Autistic daughter, post sigmoidectomy issues

Posted by minajo @minajo, Jun 28 12:49pm

Hi again everyone,
My nonverbal autistic daughter, epileptic also, had sigmoidectomy with anastomosis 10/24, ileus 12/24 2025 was a hard year recuperating with some seizures and constipation frequently needing lactulose
Now june she's having same issues with constipation, small seizures, does have stools but on miralax 2x day, but needing lactulose 3rd day..
Started estrogen as she's 50 now, being nonverbal can't really describe things so dr thought best,
So last Oct 2025 we went for CT scan and there was stool, gas but er only did Lactulose , sent her home
Here we are again, er is a traumatic place for her, 50 days in hospital 2024 just extremely hard for her so we avoid
May get scan at outside imaging but why would she get constipated so often, gets fiber, water tho not enough, healthy foods, some exercise if shell agree to walk
Her autism is profound so a lot of things can't be accomplished..
The one red flag I see is hard abdomen until lactulose given, gi Dr says okay but seems like a lot of laxatives
Any suggestions? Do I fear another impaction? She had 12" of colon removed so it would be above of course Thanks

Interested in more discussions like this? Go to the Digestive Health Support Group.

skim3737 | @skim3737 | Jun 29 11:14am

I'm so sorry that your daughter is going through this. Obstruction pain is the worst pain humanly possible. I noticed that you mentioned that she gets fiber and is being closely watched by a GI doctor but I'm wondering if she might have some tight junctions in her intestines that could be where food is getting caught up and causing blockage. I've been dealing with both small bowel obstructions and also had sigmoid and descending colon resection since 2002. Have you tried her on a low residue diet which limits fiber? I currently have multiple strictures and dilated loops in my small intestine but have been able to avoid the hospital since putting myself on low residue diet in 2022. I also take Motegrity twice a day to keep things moving in addition Colace 3 times a day and Iberogast (the original formula) 3 times a day. Just curious about whether or not low residue has been tried for your daughter.

Lisa Lucier, Moderator | @lisalucier | Jun 29 2:34pm

Hi, @minajo - sorry to hear about all you've faced with your daughter since her sigmoidectomy with anastomosis. Sounds like a lot, and I can imagine tough on you as the mom.

Especially since you are dealing with medical issues that span different specialties, wondering what her primary care doctor has advised to do with her seizures and constipation?

minajo | @minajo | Jun 30 10:58am

Thank you!
We have excellent PCP but as usual with complex patients, she refers to our neurologist and gastroenterologist
Tho she has dealt with the antipsychotic ordering in past and meds for constipation
I do get faster response from her than specialists tho.
As always when there is a serious issue we go to er but that is very traumatic as Lisa spent 50 days in hospital in 2024 and couple er visits last year, even those are extremely difficult.. profound autism is a condition onto itself!
Thank you for your support..