Normal for Ileostomy - Abdominal Discomfort?

Hello, it's been a year since surgery. The surgery was to remove a small intestine tumor, but due to complications, I have a permanent end ileostomy. Because of the surgical complications and an emergency second surgery within a week, my recovery has been very slow. I had no other bowel issues before the surgery. I am wondering if it is normal with an ileostomy to have some tenderness or discomfort in the abdomen, especially on the side of the ileostomy, such as feeling like something is in the way of the muscles (I appreciate there is, just did not expect to feel so aware of it), discomfort on the side of the stoma and hip after walking or light exercise (sore when using muscles, feels like a strain), feeling like something is stuck under the rib above the stoma at times, random sore or tender spots, and the area above the stoma being hard at times and not at others - presumably food in the bowel? Does any of this sound familiar? Does it improve? If my tummy feels like it has a muscle strain after exercise (a walk), should I ignore it or rest until the discomfort when moving goes away? TY for any answers.

I am also a year out from an end ileostomy, and I do not have any of the discomforts you describe. I can feel the internal changes near and under the stoma, especially when I try to suck in my gut or am laying partially on my stomach. But, there are no issues after light exercise or my daily 3.5-mile walks. Have you talked to a medical professional about this? If not, I think you should.

Daniel

Thanks for this info. I mentioned some of this to the consultant, but he had no explanation or suggestion. That was before the current post-walk strain feeling. I will try the stoma nurse when I next see her. Thanks again for your help and taking the time to share. Jackie

I was told after age 30 it takes approximately one year for the body to heal from surgery. I accidentally had three surgeries last year. I wouldn't have had the first surgery (shoulder reconstruction) if I had known two months later they'd run out of options and the colon had to go. I had asked my GI doctor (I was under the surgeon's umbrella for about six months following the last surgery) why I only ever felt movement/pain on the right side. He said he wasn't alarmed by it. I'm also his non-textbook patient. I think I know the muscle you're talking about where the pain is if it's the same as mine. I did pelvic floor therapy and I was supposed to start PT for the abdominal muscles a month ago, but life's been busy. I know the NHS operates differently than private healthcare here; can you request a prescription for physical therapy? Anytime there is new pain, I don't think it's a bad idea to call whoever that would be for you, sounds like maybe a stoma nurse? And ask about it before your next scheduled appointment. Certain things like the angle I would bend at to unload the dishwasher or dryer got me in trouble and I would get a “let's not do that again” lecture. Lately, I haven't been able to lie on my right side and be comfortable. But I'm waiting that out since I never scheduled the PT 🙃

Sounds like your surgery was recent. Yes, in the early days, first year or so, it's normal (yes, take it easy, don't overdo things, little and often to build your strength and core muscles up). If longer than that, the doctor should be looking for reasons why it's happening. I get very similar problems now, over 30 years later, caused by a few problems, but doctors looked into it, so I know the reasons causing them. I see you're from the UK. I would have a word with your stoma nurse about it; they can put your mind at ease.

Words of Encouragement from Ostomy Advocates I Hollister

Hi Jackie, if the pain is persistent and not going away after a year, I would think a GI doctor would want to do a scope to see if there are any strictures. Due to Crohn's disease, I've had a few scopes into my stoma to monitor the scarring that causes strictures and blockages, and a few years ago I had to have resection surgery as the scarring caused a complete blockage.

Accidentally had 3 surgeries. That's a novel way of putting it! 🤩

Daniel

I did have discomfort under the rib cage like you describe. But that was due to having a tube to drain fluid from around my pancreas. So, not quite the same thing, and I was not getting much exercise for the 3 months it was in place.

Thanks, everyone. Sounds like PT might help. Will look into options.

It sure wasn't my plan for 2022 🤣🤣🤣