Hi Darren

I had the reversal on the 9th of may with something extra (hot chemo). I had my stoma from november 2016 right up to the 9th of may 2018, how I hated it no words can describe it, in my case because of the hot chemo the operation lasted almost ten hours.

Now that I have my *** back everything is fine it took a couple of weeks

Did you do your retention exercise ? VERY Important !

Just the same really. I was diagnosed with bowel cancer in 2012 (after a postal poo test) and had an ileostomy. Fortunately I was able to have a reversal in July 2013. I’ve always had to keep loperamide close by and used it quite a lot in the first 2 years. Now after 6 years I only occasionally have loose BMs and these are effectively controlled with loperamide.  I eat and drink what I like really and use loperamide perhaps once every 3 months now. This is all vastly better for me than the bags etc. So not everyone has a horror story here.  All the best

Hi Mick

I also had problems post op. Meant to be in hospital for 10 days but developed sepsis and spent 3 weeks in there! All good now 4 months on and putting weight (too much) back on. The hernia developed within 4 weeks of coming out. I should have been advised to wear a support belt as soon as my wound had healed, I think this could have prevented it. Sounds like you're doing fine. Just make sure no lifting, pulling, pushing..that's really important to avoid the hernia. Unfortunately the stat is 70% of patients do develop them. Support belts imperative. Im due to get my reversal June time but I guess with this virus it'll be delayed. 
I more used to the stoma and bags now but still want it gone. Always careful what I eat as I have had previous blockages...they cleared themselves but uncomfortable for a while. 
Just finished my last chemo so onwards and upwards from here.

Take care of yourself, feel free to ask me anything you want

Mike

Hi Mike

Thanks for the reply. BTW my cause was diverticulitis rather than cancer, at least they dont believe at this stage that that was an issue. Covid 19 will delay everything but as long as its done at some point sucessfully. You are right about only those with issues write on here as I have heard of some great success stories on reversal with close to zero issues once all is healed. Anyway would love to stay in touch as things develop for comparrison. My fitness is my biggest concern so have just ordered a new bike to get the leg muscles going. I will also look at the belt right now.

Best wishes 

Mick

Hi Mick

Yep, feel free to stay in touch. I'll let you how my op goes when I've had it. Hopefully I'll be one of the many success stories. Fitness is something I've been a bit remiss on. Walking the dog is not enough...and my motorcycle riding (which is strenuous) has with the stoma been curtailed.

Re the belts, Supportx was recommended by my stoma nurse and I also have belts from Comfizz....both of which come on prescription. Good luck looking 

Speak soon

Mike

Hello Mikey132,

                       if you are lumping a jota about l can well believe you when you say its strenouus,l remember having a 1200 aniversary model on a long weekend test from my then local dealer,slater bros at bromyard.Struggled to make my mind up about it ,good in places,hard in others.On the nadgery stuff my LC would have it for breakfast,but on open flowing roads with sweeping curves l wore the biggest grin.Around towns a build like rambo would have been useful--lol

                                                                                       hope  the reversal goes well,l wear the badge for having been there,and losing that bag was well worth the price for doing so,l hated it with such a vengeance l did not believe was possible,and looking back 5 years on getting back to near normal was worth every bit of grief along the way.Maybe you should switch to a 500 Pantah during your recovery and avoid the mainstand hernia situation ,

                                                             go well, David

Haha...yes, it was a beast!...officially the first 'superbike' sadly now sold but good days. I know Slater Bros well. 
Now busy with Triumphs, currently getting a 1968 Bonneville ready for after my reversal!! Luckily I have a 900 Sport with a side stand and more importantly electric start!! 

Good to hear positive news re your reversal, some 'accidents' I've had have made me start counting down the days to the op!

Great to talk

Mike

Hi Mike

I had my ileostomy reversed 4 weeks ago today. The virus didn't hit my area badly and there were, and still are, no Covid patients in the hospital, for which I am very thnkful.

My original op was March 2019 and, like others on here, I hated the bag and also developed a hernia. I had really struggled to find any helpful information online about what to expect after the reversal and the medics seemed to just gloss over the subject - so I thought I would share my experiences, warts and all, for anyone interested.

I was in hospital for 5 days post op. During that time I had continual diarrhoea and was rushing to the toilet roughly 3 times an hour, day and night. Very painful involuntary straining, a bit of blood involved so I guess I popped something down there, and generally just very tired. The trips to the loo slowly got fewer and less urgent - but don't get too confident! A couple of accidents put me in my place.

