hi, I've had a bit of a nightmare with my surgery and won't bore you with it other than to see if anyone has some advise. My latest issue is that my unconnected j pouch is leaking and formed a abscess which after 2 failed surgeries to drain it it's now draining via the incision. My surgeon is saying you either put in a tube to formalise as a drain or remove the j pouch completely. Has anyone come across this before? Advice welcome..
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It may be useful to seek the help of an expert who knows how to fix problems pouches. Where do you live?
I live in Tunbridge wells south east England. I’m seeing my surgeon this week and expect to be referred to a specialist so any guidance would be really helpful. Many thanks.
Hi Colin, I’m sorry things are so rough for you right now. Sending you healing vibes and peace. You will get through this.
Hello, Colin. Write a list of questions, concerns, fears and take it to your appointment with the specialist. If you decide on the specialist to fix your pouch, ask if you can speak with 2 of his/her former patients with a new set of questions to learn how their recovery was, what they experienced, and what the specialist's team was like during recovery. I hope the specialist can help you and you have a full recovery. Do whatever you can to save your pouch, until you can't do it anymore. Try not to worry. If one surgeon can't help you, there is someone out there who can.
Many thanks for the advice and I will do that I'm seeing him tomorrow. For info The pouch isn't actually in use. When I went for the connection the intestine subsequently dropped into my pelvis. One emergency surgery later the pouch is there and I'm back to life with a bag... Many thanks again you've all been a great support.
Hi Colin, I am so sorry to hear that you are having such an awful time. If you are not already being seen at St Marks, Barrow, NW London my best advice would be to ask for am immediate referral for their advice. They are the UK centre of excellence for bowel surgery and have surgeons who specialise in problem pouches. Good Luck x
That's great timing and excellent advice. Thank you so much.
Oops !! Sorry I have no idea how I managed to post that twice😕
Hi Colin,
I had 4 abscesses-yes 4!- with the colectomy part of the surgery. After being on immune suppressive drugs, it isn't surprising. Each one had a drain that went from inside through a tube to an outside reservoir i "wore" that captured all the gross stuff. Between that and antibiotics they finally cleared up, and then they could focus on getting the unconnected j pouch in order. Infections are deadly and really need to be taken care of before the other healing can start. Maybe if they can get the infections under control it will be better/healthier to fix your leaking pouch? Good luck, it's such a rough ride but so worth it in the end to not wear the bag forever.
Thanks very much. I've had the drain fitted now so hopefully it will clear up. I think I am about to be referred to a specialist in london to hopefully fix the pouch. I agree I would really like to remove the bag but too be honest I just want to feel a little more healthy and have some quality time with my young kids. If that's with a bag then so be it. Thanks again.