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Ileostomy, colostomy and stoma support

For people having an ileostomy or colostomy or living with a stoma. Support each other and discuss things like upper and lower bowel contents, bag recommendations, managing a stoma and foods to avoid.

Ileostomy reversal

No. of entries: 36 | Posted on 24 Jan 2012 03:56

Ileostomy reversal

  • Hi Everyone,

    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!

    Thanks

  • Hi Bonnie,

    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

     

  • Hi Bonnie,

    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.

    Tim

  • 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.

    Warm wishes

    Jules

  • Hi All,

     

    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.

     

    Many thanks

    Lou

  • Hi Lou!

    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.

    Tight Lines

    Tim xxx

  • Hi Tim,

     

    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.

    Take care,

     

    Lou

  • Hi Lou,

    I have commented on your other post about the current hell you have, sorry for that again. Anyway, thanks very much for thinking about me whilst you're in a low place, that's very kind of you!

    After much phoning to the hospital I have got a date for the op, March 22nd, though it could still be cancelled they say if someone more urgent comes along.

    Anyway, I appreciate you telling me all of this as I am really in the dark about what goes on. So get it off your chest whenever you like!

    Keep in touch and I'll let you know how things go for me.

    Tight lines

    (p.s. sorry the replies are a bit short I'm about to get picked up to go out to watch football and the computer has also been playing up, grrrrr! Oh and i just remembered I have to get my panic bag ready, ileostomy stuff in case baggy misbehaves at football!)

    Tim xxx

  • Hi All,

    I'm new to this excellent site, and all of the posts make me realise  just how strong people can be in the face of, what can appear to be, adversity.

    I had an emergency Hartmann's procedure for bowel cancer (punctured bowel) in January 2011. I then had six months of chemo which left me with rather bad neuropathy in my hands and feet due to the horrible oxaliplatin that formed part of the treatment.

    A CT scan and various other tests showed that there was no sign of the dreaded 'c' at the end of the treatment, and so I was eager to have my colostomy reversed. During my hospital stay for the Hartmann's I was told that there was no reason why I couldn't have a reversal after, say, twelve months or so, but there would need to be tests to confirm that it could be done.

    At the end of 2011, eleven months after the original operation, I saw my surgeon to discuss the possibility of a reversal.

    He tried to do all he could to deter me from going ahead with it!!  I later thought that this was his way of ensuring that his patients were very fully aware of the many risks associated with such a procedure. Nonetheless, I told him that I would like to have it done.

    Following a colonoscope in late December 2011 a date was set for the reversal - February 27th 2012.

    I couldn't wait to get rid of the bag that I had worn for a year (not the same bag for all that time!!).

    I had the operation but was extremely disappointed when I awoke to find a new bag on my right hand side. They had to give me an ileostomy because they were not 100% confident in the strength of the new joint that had been created in my bowel.

    From that moment I was adamant that I was going to have the ileostomy reversed at the earliest opportunity, but I have subsequently read so many reports of people having the most terrible times with bowel movement that I am beginning to wonder if it might be the wrong decision.

    I had about 10 inches of my bowel removed from the sigmoid colon, which is near the end of the large colon, and I keep trying to tell myself that I won't have the same problems as others because most of the 'work' of the colon will have been done by the time it all reaches there!!?!! Am I in cloud cuckoo land, or is it possible to somehow be lucky and not experience the dreadful things that I read about.

    I feel as though I have been quite 'upbeat' during the last 15 months, but I am frightened of going ahead with something that I might regret.

    Sorry to bash on about me, but I just need to put this on paper to sort of clear my mind!

    Anyone any advice please?

    Many thanks, and good luck to all  you brave people out there.

    RobM

  • Hi rob,

    I was also told I might wake up with an ileostomy at the end of my colostomy reversal. I told him that sounded madness to me and could just go on forever putting in bags to help heal bags being removed! I was lucky and woke up with no bags whatsoever.

    I was very scared before hand. I had been incontinent before due to the site of the tumour and my consultant and his registrar were both telling me that they thought the reversal would probably not work due to the damage from RT. I was concerned that I would still be incontinent, or not be able to pass anything due to the stenosis I have from the scar tissue. Anything thicker than a pencil aint gonna get out!! Plus some of the horror stories you hear really made me wonder if I was doing the right thing and didn't want to go back to spending my days sat on the loo and wearing pads etc.

    Anyway, my surgeon sounds the oppostie to yours and persuaded me it was worth a try and if it didn't work, then I could get another colostomy so it was just a gamble of one op or two. he said he could do something about the stenosis hopefully too. He was pretty worried too afterwards and came up to see me every day in hospital to ask how things were going...

