Going back to a bag.

[sbactive]

Hello

Apologies for the long post, it's been quite a ride and I would be grateful for any thoughts or advice as although I'm coping, I'm not sure how long that will last....

I was diagnosed with UC when I was nine, I'm fourty two now, I had my large intestine and some of the ileum removed when I was twelve, they botched the surgery and had to go in a few times and still botched it, I scar and form adhesions like no tomorrow which didn't help. I then went to UCLA medical centre in the US and had a j pouch done. It's been great since then, the last op I had at nineteen was an update of the previous j pouch and I suffered scarring which made me stay on TPN for six months. After that cleared I've been fine.... Until.... A couple years ago I started getting pouchitis a lot, I was put on apathy orpine, mercaptopurin, steroids, nothing helped and made other things go bad, like pancreatitis from the mercaptopurin etc... Then it seemed to go and I felt great for six months, until last January, I was sent into hospital with severe back and hip pain, they thought it was a ruptured disc, the MRI showed five ovarian cysts. Then it was decided it was endometriosis, great and I was put on a course of hormone therapy, they would not operate as it was deemed too hazardous. Three later hospital visits and my cyst is still there, now one big one, but the connection of my pouch to the rectal canal is cut off by a stricture, they released it three times but to no avail, I am home and when it closes up again I'm to irrigate the pouch etc to empty it.

They are operating, back to colostomy, whip out the ovary and hell why not, do a full hysterectomy. It's just now sinking in, the op is in about six weeks.

I'm scared what I will end up with! This is major and if they wouldn't operate before why the change, I realise I can't live with a tube in my bum, but what the heck? All I want to not to feel so so tired and fatigued, everything hurts and aches and I have no motivation. I'm on targinact for pain which is very strong, but I'm not sure I need it so want to try and wean off it before the surgery, but I'm just scared and wondered if anyone had had surgery after having major adhesion problems for ages etc. any help advice would be much appreciated, is there nutrition or anything to help avoid adhesions? Massage??

Help

Stephanie x

[Kinsey]

I'm sorry you're going through so much. I've never had problems like yours, so I unfortunately don't have any advice. Hopefully someone else will respond soon.

[sbactive in reply to Kinsey]

Thank you so much, just talking about it all and getting it out helps!!

Steph x

[joke]

By now you will be post op and will probably not feel like blogging hope all went well.

[sbactive]

Hi, no I'm still waiting, my surgery date is 28th January so am on hold just trying to keep out of hospital!!!