Living with Constant Pain After Ileostomy

I had my ileostomy in March of 2024, and I have not had one day without abdominal pain. I will not go back to the surgeon (or resident, as I don't believe he did the surgery), and I don't think surgery was warranted. I have had abdominal scans, MRIs, and they can't find anything wrong with the surgery. When I shower (I also have a PICC line, as I have 4 leukemias as well), it takes me 1-1/2 hours. When I'm actually changing into a fresh stoma bag, I have to bend at the waist where the stoma is, and in the short time it takes to change it, I end up breathless and finished for the day. I've had 6 major abdominal surgeries over the years, and no doctor wants to touch me. I can't imagine living what life I have left, living like this. My diet consists of cereal, bagels, all meats, and either pasta, potato, or rice. Bananas are okay. No other fruits or any veggies. Some feedback, please. 😔

Have you been restricted to a low-residue diet by your doctor? Or is there another reason your diet is so restricted? I know ileostomies are a bit restricted, but this seems extreme.

In any case, you should not be in this much pain. If you don't want to go back to your surgeon, then seek out another opinion. It's possible that the scarring in your abdomen is the source of pain, so maybe it's not a problem with the surgery itself. But they need to do something to get the pain under control, whatever the source.

It is very challenging to live like you do. I get it. I am currently on daily TPN infusions, and I cart around the pump and infusion bag. My diet is very restricted, and I'm limited on the total I can eat. I have 2 ostomies (colostomy and urostomy) and a massive accordion drain in my pelvis. It takes me an hour and a half to shower, too. So when I say I get it, you can see that isn't just words.

What cancer taught me is that life must be lived looking forward. Find things you like to do. Get out of the house if you can, even if it's just to sit on the porch. Make plans. Expect to be there and expect to be happy. We can't control what happens to us, but we can control how we respond.

Why do you have to bend at the waist when changing your bag after showering? Why can't you eat other things? How can you not imagine living like this when you are? There's got to be something to be positive about to keep you going.

Living with severe pain isn't living; there's a distinct difference between being alive and living.

I wouldn't have thought cereal bagels would be a good idea. I was told to avoid cereals because of the high fiber content.

I was advised to have a low-residue diet and to slowly add foods in to see what affected the stoma or not. I've found I can't eat most Chinese food now, other than noodles, chicken, and sauce, but none of the vegetables like bean sprouts, etc.

Could the pain be very sore skin around the stoma? Maybe try sitting on the toilet all the way back to change the bag, so you don't have to be bent over to do it.

I would maybe try to get a different opinion on the scans, etc. Could they have missed a hernia from bending over to change the bag?

All things to consider, but there's no reason to be putting up with severe pain. I would suggest finding a new doctor who listens to your concerns and not about their surgery success records…

I've had a colostomy and been resected. An ostomy is totally different. Every six hours, your body empties. You have to be careful of blockages. If I eat anything out of the ordinary, I get sick and the bag contents become like water. I've tried puréed carrots and French-style green beans. Sometimes they're okay. My stomach constantly hurts before, during, and after eating. If I have to pee, I generally pee, then empty, then pee again. I can't go out for long periods of time because I have to be near a bathroom with toilet paper and soap. I'm also missing part of my sigmoid colon from a colostomy 20 years ago. And because of the placement of the stoma and bag, right at my waist, I can't bend or sit upright. After a shower, I sometimes have to go on oxygen. 😳 The only time I can push through the pain is when I play with my grandson, who is 6. But my daughter rarely lets me see him. 😔😢

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

I have a herniated stoma! I can also eat Chinese food. Weird, right? But nothing hard. I eat Cheerios and a bagel with cream cheese every single morning for breakfast. I'm sort of allergic to eggs, milk, wheat, and dairy. I buy gluten-free, lactose-free products. Plus, I'm on meds (one week/month of chemo).

Sorry, the post got sent before I was finished. If I tried to change while sitting on the toilet, it would be extremely painful as I would have to lean forward to see what I was doing and thus use abdominal muscles. I also can only use one type of ostomy bag. I tried another, and it burst right down my pants to my socks. 😔😔 I've tried so many doctors but haven't found the right one for leukemias or ostomy. Ostomy is the hardest to find.

And I can't find a doctor who understands ostomies! I've been to two gastro docs and a colon-rectal specialist. No one understands or knows. The colon-rectal doc said I could eat anything. Even starting small, I got sick to my stomach on most of the foods. However, I can eat shrimp and lobster. It's bizarre the foods I can and can't eat. Maybe it has to do with food allergies, chemo, and meds. It's just boring, and I don't feel like eating... however, I feel like it is getting worse, and doctors won't even recommend another doctor. 😳😳😳😳

Agree with your response. She may have adhesions from abdominal surgeries or a small partial obstruction. Best to see a new surgeon.

