Elderly mother's constant stool leakage

My mother had a colectomy, ileostomy and takedown to J pouch almost 40 years ago. She has done very well with her pouch for 39 of those 40 years. She is now 89. We are dealing with a tough, tough issue right now.

Her entire inner buttocks have become open wounds. She is in assisted living (moving to memory care tomorrow) and they are trying to help her with the wound care regimen, but they get her all set up for a two-hour treatment to address the wounds and she leaks stool onto the skin and cream covering the wounds.

She did just come back positive for norovirus, but all other pathogens were ruled out. She is on imodium, 2 tabs every 6 hours. She was put on Flagyl about 15 days ago and I believe that has run its course. The GI we saw talked about rifaximin, or potentially Cipro as a next step. We briefly discussed going back to ileostomy, but I'm not sure she could tolerate the procedure. She has no cardiac issues or vascular issues, no high blood pressure, but . . .
The nurse at the assisted living talked about a anal plug that another client she had cared for at the facility had some success with. She tried to get outside care approved with my mother's insurance, but this wound is not considered worthy of insurance coverage. She had a fall about a month ago and I tried to get them to throw her in the hospital and get this wound taken care of, but the doctor said Medicare would never cover it. She had a head contusion but that was not enough to put her in the hospital either.

I am grabbing at strings here, hoping someone might have a lifeline for me. I would appreciate all suggestions you might have.

Mitz (UC diagnosed 20 years ago) for my mom, Arline

Thanks, Old Hat.

I helped her move today and twice cleaned her up. It's even worse than it was last week at the wound care visit. She leaks stool just about all the time. You get her cleaned up and apply the treatment cream, put the chux around her, put her covers around her and she says, "I'm leaking."

It's just awful. We HAVE TO STOP THE DIARRHEA or nothing will change, nothing will heal.

I appreciate the support and the idea very much. Thanks again.

Oh, man, Old Hat. I am so not ready for the hospice discussion. So not ready.

I gotta go find some Kleenex.

I would consider calling an ambulance to take her to the emergency room. From there it’s easier to admit to hospital. Lie if you have to and say she’s having chest pains. They have to take her then.

Thank you, everyone, so much for your suggestions and your support. The GI has prescribed rifaximin. I hope it arrives today and I hope helps. Also, we have scheduled a flex sig for next week. If they see inflammation, the doc said she will prescribe steroids. A couple of years ago, she opted out of any more scopes, but we have got to get this issue under control. And I understand that steroids are heavy duty medicine, but I wish she'd give it a try without having to go through the flex sig, just because of the stress of the prep and the test. I've asked for a referral to a colorectal surgeon to at least discuss the possibility of going back to wearing an appliance, and I think an appointment that will happen, too.

I realize, too, now, that hospice doesn't mean death is imminent. I'm sorry I over-reacted, Old Hat. She really could have a quality of life left for her if we could get this darn diarrhea to stop leaking 24/7 from her. Oh, and if we could get rid of COVID, but there's not a lot any of us can do about that, is there.

As far as an ambulance call to throw her in the hospital, we had her AT THE EMERGENCY room last month for a fall and head injury, and I was so hopeful the doc would throw her in the hospital, now that she was there, to treat the wound but she said she couldn't do that, Medicare would not pay for it because it did not require hospitalization and her head injury was not significant enough, either, to require hospitalization, even though that was what we came there for.

I like the suggestion to contact my Senator, Amy Klobuchar, if I hit brick walls along the way.

I do feel confident that she will get more hands-on care where she is at now, memory care, than she did in AL. The nurse I dealt with yesterday ordered every two hours toileting. So at least every two hours, she will be cleaned again, even if that only lasts for a couple of minutes.

No one should have to live this way. My poor mom. I realize there are worse things, like necrotizing fasciitis or cancers or any number of other things, but this is, personally, the most disturbing health issue I have had to deal with. The wound is horrific.

Thanks again, everyone.

Post Edited (MitzMN) : 10/8/2020 11:16:27 AM (GMT-6)

Update on my mom.

She had a flex sig yesterday. Waiting for biopsies, but it appears she has no gross abnormalities on initial assessment. She tolerated the procedure very well.

She has cleared the norovirus. Unfortunately, the stool test to check for that clearance now shows she has clostridium difficile. Her GP has prescribed vancomycin. Hopefully, she will get rid of that easier than I did when I had it about 20 years ago. So frustrating that we didn't just get an all clear yesterday.

The GI sent a fax to insurance trying to get coverage for the rifaximin. That went out on Monday. Evidently, they have 30 days to respond. Wish that would go a little faster, but it is what it is.

