Facing Another Ileostomy Surgery: Seeking Advice and Support

So I had a colostomy failed in 2023.

I had a colostomy reversed and an ileostomy formed in 2024.

The ileostomy retracted, so I had to have it refashioned in 2024.

So I went to see my consultant yesterday as my stoma nurse referred me back because my ileostomy has retracted again 9 months after surgery. He told me I need another surgery, but this time they're going to have to move my ileostomy since the refashioning didn't work. The only place he wants to put it is just below my rib cage, as I have previous scars from the colostomy. Has anyone got a stoma quite high up?

When is this gonna end? Fourth time lucky, maybe. 🥱

My ostomy is high up, nearly under my boob. It was relocated. It was 4 or so inches below that.

Oh gosh, sounds like you're going through the mill 😳.

Hope everything works out for you.

I had the opposite problem. Mine was too low. I had to have it relocated a few inches up. I guess it's less reliable going through the muscle, is what I was told. I always thought it was more stable going through the muscles. 🤷‍♂️

How is it there, my stoma nurse said it will take time getting used to.

Airport Security Tips Living with an Ostomy with April | Hollister

Thank you

That's higher than mine; mine is opposite where my navel once was! For myself, high up is the perfect position for me. I can wear anything; in my view, lower down, the waistband on clothing cuts the bag in half, so it needs to be emptied more.

Both of mine are high up about 2 inches above my belly button and just inside the rib cage.

I think this positioning is a little tougher for finding dresses, but it definitely makes wearing pants easier.

You'll need a cami or support belt. Underwear does not go high enough.

I don't really mind it being there because it doesn't make wearing pants hard. I can wear any pants, and the bag hangs on the outside of my pants. It did take a little getting used to. The wafer doesn't sit flat when I am sitting down, but it is not so far out that it causes a leak or anything. I use a 2-piece Hollister drainable pouch. It works well for where my stoma is located. I don't think a one-piece would work as well for me. I definitely wear the belt that is attached to the bag. Sometimes I have to pull the belt down because it tends to ride up a bit, but I can pull it down, and then it's fine.

Damn, you're not having a good run, girl. Last time I had this done, my surgeon asked me if I would consider removing my navel and placing the stoma there. I haven't heard this option ever mentioned by anyone when looking for placement.

G-Day ashtonilleo,

My ileostomy is about 3 inches above my belly button, and I asked for it to be there. If you wear trousers, it's better, and when driving, the seatbelt doesn't irritate it.

It's up to you, but I wouldn't dismiss it being higher.

Good luck IGGIE

I have a high one, due to transverse colostomy, and it's the only place I would want it. When standing or sitting, it never reaches my waist. When wearing a support belt, it has a tendency to slip up. It's worse with the one-inch wide belts sold by the ostomy vendors. I use a 2-inch wide Nu-Comfort support belt sold by Nu-Hope. Nu-Hope also sells a rub-on body adhesive you can rub on underneath your belt to keep it in place and not slipping. The support belts will go across your abdomen, not your waist. Comfizz is a company that has merchandise you may want to look into — I have one of their support vests that I wear anytime I am going out because it flattens my pouch and it still allows effluent to flow down. I am able to easily change my appliance while sitting.😉

— Proud owner of lifesaving ostomy, vintage 2023, V6 colostomy engine.

I'm sure it will be fourth time lucky! xx

My navel and appendix were removed during my surgery. I said it was done to prevent possible complications.

— Proud owner of lifesaving ostomy, vintage 2023, V6 colostomy engine.

Yes, everybody is different. My ileostomy is barely two fingers below my right ribs. I am prolapsed, which is the opposite. Had 3 surgeries in 16 months. Try a convex wafer? Yes, I have scars all over my belly from all the tubes they kept jabbing into me. Be patient and hang in there! Look in the mirror every day and remind yourself. “I'm good enough, I'm smart enough, and doggone it, people like me!" I refuse to beat myself up.' -Stuart Smalley. Do some fun stuff! Walk the woods by Beatrix Potter's Cottage. Stroll Hadrian's Wall. Eat a double clotted ice cream. So much beauty in GB, enjoy. Check out my "Fig Tree"

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So is that what you did then?

Since 2020, I have had a temporary ileostomy (placed on my left side), a permanent ostomy (placed on my right side), and 3 revisions for retractions, but I have never moved up higher. Sorry to hear, but I understand the frustration.

Praying for all ostomy friends.

I would get another opinion. I have had my stomach relocated twice, and both times they were under my belt. Yes, I had lots of scar tissue, but scar tissue was less on my right side than on my left side. I think they can use laser to fix areas too. I have had eight surgeries on my right side. I have had several failed BCIR surgeries, and the seventh surgery reverted back to an ileostomy but was a loop stoma that made consistent gas noises and was larger than my previous size of one inch. I was so disgusted with that surgery that I got the surgeon who did my BCIR to make a traditional smaller stoma. I haven't had any problems since that last surgery.

Hi V

No, I reasoned there would be an issue with that other thing that lives in the center of my legs, so to one side it went 😂

It came up in conversation with me because they would always use my navel for one of the keyholes, and it would get infected and be slow to heal, but I still have it.

Ash,

Would you consider getting a second opinion from another consultant? It might ease your mind.

Best of luck.

Don't knock the advantages of a high stoma placement. No interference with belts, pants, or seat belts. A relatively flat area for the wafer and one that is less impacted by weight gain/loss. Personally, I think it probably makes it easier and more comfortable to wear a support belt because the rib cage stabilizes the pressure from the belt.

I would maybe check with another surgeon's opinion. This is too much! I'm so sorry. I have had my ileostomy for almost 50 years. Once, I had to have a fistula repair, and I asked the surgeon to see if he could pull out the stoma and build it up more because it was retracting. Sometimes, my stoma still retracts and causes a blowout. I make sure I use a good Kayra seal around it. I sometimes also think it retracts more if I'm dehydrated. Especially just before changing, I will drink water. I use Eakin's Kayra Seals. I hope you are able to get it resolved for yourself.

Oh my goodness! That sounds very awkward. I have mine just below and to the right of my navel and in a very good position for wearing skirts and pants. I can almost get away with wearing hipster briefs too.

I would think the position would also make it awkward to drain the pouch in the toilet, especially when you are out?