Dear fellow cancer survivor. I had my ileostomy reversed a year and a month ago. For the first three days I went to the toilet as much as 21 times. I was advised to take loperamide as you did and that brought it down to 6 times a day. For my sore bottom I use sudocreme. Now I take one per day and sometimes skip a day when the bowels are too slow. I too have discomfort when my bowels become loose. I find that light exercise helps with the wind. A starchy diet is helpful. I also eat fish twice a week. Thankfully when I am out shopping for my groceries I use the toilets in the supermarket if needed. I think our bowels will never return to what they were before the operation. Think positive and know that it will get better as time passes. Adjust your life to your present condition. I prefer to live with the reversal than with an ileostomy.

Will get better as the years go on.

Takes a very long time to get almost back to normal.

Thanks for your reply. Much appreciated. I am now 76 years old and live in East Sussex. My journey through cancer started when I did a routine stool test in early 2018. Previous to the stool test, I visited my GP after I found that there was a noticeable change in my visits to the toilet. My blood was checked and I was reassured that there was no sign that anything was wrong. Lucky for me to have had the stool test which showed up abnormalities. An appointment was made for me to have a colonoscopy. I was a relatively healthy person and continued to attend gym after my retirement. I thought the colonoscopy would be a routine check since I had one done twelve years before. But the recent colonoscopy indicated that I had cancer. Colorectal cancer - Adenocarcinoma stage 3. The hospital moved swiftly and I saw the consultant and the oncologist in quick succession. I started my radio and chemotherapy sessions in June 2018 which lasted for five working weeks. I was truly overwhelmed by the care I experienced by the NHS staff and the friendliness of the other patients.It is amazing how being ill can bring people together in solidarity. When the chemo-radiotherapy sessions were over I had a break of five weeks. After another appointment with the consultant I had my operation in October 2018. I was given a loop ileostomy and lived with my stoma until February 2020 when it was reversed. I wondered, during the first month after the reversal, if I had made the right decision to have the reversal. I am happy that I persevered. The journey is not over and with the advice and sharing of our experiences I am reassured that I made the right decision. I get flare-ups ever so often. I might be doing well and then every two weeks my bowels feel irritable. I have kept a journal on the frequency of my motions and what I eat. My motions average 5 times a day with the help of one loperamide per day. This is a monthly average. My diet is also important in helping to control the frequency of my motions. I find parsnips are a blessing to my bowels as well as sweet potato, rice and pasta, chicken, fish and peanut butter, quaker oats and malted bread.  I also exercise: squats, touching my toes, situps and walks. These help my bowels to work better. I drink warm water and peppermint tea. These all help but I am still learning. Wishing everyone in the community the best. Never give up.

It was seven years ago when I had my reversal.I am still on 4 loperamides per day. was originally 5 per day.Had the bag for eleven months.

I go to the gym three times per week (normally anyway, not at the moment!). Go for a four mile walk every morning.

Still occasionally get flare ups, say once every six weeks.

After the reversal it was every day. The flare ups are presumably from what I've eaten.I just go for it and if it flares up them it's my own fault !!

I am in Cheshire and am 77.

Thanks for sharing. It s good to know that I am not alone on this journey. Do you find that with the constant use of the loperamide capsules one's tummy/waist size becomes bigger? My tummy/waist size is bigger than it used to be before the operation and immediately after the reversal. Or is it that I am more inactive during the pandemic? I had my reversal in February 2020 just before the lockdown began.

No, I don't remember noticing  any increase in waist size .

Possibly just lack of exercise during this time. !

No, I don't remember noticing  any increase in waist size .

Possibly just lack of exercise during this time. !

Thank you.