High Ileostomy Episodes

[Doc_Has]

Hi-
I am new to this discussion. I care for my mom who has had an ileostomy since 2016. She received the ileostomy because her large colon essentially died, presumably because of low blood flow during another surgery. She has since had 2 surgeries to remove adhesions leading to complete bowel blockages, the most recent of which was in Oct 2023. She is 5'1" and 128 lbs.
Starting in Dec 2022, she started having week-long episodes of incredibly high ileostomy output, accompanied by nausea and vomiting. She will often lose 2-3.5L/day through her ileostomy, and cannot keep herself adequately hydrated even drinking copious amounts of Oral Rehydration Solutions (Drip Drop). Last year alone she was hospitalized 6 times with acute kidney injuries due to these episodes for IV rehydration. She now has a PICC line so I can rehydrate via IV her at home. The last of these episodes resulted in her blood Na dropping to 112, which is not a level that can sustain life for long, so she was admitted into the ICU as "very critical." She does not have short bowel. She is currently on antibiotics for possible bacterial overload, and the last time she took antibiotics for possible bacterial overload she went 6 months episode free. Her diet is incredibly ileostomy friendly. Imodium does not seem to have any impact on the watery stools and Lomotil causes her to hallucinate.
I know she cannot be the only person having such experiences. I would love to hear what other people have experienced and done when having such episodes.
Thank you in advance for any input,
Karen

[ron in mich.]

Hi Karen have you tried adding fiber to your moms diet, also i try to snack on foods that thicken output like applesauce, peanut butter, oatmeal cookies. good luck

[Shamrock4806]

She may be diabetic, have her blood tested.

I've noticed high output during IV use.

Brown rice mixed with food will thicken output and staying away from coffee, salads, greens etc. seems to work for me.

Since her health is complicated you need to get her assistance. Especially the nausea and vomiting is a bad sign, for me it's cancer.

[Diane C]

Dear Doc_Has,

If still reading, aside from the food thickeners, you might ask the doctor about these two meds to lessen output -- especially the first: diphenoxylate atropine instead of Imodium for diarrhea. Possibly an Rx off label med for diarrhea: Cholestyramine.

See my posts under Leakage.

Good luck with your mom!