I got out on Saturday last, and was in for 10 days. The ostomy part seems to be doing ok, but I do feel like I have been run over by a bus I am so tired and just not"right" either in my body/mind/spirit - sort of everything is off kilter.
The pain was extreme - as I knew they would be as I process pain drugs very very quickly - oxycontin might as well be penny candy for all it works for me. I am on hydromorphone 4mg every 3 hours.
I wouldn't need that actually for the ostomy, but rather for the rectum removal. I have had leaks from the rectum every day since the third day after surgery...and the wound vac has not been a resounding sucess because of a either a leak in the plastic sealing they put on - or the bloody machine wasn't plugged in in the hospital for two days.
The pain in my rear is excruciating, and when the visiting nurse comes - now everyday because of the problems - it hurts so badly when she removes the sponge. No one I think prepared me for that type of pain - like a hot dagger - and then the 10 hours for the tissue to calm down.
Has anyone else had this? They say I will have the wound vac for 4 weeks - but I can't imagine 3 more weeks of this type of pain. I also will be out of heavy drugs by then - and I think they will be resistant to give me more. I would have to say this is a level eight pain. My doc is aware of it - annd we are all taking a wait and see attitude.
Yesterday my wife had to un do my plastic seal for the vac - as I was leaking - and bless her heart, she cried with every groan of mine and bite into a rag so I wouldn't let out a yelp.
My MIL says I should be back in the hospital and is ranting about me being here. I guess I am a threat to her and my wife's health by the wound draining. She only comes near me with a mask and gloves. I think my wife will ask her to go home now - even though she really does need the help.
I don't mind the leaking itself - and it is not too much they say - and the nurse says the wound looks good except for svere skin irritation form all the putting on and taking off of adhesives where there was surgery.
My MIL says she doesn't see the improvement and that her daughter is wearing rose coloured glasses.
I am sort of confused about my situation - the nurses who have come - one the head of rectal cancer and surgery says that time is needed to overcome this and it will improve...but then my MIL says that I can get Sepia, Staph, MRSA, and host of other things that could kill me and infect her and the rest of my family. She convinced my wife to have all our pets boarded or kept away from me - now not just for the jumping on my tummy, but the animal germs they will get into my rectum. So, I am relegated to my room - and have the energy to use the PC from time to time. Please forgive me for that.
Any advice or experiences with those who have had had their rectums removed - and if you were in pain - please give me some advice and perspective. As I said, I feel off - from pain, drugs, the surgery, and my MIL.
Thank you and I thought of you all while I was in the hospital. I couldn't wait to get back here to get some much needed support and some virtual hugs (but gently though! hheheheh).
With love to all,