Hi I had surgery in February last year to year as I have FAP ( a hereditary illness which means I stand a high chance of developing bowel cancer due to polyps) the surgery was preventative to remove my colon & rectum. I had a illeostomy/stoma for 3 months to give new pouch time to heal. I had the reversal in May2016 & was also told I had a hernia which was repaired. I was unwell in October & November & ended up in A&E & having an emergency operation in December 2016 because it was suspected I had a hernia. I also had an abscess & have a stoma again. I hope it will be temporary but am waiting for a follow up appointment to see find out more. I am worried about having the reversal because I don't want the same problems again but I know that no one can reassure me it won't happen again. I feel so much better since operation in December & have days when I think I would rather live with the stoma & other days when I can't face it. Because I have had 2 hernias I was referred to see someone about an hernia support belt which has arrived today. Investors put it on & whilst I kjnow it has to be tight to do it's job, I am worried because it seems to restrict the "flow" in my stoma pouch. If anyone else is in the same situation can you tell me if this is correct & am I just worrying too much-that it will be ok. Thanks
Hernia support belt with stoma - Living with a Stoma
Hernia support belt with stoma
Hi, unfortunately, my understanding is that it is quite common to have a parastomal hernia if you you have had an end illeostomy/stoma. I have been using a support belt for around 6 months now and normally there is no problem BUT it does depend on the thickness of your output. Depending on what I eat I occasionally get a little 'pancaking' which can lead to leaks as the product has do go somewhere and if it can't drop down the bag it can try to force itself behind the bit stuck to your skin and out through the edge of the seal. In about 8 months I have only had 4 leaks and I am now getting to recognise when there is a problem as you can feel the output feeling 'different'. It is just a case of releasing the support belt for a minute or two and 'working' the pancaking down the bag, and then putting the belt back. Personally I have the clear bags so I can actually monitor the output although I think many people have the covered front. I have not tried it yet but I understand that you can get a lubricating product which you put into the bag. See the video at veganostomy.ca/coloplast-br... which is supposed to help with pancaking. I hope this helps
Thanks for your reply. I'm the end I have hone back to suportx & told them the problem do they have cut a hole in the belt do my pouch sits outside the belt. I've only worn it for a couple if says but it seems to working ok. Thx again
Hello, my name is Samantha and I too have FAP. 20 years old had my large bowel removed and have temporary Stoma whilst my j pouch was healing. Over the last 10 years I have had 2 blockages and in December 2016, I was admitted with my last block. My consultant decided to operate and clear a lot of scar tissue. I'm in the same situation and I'm unsure whether my stoma this time round will be temporary or permanent. I have my up days and currently going through a lot of down days. Constant leaking and changing my bag every day and over the last few days twice a day. According to the products I have received like a support belt , it does say it doesn't restrict flow. Currently I'm sleeping with a flannel down my pyjamas to stop a major leak. I'm sorry for such a long reply but it's not often you hear someone has FAP and not related.
Hi Sammylou can I ask a question about your FAP future care? Up until December last year I was looked after by St Marks hospital in London as when my Dad was diagnosed he was living in London so I've continued to be reviewed by them & had my J pouch surgery there in 2/16 despite living in Hampshire.But following my emergency surgery in my local hospital in Portsmouth I am now considering transferring my future care to my local hospital hospital as I cannot fault their treatment of me & it is more convenient being local. My dilemma is that St Marks will see me annually for a flex sigmoidoscopy & every 3 years they do an endoscopy to check my upper gi. But my local hospital say it is sufficient to do the flexi every 2 years-please can I ask you how often you have a flexi so I can try to make a decision but have nothing to compare it to. My husband thinks St Marks may do it more often for their own research. I hope you are ok. I've gone through a spell of leaks everyday for a week for some unknown reason & it does get you down so I hope things are better for you now.
Hello Suep, I have the camera at the bottom end every year and top end every two years. In fact I'm booked in for a top end camera next week. According to my records at St. George's it looks like I haven't had one for while now but I had one last August at Epsom general. I have heard that St Marks is a very good hospital. My consultant three weeks ago wasn't happy to reverse me just yet. Maybe in a years' time. Then more tests to see how my j-pouch is holding up. Only this week managed to enjoy water aerobics again, half hour at time though.
I hope this helps.
That's useful to know-thanks. I'm glad you're slowly beginning to enjoy some activities. I found out last month my stoma is permanent due to all of the scar tissue, apparently my insides are a mess. Slowly trying to come to terms with it-good & bad days. Take care
Hi Sammy sorry for not replying sooner. I have recently tried to have my follow up appt with thehospital but was told I was in the wrong clinic-should be lower GI but he was upper GI! But he was quite gelpfil to talk to in intetim. I just want ficyors to be honest with me about the risks of having stoma reversed. He said reading the detailed surgery notes because I too have extensive adhesions/scarring he would stick with the stoma because I'm highly likely to have more problems. Like you I have good days & bad days for me it is mainly psychological as I'm fortunate not to have too many leaks but do get fed up with having to empty my pouch quite frequently afternoon & evening & worry about people seeing my "bulging"pouch & what clothes to wear to feel comfortable. I'm waiting for the correct appt to ask more questions. It is hard & I wish I hadn't had the original I pouch surgery but know I had no choice because of the number of polyps. Good luck.
I too have a belt to support my stoma etc and I have an open wound I worried it might stop the stoma functioning and hurt the wound but it doesn't, I only wear mine when I go out.
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