On the day I was discharged my system decided to shut down temporarily, which was handy for the 45 minute drive home! I wondered if this was the constipation I was warned about but later that day the trots came back with a vengeance, so not constipated then. I asked the surgical team if I could take Loperamide to help ease my experience but they advised against it in the early days in case I did indeed cause constipation, which could have implications for the new join in my bowel. But following a discussion with my specialist nurse a week ago I am now using it just once a day, usually in the early evening, in order to give myself some respite during the night. I don't take it all the time - just when I feel the need.

My diarrhoea ceased about 10 days ago and I have much more control over the urgency. I'm not confident enough to want to venture too far from home/toilet at the moment but then we're not really allowed to anyway! I need to use the toilet about 4 times a day currently and I'm pretty sure this is to do with the lack of 'storage' I have now. Still a bit painful with the involuntary spasms, but I'm hoping this will ease with time. No blood evident any more. Overall I'm really pleased with the outcome so far and especially when I can run my hand over my abdomen and feel - nothing!

My surgical wound, by the way, was healed within 3 weeks, although I'm under orders to not do anything much for at least 6 weeks to allow the join inside time to recover properly. I'm a woodworker and can't wait to get back on the tools.

I've seen quotes of anything between 6 months and a year for the bowel to get back to it's new normal after reversal and with my current rate of recovery I would think I'm looking at 6 months. But we're all different and that may be why it's so difficult to find any definitive information.

I hope your operation happens soon Mike, and I also hope any little bit of this is helpful. Good luck and if you've got any questions at all please ask - my dignity went out the window last March so I'm happy to discuss anything now!

Paul

Hi Paul 

Thanks for your reply, it was really helpful.

I'm glad yours is now starting to settle down, hopefully completely soon.

I had my op the start of November 19 and I've just had the check to confirm I'm ready for the reversal. I am which is good!

This is happening, middle/end of July. I can't wait to lose the bag. I know what you mean about running your hand over your abdomen...looking forward to the hernia going!

My surgeon has warned me to expect some issues afterwards as the 'join' for me will be low down. I'm hoping however that as I've been lucky so far with recovery times from treatment and operation this will continue. I hope so, as I've optimistically booked a holiday in November (virus permitting)...8 hours on a plane!!

I hope your recovery continues to go well and I really appreciate you taking the time to contact me.

I'll let you know how mine goes

Cheers

Mike

So glad my experiences have helped Mike, and good to see your reversal is imminent. There's so little advice or information available that I feel almost evangelical about getting it out there.

One thing I should add is that immediately post op I had, and still occasionally have, very little control over my bowel - when you get the urge there's no guarantee you'll make it to the loo. My reversal was 14 months after the original surgery, yours will be 8 months, and I wonder if the length of time being 'out of service' has a bearing on how much control you have. Also, for context, I am 67 in August but was very fit and active before my diagnosis. As I said, I'm a woodworker, am in the middle of renovating a 170 year old stone cottage and did some woodland management on behalf of our local landowner - so no slouch! It's a demeaning fact, but very real, that you will find upon your return home that a supply of adult 'nappies' can be useful. Even if they're never put to their intended use it's comforting to know that any accidents will never become disasters. I no longer need them during the day but wear them at night just in case - although am thinking I may no longer need them now.

Thanks for your good wishes - I hope all goes well with you too - and anyone else facing the op and reading this. Please do let me know how it goes.

Cheers

Paul

Hi ho, 

Wanted to add a so-far-so-good positive note real time! I had my Squirty Bert created end of Sept lat year (2019) so had him for pretty much 9 months exactly. Had my reversal op just 3 days ago on the 1st July (2020) and Bertie went back in the closet! I was flippin terrified before going in...I was pretty much back to 'normal' after the horror of being diagnosed with bowel cancer and all that goes with it, feeling fit, healthy and positive, and generally, other  than the restricted diet, was feeling fine when I got the call for reversal op -gulp.  I'm only 45 and the thought of pooping myself for up to 2 years was pretty off putting and as me and Bert got on ok for the most part I was considering keeping hold of him...but after good chats with fab colorectal nurse, in I went masked and alone and shaking...

It was fine! Op was tiny compared to original, and I already feel great. Was home yesterday lunch time...so less than 48 hrs later, after having 'passed wind' (my hospital's criteria...some prefer to wait until actual movements)  Am sticking to my early ileistomy diet for now...and so far so good...lots of gurgling and some grippy colicky type pains (but still not even on the radar compared to main initial op), and started 'moving through' today with some soft-ish pale chipolatas (sorry for details..but I would find it useful!!). But so far under control...and I'm fighting the urge to rush to the loo every time I get the feeling to go which I believe is important to remind brain and body that I can choose when to go! 

