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I have had my date through for my reversal which is at the beginning of Dec but I am petrified.
It took me a couple of months to decide to go ahead with the reversal because of the the possible side effects. I had really bad diarrhoea during and after radiotherapy and although I never wanted the bag it has given me the freedom to go out and about. I lived on loperamide before the ileostomy and I still take 16 a day now but even if I have to go to the toilet to empty every 30 mins to an hour I do have some control.
Has anyone else been through this? I could do with some POSITIVE feedback PLEASE.
My friend who I met in hospital when I had my clearance and she had her ileostomy had her reversal in September and is still reliant on being very close to the toilet.
I am a positive person and decided to have it done because I feel I owe it to myself to try but am now getting cold feet!
I am just starting the discussions of possibly having a colostomy reversal so don't have experience I am afraid, but just wanted to send you some positive vibes! Of course you will be nervous and getting cold feet, who wouldn't? but I would imagine they would not recommend you for it if there wasn't a good chance of it being ok eh?
Hoping someone with experience will get in touch but just try and remember why you said yes in the first place and imagine that it might work really well and the diarrhoea might stop cos you will be using your large bowel again... and that would be cool!!
It will take a while for things to settle down of course and September is only recently.
Give it a try... I would!
Little My xxx
Sorry but I am also not experienced but in the same boat! I am expecting a reversal op in the New Year and have been told they don't know how I will get on, so I have to try otherwise I'd be left wondering for ever more.
Wishing you good luck.
Thank you both for replying.
Tim - Good luck with your reversal, let me know how you get on.
Like you I feel like I owe it to myself to at least try and I have been told that worst case scenario is having the ileostomy bag, to be honest in my experience if that is the worst then that is ok, been there and done that so to speak so fingers crossed!!!
Thanks again - will keep you posted!
Hi Bonnie- do you have a stoma nurse that you can discuss your concerns with? There are a team of 4 colorectal nurses at my local hospital and they are excellent to talk to. Very friendly and kind.
I may be having an ileostomy reversal before Christmas, but my situation is different as I have got a colostomy ready to go, as a permanent 'fixture' once the ileostomy is plumbed back in.
Just thought I drop a line to say that I had my reversal on 5th Jan.
Have suffered with the known side effects and some days felt really low but so far so good.
The bowel does it's own thing regardless of what I eat, when I eat and if I take immodium or not!
My colorectal nurse has been fantastic as always and has kept in touch offering suggestions and advice but it really is pretty much a waiting game. Some people recover quite quicky in terms of the bowel remebering what it needs to do and for some people it can take up to 12 months.
The stoma nurse described it as not walking for 12 months and then trying to walk again. The bowel is a muscle and needs to build up strength. The frequency varies but the urgency has not got much better and I am a bit concerned with that, however early days I know!
It would be great to hear back from Tim or anyone else who is going through this or has been through it. It would be great to put some perspective on the information given.
Great to hear that you went through with the reversal and that you seem to be really taking it in your stride and dealing with it, well done you!
I am still (bloody) waiting for my reversal! Next week will be 5 months since I was told I was on the waiting list, and I have rung up the hospital today and a left a polite but strong message with the department. I am in limbo, it's over a year since my op now and I wonder how long it will take for things to work right. I do not know how things will be and so I cannot book hols, and am always saying to people things like "Yes I'd love to go as long as I can."
Anyway, enough moaning from me, I am hoping Lou you will keep popping on here and updating your status as you are now my wing (wo)man!
I also hope Jules is doing well.
Any news on your reversal yet?
It was 6 weeks since my op yesterday and I have had some quite dark hours I'm sad to say. That said the important thing is that these hours don't last long and then I am back to normal.
Not much of an improvement seen since the op and I am feeling quite frustrated at the moment. Every day is different but one constant is the sudden urgency that I feel and that is what is worrying me at the moment, I have been told to do pelvic floor exercises which I do often but at the moment no change.
If I have a good day in terms of frequency and I tell someone I seem to be hit by a really bad day, the God of ileostomy reversals does not like boasting!!
I have been told again by my consultant that it can take 12 months for bowel to return to anything like normal but that most people see an improvement after 6 weeks. They are keeping a close eye on me and reviewing me every 2 weeks and we keep trying different things and I am sure that something will work soon although consultant has said based on the radiotherapy damage and previous history it may never get there but need to give it time.
Have decided that will give it 6 months and if the urgency is no better then will consider going back to the ileostomy. It probably wont come to that but I need to have light at the end of the tunnel. After 6 6 weeks of not going out I think I have cabin fever!!!
To get to the hospital I have to not eat the day before and take about 12 immodium and then not eat or drink on the day until I get home. That was successful last time so will continue to do that,
The continence nurse came to see me with some lovely nappy pads, apparently they are all the rage for all 38 year old ileostomy reversal patients!
It is not easy but t be fair they do tell you to expect this and everyone is different. I have read that some people are out and eating normally after a week or so, my experience so far is by no means the norm but I selfishly needed to get this off my chest and also wanted to let you know Tim.
I will pop back and update again in a few more weeks with hopefully better news.
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