Reversed Ileostomy Complications: Seeking Advice and Hope

My husband had his loop ileostomy reversed on 9/22. It was an emergency surgery as he had developed a second SBO. He has all of his small intestine (except for about 6 inches), all of his colon but his rectum was removed. His colon/rectal connection is VERY low, just above the sphincter muscles.

He has had some issues in the past couple of weeks with diarrhea and urgency. We are using Imodium and Metamucil. We had a f/u dr. visit today and they pretty much told him that he will likely have these issues for the rest of his life and may elect to have a colostomy at some point. My husband is extremely angry, says he should have never had the operation done originally and just has an all-around bad attitude. The original surgery was to remove rectal cancer.

Does anyone have any experience with this type of situation? Are there ANY positive stories?

Thank you!

Hi there,

I have a question for you.. You said you are using Imodium and Metamucil. Metamucil is a fiber supplement that is to help having a bowel movement and Imodium is to help with diarrhea. I am a bit confused on why the two. Before my Ileostomy, I had my entire colon removed and my small intestine was hooked to my rectum. I have very severe pelvic floor dysfunction so that surgery for me didn't last long and I got my ileo but when I would eat, I would have to go to the bathroom very quickly and I would have diarrhea.

Being angry, while understandable, is never good. Clouds our thinking process.

"Reversal" is the hope, the possibility of a return to normal. Many Ostomates hope to obtain this. But Reversal could lead to a diminished quality of life.

Your husband should pursue the colostomy. His current troubles are unsustainable. A colostomy should provide a predictable bathroom schedule, allowing him an improved quality of life.

Not sure what large health systems you have near you, but it sounds like getting another opinion about options could be good…. It might help your husband be less angry too if he can be more involved in deciding what happens to his body moving forward. For me, they tried to leave the timing of things in my court as much as was safely possible because when the patient is able to have more control, the psychological outcome is better and with that the physical. Cleveland Clinic has one of the best colorectal programs if visiting a teaching/research hospital could be beneficial for him. 

The problem with that is that he would rather die.

I have a colostomy. It was unexpected. I was told it would be temporary. It was not, it's permanent. Am I happy? Yes.

Yes, I'm so thankful to have no more pain. I'm thankful my colostomy allowed me to fully recover and get my life back. 9 months ago laying in the hospital... I thought "this is it. This is how I end." I said goodbye to my wife, gave her final instructions.... and was wheeled off for exploratory surgery.

Well.... here I am now. Working 6 days a week Traveling again. Living.

All due to a wonderful medical advance called a colostomy. It's no hassle to take care of. I really don't notice it that much. I'm 65, If I can do it... your husband should at least consider it.

It's really no big deal.

Good luck and God bless

Beachboy, I feel the same about my ileo. It is such a blessing to me, and I am happy and so proud to have one. I spent my entire life being trapped, not being able to go anywhere, always sick and in pain. This gave me a life. I thank God for His beautiful blessing.

The colostomy greatly improved the quality of life in my case. Horrible piles, fistulas, bleeding... was bad enough, but rectal cancer at stage 4 and 5/8 (lol) put an end to that nightmare. This is the new normal and I'm fine with it. He should probably have it done. He will feel better.

Strength.

 

I had rectal cancer very low and not having an ostomy wasn't an option for me. The cancer basically ate my sphincter muscle away and I had no control, running to a bathroom 30 times a day. Having a colostomy and Barbie Butt really isn't a big deal to me. I'm always aware of it but don't pay much attention to it most of the time, if that makes sense. Ask anything you want as I'm sure someone on here can relate to what you and your hubby are dealing with.

I'm sure hearing your husband say he'd rather die than have a permanent ostomy isn't easy. He's not the first and he's not going to be the last person to say that. One person I know was told by her doctor she was "either going to leave with a bag or in a bag." She was very sick at the time. I don't know if your husband is at the point where he needs a tough love approach (I'm not saying quote the above), but I'm guessing you can tell if he's at that point and who he'll listen to, not respond best to, but actually listen 😉

Tempileo,

Does your husband look at this website, Ostomates? If not, maybe you can gently guide him to read some of the stories/advice posted here. These are real people, all over the world, who have personal experience with digestive diseases, surgeries, cancer, and ostomies.

On this website, he will discover what it means to be tough. Not Hollywood-style phony bravado, but real people who have faced extremely difficult choices. In many cases... life or death decisions.

Ostomates are survivors. Warriors. Many were on the edge of death, then saved by ostomy surgery.

It's not easy at first, living with an ostomy. But we adapt, we learn, we gain experience. And share it here. The mental ups and downs, tears, joy, and yes, even humor.

Your husband is angry. Yes! Life is unfair. I know. At age 23, I had 9 hours of exploratory surgery. Revealing stage 4 thyroid cancer, spread to both lungs. During the procedure, a carotid artery exploded when cancer was removed from it. Spent 2 weeks in intensive care. Lost my voice due to surgical nerve damage. Spent a year learning to talk again. Was told I would be lucky if I lived to see 30. Over the years, I've had horrible biopsies, 5 more cancer surgeries, 2 whole body radiation treatments, nasty chemotherapy. Developed neutropenic fever (immune system breakdown) requiring hospital isolation. I was a "bubble" boy for a while.

Through it all, got married, traveled the world. Started a career and worked 6, 7 days a week. Bought a nice home. Lived a great life. I'm now 65 with a colostomy.

There are many stories here like mine. Real superheroes. Folks who faced adversity, made difficult choices, survived, and got their lives back.

I know your husband is pissed. I've been angry. The old "why me!" Over the years, I've gained faith. First was faith in myself. But over time, discovered I really needed more than my own inner strength. In my darkest time, really suffering, I reached out, asked God to help me. I've had a tough time. But God heard my cry, took hold of me, and drew me out of deep waters.

Lots of good advice here. I would only add, as I look ahead to my own reversal on November 15, that from what I have been learning, it is really early for your husband following reversal. For most people, the first couple of months are really rough, but many see significant improvement over time. There's no predicting. Everyone's situations and bodies are different, but I think most people who have had successful reversal stories would say that improvement often comes after months of really challenging experiences. The body takes a while to rebuild muscles, feedback loops, stretch for storage, and re-establish a healthy bacteria environment in what had been a dormant colon. There is a really helpful community on Facebook, part of Colontown, called Reversal Roundabout, that I would recommend joining to add to the voices here. There are many resources and experiences around reversal there that I am finding really helpful.

Rich

Thank you all for your replies. I agree with you, Rich. It is very early in my husband's reversal. We have been doing a lot of experimenting, and I am happy to say that we have things somewhat "slowed down." We are using Imodium before bed, fiber prior to every meal, and it is bulking the stool enough that he has more control. I am hopeful that things continue to improve. One interesting thing that we have found is that THC really slows things down and provides tremendous relief. Not a solution for all, but better (in my opinion) than being spaced out on narcotics.