Reply to "J-pouchers in London"

Hi Dean, I am in London a lot, and did live there, although am now based on the south coast. What surgery have you had so far? Have you lived with a bag for a long time? I had UC, and first had surgery in 1999, where I had all of my large bowel out and a ileostomy. They left the parts which would make a pouch for later, as being a 21 year old female at the time, they recommended having any family I was going to have first. That was the furthest thing from my mind at the time, but, 12 years later I have two lovely girls aged 4 and 7. I lived for those 12 years with an ileostomy, a very normal life. Last year in June, it was decided that it was finally time to either use the parts they had left to form a j pouch, or get rid of them and have a perm ileostomy. My care was based at Kings College hospital. I had the j pouch formed in June 2015. It was definately 'sold' to me as the best option long term. However, I developed an infection because of a leak along one of the surgical lines. A pocket of 'pre sacral collection' was trapped behind the pouch and my spine. This obviously delayed the pouch being connected up. Unfortunately Kings took 12 months to fix me, and that whole time I've had this serious Sepsis infection, and have been in and out of hospital, seriously ill. Treatment with antibiotics clearly wasn't working but they just couldn't seem to drain this collection. Finally, after seeking a second opinion, the surgeon from Kings pulled his socks up and used CT guided drainage to drain the collection; turns out he could have done that months ago. The internal area where the collection was, is now healing up, and My blood tests are all normal now. I feel a lot better but have been seriously through the mill and weakened by being ill for so long. I have decided to transfer my care from Kings College to UCH, under a new surgeon by the name of Mr Windsor. He wants me to heal up for a few months before doing anything else. The guy at Kings would have already connected up the pouch by now, healed up or not, and sent me on my not so merry way. Ironically, it turns out that I have a stricture at the bottom of the pouch, which needs sorting out before connecting anyway. This stricture is a serious complication and questions whether the pouch will ever drain well. Mr Windsor has said that he probably wouldn't have ever offered me pouch surgery, because this stricture is not new, it was evident before the pouch surgery. He said I have a low chance of having a well functioning pouch. The bigger irony is; I wasn't sick when I had the pouch formed, I had lived with an ileostomy for 12 years, very happily, because generally I was very well. I personally feel that 'if it's not broken don't fix it' - I.E, think very carefully about going through surgery if you already live with an ileostomy that has given you your health and life back. I've missed out on a year of my life, a year of my kids growing up, a year of running my business, and a year of living life...I wish I had refused the pouch surgery. So at this point, I don't know whether I will have the pouch connected or have a perm ileostomy. Whatever decision you make, make sure it's not just based on not wanting to have a bag...I can promise you that you can live a totally normal life with one. I worked hard and played hard for 12 years with a bag. I'm happy to chat anytime. Kind regards, Nikki 

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×