• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.


Four and a half years ago I had a Pan-proctocolectomy due to a burst bowel.
Because of previous operations my surgeon had warned me that I would eventually have to have one, so I was in some way prepared.
My sister had one when she was 19 (about 30 years ago) and went on to marry, have 3 children, gained an MA and became a teacher. At that time I had helped her convalesce and so had experience of the whole thing. Seeing how well she was afterwards gave me confidence, especially after reading the info on the NHS site. I believed that I would be in hospital for 7-10 days having had a 'zipper' wound, then following a 7 week convalescence I would be able to return to work, feeling a lot better than I had for a very long time.
The reality was/is very different. I ended up in hospital for 3 months having 5 operations in 7 weeks (my usual surgeon couldn't attend as he was off work). No 'Zipper' wound but a messed up stomach with a wound being fixed with a Vac machine. I am still not at work, in a lot of pain due to an open internal wound that still exudes pus four and a half years later. It has affected my lady parts and I now have to have a total Hysterectomy then closure of the internal wound.
I asked my usual Surgeon if he knew of anyone who had had the surgery dealt with this in this way, and if so could he ask them if they would contact me so that we could chat about and give each other support over the rehab. Unfortunately he told me that as far as he knew I am the only one who has been dealt with in this way.
I feel very alone and wondered if anyone out there has had or knows someone in the same position. I would really like someone to chat with!