5 Years Post Reversal - Still Frustrating BMs

[nicholascanada]

Feels like home coming back here...just about to celebrate 5 yrs cancer free. Cannot believe how the time has gone. VG to be on the good side of things..so thankful.

My issue still is BMs. Three years ago I was taking 6-8 immodiums a day to control things. I have tried to wean myself off even more since then.

I am now done to 1-2 immodiums per day. I still have many bad days that really tire and frustrate me. I start to feel sorry for myself and wonder why was I so lucky to be chosen for this bloody tumour!

I see a gastronelogist in Fall. I wonder though..is anyone at this stage post reversal still taking immodium daily? I have tried several times to wean right off of it..thinking that prob the immodium is causing part or all of my grief. But then I always seem to have the sensation of needing to go, and go even more frequently.

Interested to hear any comments from people who are a few years past their reversals. Thanks!!

Cheers,
Nick

[thartin]

I am 9 years out from ileostomy reversal. I have had the same issues for this long. I saw a gastroenterologist this past week. She is doing some testing to see why things are not working properly. I thought I was alone in dealing with these issues.

[To Good Health]

Congratulations, Nick on nearly 5 years cancer free!
Sorry that both you and thartin are having ongoing issues. I had to go to a permanent colostomy due to the fact that my tumour was so low in the rectum; radiation and surgery saved my life but made me incontinent rectally. I only coped with the ileostomy reversal for 17 months. You guys have done a lot better and hopefully, there will be improvement.
TGH

[nicholascanada]

Hey Thartin, I take some comfort knowing there is someone out there like me! I am hoping my gastro in November can help. I realize though that when you read about reversals, it is not uncommon for people to be forced to give them up at some point and go to a colostomy pouch. I think the frequency, and the acidic nature of the stool, can be a double whammy that is hard to deal with. When you have bad days that require ten plus trips to the bathroom, it does affect your life..there is no way around it. I believe most of what I read, and was told, is that they hope to get you around 4-5 bowel movements daily. That is best case..but I find I have too many days on the north side of that number and it does make planning for activities very difficult. You learn to plan around it best you can (ie skipping a meal here or there, loading up on immodium), but it does tire you out...as it never goes away...there is no break from it. I have had routine scopes since my cancer, and when you do a clan out prior to the exam, I find I usually get two days of no bowel movements after that. It is heavenly..like I have no words how good that is! To not think about a bathroom visit for TWO DAYS?! If only we could turn back the clock.