I developed a parastomal hernia fairly early on around my ileostomy. It is quite common and mine didn't hurt and although it got to the size of a half a grapefruit when upright it would subside when I lay down. It didn't hurt either. The stoma nurse signed me up for a support belt from SupportX, you can have a couple a year on prescription I think. The belt gives you confidence but you still want to avoid anything that would strain that area such as heavy lifting. One thing about the belt is that it can restrict output sliding down in to the pouch so you need to keep an eye on that. There are lots of different suppliers and types of belt and you can find them on the web, but the best advice came from the Stoma nurses. I had the hernia repaired when I had a reversal.
1 the annual checkup nurse (met about three weeks ago) said watch and wait, but I see her annually? and was i concerned about the time lapse.
2 The nurse that came last week said and measured me for a support belt did say it was a parastomal hernia but on line see below,
Parastomal hernias happen when part of your intestines stick out through a stoma
This is not the case with me I can not see any intestine stick out through the bag but the stomach area is reasonably extended and no pain when they pressed the area? however, I guess there is a hernia lurking.
Couple of months ago there was a lot of flue like symptoms about lots of coughing nose blowing i think that did not help with a support belt.
I am 80 and the reading about reversal was not positive and I have put that on the back burner for now.
I get on very well with the open ended bag not a problem but restrictive on local/long travel I don't have the confidence yet, fast stomach and stoma high so starts processing whilst still eating nuisance factor, I rinse out regularly during the day.
I would very much like to hear about your experience of the reversal and hernia repair please, if you would share that, I have not dismissed it yet?
I am seeing the professor consultant this week for his opinion so the more information i have helps me make a decision based on his thoughts.
Just read your profile answered my questions wow you went through a lot, i was very lucky 07 04 2023 operation after weeks of blood and soup could not eat or poo solids the tumor removed in full as it was still encapsulated and 30 lymph nodes removed/tested last CT a month ago all clear no radio or drips but difficult op very low down 4.5 hours in surgery and 14 days in hospital, I am just very positive cancer free, also prostate cancer op in 2004 survived that and on meds psa 1.7 a nothing reading had brackertheraphy (cant spell) the radiation treatment in 2004 no all positive feelings.
Tony, as you saw I am only a few years younger than you and had a similar operation low down. My hernia bulge area included the stoma but I never had any indication of seeing intestines. Cutting a hole in the stomach muscle obviously creates a weakness. I had it stitched up when I had the reversal. I asked the surgeon if he was going to use mesh like a previous normal hernia repair I had done and he said it would be stitched in case he had to ever cut me up again. For that reason it took quite a long time to get to the point when I never had twinges as I probably kept on doing too much.
I didn't use the belts every day, just when I knew I was going to do something that might aggravate the hernia.
I read stories about the after effects of the reversal and almost didn't go for it but I am glad I did. You will see lots of conversations here about the pros and cons. Now I have reasonably normal movements and spend less time in the loo that I did with the ileostomy. Ask the consultant for an honest answer as to how a reversal would affect you, we all seem to be different, he should be the best person to know and also, if it came to it and a reversal didn't work, would he be prepared to create a stoma again.
You said that the stoma is very active. I used to control my output by trying not to eat what I knew would create a problem and, when necessary I would take 1 or 2 Loperamide (immodium on prescription) half an hour before each meal. While on chemo with the stoma that used to most meals!
Thank you so much for the advice and history all printed out ready for my meet with the consultant later this week and FAQ' marked.
The first meet after the op I did ask about the reversal and was before I had done any research, and I said when will you do the reversal? I knowing, nothing at that time, he looked at me and said "you will decide" that immediately, was a red flag and I started research, I will ask again and particularly if it will be what I call keyhole as the initial op.
Professor Rockall is the best, i was lucky not to have any chemo etc. Yes I am afraid I also do too much! wont get done otherwise, lucky to still be with BUPA at an incredible high premium due to previous claims, not wealthy just comfortable.
In hospital i was given Imodium to slow down and thicken the output, at present I can manage the bag easily and control it, its the unknown ie the reversal and as we know there are many negatives, and bad stories.
Thank you again I will update you, if I may? after the meeting.
There is an incredible lady on here call name Sarah and has two stomas and travels all other the world with little problems makes me feel silly.
I have seen the consultant re the hernia this week, decision has been made to leave as it is, not causing any pain, and due to radiation years ago (Prostate cancer now clear) caused damage to the water pipe and the suggestion is it also may have affected the lower bowel, so a reversal is not advised at this point. I have no problems managing the stoma
At least you know where you are now for a while. Might they review the reversal in time? The radiotherapy I had was put down as the cause of problems I had with the water pipes, still the benefits have so far out weighed the problems.
