insert an x-rayable paste into him then x-ray him as he tries to push the paste out, from this they can diagnose the problem. YOu guys had this?

I'm really sad that you're still struggling and worrying about a permanent bag. It's like admitting defeat huh? I know we'd be gutted after all the horrors we've been through to get this far. Will keep in touch and hope that we can help in some way.

lots of love

Kate

ps I've never used a forum before so please forgive any mistakes or faux pas

Hello, Kate.

See if leaning back toward the toilet tank will help to straighten out / lengthen the way the j pouch sits in the pelvis. It sits on a bit of curve. Sometimes leaning back, as if reclining gently on a sofa, helps to lengthen that curve and help gravity take over. Sometimes sitting in a very, very warm sitz bath helps relax and open the sphincter muscle too. Don't give up, don't be defeated by a brush-off. If his doctor or surgeon dismisses it, keep asking. Go in with a list of questions. Ask until you understand the answer. It's your time, your health, not the doctor's and he owes you good answers and the best care he is obligated to provide. You're his boss, and he answers to you. Good luck.

Dear Winterberry, thanks for your encouragement, much appreciated! 

He's tried every position & is so fed up now it's not cool for me to suggest any more. We will keep on pressing for some answers, it's an uphill climb though so your support is great. 

Hope you're well & thanks again, will report back soon with news I hope

kate