Recurring Hernias with a Stoma: Seeking Advice and Support

I've had my stoma for about ten years. It was done for Crohn's, which was worse than not being able to make it to the toilet, which was extremely embarrassing, and periods of pain. In the last 7 years, I've had three hernia operations, which were unsuccessful. Now my surgeon wants to move the stoma site to the other side of my tummy and try to repair the hernia once again. The hernia is very big and is noticeable under clothing; I just make a joke of it. Six months now, I just knew who the father was! Anyway, I was hoping someone is going through this or knows someone who is. I'm quite anxious and only have a month until surgery in June.

Any advice would be great. You support each other, which is great, and I'm always learning more about being an ostomate. rythamolove (Jeff) Many Thanks

Hi Jeff, I had a hernia for ten years before they would operate because I was overweight. It was huge; my whole stomach and intestines were pushed through the right of my stomach. It made me very miserable. Anyway, I had it repaired in April 2011 with keyhole surgery and an epidural. The operation should have been done in 4 hours but took 9 hours because of the size. I had my stomach moved to the left side and had the hernia repaired with mesh and staples, and had my colon removed. I was supposed to have a hernia belt after the operation but didn't get it for 4 days after, and it wasn't very good. Two days after the operation, where the hernia was, it started to fill with fluid, which is quite common. It swelled to the same size as my hernia and took three months before they drained it, nearly 2 liters. But about two months ago, I got another hernia above my new stomach. I've just got myself two Comfizz hernia belts on prescription to help the matter. I would recommend keeping your weight down and getting a decent hernia belt. If you have a certain question, please ask KEV.

Just had 2 hernias fixed in February 2012. And I'm still not sure if they are fixed, thinking I had the operation on February 27th until only last week. I need to seek some advice to know if I should still have burning. I did hurt my abdomen last weekend, and it's been tender, or it's still healing. I can't seem to be really 100% sure if the hernia mesh has helped, so I should try and find out, I guess. :D ...........Yes, I would get it fixed again, but too many operations aren't always the best answer. I'm actually not a bigger person but did put on weight very rapidly with some nerve damage meds....Side effect I didn't want to read as it worked for 6 months but then stopped. Good luck, matey. MOOZA :D

Thanks, b4 life, for your message. It really sounds like you've had a tough time. I was never told to wear a hernia belt or given much information on the three times I've had the repair operation. It sounds like I need to really consider if I should go through with it. You said you've noticed another hernia by your stoma site. Have you been told if it's likely where your old stoma was, there's a chance it could come back? If you need any advice or have any questions, just ask. Again, many thanks, Jeff.

Thanks MOOZA:D, it sounds like you've had a tough time too, as b4life. Like you said, having more ops isn't always the best option, but I will have to have a good think as to whether to go ahead with the op. Make sure you take it easy as it's still early days since you've had your op. If you're worried, make sure you see the doctor. Hope you have a speedy recovery. Many thanks, Jeff

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Hi Jeff, for the ten years I had my first hernia, I wasn't told or even heard of a hernia belt. But four days after the operation, I was told to wear the belt 24/7 for three months. I think if I had it straight after the operation, it might have stopped the area from filling with fluid. Where my old stoma and hernia were, I have a four-inch scar, and I can feel the tissue where it has been stapled, but the surgeon said there was no chance I would get a hernia back in that area. I haven't had my new hernia looked at yet. But I think if I had the belt I have now, I might not have gotten the hernia, and the type of work I'm in, and being large hasn't helped the matter. I haven't been given much info about my stoma or hernia from the doctors; I've learned more from ostomates and searching the net. My hernia was so big I'm glad I went through with the operation. I wish you all the best. Kev

I'm still not wearing a hernia belt. I can't stand them, especially for having an ileostomy. I think I need to lose a bit more weight though and definitely should be examined again. Oops, sorry about the capital letters, I'm not angry, lol. Good luck everyone! :D My hernia was extra large and on my stoma side. The other side was on the old stoma site. I don't see a flat belly, that's for sure. xxxx

