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Urgent help.. Sigmoid Volvolus, disabled adult daughter (autism)
Digestive Health | Last Active: Sep 4 8:41pm | Replies (36)Comment receiving replies
To my wonderful supporters here
My nonverbal autistic, epileptic sweet 48 yr old who underwent procedure for sigmoid volvulus and decompression Aug 28 , discharged sept 5 after good xray showing no twisted colon, transverse empty of stool, is once again doing some vomiting, tho stools are large, formed mostly, with one 100 mg Colace, fiber foods but is still very unsteady for walking..
She started having dry heaves yesterday after refusing lunch, then couldn't keep broth, applesauce down.. home health RN checked her, no distention, and did okay with severa crackers, jello
She was so traumatized by 10 days in hospital she won't lie in bed , maybe thinks another IV going in, monster xray machine on top of her??
Is not herself at all, she has 2:1 ratio in her carehome of 15 years but now if readmitted to hospital) if vomiting returns) she'll be so combative, AUTISM 🫤, she'll need sedation
But HUGE decision, i opted to hold off resection knowing she might have colostomy, need nursing home, etc and surgeon said another decompression could be done but its only 2 weeks! Could her colon have twisted again so soon? Even without ( prayers here) colostomy, which she would pull off, took 3 ivs out, rectal tube) she'll still need long term placement new, no more day program she lives
I can't have her in pain, what to do??
Any and all input sooo appreciated!
Lisa's mom
Replies to "To my wonderful supporters here My nonverbal autistic, epileptic sweet 48 yr old who underwent procedure..."
Minajo, Lisa's Wonderful MOM,
I know that you have the entire Mayo forum wishing only the very very best for you and for Lisa. This is the first time I saw you use her name 🥰
You made the very hard decision last time and it seems like you were definitely right.
Only people who have been in your position, for 48 years, have any real idea of what the hell both of you have been through.
I have not been in your shoes, your strength and love is obviously deep and unconditional for your precious daughter, Lisa. You know what Lisa's quality of life has been and will be based on decisions that have to be made. Your own quality of life is affected greatly too.
You have already made the decision that you want to keep Lisa out of pain.
You have already seen how frightened she was/is. How the tubes, needles, X-rays, even the bed, are going from frightening to terrifying.
I saw this with my mother-in-law, when she needed to move in with us. We had a comfortable adjustable bed for her, but she would never use it. She had heart and lung issues, at age 80, that is reasonable. She feared if she layed down, she would definitely die. So, she slept in her recliner for two years and died peacefully in her chair, and not in a hospital. We made that promise to her that she would stay with us at home. We were blessed to have been able to keep our promise to her.
Please, please, remember to take some time for yourself to rest also. Lisa loves you and she would want you to feel comfortable too. 🩵🫂🩵🫂 ShelleyW
Oh thank you so much for those kind, supportive words.. wish i could give you a hug!
I'm not quite sure i made correct decision to put off the inevitable, majority of drs have said sigmoid volvulus can/ will reoccur.. i know if the vomiting returns, she refuses to eat, distention again, its ER time.. then decompression again or surgery, of course hoping for no colostomy but🥺even then major abdominal surgery.. weeks in a skilled nursing , then?
Knowing Lisa's aversion to needles, bandaids even, beds😳.. lots of drugs to add to her already overloaded body..
So I've done research, looking at all scenarios, hmm, none seem remotely good.. just pray this one decompression is a miracle fix?? Im going with that..
Thank you to all who give me support, advice..
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I can't comment much on this and am so sorry this is going on. Just want to say that in my experience with my mother, colostomy did not require a nursing home. She was able to stay in the assisted living residence with minimal care We used a disposable bag system. Every three days I changed the barrier to which the bag attaches, and during COVID I hired a nurse for an affordable rate. The disposable bags are very easy and you just clean the stoma before putting a new one on. More than you want to know but hope it helps allay at least that concern.