Struggling with Sleep and Diet Post-Ileostomy Reversal

I'm almost 2 weeks post ileostomy reversal and I cannot sleep at all. I'm going to the bathroom every hour or so, and it was like this when I had my high output ostomy. I'm guessing it's because my body is used to this routine; however, I was really looking forward to sleeping much more! Does anyone have advice for getting back in the habit of sleep? I barely slept 3 hours at a time when I had my ostomy, and it's seriously affected my mental health.

My food issues are that I just don't want to eat on this low residue, low fiber diet. I want food, but I don't want to poop anymore! Everything is acidic (heh) liquid and feels like I'm pooping glass, like when I did before getting the ileostomy in the first place! I'm feeling like I have buyer's remorse and shouldn't have gotten reversal surgery because this rectal pain is UNREAL. I'm going to see the doctor tomorrow about it. All the creams and everything don't work so well, but I can tell the bidet we just got today will work, but more so when that area is healed. I feel like I need to go back on oxy because that allowed me to walk without pain and also just feel better about having the reversal. My doctor says I have to go to the ER, but I am so not interested in going to the hospital again. I'm very frustrated at the moment and thought I was being patient; however, having excruciating pain from having Lyme in June has made my tolerance like at a 0 for me. I'm going to the ER today in a little bit, but I am so done and mentally exhausted. Tramadol and Tylenol just aren't working for pain.

Does anyone have advice?

G-Day Skeezal, You could try Temazepam to help you get some sleep. You have to see the doctor to get it; it's not over the counter. Also, if you don't get any satisfaction from the reversal, you can always go back to an ostomy. Regards, IGGIE

As I'm sitting here in the ER waiting on scan results, I can't help but think I will definitely be back with a bag at some point. I have to give it time, but the reason I got a bag in the first place is already coming back to haunt me. I will be asking about some sleep meds while I'm here! Thanks for your input, Iggie.

Skeezal

I understand the shards of glass pain; I had a colostomy reversal several years ago. Ask them to test stool, I had C. diff and it nearly killed me! I was going to the bathroom every 20-30 minutes. Despite that, it took me close to a year to feel normal, and I frequently thought about going back to colostomy. Make sure to rule out all problems before you just ship and go back.
There are medications to try to slow the GI tract, speak to your doctor. If they rule out C. diff, then those meds are indicated.

Good luck

Footie

Hi Skeezal! I'm really sorry you're going through this. I have very high output with my ileostomy as well. I usually take loperamide (prescription Imodium) before meals and before bed - it slows things down enough so I only need to empty once at night. Before my ostomy, I had the same issues, so I'd avoid eating a few hours before bed and also took the loperamide.
For your bum, I found one ointment that worked wonders for me called Calmoseptine. It's not always easy to find, but the cooling menthol in it makes the search worth it!

My Ostomy Journey: Jearlean | Hollister

I'm in the hospital currently and it turns out I have a GI infection, hemorrhoids, and fissures, and also my perianal Crohn's is really active again. I have had the ostomy gone for less than 2 weeks only to have all this happen. I got the ostomy to allow my rectal area to heal from fistulas and aggressive Crohn's, and now this. The rug has been pulled out from under me. This is very frustrating 😤. My body fails me so much. I am happy I can eat and don't have an NG tube, so silver lining... it just hurts my pooper like hell. Also, my guts are so painful where it reconnected. Thank goodness for Dilaudid as that's the only way to eat.

I'm sorry you're going through that. I hope you find some relief soon 🙏

I understand you don't want to eat a low residue low fiber diet, but unfortunately that's the first step to allow your gut to heal. I also hate this diet, but if it's saving me complications after reversal, I'll stick to it as long as my doctor indicates.

I hope you can resolve the other rising issues, sounds like you're having a really hard time.