Look for an advocacy group that has a physician directory. Perhaps UOAA has one? (I don't know.) That will get you doctors' names that know about ostomies.

I used a similar approach to finding my surgeon but did it on a colorectal cancer site.

Heck, if UOAA doesn't pan out, look for doctors who deal with colorectal cancer on cancer sites. There are plenty of ostomies (sometimes temporary) that come out of those surgeries. You live in NY; I am confident there are qualified doctors there... the trick may be finding them.

You have to be your own advocate, fight for yourself because you are worth it. I'm sorry to hear you're going through this. Susan and others are right in that you need to find another surgeon to address your pain.

Looks like Brightside had the same idea as me... I'm the Queen of abdominal surgeries and pain over the last 5 years... I don't think it's your ostomy causing the pain (again, only my opinion)... If you've had that many surgeries... My feeling is all the scar tissue may be your problem... I was cut in the same spot twice... The second time left a larger scar... I also have scar tissue from having 13 JP drains in the last 5 years along with fistula scar tissue... scars on my bile duct and pancreas duct from multiple stents... I can eat most things... other than rich or extremely fatty foods... veggies I have to be careful with only if they're raw... popcorn is fine, which is weird because you'd think it would be with all my issues... the only thing I'm restricted to is fiber... low fiber is okay, but they say to eat it to thicken output... NOPE!!!... I'm curious if maybe you might need enzymes to help digest your food... I take them; otherwise, I 🤮 everything I eat... Also, your meds can cause a problem... for a while, I was on an antibiotic, and I couldn't eat cheese and a few other things... As far as changing your bag... can you or have you tried sitting on a chair or couch and laying at an angle where it's comfortable and still be able to see what you're doing while having some support for your back?.... And if I am right or partly right about the abdominal pain... Hate to say... you will have no luck finding help... All I was given was tramadol, and it doesn't work, so after about 3 years asking my GP for help and my GI doctor... I finally got a referral to a pain management doctor, and they refused to see me and said they have nothing for abdominal pain... GO to my GI doctor... so all that was recommended was to take Tylenol with the tramadol... IT SUCKS trying to figure all this out on your own when the doctors are no help... but I know there's gotta be something somebody can do... OH, and I have Chronic Pancreatitis, so... you're really going to tell me there's no help with that either out there????... Good luck... I hope you can find some kind of relief... 'cause I know how you feel, trust me....🫂

I change my bag lying down, and in order to see what I am doing, I have to bend at the waist. I can't eat other things because I get severe runs (in the bag) and cramping. I have problems with things that have sugar in them! And I will go all day. I have lived with various aggressive cancers starting in 2003, each one more limiting. Except for the first one in 2003 (breast), the surgeries were all screwed up and left me with such side effects that I didn't want to continue living. Mostly because the surgeon didn't do the thyroid cancer surgery; the resident did it. 😡 I've had a nicked vocal cord nerve that made me sound like Minnie Mouse for months. My boss actually took the phone off my desk! 😳😟 I STILL suffer when swallowing. I've finally stopped the projectile vomiting and throat spasms I had for years, at least for now. I've walked around with a wound vac and a colostomy, and I was fine. I wasn't in pain or bloated or gaining weight. I was diagnosed when my bowel burst with CLL leukemia. I was laughing at the (can't remember the kind of specialist who deals with special cancers) because he was not nice and threw me off balance when he flew into my room to tell me I had cancer while my care group was spending an hour figuring out how to tell me, but I knew it was still okay because my sister had it too, so I laughed in his face because he was trying to hurt me mentally. Then I had a car accident because my blood sodium levels were so low, and NONE of my doctors saw it (because I don't think they really read the labs when they come back), so I had to have a car accident and go to the hospital and have labs there before anyone knew. 😔😔 I started falling in December, and in January, I had a bone marrow biopsy where they found a VERY aggressive leukemia and two rare aggressive leukemias that have no cure. I am now losing my memory and losing words. My daughter won't let me see my grandson, who is six and who, because they were police officers and worked overlapping shift work, I babysat overnight for his first five years of life. She didn't even tell him I was in the hospital! He thinks HE did something wrong when he can't see me. 😢😢 When I had COVID for three weeks, he wasn't told, and he asked me why I hadn't picked him up, and I realized he thought I didn't want to see him, and I told him I loved him so much that there would never come a time when I didn't love him. Ever. And he threw himself into my arms, and we held each other tight, like when I came home after five months in Sloan Kettering—bald. He went into a room that could see the driveway so he could process me before I came in, and he saw I was the same person, only without hair. And we looked at each other. Then our arms went out into hugs, and we met, and we were squeezing each other so hard. And I just kept saying how much I loved him. HE got me through my hospital stay with no friends visiting and my poor husband having to drive 100 miles each way two days a week, who saved my life when I almost died, and they called him to come in the wee hours as my health proxy because I was cold and gray with a BP of 65/45. And he said, "Give her 24 hours." And they did. And I survived. I was also conscious of a lot of things while I was dying. Imagine having three showers in five months, never brushing your teeth, or rarely having your sheets changed. I missed three seasons, major holidays, and birthdays. You'd think I would at least get a card. I get no visitors at home. People are uncomfortable. Even when I go out in public, I'm tired of people staring at me (I have hair now) because they want to see what a leukemia patient looks like. I'm afraid if I stumble, people will think I'm drunk. I live in a small town. Now, having an ostomy, I can't go a lot of places because I need to have a bathroom nearby all the time. I can't walk without getting out of breath. Oh, I also have embolisms deep in my lung next to my major heart artery. I can't lift. I can't stand for long periods of time because I have a crushed L1 vertebra. I can't be in the sun due to medication sensitivity. I have to time where the sun will be in my backyard so I know where to sit. My husband and I set up a beautiful sanctuary for birds, deer, and hummingbirds. It's beautiful. I'd rather stay in and read.

