After 11 months of post op complications I've been advised by my surgeon to remove my pouch 
I initially had an infected wound which took about 4 months to heal completely, then I had this internal infection which just wouldn't shift.
From what I understand of it all I had a hole in the pouch which wouldn't close and after being sent home to wait while it closed the area got infected. I was put on antibiotics (augmentin). Well the infection kept coming back every time I finished the antibiotics.
I developed a hard sore patch in my buttock which started to get bigger and bigger. But I couldn't be seen by my surgeon because he was too busy and was advised to check in via A&E.
I was admitted and had an operation to cut a hole in my buttock to drain the infection which was collecting.
Obviously it was very sore but I thought it would be a means to an end.
Then I went back to see the registrar in clinic and mentioned that another lump seemed to be forming not far from the hole which was surgically cut to drain the infection. the regestrar said she wasn't worried about. Well that lump burst open and presented itself as a fistula so I now have 2 vey sore holes which are weeping infection.
I've just been back to see the surgeon after a heated conversation with his registrar as I was getting concerned with how my treatment and how my care was being handled as I never really knew what the next step would be. I was concerned that every time i stopped taking the antibiotics this infection would come back, and I felt kind of abandoned once I was sent home. I know they are really busy and they always do their best but it's just how I felt.
So after agreeing to see me the surgeon has now recommended that I have the pouch removed and go back to a permanent ileostomy as he thinks its the pouch thats causing this ongoing infection, and as its been surrounded by this infection for so long now it would never ever function properly if at all as the infection would have damaged the tissue of the pouch.
Obviously I'm absolutely heartbroken as I never even got as far as getting the pouch connected.
I'm not sure whether I should get a second opinion or not. I believe my surgeon is one of the top surgeons in the country if not the world but I had it in my head that I was finally going to get rid of the bag.
It's been really hard physically and mentally over the past year and I lost about 4 stone (but put 1 back on) but don't know whether I should give up, or whether I have a choice, because the way my surgeon put it to me was I didn't have a choice, plus I'm absolutely petrified of the surgery and the recovery as I'm bearly over the last surgery.
Sorry for the rant but any advice would be great!
I initially had an infected wound which took about 4 months to heal completely, then I had this internal infection which just wouldn't shift.
From what I understand of it all I had a hole in the pouch which wouldn't close and after being sent home to wait while it closed the area got infected. I was put on antibiotics (augmentin). Well the infection kept coming back every time I finished the antibiotics.
I developed a hard sore patch in my buttock which started to get bigger and bigger. But I couldn't be seen by my surgeon because he was too busy and was advised to check in via A&E.
I was admitted and had an operation to cut a hole in my buttock to drain the infection which was collecting.
Obviously it was very sore but I thought it would be a means to an end.
Then I went back to see the registrar in clinic and mentioned that another lump seemed to be forming not far from the hole which was surgically cut to drain the infection. the regestrar said she wasn't worried about. Well that lump burst open and presented itself as a fistula so I now have 2 vey sore holes which are weeping infection.
I've just been back to see the surgeon after a heated conversation with his registrar as I was getting concerned with how my treatment and how my care was being handled as I never really knew what the next step would be. I was concerned that every time i stopped taking the antibiotics this infection would come back, and I felt kind of abandoned once I was sent home. I know they are really busy and they always do their best but it's just how I felt.
So after agreeing to see me the surgeon has now recommended that I have the pouch removed and go back to a permanent ileostomy as he thinks its the pouch thats causing this ongoing infection, and as its been surrounded by this infection for so long now it would never ever function properly if at all as the infection would have damaged the tissue of the pouch.
Obviously I'm absolutely heartbroken as I never even got as far as getting the pouch connected.
I'm not sure whether I should get a second opinion or not. I believe my surgeon is one of the top surgeons in the country if not the world but I had it in my head that I was finally going to get rid of the bag.
It's been really hard physically and mentally over the past year and I lost about 4 stone (but put 1 back on) but don't know whether I should give up, or whether I have a choice, because the way my surgeon put it to me was I didn't have a choice, plus I'm absolutely petrified of the surgery and the recovery as I'm bearly over the last surgery.
Sorry for the rant but any advice would be great!
