Urgent help ... sigmoid volvulus, disabled adult daughter (autism)

Hello again... So Lisa is about 2 1/2 weeks out of hospital after vulvolus repair and decompression.. she has had really difficult time adjusting mainly from her autism, trauma in hospital and is having " accidents", doesn't wish to go to br when asked, has 3 staff helping but she gets very aggressive etc
Having bms about every other day..
Not much progress with P T. trying to get her walking more..
As i looked over 198 pages 😳of hospital records i saw a " possible undiagnosed Hirsch sprungs disease, very uncommon in adults, then i saw connection with epilepsy ( which also was diagnosed at 32) and remember asking a dr in hospital if a trip to trauma center a few weeks before her admission for volvulus, for status epilepticus , 9 minutes seizure, then another in ambulance, a first for her, could be connected, he said yes . Something about intestinal nerves..
So more to digest ..
Im also on epilepsy support group having asked about Zonisamide which she took and seemed to cause 24# weight gain! Constipation? Causing impaction? Dr said no 😔Now on lamictal but do wonder if she's actually epileptic after all? Or her intestinal issue was triggering seizures?
Oh my shes complicated but has had so much over 48 years
Just seems more than ahe and i can bear anymore🥺
Care home wants to move her,after 15 years,only home she's ever known outside mine..my husband and i can't deal, he's 81, I'm 76
Really you'd think California so progressive in caring for disabled,not so .
So i need to post this to epilepsy group too how do i do that? . Thanks to all!!!

Minajo,
You really sound overwhelmed and Lisa too.
Why does the care home want to move Lisa?

Minajo, I hit the send button too soon.
Is Lisa's pain able to be controlled? You mentioned this as big concern for you.
When you say Lisa is getting more aggressive, is this a new problem? Does she express her aggressiveness at you or other people? Does she hurt herself during the aggression?
Goes I wish there was a magic pill to give you all the energy you need; and a magic pill that would give Lisa some relief so she could rest. Always thinking of you both. ShelleyW

Again my autistic nonverbal daughter back in hospital six weeks later, same, volvulus, confirmed on ct, decompression done yesterday,
Now resection needed or it will reoccur, and cause her severe pain
But she can't do ng tube, large quantity of liquid prep, started magnesium sulfate
I am petrifed of colostomy as she cant take care of herself but surgeon confident a anastomosis will work?
But she needs clean colon, how?
On clear liquids restrained so ahe won't pull rectal tube, ivs,
I am a desperate mom, am i doing right thing? But if no sugery, im putting her in pain
PLEASE ADVISE, SUPPORT
IM
Sincerely maureen

@minajo Oh Maureen, I am so sorry that you and Lisa are having to deal with this again so soon. She must be so upset to be back in the hospital.

I think that in many cases of anastomosis of the colon, two ends can be rejoined to bypass the bad section without requiring a colostomy. That sounds like what her doctor is suggesting too.

I think her fear is probably the most difficult for you, so anything that will prevent future hospitalizations is the right and best thing for you to do. I assume that her pain is very difficult for her to understand, leading to even more anxiety on her part, so whatever you can do to relieve it is the right move.

Is there anything the hospital can safely give her to ease her anxiety?

Maureen,
I answered your private message. How are you doing today? I didn't hear back from you. How is Lisa doing?
All the best, Shelley

Nonverbal autistic daughter had sigmoidectomy after volvulus 3x in six weeksShe had anastomosis which looks good on ct.. but 3rd day post op now, no stool smearing yet, got first Senokot 9 hrs ago, does it take longer ? No solid food for 10 days, just daysSurgeon said abdomen soft non distendedNot up much,Thank you to all my supporters

No solid food is a good indicator of no poop!

Minajo,
So glad you both are hanging in there. I don't know how long Senekot takes, I think all of the softner and laxatives act differently in everyone. Like ksdm said, no food for 10 days, probably not much poop to push out. If you are uncomfortable with the progress, you might ask for an X-ray of Lisa's abdomen. They can bring the X-ray to her room and know in minutes what is happening in her bowels; lots of air, free or pockets, where and how much fecal matter, is it semi solid or liquidy? You don't mention any bad pain or stressors for Lisa, I hope that it stays calm for both of you. Take good care of yourself too. You are a wonderful mom‼️ All good thoughts for you both. ShelleyW. ps i just wanted to let you know I'm going offline for now.

Hello . some of you know my disabled daughter, nonverbal autism, seizures had many g. i. issues leading to a sigmoidectomy with colorectal anastomosis last October, then a ileus December, that resolved but total 49 days in hospital 2024 and mom there every day.. so now at 3 1/2 mo. mark she's still going 4 days no bm after daily Miralax, Colace 2x daily then Lactulose and enema if those 3 don't work..
Also sometimes refusing to go to toilet and also some incontinence..
We are trying to prevent another ER trip as its a 911 call with Versed because of resistance, aggression..
Then many more drugs for IVS, ct scans etc then a long 12 hr wait for room and she's more agitated by then .
Her last scan, xray showed complete anastomosis, her labs good..
Diet is steamed veggies, soft foods, enough fiber, hydration, walking
So very hard to know whats wrong with her lack of communication, and her normal life of living in wonderful care home with 2:1 staff ratio could change as its a behavior, nor medical facility if her needs increase.
Also having some issues with Lamictal for her epilepsy
Any suggestions, ? Is it just healing of nerves in intestines? Can affect bladder function,?
Thank you to all who follow my special daughter, been a very long year
Sincerely Lisa's mom