Living with MS and Considering Ostomy Surgery for GI Issues

Maybe I'm in denial. I have had 8 years of GI issues likely a result of MS. My lower sigmoid colon is not working properly as seen in tests. I will have days where I am just waiting to have a BM. But then I will have a somewhat normal (incomplete) BM and I will think maybe (by some miracle) all is ok. The issue impacts my daily life in significant ways. My surgeon says I will have a better quality of life with the surgery. It is a big operation and I am scared. Anyone here have MS, atonic colon, slow motility? Scheduling the surgery electively is scary. 

My reason for having an ileostomy is different from yours, but as for the denial before surgery and after to some degree, I was the same and think most members have gone through it. I knew what was wrong with me, but always had something nagging inside me saying they had made a mistake. Even going into surgery, part of me was thinking they would see there's nothing wrong with me and just sew me back up. I was too young and stupid to tell anyone what was going on in my mind; you're doing the right thing talking about how you're feeling.

Constipation and fecal incontinence are common with persons with MS. The fact that you know your sigmoid colon is not functioning properly is the primary issue — it will only get worse. If you have a descending or sigmoid colostomy, you can irrigate if you choose — giving you more control over bowel movements. A secondary consideration is whether your MS allows you the mobility/dexterity to perform an irrigation. With a malfunctioning sigmoid colon, a colostomy is your only chance for relief. It is a significant decision — you have to decide if you want to continue the struggle you are in, or learn to manage an ostomy.

I pray that your decision is made clear to you — it is a decision only you can make.

Update:  I misunderstood the irrigation response and now I get it. That is something to talk with my doc about. Thanks for the suggestion.

The concern with the irrigation is I have pelvic floor issues too. So the concern is about greater concern for incontinence. Thanks for the reply and insight.

Managing an ostomy is not the problem I thought it would be. There were certainly difficult days when I was still learning, but those problems were worked out by about a month after I came home.

I know MS impacts manual dexterity, so I hope this will help. I have peripheral neuropathy in my hands from chemo, and this reduces my manual dexterity. I had trouble cutting my wafers and had to ask my husband to help me. Once my stoma had settled (about 6 weeks to 2 months in), I started ordering precut wafers so I no longer need help.

Only you can make the decision, but I wanted you to know a bit more about having an ostomy. Good luck.

My Ostomy Journey: Kimberly | Hollister

What is the scary part for you? I had a dead large colon with no motility, couldn't go to the bathroom at all, so I had to literally live on laxatives for 15 plus years, very severe pelvic floor dysfunction (enemas got stuck and stayed up in my body), and I have upper digestive problems, along with other rare medical problems.

As far as the bathroom portion, an ileostomy and removing my dead colon was the best decision I ever made. The frustration of not being able to leave the house, living on laxatives, and the horrible pain of not being able to go to the bathroom is gone. If you're worried about an ostomy, don't be, especially if you're having pain and major issues going to the bathroom. It is your decision at the end of the day.

I understand, considerations about FI changes this conversation. Getting a colostomy or ileostomy makes sense  for FI —the procedure reduces time spent with bowel care and can provide independence, improving your quality of life. The downside is hernias are more common in patients with neurological diseases than those w/o neurological diseases.

Incontinence and independence of bowel management are better with the stoma but colon motility is not changed therefore some surgeons prefer performing a laparoscopic loop ileostomy.

With the problems in your pelvic floor, FI concerns, poor colon motility, and hernias occurring more frequently with colostomies than Ileostomies, an ileostomy probably makes more sense than a colostomy.

I am pretty sure it is the pain from surgery and recovery that I am scared of.

Hello,

Two years ago, at age 65, most of my sigmoid colon was removed and replaced by a colonoscopy. At first, it's rough. Learning about the stoma. Finding the appropriate wafer/bag that works for you. Changing the wafer. Keeping your peristomal skin healthy. After a few weeks, it all becomes better. I don't even think about my ostomy anymore. We adapt quickly.

I had about three months of horrible pain and suffering before surgery. I came close to dying. My most cherished memory: waking up in my hospital room after seven hours of surgery. It was about 4:00 AM. I stared at the ceiling and marveled... I felt normal. No pain. No fever. I lay there for hours, luxuriating in the feeling.

Wishing you good luck. Please let us know your progress.

Hello, if and when you decide on surgery, be sure to talk to the surgeon about the length of the stoma. It should stick out at least an inch after everything is healed; otherwise, you will be dealing with sore, raw skin around the stoma. The pain from surgery is manageable; that's what meds are for. Good luck.

Very important point. Provided enough intestine is available. Lots of new ostomates struggle unnecessarily because their stoma is too low to skin level. Better too long than too short.

Don't let what stops you, especially if it's going to improve your life; that's what you should focus on. Getting better and fixing the problem you have. I have had to have it done multiple times.