Ileostomy and Reversal

[salshep]

Just wondering if anyone has had an ileostomy which was later reversed. My husband is really struggling with horrendous stomach pain, especially when he eats, and nerve pain throughout his body. He's on the loo most of the evening and throughout the night. Just hoping someone has had a positive and can reassure us that it does get better. He was stage 4, colorectal, lymph nodes and liver. He's been through so much in the last 15 month's and we were hoping things would be improving now but he feels worse than ever.

[Slife]

Hello. I have every sympathy with with him! I had an ileostomy that was almost totally unmanageable. I had a reversal and was advised that it is likely to take 18 months to 2 years to settle down... I am 10 months in and seem to have the opposite problem with my plumbing having gone on strike! I wonder what the specialist nurse thinks about his recovery? Mine has been very supportive. X

[salshep in reply to Slife]

Unfortunately, we weren't given any idea of what to expect following the reversal, not even advice on diet etc. He had his post op appointment with the surgeon and specialist nurse earlier this month and they both seemed shocked by how he's feeling. The advice was take imodium and if he can get down to going 5-6 times a day they'll consider that a good result! Oh, and take painkillers. That's it other than a colonoscopy and CT scan in December to check for any signs of the cancer. Nothing to determine the cause of why he's feeling like this. I think the consensus is that it will take time after everything he's been through.

[Slife in reply to salshep]

That's easy to say and hard to live with isn't it? After all that it's easy to feel that life will be great after reversal only to find it's not the end of it. I have a check and long discussion every 3 months and a scan at 6month intervals. I'm bust taking laxatives. You cant win can you!!! All the very best to you both x

[salshep in reply to Slife]

Bless you. All the best to you too, hope things improve soon x

[kewl1]

Hi. Yes it DOES get better. I had stage 3c, had my rectum removed, chemo and an ileostomy. After a year I had the reversal I was totally unprepared for what would come next. My surgeon is wonderful but of no help at all when asked for advice on what to do after the reversal. He just answered yes to all my questions regarding can I eat this or that or spicy or whatever. I had read of a person saying they were back to normal after a couple of weeks. I would say that those must be rare. I think it was 7 months before I felt anywhere near normal. I feared I would never get used to food. It is now 13 1/2 months since my reversal. I have kept a log every day of what I eat so I could identify what the problem foods were. I spent many days and nights running to the bathroom, and sometimes not even making it.

I take 3 x1200 unit Omega 3 fish oil pills (Costco) per day because I read that you might want to have oil to help it slide out. I also take a tbsp. of NOW psylium husk in a glass of water after dinner at night. Just today I read that you should take it before eating. I had lunch with a guy this week that pulled his out of his pocket in capsule form and took it right there in the Chinese restaurant before he ate.

If it makes your husband feel any better I am still in the bathroom between 0 and 12 times per day. I have very few "accidents" now but had one last night in the middle of the night. I got up 4 times to run to the bathroom and then the 5th time I didn't make it. This hadn't happened for months. I think I can blame a new food that I had never eaten before.

On the bright side, having cancer knocked over 60 pounds off me. The crazy part is that I dropped about 35 pounds with the ileostomy and expected to get fat again after the reversal. But instead I have lost more than 20 additional pounds and kept it off. In fact I weigh at least 60 pounds less than I used to before the cancer. I watch what I eat now and I go for an Oncologist ordered walk every night although he only said 5 times per week for cardio. Not sure what cardio has to do with my bowels. Anyway sorry for running on so long but it does get better but just takes time, more time than I thought. I think people in the UK have special nurses they can talk to regarding these issues. We have nothing like that in Canada so I have to learn from these forums and from Dr. Google who told me that I probably had cancer.

Good luck

[salshep in reply to kewl1]

Thank you so much for taking the time to reply me, it's very much appreciated.

The Imodium seems to be slowing his bowel down fortunately. His diet probably does need looking at. I'm coeliac so we both tend to eat naturally gluten free foods ie meat, fruit, veg and dairy.......probably thing's he shouldn't be eating too much of.

Like you, he is suffering badly with neuropathy which I believe is a side effect of the chemo. He also has masses of tummy pain and there is a lump near the ileostomy closure, maybe a hernia?

I'm so pleased that things are gradually getting better for you and hope my husband also sees improvement too.

Take care 😊

[kewl1 in reply to salshep]

Regarding the lump it is my understanding from what I have read, that hernias are very common after an ileostomy. In fact my neighbour had as many as 8 over a 13 year period. She would not stop working hard making beds in a hotel even though she did not need to work at all.