My daughter has had a twisted bowel twice in 6 weeks. She has SLD, autism and challenging behaviour. As the bowel is distended the advice is surgery to remove the “sigmoid volvulus”. If this can be done when bowel relaxed it may be able to rejoin. Otherwise she will end up with stoma and not sure how she will respond. Any advice welcome.
My daughter had the same last year. She had the volvulus successfully removed after a wait to get her bowel able to cope and also for her to get more able to cope with the surgery. They were able to rejoin the bowel and it has healed really well. My advice is to have a written admission plan that the hospital sign up to., ours included a side room and support staff 24/7 from her care provider who knew her well, we discussed her need for medication to be on the ward for an emergency and this was agreed, we also discussed who would do the surgery ie not a junior doctor in training still. We were initially told they hoped to have her out in 3 to 5 days , but it took 11 days.
I do hope it all goes well
1 Like
Thanks for your support. I have a best interest meeting tomorrow. Carers will be present. Residential home she is at will provide 24 hour support as they did on recent two occasions. The last time she was in for 4 days and bowel was untwisted using flexible endoscopy. We as parents stayed in the hospital all the time and the support we got from hospital and care staff was excellent. Our daughter (31) is now known on the ward where she will be if surgery goes ahead. Our biggest fear is she has another critical twist before planned surgery. It is encouraging to know your operation was successful. Many thanks for your response
a question has arisen about how someone with SLD and autism will react to anaesthetic and whether special provision has to be made
How did the meeting go?
Will your daughter be having the surgery?
I hope all goes well or if it has happened, that it went well.
Meeting was good . However our daughter had another "twist"at the weekend which was successfully untwisted but because of this we have been told that she will definitely now need a stoma.
We have a date for her planned operation on June 7 th - only had one response from someone in similar position but we feel well supported by the hospital . Worried about effects of anaesthetic on someone with her complex needs as well as aftercare and her limited understanding of long term care .
Thank you for your continued correspondence.