Nighly pain, pressure, leaks, can't sleep -- what to do?

[parny]

Howdy! I've hit a rough patch lately and I'm looking for ideas and suggestions.

I'm having a lot of trouble sleeping at night due to intermittent abdominal pain, pressure around where my rectum used to be, poop leaks, urges to poop, etc. What might help?

I was diagnosed with rectal cancer in 2015 (and apparently unrelated Mantel Cell Lymphoma, but that's another story).

I had surgery to remove my rectum and a few inches of colon; the surgeon saved my anal sphincter, sewed my colon and the stub of my rectum together, and gave me an ileostomy to give my new connection a chance to heal. I got an infection where my rectum used to be and wound up with scarring that restricts my new plumbing. My surgeon got all of the tumor so I didn't have to do radiation or chemotherapy, yay!

I took a long time to heal, and used dilators to stretch my scar tissue.

We reversed my ileostomy in December 2016, and, well, my bowels have forgotten how pooping works. After a month or two of diarrhea and constipation, I started doing a daily enema to clean myself out.

This worked well for months. My normal routine is miralax once a day, fiber (psyllium) 3-4 times a day, and a warm water enema, usually in the evening. I've tried a number of different fibers and several different, ah, poop encouragers (senna, castor oil, ducosodium, vitamin b5, probiotics) and nothing has ever produced bowel movements: leakage, yes! After my enema I felt empty and usually had no leakage or poop urges for hours.

Recently my enemas haven't been working: not enough gunk comes out, I have pain and leaks and a strong sense of pressure for hours afterwards. Sometimes I have many many tiny poops. Nights are worst: I often can't sleep.

So I'm wondering what I can do to improve things. I've thought about trying to schedule my eating so my bowels aren't full at night, but I haven't figured out the timing of how long food takes to pass through me. I'd love to find something that reliably induces a bowel movement, and/or I'd love to figure out how to make my enemas more effective.

So that's my current tale of (modest) woe. Anyone got any ideas of things I could try that might help?

Thanks,

Philip

[CRguy]

Welcome to the forum and first let me say that you might want to run some of this by your GI doctor or GP.
There may be a medical issue ( more scarring, nerve issue, diverticula etc.) which may well benefit from a doctor's take on things.

You may also want to search here for posts by tammylayne as she has been very proactive in sharing her own experiences with daily enema including On surgeon's advice, going to try the - gulp - daily enema

what about trying the early morning enema instead of evening and still moderating the food intake late in the day ????
I think you'll find food "processing" time will be all over the map depending upon quantity, quality, liquid volumes, alcohol, caffeine etc. etc.

I know my own "schedule" runs thru a cycle about every 7-10 days where I literally clean out one day with maybe 8-12 sessions then nothing for the next day, then increasing until the next 7-10 days ... or so it seems.

As for purgatives I would consult your GI doctor maybe. There are things which will absolutely clean you out BUTT they should not be used regularly ( like the pre-colonoscopy meds )

Best wishes and please share any info which proves helpful to you.

CRguy

[tarheelmom]

You may want to consider pelvic floor physical therapy and biofeedback. They have really helped me.