Hi all my other half has rectum cancer and severe chrons disease.The surgeon wants a full removal of everything and iliostemy.Has anyone been through this and if so can you offer some positive thoughts/outcomes.
My daughter has had colitis for over 10 years was diagnosed at the age of 4 years old.
No meds worked at all and I wish her colon was removed sooner but unfortunately that didn't happen. Her symptoms were terrible, bleeding heavily, lethargic no appetite. Always underweight eventually she had a feeding tube which was a back up for her not eating.
I kept going back and forth to the GI requesting for the colon to be removed. Eventually in November 2018 she had a sub total colectomy. Was told by the surgeon my daughter's colon was in a terrible state. We thought that would be the end of her suffering. Unfortunately, that didn't happen, symptoms continued.
She developed a perianal abcess which lead to sepsis and her in ICU. This was all due to the diseased rectum, this all took place in December 2019. She has developed fistulas since last few months. Now she is due for a surgery this coming week where her rectum and anus will be removed with a permanent ileostomy.
Just so heartbreaking to see my daughter going through this pain.
So glad to hear your husband is feeling alot better I would love to hear on your experience on this procedure I am feeling so nervous and feeling emotional. I'm just so glad that my daughter doesn't really understand what is going on. My daughter has other long term medical conditions.
Was it laparoscopy procedure your husband had or incision? We have been told it will be laparoscopy but everything will be taken out from the back passage, I think.
Hello high five . I wrote the original post and my husband is a year in after having panprotocolectomy .In a way it's better than the dreadful Chrohns and of course the cancer .
The operation is big ...took 9 hours although may be less for your daughter.He was in hospital for a month and it was infected around the stoma but this is common and it was sorted with dressings and antibiotics.
He now has more freedom to go out and about without constant worry.The stoma nurses are fantastic and helpful and he can now change it so quickly.Psyclogically it's hard because it's permanent but he eats a relatively normal diet now with a few exceptions.( To begin with it was shepherds pie and things like that).
All in all its worth it and especially so young your daughter should be ok.There are quite a few blogs that young people with stomas have put up which are worth reading .There are also ostomy help groups locally.
