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

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

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