On the wound front, the memory care facility has done an amazing job with her wounds. The nurses yesterday gasped when they saw it, and the report of the flex sig called it "severe," and it is, but the wounds are so much smaller. I would say they were about three or even four inches wide and running about five inches, and now they are about two or three inches wide and about three inches long. Great progress.

We have been referred for a consult with a colorectal surgeon. I am at least going to make the appointment and discuss whether this is an option and if it can be done arthroscopically.

Thanks again for all of your supportive posts. I really appreciate it.

Post Edited (MitzMN) : 10/15/2020 6:46:26 AM (GMT-6)

Thanks, Susie. I didn't think about the anesthesiologist not agreeing to put her under. That makes sense.

Appreciate your response.

Well, the insurance denied the Rifaximin, and now that she's on the vanco, she probably could not take it anyway. We still are struggling with the diarrhea. She is getting some fiber powder twice a day.

I read the biopsies report yesterday and it appears everything is basically normal. Nothing too concerning.

On your excellent advice, I purchased some of the Florastor and got her GI to write an order for it -- I requested 60 days but she would only do 30 -- so as soon as that arrives, she will start to get that. It is a blessing that they are now doing her meds at memory care, but stopping and starting things is never easy. I got some Florastor for myself, too. I used to take probiotics but stopped many years ago when I decided taking a huge handful of pills every day was ridiculous.

They have opened up to in-person visits here in Minnesota, so my older brother is seeing her on Monday. I'll get over there today or tomorrow to check on her. She is sleeping all the time and confusing dreams with reality, but I guess that comes with the territory. She seems in good enough spirits, although she talked to me on Thursday about her funeral and her death. That was surprising. I assured her that she is quite healthy except for this wound and the diarrhea and she had some good years left when we get that under control. She claimed to not be depressed.

Thanks, everyone. It's so nice to talk to people who understand what we are going through here. Helps a lot.

Sure. I agree. If she wants to talk about it, I would let her and would encourage her. I did talk to her for probably 10 minutes without a lot of specificity. We talked about cremation and burial. We did not talk about specifically a funeral as far as the songs she wanted. Unfortunately, in the age of COVID, I'm not sure having a large funeral is a good idea. I certainly did not discourage her from talking about it, but I did tell her, to reassure her, that despite this diarrhea and wound problem, she is pretty darn healthy and does not appear to be on the doorstep of her departure from this world.

Thanks for the good advice.

I would like to thank everyone for their help with my mom's situation. The memory care she moved to, the staff got her completely healed in about four weeks. It was amazing!

Unfortunately, the day after they stopped treatments because she now had fully intact skin, she passed away a little bit unexpectedly. I feel so fortunate that I got to spend a lot of time with her and had a physical relationship with her. The last time I saw her, two days before she died, she and I put a bulletin board of pictures together so it would be easier for her to enjoy seeing her pictures every day. After we finished that task, I helped her to the bathroom, then crawled on her bed with her to scratch her itchy back and put lotion on her back. The winter caused her such dry skin that itched. That tactile relationship, that face-to-face relationship, sustains me today, even as tears flow down my cheeks. My poor brothers missed out on that for the last 9 months or so of her life.

She will be buried on Friday. I will miss her all the remaining days of my life. But I will never forget her, nor will I forget the kindness of the members here trying to help me help her.

Thanks again.

Post Edited (MitzMN) : 11/14/2020 7:53:26 AM (GMT-7)

Mitz, I am so sorry to read about your mom, you & your family have my deepest condolences. Your time with your mom will be your strength, it was for me. Yes it was precious time with her & I am so glad that you had time with your mom.

As for the music & funeral, try to think about your mom's personality before her health started declining. Think about those times & see if you can draw off of that. With my dad that's what we did, my mom on the other hand had discussed things with me so I had a decent idea on her likes & dislikes.

I lost both parents within 18 months of each other, one unexpected & the other we knew. I grieved differently with both, grief has many faces.

Take care.

Mitz...heartbreaking to read of your mother's health crisis and unexpected death. I would imagine her to have been extremely comforted by your vigilant and loving physical care.

I hope her funeral service will be acceptable given the Covid constraints. Is it possible that once Covid has acquiesced, you could consider a remembrance service/mass then?

Hugs,
Heather

Wow, good to hear that Imuran has controlled your UC for such a loooooong time. Hope the insurance change will help to add mesalamine added to the mix...Apriso or Pentasa might be an option if Asacol/Delzicol isn't.

Please keep us updated on how you are doing.

q