Ileostomy reversal - Has anyone regretted it?

Hi Folks

I had my ileostomy in June and, at that time, the surgeon reckoned that there was only a 50/50 chance of reversal (I'm not sure why other than my tumour was very low down in the rectum).

Anyhow, I've carried on with the stoma with the view that it might not be reversed so I really needed to get to terms with it and learn to live with it.  It definitely hasn't been easy but I think I turned a corner about 6-8 weeks ago when I finally got a stoma bag which didn't leak so felt a lot more confident about things.  Anxiety levels really improved too which was a real bonus as I've had days where it was crippling.  So, things have been jogging along nicely until I had my follow up appointment with the surgeon recently.  I went in somehow expecting him to say that the reversal wouldn't happen (subconsciously, that would have saved me making a major decision, phew!) but, no, apparently a reversal is possible.  Before I knew where I was, and feeling that I'd hardly had time to think about it, I'd signed the consent form.  I did ask how successful he thought it would be, what would be the likely outcome etc but the answers were very short and fast.  Basically he said that initially I'd likely be running to the loo around 20 times a day and, if I was lucky, it would reduce to around 5 times a day.  In his words it was "time to get my life back".

Pre-op assessment is next week and I've still to get the x-ray to check the join in my bowel but it all seems to be moving very fast.  I know from this forum, and others, that most folk do have problems after the operation but that things settle down.  What happens if it doesn't and has anyone regretted having the op?  My real concern is that, having come to terms and feeling settled with the stoma, I might be left in a worse situation.  I know that I'm very lucky to be offered the chance of a reversal but worry that I'll make the wrong decision (and the anxiety levels are rising again).

Any words of wisdom would be hugely appreciated.

  • hi BlueBlue, I had a partial reversal from an illiostomy to a colonostomy in 2016. A full reversal not possible as like you cancer was too far down in my rectum. For me it was the right decision as I'd been in and out of hospital with complications for Five years. My general health wasn't good, I also have kidney disease so really important  to stay hydrated. 

    1. It's a really big decision for you to make and  you need all the information available to make an informed decision. I wish you all the best.

    Kath
    "don't think about tomorrow"

  • Your situation sounds exactly like mine. I was so nervous.... I had got along well with my bag once I got the right one.... I had read stories of people going to the loo 30 times a day! I probably got along so well due to covid and working from home so maybe the full impact of the bad hadn't hit me. I was under 40! So should say that. I was told there was an option to reverse the reversal if it didn't go well.... So that's an option. What I can tell you is I am so glad I did. I may be some sort of miracle..... But my habbits were back to before within a few weeks. I go once every few days sometimes.... But did before. The two things I would say is occationally I will eat something and it will go streight through me, but i had ibs before and it is less than it was and secondly, i need to allow more time on the loo, sometimes I think im done and I'm not, so i have to just be patient, i used to be a quick poo and go person. Now I need to five myself 10 mins! I can't say you will be the same as me.... What I can say is I went from thinking I was better with a bag to having my life back as it was..... Im so glad I did it. And if you really don't get along well, check before to see if their is a chance you can reverse the reversal. I also started drinking peppermint tea and taking peppermint capsules..... Not sure if that made a difference. I really hope you have the success I did. 

    All the best x

  • I had a reversal 7weeks ago. Not the same situation as you as my cancer was on the right side, so not near the rectum.Ileostomy because I sprung a leak after the first op.

    I have to say initially I did wonder if I should have not had it because of the way I felt after the op, and the feeling that I wouldn’t be in control. This didn’t last more than a week and habits more or less returned to normal very quickly. I am still quite careful what I eat. If I try something that was on the forbidden list with the ileostomy I make sure I chew well and drink lots. So far so good, but I’m only 7 weeks post op. I am so glad I had the reversal, the wound has healed now and I am free!!

    The advice from Tumbum is good re checking if you can have the reversal reversed. I wish you well. 

  • Hi BlueBlue, I had an ileostomy for a year, I should have had  reversal sooner but Covid got in the way. Before I had it reversed I read all the horror stories and nearly didn't but, I wondered if I swapping something I could manage for something worse.15 months on I am glad I did. I had a lower anterior resection so not much rectum left but it has worked out ok.

