I'd love some advice from those who have had (or considered) reveral surgery. I was given an unexpected gift of a stoma last November, following bowel surgery. I am mercifully cancer free as a result and am grateful. I have developed a parastomal hernia that is uncomfortable/sometimes painful.
I have been advised that a reversal opereration is feasible, that my muscle/ pelvic floor control appears good and that, as relatively young (early 60s), my surgeon recommends I should go for it. However, I only have some 25% of rectum remaining.
So, what do I do? Its not clear cut and am afraid of becoming faecal incontinent with such a reduced rectum. Am told that body adjusts and the end of the colon would learn to develop as a 'holding area'. But this feels a risk and I like to be active and away from the house/ town as much as possible. It would be hell to be tied to be near a loo all the time. On the other hand, to face having stoma and hernia for rest of my life is also not a great alternative. Has anyone else had such a dilemma. What did you do/ think? I would really appreciate as many responses as possible. Thank you very much in advance.
I had an ileostomy fitted in February 2023 and the plan had always been to reverse. However like others on this thread I have probably 50% of my bowel remaining so not clear on what the reversal will look like.
In the meantime however I've had two complications identified and would be interested to hear if others have too?
The first is Chronic Radiation Proctitis - caused by high level radiotherapy which helped clear my first tumour (it came back sadly hence surgery/stoma) but has continued to cause localised damage. What's happened now is fragility of the tissue and blood supply at the lower end of the bowel.
Second is Diversion Colitis - as I understand it this is due to the flow of nutrition/hydration down through the gut/bowel being stopped at the stoma. Seems to take about 2-3 year before the cells start to suffer/die off. My "exit-pipe" output had been minimal over the first two years post stoma-fitting but now is much heavier and often very bloody. I'm told the combination of these conditions means a reversal wouldn't work as the bowel has deteriorated too far.
There look to be limited options - one is "Short Chain Fatty Acid Enemas" which I was prescribed after a recent endoscopy session - seems a bit wacky however on investigation turns out not to be licenced or even available in UK.
An extreme route is removal of the remaining colon/bowel/rectum - a major operation - however that might be the least worst option as I've been having increasingly frequent infection/inflammation problems - A&E needed to get antibiotics and painkillers to resolve - when at it's worse, life is essentially on hold as I'm unable to sit/stand/sleep due to the bowel infections .. sorry perhaps too much detail.
Would be great to hear if anyone else has come across these conditions and how it was approached?