    So, I gambled. I had it reversed 10 days ago and to my amazement so far so good! Of course there is the wound pain and the wind and rumbling guts that you would expect post bowel surgery but no diarrhoea or leakage or blockages etc so far.

     So, I would say Go for it!! What have you got to lose? And yes, you can be lucky cos you are talking to one right now!

    Ilieostomies are much harder work than colostomies, so I would say have it reversed and if there are too many problems, then get a permanent colostomy fitted. You know how to handle them already and at least you tried....

    I would certainly have been sat in the waiting room to get my ileostomy reversed if that is what they had done for me. He told me that if they had to do it though, it would only be for about 6 weeks while the join healed so not a long term measure at all...

    Of course they are saying that there is so much damage down there from the RT that one day I might need another bag in the future 10 years down the line, but if I live for 10 years that's a bonus in itself, so won't mind having a bag then and in the meantime, I shall enjoy being a Dyson (bagless- bad joke frim Tim who is currently in hospital having his ileostomy reversed! Once he is out, I am sure he wil give you lots of advice. I know he didn't think twice about it)

    Good luck!

    Little My

     

  • Thanks Little My.

    You give me hope!

    I think that the whole process of cancer is 'one step forward and two steps back'. When you feel as though you are making progress, something comes along and quickly reminds you that things aren't quite that easy! That is why I am a bit negative about the next step (which should really be the final step for me if all works out ok).

    If I can just have reasonable bowel movement after the reversal I will be a very happy man. I'll even cut down on the red wine!

    Here's hoping.

    Thanks again - I'll post a summary after my meeting with surgeon on April 17th.

  • You are right there! Nothing is ever as easy as you think. I only had the colostomy to get me through my treatment and I had no idea it was going to be this much time and fuss over it, operations and the like, but.. we find ourselves on this path and we just have to keep stepping in the right direction and jump those hurdles when they come to us. If I am lucky, this could be the last proceedure for me too... that is a weird thought but a good one of course. I think I am two steps forward, one back as I am still getting in the right direction!!

    Careful what you promise for!! (Red wine- you might regret that one!) My consultant thought I would manage to get a reasonable bowel movement by taking either laxatives or the other ones until I found a balance, but so far, I am managing without anything at all! Mind you, early days and all that but even so, there is a lot they can do to help before you need to revert back to a bag.

    To be honest, I didn't mind my bag at all and it was such a relief to get it after the symptoms I had had and did wonder a bit why everyone was so keen for me not to have it anymore, but having lost it now, it does feel good- especially in the nice weather and wearing skinny tops etc.(or it will do, when the wound heals!!)  I wouldn't be quite so happy to have an ileostomy I don't think.

    Do let us know how you get on with your meeting and you have done everything else and got through it so far, so why not this one eh?

    Good Luck!

    Little My

  • Thanks Little My.

  • Hi All,

    Thought I would just drop by and give a little update as it is GOOD NEWS!!!!

    The last 2 weeks I have seem to have turned a corner, a very small corner but a corner none the less. My Gynae consultant gave me some really strong antibiotics as he said that the readiotherapy can kill the good bacteria growing in the bowel and make some nasty stuff grow instead. The duration of the course was a nightmare and I thought I had gone back but since stopping them my day time has been better than it has been since the op in Jan :).

    I still cannot go out without eating or drinking for fear of an accident but at least I can get out now and I am growing in confidence even going further afield and not just for hospital appointments!!!

    The evenings are still bad but I can get through them without tears as my lovely husband pointed out the other day. I am not so sore and although I still have no control at times and many accidents they are less and I can see light at the end of the tunnel.

    In my appointment 4 weeks we discussed a colostomy if this did not work after 12 months and I really thought then that it was a possible outcome. It may still be due to the urgency and incontinence issues but I feel more positive now and I can see improvements. I need to give it time and be patient ( not one of my strongest assets!).

    I would hate to think that my story would put anyone off having this operation. I had previous bowel surgery to the radical surgery that I had in January 2011 and also had extensive radiation damage to my bowel so based on that it is no wonder I have had problems. If you are reading this my advice would be try it. I was told that my recovery might be as bad as I have had it and although I didn't anticipate how hard it would be I still decided to give it a go and I am glad that I did. My ileostomy caused lots of dehydration problems for me and although I found it manageable and if I could not have had it reversed I truly would not have minded I think when you have that option you need to give it go.

    Good luck to anyone else, and you never know you might have recovery like Little My!! :) 

    Lou

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