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Urgent help.. Sigmoid Volvolus, disabled adult daughter (autism)
Nonverbal, 48 yr daughter hospitalized with sigmoid volvolus yesterday, a decompression procedure done, now surgeons want to do resection..
She is having behaviors in hospital but told 90% chance if volvolus returning if i refuse surgery
She cannot live with colostomy but drs think anastomosis can be done hopefully
She's getting Versed,Ativan,Morphine,has pulled 3 ivs,rectal tube out..
If i refuse her surgery,im conservator,might perforate,needs emergency surgery and might not make it
I need to make decision for her today!!!!
PLEASE ADVISE
Will need 24/7 care, 1:1 aide at skilled nursing,
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becsbuddy,
I 🩵the last sentence. When we are overwhelmed, it's hard to even know what we need, want, have. Your simple question speaks volumes 👍ShelleyW
Shelley,
You do talk to God! That's great! Then, you don't need my advice. You are definitely doing the right thing! Good for you!
I understand how you feel about not having your prayers answered.......yet. I went through a similar situation with two years of severe migraine headaches. My mom and I were praying continually but God was not answering our prayers. I was down to 100 lbs. living on the strong pain pills the doctor gave me, ending up in the emergency room once a month for a shot of Demorol. Got a new doctor who wouldn't give me anymore pain pills. He said I was addicted to them. I wasn't. I bought a large bottle of wine and told God I would become a wino just to cope with the severe pain of the migraines! I went home and never had another migraine! I was so "addicted" to my last 3 pain pills that I finally threw them out. Keep praying and having faith and talking to God. He will answer your prayers eventually. It's all in his time and sometimes that can be very frustrating. But God sees the entire big picture of your situation and how it relates to others and the rest of the world. We don't get that view or maybe we'd understand more.
I wish you the best and will pray for you.
PML
UPDATE ON NONVERBAL DAUGHTER WITH V
We are at day 10 of hospitalization
Daughter progressed to full fiber diet last night
No resection done after decompression and after8 people holding her for abdominal xray(autism,scared) showed colon empty of
stool
But with colace, she has not had bm, any one know about how long it takes for normal stool to start? She is sleeping in chair, can't tolerate bed
She's walking, drinking lots of water, she did have 2 extremely large formed bms monday nite but nothing since
Can this post be sent to all who replied to me?
Everyone has been so supportive but i can't reply to all, im a 76 yr old tired mom 😔
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2 ReactionsMinajo,
So much progress, this is great. If I understand correctly, your daughter had 2 large BMs on Monday, just a day and a half ago, today is Wednesday. X-ray showed empty bowels...she is on full fiber diet now. I am thinking she does not eat large portions. I think it takes a bit of time to poop again. What we eat today is helping to push the food from 1-2 days ago. Since her colon was empty, I think it is normal to not poop for a bit. The eat, push, poop, cycle has to have enough food to get it going again. You mentioned Colace and 2 extremely large formed BMs, that sounds like her body is getting into a rhythm. Did the BMs hurt coming out? What makes you think the colace is not working? Possibly ask the nurse if she can take a bit larger dose of Colace or add a small dose of miralax.
If sounds like she is doing much better...now it seems that you need a break from the constant stress. Can you have a friend or family take some shifts and you go home and get your much needed rest?
We are all so grateful for these improvements. Take care of yourself too. ShelleyW
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1 ReactionI'm so glad that you posted an update, @minajo. It sounds like your daughter is making some real progress! Be encouraged!
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1 ReactionTo 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
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.
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..
Minajo,
Keep us updated. I truly wish I could actually be of any real help to you. I am here to support and listen for you.
ShelleyW