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I have had an ileostomy for over 15 months now and after 19 months of treatment for bowel cancer with secondaries, I am in a position to consider reversal,subject to tests showing that it will be possible. What I am asking you all is have you experienced reversal and are you glad that you went ahead with it. I realise that it can take some time for your bowels to function but understand that things will never be the same as before - so my feelings are mixed.I would be grateful to hear of your experiences good or bad.
Hi Cathie - welcome to the group
I think I am in the position you would have been in last year. I am due to have my big 'bowel op' in 3-4 weeks (down in Basingstoke probably). On Tuesday my local surgeon (Lincolnshire) advised me that reversal can have its consequences. I think they always feel they need to warn you of any negatives, just in case it happens.
He talked about some patients who have had problems with frequency and having to run to the toilet, but I forgot to ask him how old these people were. He said that part of the problem is radiotherapy leaving damaged tissue that heals poorly. Obviously I don't know how old you are, but I am 42 so would hope to have a better chance of decent healing than someone in their 60s or 70s.
My view is that I want the best chance I can have of not ending up with a permanent colostomy. I don't like having a bag and have firmly stated that I want them to try and put my rectum back together and will opt for reversal if/when I get to that point.
I hope someone will comment who has experienced reversal surgery.
Best wishes - Jules
Hi CathieW, I had a reversal after 4 months (had it sooner because of problems with the stoma). I am 67yrs. and had radio therapy before my ileostomy operation. When I first had the reversal I felt vulnerable because it was strange being in charge of my own bowel movements. (not just let it happen into the bag) I fleetingly thought "better with the bag" but two months on am so pleased to feel "normal" again. My B/M's are not as they were before the op - not as regular etc. but I do not have any problems thank goodness. I never have to rush dramatically to the toilet and have full control. A little dodgy sometimes "is it wind or the other"!!! I am still on chemo so that effects my B/M's but I am sure once that is finished my life will be nearly back to normal. Everyone is different depending on so many things. Hope this helps. regards MEJ
Thanks for taking the time to reply and for the encouraging details about your reversal. I am so pleased that you are coping well and wish you all the best as you continue with your chemo.
I go for the dye/x-ray on Monday next to see if all is well and if it will be possible to do the reversal. I guess it will be a case of one step at a time as decisions will not have to be made until I am in full possession of the facts.
For me the decision will not just be about preference as, being the principal bread winner in the family, I have to consider the consequences if/when I eventually return to work.
Firstly may I say good luck with your op - once you are through that I am sure you will feel like you are getting there.
I am 53 and reasonably healthy so I hope that I would recover as well as I did from the last two surgeries. I hear what you are saying about not liking having a bag but on balance I would prefer that to faecal incontinence. Without a chrystal ball it is hard to weigh up the pros & cons - especially as I have enjoyed freedom from the loo in the last year and even managed to swim whilst on holiday last week.
Oh well I will ask lots of questions and leave my decision until I have to make it.
Congratulations on this group - wonderful idea.
I talked about reversal (with my surgeon) a lot before the op to remove the tumour, as it was touch and go if I would have to have a permanent bag, only when I woke up from the op did I know I had been "joined up" again! Since then he's not asked me again if I want it, it's happening and things have healed well and the NHS cogs are now turning. Yes I could have said "hang on, I don't want it" but I'm going for it! I have read about a lot of peoples toilet troubles after reversal, but also many who were fine. So the way I look at it, the ileostomy gets in the way of some things I do in life, and I am happy to take the gamble. Expect the worse and hope for the best, don't they say?
Enough of my rambling, what ever you decide it will be right for you Cathie.
I seem to be thinking the same way as you as I too would prefer to be without my bag and I think the gamble is worth it,
Thanks for your comments.
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