J-pouch diverted to heal abscess, options?

LaurenT84Member

Hi all, I’m in the UK (West Midlands) and have had a j-pouch since 2012. When my j-pouch was made there was a small gap at the join where it was sewn up to the anal canal, initially this showed up as a leak following the dye test in early 2012, but I had further dye test a couple of months later and no leak, and so my takedown went ahead July 2012. It seems where the gap was an abscess (no fistula) developed in the cavity left behind and caused a lot of pain and swelling down the base of my pouch, I also had a lot of difficulty going to the toilet mainly due to the pain and swelling. My surgeon has done a number of EUAs in theatre to look at it, but couldn’t drain it until recently and he seemed sure it would heal itself and through use of antibiotics.

So over the years it’s been managed with antibiotics on and off, but because it hasn’t gone and also the increasing pain I’ve had from it, I had it drained and my j-pouch defunctioned in early December, I’ve now got a temp loop ileostomy whilst the abscess area heals. The surgeons are going to look at if it requires a fix or not in due course, as it might require a flap or advancement surgery, but at the moment I don’t know enough about these procedures to comment or consider whether these are viable options for me. My usual surgeon has said the rest of my pouch is healthy and looks good, so I’m hoping it can be sorted out. When the abscess wasn’t playing up, my pouch function was great; 4-6 toilet visits in the day and I’d sleep through the night. I am meeting another surgeon from my local hospital trust next week to discuss possible options now I’m diverted, so I’m keeping hopeful for that. I would like to keep my j-pouch if possible as I was generally very happy with it when the abscess wasn’t active. Could the cavity/abscess area heal on it’s own now I’m diverted or would it likely require further surgery? Has anyone experience of this? I’m willing to go to another hospital, like St Marks if it requires more expertise or experience to resolve it.

Thanks in advance,

Lauren

12/30/1710:48 AM

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jeaneMember

Hi Lauren ,

i have similar issues from a stricture. I had one surgeon whose willing to do the pouch advancement through the anus after a three month ostomy diversion as I have fissures and ulceration at connection and ulcers in anal canal. He would also be doing an analplasty which sounds similar to what you have described with the anal flap advancement. The other surgeon, who has vast jpouch experience, wants to go directly in via open surgery to clean up the anastomoses connection and try and salvage my pouch which is also in pretty good shape or create a new one if needed

My suggestion would be to interview the surgeons thoroughly about their method of repair. We only really have one shot at getting this right to keep the pouch. The surgeon with the vast experience ( Dr Remzi) told me it’s likely I will end up in his hands even if I chose the advancement through the anus from all his experience with jpouches where surgical issues occurred at original time of creation.

Not sure this helps but it is best to lay out all the options they are offering before making a choice.

12/30/1712:13 PM

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LaurenT84Member

Hi Jeane, thank you for your reply and your advice, it’s really helpful.

I was only out of hospital on December 15th and the diversion was done at short notice due to my pain and infection, the surgeons weren’t keen on holding on and neither was I. I guess I’ve not had chance to really think through what will happen next and I do need to time to consider the options and repairs they suggest.

You’re right, it’s one pouch and I don’t want it to fail by being hasty. My husband is keen we get a few opinions and go beyond our local hospital to make sure we have the best options available to me.

I’ve heard of Dr Remzi through the j-pouch group and on twitter, he is very patient focused and very experienced. I understand St Marks Hospital has some of the best surgeons in the UK and is in the back of mind to follow up for a referral if needed. The surgeon I’m seeing next week is the clinical lead in colorectal surgery for the 3 local hospitals in my area and is experienced in advancement surgery, so I’ll see what he suggests and take it from there. I’m only a few weeks out from surgery and will have plenty of time to consider things.

Thanks again for getting in touch.

Lauren

12/30/1712:35 PM

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jeaneMember

Good luck Lauren. Please post as to what you decide. I hope you are feeling better. Teaching hospitals are a great way to go if your surgeon operates out of one. I’m dreadung the temporary ostomy but I’ve also had a lot of pain for a long time. No abscesses, but the stricture narrows and the fissures get infected, both which are very debilitating.

12/30/173:22 PM

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LaurenT84Member

Hi Jean,

Ive met the lead surgeon and he was really nice. He didn’t want to do anything immediately given I’m only 4 weeks post op. He wants to see me in 3 months for an MRI and 4 months for an EUA to see if the area has healed. This will then indicate if I should have more surgery (flap or advancement) or not as it could heal on it’s own. Quite relieved that he wants to wait, as it’s still early days in healing post drain and clean out. If more surgery is needed post MRI and EUA, I’ll be referred to a specialist centre out of the area. I’m happy with the outcome of the meeting and I’m going to keep hopeful for April/May time.

Lauren