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

Best of luck with this. Since my last comment a year ago I can't remember now when I last used Loperamide.  The trouble is I think that not many people with positive stories look at the site; they're all getting on with their lives. so just be positive about it. The healing process takes a few weeks and needed lots of dressing changes initially, but once that was over it was good all the way. As I said before it takes a while for the guts to settle down but that was vastly better than the bags!

So all the best to you. 

Thanks for that, it's reassuring. You are quite right, people with no problems are unlikely to be on here

thanks again Mike

Hi Mikey, im a month into having bowel surgery and am looking forard to a reversal asap. end of the year hopefully. id be very interested to know how your reversal goes. How long after your op did you have your hernia? id like to avoid that if possible. I'm still trying to get over the effects of the op and rebuild my muscle wastage due to not eating for 15 days pre op and then infections post op which saps energy and the want for food. That said i feel I'm making reasonable progress despite having no bench mark to follow.i hate the bags also, so will do whatever it takes to ensure a successful reversal. Any advise very welcome.

Cheers

Mick

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

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

Hi WonkyJen

I'm hopeful having a reversal after chemo later this year. Thank you for posting such an informative and helpful post.

Your experience sound very positive and promising for people in the same situation.

How are you getting on?

Hellana

Hi Hellana, 

What a gorgeous name! 
 

Anyway, bravo for getting this far - you're doing fabulous! 

I am thank goodness still doing great! The op itself is so much smaller and doesn't seem to have knocked me about like the biggy did, and I haven't got any pain, or that washed out exhaustion...I'm not far off feeling totally normal and little wound is healing like a dream! 
 

On the pooping side of things, thankfully that's still all going well! Introduced some vegetables 2 days ago (what bliss! Tomatoes, chick peas and peppers...oh what joy! Going to try some mushrooms today- what heaven!) So for some details...sorry...but it certainly is what I would want to read about...knowledge is power etc! 
 

I have the feeling I want to go a lot...and that increased when I added veg. But I try very very hard not to rush to loo every time and at least half the time it's just wind...I don't want my brain/body thinking that every little feeling results in pooping! My movements are still smallish softish poops, like kids poop really...yesterday a did need about 5/6 visits through morning after veg night before...but totally manageable- and not as bad as I thought it was going to be! 
 

Biggest recommendations are drink loads...I drink minimum 3 litres a day...always have...hydration is sooooo important! And do pelvic floor exercises- from now! All the time! Like any muscle, the more you use them, the stronger they get! Stop your pee EVERY time you go to the loo etc...you will be thankful after your op!

All the best Hellana, (and Mike next week!) and don't hesitate to yell if you ever want to chat - one step at a time x 

cheers

Wonky Jen 
 

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