    To begin with I was passing bits and often but it gradually improved and I could go out with confidence after a couple of weeks. What I found useful was: Do the pelvic exercises to strengthen your sphincter muscles, starting now; when you feel the urge try, safely, to hold on as long as you can; when you go wait for a while as Tumbum said as otherwise at the beginning you will be sitting down very soon after you stand uo: I took probiotics to replace the gut bacteria that had disappeared during the year, I think it helped; Like Tumbum, I can eat things that get things moving quicker but if needed I take the occasional loperamide.

    The reversal hasn't stopped me doing anything, nor did having the pouch, but I wouldn't want to go back to it unless I had to. I realise it doesn't work for everyone and I hope your reversal is successful.

    All the best John

  • I had my reversal operation 8 months ago before it I didn't want to go through that again .As with the Stoma operation things were taken out of my hands  and only after 4months between A double loop Stoma and reversal That's me done only thing that I have left is 2 scars and as my Surgeon said 2 belly button s 

    yes get the reversal operation done Heavy check mark I'm glad that I got it and after putting on weight Husband said it's the best I've been. After reversal operation you have to get use to your new bowls working    We all have our own story about thKissing heart it's a good job we are not robots  . .Kissing heartAlaine

  • Thanks so much for these great and helpful replies.   I knew that this was the right place to ask the question and your answers have made me feel far more confident that I'll reach a good decision. 

    The pre-op assessment is next week which is a bit like putting the cart before the horse if you ask me as I've not had the x-ray to check the state of the joins yet but I assume that the hospital is filling up slots where they can. I know, too, that the x-ray might show up issues that mean the reversal won't happen but I'm totally prepared for that and not getting too ahead of myself.  I'll also ask about a reversal of the reversal if necessary.

    In the meantime I'll carry on with the pelvic floor exercises (last performed around 35 years ago!) and hope that these muscles haven't passed the point of no return!!

    It's so nice to read all your positive (but realistic) stories and, honestly, you've fair cheered me up.

    THANK YOU.

  • Hello BlueBlue 

    Can I ask how it all went 

  • Hi PaulP

    Things seem to have stalled at the moment.  When I saw the surgeon in December he indicated that it would likely be February for the reversal but the cancer nurse has since said that she thinks it will be around a 2 year wait based on the number of folks who are scheduled for the same procedure before me so I'm not sure what timescale to believe. I suspect that the surgeon has pulled a date out of thin air.  I've since had the pre-op assessment (all OK there) and the gastrografin enema (to check the join in the bowel - haven't heard any results from that).  

    I feel that I need more information relating to my own particular circumstances (Low Anterior Resection) as I'm still very undecided about whether or not to have this reversal so not in any rush whatsoever for this op to be scheduled, especially as it's not an emergency.

    Do you have the same decision to make yourself?

  • I had my reversal in 2020.

    Mine was not cancer but blood clots in my aorta, while in hospital being treated for that a clot broke of and worked its way into my intestines, cut off blood supply. A month in hospital before they figured it out. A month with stomach pain, pipes down my nose and throat plugged into machines, but that was only the start of it.

    I went down to surgery to have the dead bit of intestine cut out and they were going to join up the two ends and it will be sorted.

    Woke up with a stoma. 

    Anyway 8 months later I was discharged. Numerous complications and going through a pretty bad time.

    But I did have it reversed and although it was not in the same circumstances as you I am glad to be rid of the bag and other stuff I had to have too. But I still suffer with a bit of pain and general intestinal issues, but that is me. Every one has their own story, good and sometimes bad. 

    One thing you might come across is the bad stories more then good ones but that tends to be because people only write when things go bad. There are many many more successful stories then bad ones, but no one bothers writing about them 

    Have you posted on any other forums asking about your Low Anterior Resection

  • Hi,

    I'm exactly like you, my cancer was very low down, iv had a stoma last June 21 and now iv has the xray and dye which showed its fully healed and iv also had a ct scan. Just waiting to see the consultant now 

    I'm 49 having a busy social life with my hubby, weekends away  meals out holidays etc ...my daughter is getting married abroad next year so we need to go wedding dress shopping starting soon.  I'm really worried my life is never going to be the same again and I am constantly going to be needing the loo.

    Let us know what decision you make and how you are.

    I'm really undecided as at the minute I can more or less do everything I want including walking 5-6 miles a day with the dog.    What if I needed the loo haha