Hi Jeff, just to let you know I'm on my 31st hernia operation, which I will be having on June 20 at Cleveland Clinic. I have had 36 operations. My hernias come back because I had cancer in 1980 and underwent radiation treatments, which ruined me. It destroyed my tissues and other things. I know exactly what you are going through. I wish you all the luck in the world. I will have 3 doctors in the OR with me; one is a plastic surgeon who is going to give me something like a tummy tuck, so they can have tissues and skin to work with. I have had 7 meshes in at once, and also they all diseased and all had to be removed and replaced, but the doctor put in pig skin, and found out that it thins out too fast, and that is what it did, so now back to the OR for me. Please pray this one, after 37, will work and I will have no more trouble. I also have a huge one under my stoma and one in the middle of my stomach and one on my right side. I can't wait to see how things will turn out this time. And you don't have to be overweight to get hernias. Anyone can get them; I have coughed, bent over wrong, lifted, and sneezed, so I have had it all. So good luck to everyone, and I hope I get my flat belly, lol..... xxxxxx

I also had a hernia for 4 years around my ileos on my left side, fairly large. I was still working and playing hockey when one morning I woke up with severe pain, which was my hernia strangling my bowel and caused 2 holes in my bowel, which poisoned my whole body. I was in a coma for 21 days, nearly died 3 times, and was in the hospital for 4 months. I had to wait 18 months for everything to settle down. I went back 10 weeks ago and had stomach reconstruction and bowel resection. At the moment, things are going alright. What I am trying to say is, get your hernia checked because they can be life-threatening. Thanks, Poppy from Australia.

Hi everyone, thanks for all your messages; they have been so helpful. I've decided to have the operation as the hernia seems to be getting bigger and I've been in a lot of pain. It does seem once you have a weakness, for example around a stoma, you are going to be prone to recurring hernias. Just have to make sure I wear a hernia belt after the operation and make sure I take it easy. Well, think of me pre-op next week, then the operation on June 19. Thanks, everyone. It really helps to know there are others who understand. Take care, Jeffx(rythamoflove)

Jeff, I say go for it. My extra-large hernia was on my left as well, on my stoma. My old stoma site had a smaller hernia as well. I knew I had them 2 years back but was told that they hadn't popped. Boy, when they did, I was in so much pain and my abdomen looked pretty weird, well, pretty horrible, and the pain would give me fevers and make me feel quite sick. That's when I thought something is very wrong here, and soon found out I had a huge stoma hernia. I'm thinking I really need some kind of scan to see that everything is still in place. Go get 'em, Jeff! Cheers, Mooza x x

You feel so much happier when it's fixed. Please take extra care, Jeff. Good luck.

Thanks, everyone! I'll keep you informed!
Jeffx

Also, Jeff, don't go falling over dogs in the dark. I had a bad fall and both hernias are in a lot of pain, almost cramping, and finding it hard to put one leg in jeans. I don't think my hernia operation worked, Mooza xx. :( Good luck to all. xxxxxxxxxxxxx Yep, burning too and looks very strange in shape. I want it fixed but won't know until June 7th if I'm lucky. :D Mooxa

Hi everyone, I had my pre-op last week; all went well. I had lots of tests and saw the doctor who will be at the surgery. One of the nurses I saw couldn't believe how large the hernia was. So, all set for the 19th. I've been having a lot of pain since the pre-op, especially if I cough and have lower back pain. I don't know if I should go to A&E. I don't want to waste their time as it might be that I've strained the hernia, and there is not much they can do. I was told I shouldn't take pain control as it can make you constipated and could cause an obstruction of the bowel, which I've had twice before and was extremely painful and needed surgery. Has this happened to anyone else? Anyway, have a great weekend and thanks for your support.
Jeffx

Hi everyone, hope you're well. I'm afraid the surgery didn't work out. They did the surgery, but I got a bad infection and ended up in intensive care, and was on life support, very upsetting for my family and friends. I was well looked after in intensive care and HDU. And as you can see, I made it. I've had six operations in the last six weeks. Had part of my bowel removed and a new stoma, but I will never pass firm movements, only loose, so drainable bags. I'm at home now but have an open wound on my tummy which has to be dressed every day by the district nurse and will need more surgery to close the wound and probably remove all the meshes from previous hernia repairs. But I am positive and so grateful to be alive and realize how precious life is. Take care everyone, JEFF