As someone has already pointed out, people don't usually post on these forums unless experiencing problems (yet we all come here pre-procedures for answers!) so I really wanted to say it can be ok...it will be ok...and remember it's nothing compared to what you've already been through...you'll be grand!! 
 

(let's hope this doesn't bite me on the proverbial sore but cancer-free *** and it all goes poop crazy next week... but so far so good  ) 

all the best dude, and yell if you want to chat/share - I'm literally going through it right now

p.s. just because it tickled me pink, but my phone keeps autocorrecting bowel cancer to vowel cancer...sticking to the consonants here

Hello Mikey132,

                         now that you are about to lose George l hope you have brushed up on your quickstep moves,speed training is essential over the initial period,as is once again experiencing the novelty of using loo roll once more,and go for the softest available.And one piece leathers are probably not the greatest choice for a wee while,as are belts,buckles and anything that gets in the way of rapid dropdown.

                 Going forward it helps to bear in mind there is no bowel the same and you have to find what works for you through trial and error.Five years on from my reversal my bowel is still changing,all for the better.l had secondary spread to my liver which meant l lost my gallbladder with the result that l produced excessive bile that irritated the bowel lining.Eventually l discovered colestrymine powder,and now take one sachet in the evening,and one loperimide in the morning which keeps me to one loo visit in the morning and one in late evening,with full control to allow me to get out and about.l did invest in a motorhome during my recuperation to allow me to get out and about with my own facilities,and a couple of portable loo's positioned about my workhops and buildings helped.l also found that bending,kneeling down and sitting for any length of time was not helpful,upright and on the move was definately better

                                                         Although l would probably count as one of the more excessive cases l have to tell you the decision to reverse has never been regretted once even through the most trying of times,and l am living my life happy,so l hope you will soon be able to do the same.

                           As a footnote my neighbour was diagnosed a year before me and probably saved my life by raising my own awareness.He too lost his bowel very low down,and has made a great recovery  and was out and about all over the world in his professional role,

                                                                                                   We all lose friends but l am sure that the demise of George is something that you will come to look upon with a smile,

                                                         best wishes for this Tuesday,

                                                                                                        David          

Thanks for the message David, just got back from my pre op and a covid test. Strangely looking forward to Tuesday as can't wait for George to be gone. He's obviously not happy about it, as he decided to explode out of the bag while I was having the tests!

I'll let everyone know how it's going when George has finally bitten the dust

cheers

Mike

Hello Mikey132,

                      the thought just struck me that maybe we should have a naming confessional,mine was called vesuviarse due to the regular explosions,you have just got to have a wry smile and a sense of humour when you have a stoma as a dance partner,

                                                                                Heres to George,shortly gone but not forgotten,

                                                                                                                                        David

What inventive names you've all used and great to hear about them.  I suppose that from the outset since they said it could be reversed I never felt close enough to him (definitely male) to give him a name.  Now retrospectively it might have helped!

Now one thing no-one's mentioned is that test they give you after the reversal to check there are no internal leaks.  For me I recollect it was about 3 or 4 weeks after the reversal and they had you in for an O/P appointment to pump liquid up from the bottom (sorry about the visual reality here) - I suppose there was an x-ray opaque element of some sort in it - and then they took some x-rays.  There were no problems and at the time I thought that if there had been, it would have become obvious much sooner anyway - so what was the point? 

So after the test, what goes in must come out and they advised me to sit around for a while near the loo and await results.  Which weren't long in coming.   And after about 25 minutes I thought that's all over then.  Big mistake.  In my lovely Lexus IS 250 Sportcross - fortunately leather seats - couldn't hold on any more on the M25 between Ashford and Woking - and a wet accident ensued.  So my advice is, wait at least an hour before venturing out away from a loo.  No great problem but not much fun at the time.  

And nothing more to report really.  As I noted in my March post, really this is all well in the past and everything continues to be entirely new normal now.  The only difference I notice is that frequency and regularity are a little less routine than in the past but no problem.  

So good luck to you all  So good luck to you all as reversals go on and keep the news coming.

All the best

Frank 

Hi all

well that's it! Generous George is history and hernia repaired!
Reversal op now done. Took place 8 days ago.