My grandson was my reason for living, and my daughter has kept him away from me when we still play so well and have such fun because we LOVE each other.

Oh, I know I should be grateful to be alive, but I am not living. And it's getting worse. And yes, there are most definitely people worse off. But most of them have great support, and that's the key. I don't, and I simply don't care anymore.
Any other questions? 😔😟😢😣😫

Sorry to say there isn't any help. I had a hernia doctor who was the best. When COVID came, they made him a team leader. I read his Facebook page 😢. It was awful. They took a caring, compassionate young doctor and changed him. He retired a few years later. He was destroyed by what he saw and experienced. He was a good doctor. But no. I have found doctors, especially in group practices, have to actually limit their visits to 15 minutes!! Really?? I've heard their phone and watch alarms go off. It probably is scar tissue. After thyroid surgery, I was told my neck was filled with it. And? Can we do anything? No, because it just adds more scar tissue.
Question: Are you able to enjoy the things you can't do anymore, which in my case is almost everything except reading? I'm not suicidal - depressed? Probably. Talk to a local therapist? No, because they actually have parties and talk about their patients. And they're all friends on Facebook 😳😳. I've tried online therapists. I left one guy's eyes spinning in his head and told him if he couldn't handle one hour of talking with me, it wouldn't work. Lol. I wasn't always like this. I think I'm going crazy.

Change your bag while sitting or standing and use a mirror.

Yeah, you have had a tough road. But it is your choice to be defined by the negatives or the positives. Look for and focus on the positives.

I can't even find a doctor to help me with my ostomy. All they want to do is have a peek at it. It's really disgusting, especially in the hospital. If you can't help, you don't deserve a "look." I had to teach two nurses how to clean it! Only two nurses responded to my question of who wanted to learn how to do it. And the response from the two nurses: that's not so bad at all. No, it isn't. Though it's easier when it's not in you, I was proud of them for stepping up.

My positive is my grandson, and it seems I'm not allowed to see him. I can't sit or stand because I have to bend to see him. I have a crushed lumbar vertebra that hurts like hell, even when sitting. Believe me, I've tried a lot of things. I just can't find the right one to make me happy. He's been taken away from me by my own daughter, who has benefited her whole life from things my husband and I have done for her. This includes giving up our own lives. Who knew retirement was going to be a life of sickness and ill health?

No ... You're not going crazy... I understand how it is.... The only reason why I'm like this is because I went in for gallstones and the doctor didn't take the time to look at my CT to see a huge stone so he could break it down first before doing surgery and the M....ker nicked my pancreas... and since then my whole digestive system is destroyed... I have diabetes.. CKD.. chronic pancreatitis.. all the scar tissue.... malnourished.. and a front butt.... take care of yourself.. lol as best as you can!!!

Some people can't do that; their daily focus is all about negativity, and unless they want to change their minds, it's pointless to try to change it for them.

I should listen to you more often.

Alex,

It's not that people want to live in negativity; severe pain every single day makes it impossible to be positive, even if you wanted to be…

You can only be positive when there's a solution or the pain is resolved…

Clearly, the lady is seeking help and advice, which is a form of positivity. Again, just saying "be positive" doesn't help! It might work for you, yes, but not everyone is the same…

Oh, some do live in negativity, and it doesn't even have to deal with pain or sickness (or even in reference to the OP); it's just the way some people are.

Amen!

I have an ileostomy and had surgery for Crohn's total proctocolectomy without end. Usually, you only have your ileum, which is your small intestine, and only restrictions on what not to eat. Well, everyone is different in what they can digest and their illness.

Great advice! I love how you help people like us. Same here, restricted on my food at the minute and know the struggle of being in pain all the time. Big hugs, and yes, do things that will make you happy no matter what it is. xxx