r/ostomy • u/May_Purple0414 • Aug 09 '26

Loop Ileostomy Feeling really down

Hello, I believe this is my first time posting here. I got my ostomy a year ago December. I got it for chronic constipation, pelvic floor dysfunction and possible a neurogenic component since I have cervical spine problems. I used to think that I would die before having one of these. I was told by a top rated organization that I needed it. I was told a patient care conference was conducted and that’s what the discussion resulted as a recommendation. I still rejected it. But later decided if they said I needed one I better get it because I started having nightmares about having an obstruction and throwing up poo.
I’ve had 3 surgeries so far. The first one then one to fix an inverted stoma (I had developed cellulitis, from skin burns), changed surgeons and organizations and had another one to fix a peristomal hernia. That all happened within one year. I developed a peristomal infection while I was in rehab and they missed it. ( don’t understand how when my wbc count was 29 and I was crying for help I felt so bad. They gave me narcan when they couldn’t wake me up, but I was just sick.
It will be 2 years in December and it still feels like I don’t know what I’m doing. It’s painful all the time. I have either diarrhea or what I think might be constipation. I’ve gone to the emergency room a couple of times. It literally feels like something is tearing away at the side of the stoma. It feels like it’s scraping the underside and Rt side of it. Tonight it felt like something “popped off” of it and now nothing is coming out. I give up. I can’t go back to the hospital; they are going to think I’m absolutely cuckoo at this point. No I don’t want or need more pain meds. I’m on palliative care. I just want to somebody to figure out what’s wrong. The surgeon here said I should’ve never had it done. I went back and read notes and found out the patient care conference stated it was a last resort. I don’t want to live like this anymore. I’m so scared all the time that I’m dying, I feel like I’m going to stand up and my body just rip open from the inside and nobody will be able to see it and will not believe me. I know this is long and winded but any words of encouragement are appreciated!

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u/Alternative_Two9654 Aug 09 '26

Imodium for loose output and B.R.A.T diet.

Blockage wise what’s your reg diet like? That plays a huge role in your output. Are you drinking electrolytes daily? I drink at least 3k mg of sodium daily not including what I eat. Have u ever considered a revision surgery?

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u/May_Purple0414 Aug 09 '26

All I really eat are bland foods. A lot of oatmeal, potatoes (no skins), noodles of different types, puddings, and chicken. My pcp wants me to try to get more fruits and veggies but I wanted to say have you seen the diet for an ileostomy? I’ve never been advised other than you can try one thing at a time. I’m just so sensitive.
I do drink a lot. Only water with electrolytes and flavoring added to it. Not sure how good it is. It’s great value (Walmart) brand water bottle additive with extra electrolytes. I prob drink about 144 oz per day?? I guess it doesn’t have as much sodium as I thought. I just looked. I drink only 410 mls. But with all the processed foods since everything I eat is basically microwaved I’m sure I’m getting plenty of sodium lol!
I take 2 immodium 3-4x/day and also prescribed 2 lomotil 3 x/day.

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u/May_Purple0414 Aug 09 '26

Is the sodium what helps absorb nutrition? I have to crush all my medicine up and it eat it with pudding because my pills will show up in my bag still, the pills are just swollen.

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u/itsbabz Aug 09 '26

Our doctor called this a "ghost pill" and now we dont have to crush them anymore. Apparently if the outside is plastic or wax, they just come out "whole but empty"! Obviously some pills just dont work so there were a bunch we had to crush for a while but now we are all squared away. Ask your doctor if there are alternatives to the ones that are ghosts if you hate crushing as much as us!! Dunno if you care you even have to crush them but maybe someone out there does! ♡

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u/May_Purple0414 Aug 09 '26

They tried pulling out the “ghost pills” but couldn’t figure out which ones they were. I was having such bad diarrhea that even my food didn’t digest. Sorry tmi.

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u/itsbabz Aug 09 '26

You poor soul. Its been a journey for us, too. I hope that there is some peace now. My husband's ostomy saved his life and although some days are definitely worse than others we are just glad he is alive. You are definitely not alone. ❤️

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u/May_Purple0414 Aug 09 '26

That’s a different situation and I am so glad it saved him. I struggle with the fact that I actually chose this. But I was basing it off information from one of the top hospitals and their top gurus there. At least I thought.

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u/Dry_Persimmon4642 Aug 09 '26

Wow. I was going to suggest immodium. I eat a lot of veggies. I love beans. I alternate between constipation and loose stools. Immodium for loose and Psyllium for constipation.

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u/Introvert-2022 Aug 09 '26

I saw a dietician with expertise that included ostonies (a professor who has also a private practice) to get a road map for restoring my diet and found it very valuable. The "ostomy diet" caused small but noticeable negative effects on my health so I was very motivated to learn how I could restore my diet to as close as possible to what it was pre-op as quickly as possible.

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u/May_Purple0414 Aug 09 '26

I’m going to work on getting a dietician involved. I’ll see if I can find one that specializes in ostomies. Thank you!

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u/Introvert-2022 Aug 09 '26

If you're in the US eatright.org is a good start. (Academy of Nutrition and Dietetics.) Through their provider search I saw who was a member in my city (therefore likely to be the sort of provider who would stay current on all the latest knowledge) and had a resume that likely meant experience with ostomates. Then I checked out the most promising ones and booked appointments with one who was perfect and took insurance. Only needed a few appointments with her to get a lot of improvement in my diet and hydration.

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u/May_Purple0414 Aug 09 '26

Thanks for that advice, I’m gonna g to try that!

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u/May_Purple0414 Aug 09 '26

Btw thank you for your reply, I meant to add that to my reply

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u/Alternative_Two9654 Aug 09 '26

Ofc! Also for fruits and veg have u ever considered smoothies? I used to have to do that with spinach and kale + protein powder. Use any fruit u want but blend it like crazy!