I have to say, I've been lucky so far...no frantic rushing to the loo yet. Going probably 2-3 times daily, obviously very loose but no soreness.

I've had a couple of episodes of involuntary 'passing' during the night but the adult 'nappies' I was recommended have been brilliant....even if I have to wear them back to front!

I'm hoping this will eventually pass and I'll soon get back to the new normal, whatever that will be. So glad I had the op done.

I'll keep you all informed as to progress but at the moment feeling positive 

best wishes to all

Mike

Hello Mike,

                  just passing by and asking how you are coping with the "new you"that replaced "george".l am guessing that by now you should be up to speed and none to shabby on your 0-10 mtr acceleration, hopefully though you have control of your forward motion and are heading in the right direction,

                        David

Just found this chat. Little Paul, my stoma, arrived September 2020. It's named after a good friend of mine who is an irritating little s@@t. Initially, we did not get on but you learn to be organise, always have a replacement pack etc etc. My general health really improved. I did develop a pretty big hernia. I got back to all the things I liked doing; golf, gym, cycling. 
 

Anyway, a year later on 27 September 2021 I had the reversal. It took 2 days for it too work and now it can be like a tap!! I am told this will get better!!  I also get some pretty severe spasms in my gut which certainly make the eyes water!!  They gradually wear off!! Just had an accident in my sleep. Previous, I have woken up before this has happened!! Fortunately, it wasn't disaster. I see some people here have used I've night nappies. No very dignified but I think necessary for me now!!  Any recommendations. I am a 34 in waist, 88kg and 5ft 9ins. Thanks in advance. I'll let you know how this progresses as I think I'm in for the long haul!!

Hi,

congrats on the reversal! I had mine reversed in July 2020....just over a year now and everything seems to be finally settling down! I still have to be wary what I eat and little 'accidents' can happen but as the muscles down there strengthen it gets better. I still wear a small pad round the rear end but this is more a confidence thing which I don't really need and I'll lose soon. I too had a large hernia at the stoma site but they sorted this at reversal

It just takes a while, be patient, most important thing for me was discovering what I could eat and what affected me

good luck

Hi all,

I've been reading this forum for a year or so since I had my stoma put in place following complications caused by diverticulosis. It was the only place I could find some practicle, honest information about what to expect should I ever be fortunate enough to have a reversal.

I have never really got to grips with the bag and have hated it since day one.

To cut a long story short, I had my end colostomy reversed exactly three weeks ago and wanted to let those who may be nervous about what they might face an idea about what may lie ahead.

Firstly, the decision to go ahead with the reversal is the best decision I have ever made. Not only has my bag gone but my melon sized hernia has been repaired and I now feel so much more confident and contented with life.

The surgical procedure to reverse was so much easier than the initial operation. The day after my reversal I was encouraged to get out of bed, something I could only have dreamed about after the first time in hospital when I developed an infection and spent 3 weeks there.

This time I was allowed to start what the nurses called a 'sloppy diet' ( soup, ice-cream, jelly etc) after my second day post op and was able to walk up and down the ward for short periods. The following morning I past a bit of wind and was astonished to discover that this was enough for my consultant to decide that I could go home the following day (day 4).

Just to add, that the scar where my stoma had been was no more than a 6cm straight line held together with 6 stiches that were subsequently removed a week later by a nuse ay my GP practise. Although a little sore for a week or so, I have had no pain from it since. The other three scars from the keyhole surgery are no more than 1cm in length and simply required a bain aid over them for a few days.

Two days after going home, despite passing wind, I had still not had any kind of proper bowel movement and was getting a little nervous that something wasn't right. I needn't have worried as the following day (day 7) things started to happen. After passing a little, bloody poop I spent the rest of the day running to the toilet with diarrhea every half an hour or so. I must admit to feeling a little fed up at this point, thinking that this was going to be the new normal.

The following day, however, I passed what was effectively a 'normal poop' and did so on two more occasions that day. Three the follwing day and two the day after. By day 11 post op I was going to the toilet after breakfast and then again last thing at night but had total control and things were back to somewhere near normal.

It is now three weeks since the operation and I am feeling great and having bowel movements somewhat similar to those I had before the stoma. My appetite is returning and I am starting to add a little more fibre to my diet.

I hope my post is not too long and laborious but I just wanted to let everybody know that, for me, the reversal has been a great success (so far!) and I encourage those who are not sure whether to go ahead to give it a go.

By the way, I am 58 and newly retired.

Please don't hesitate to ask any questions that I havn't covered and good luck to you all.