Ileostomy reversal issues after colorectal cancer stage 4

[Emmab510]

My husband in feb 2015 was diagnosed with colorectal cancer. He did chemo and radiation and had surgery to remove the tumor. The surgeon messed the surgery up and he had fecal matter leak into his chest cavity all over his organs. He then had to have an ileostomy bag surgery bc of this. He was in 1 hospital for 2 months and 1 hospital for 1 month bc of the post surgery issues that the surgeon at hospital 1 didn't really do anything about. Started chemo again. The chemo triggered a genetic disorder called factor 5 which causes blood clots. He started blood thinners right after that. January 2016 his last day of chemo he had a pulmonary embolism. Was in icu for 3 days then a regular room for a week. Then had kidneys stones and procedures to bust them every week for 3 months bc the chemo killed all the good bacteria in his kidneys causing his kidneys to make them. Then dec 2016 he had his reversal finally! But has had nothing but issues with going to the bathroom. It's been two years now and he can't hardly leave the house without going on himself. He has horrible pain that makes him scream and cry every time he uses the bathroom.

Has anyone had the ileostomy or colostomy bag reversal and had issues? And if so how did you fix them or did you get the bag back. If you got the bag back did it help?

I just don't know what to do anymore. He's lost hope. We are having a hard time convincing the dr that he needs his bag bag.
He's also has had his colon dialated bc they thought that would help

[MissMolly]

Emma:
Your husband (and you, by association) have certainly been through the wringer.

Another area of support and sharing of personal experiences that might be relevant would be the United Ostomy Association of America web site. You will find others who share at least some selected elements of your husband’s complications . . . to see what avenues they perused and how they are fairing since.

http://www.uoaa.org

The UOAA forum has a general section (for ostomy discussion) and a temporary ostomy and reversal section (for post reversal discussion).

Leakage of bowel contents into the abdominal or chest cavity does significany alter the recovery pathway, both in the short and long term. I had complications of systemic sepsis 6 years ago and still grapple with residual effects that linger. I have a permanent ileostomy and do not find it onerous. Having an ostomy and caring for it has become as routine for me as wearing bifocals. Accepting and adapting comes with time.

I hope your husband and his physician team can identify means to better his life.
Karen

[Emmab510]

Last time he had his ileostomy bag the dr didn’t such a good stoma. So he had issues with it plus he was going through chemo at the same time. He just can’t live how he is now but he also does but doesn’t want the bag back. But I don’t see anymore options. At the moment. Thank you I will def check that link out!

[chrisca]

There are a few things that might help. Look into some of the IBS medications, which can reduce bowel contractions and improve continence. Pentasa is one of these and it helped me, especially at low doses (about 125 mg per day). Physical therapy might also help to strengthen pelvic floor muscles. There is a special MRI scan called defecography that can identify some problems in the post-surgical bowel and might point to some treatments.

Some other things include looking at diet for food sensitivities and eliminating problem foods. There's something called the FODMAP diet that could help. I used a variation of it to modify what I eat with some positive benefit. Changing the timing and size of meals can also work to make it easier to get out of the house and feel secure. What you describe sounds a lot like LAR syndrome, so look up that and read the advice out there. It's not all good news, but understanding the problem can help to cope better with it.

[Emmab510]

We’ve tried the fodmap and ibs meds. Weve changed the time of eating, smaller meals, tried to eliminate foods but he would eat (for example) chicken one time and the next time it would have the same thing that’s happening when (for example) broccoli. It’s never consistent. We’ve given up on those. Thank you for the suggestion. We will talk to the dr about threat special mri test bc all the other tests have literally shown a healthy colon. I really think our dr is starting to think it’s in his head or something just the way he talks to us sometimes.

[ozziej]

Emma, just wanted to let you know that there is a Facebook group for people living with Low Anterior Resection Syndrome (LARS), which is possibly what your partner has. Look it up and ask to join (carers can join if patients do not wish to themselves). There is lots of helpful information, support and tips for managing symptoms.

[Emmab510]

Thank you!! I definitely will.