Hi
I wondered if anyone else has been diagnosed with a fistula in their J pouch as a result of pouchitis?
I have had chronic pouchitis for a long time which was treated with antibiotics. The fistula resulted in significant infection which spread from the pouch into a large area of tissue of my butt cheek, tracking down to form a lump at the top of my leg. Although I had pain there was nothing to see for a while until I developed swelling and my skin became very red and hot to touch. Very painful and I felt extremely unwell. There was no focal point like an abscess so nothing to drain.
2 GP's fobbed me off with my symptoms, one saying the lump which was hot to touch was a DVT and sent me for a DVT scan (I had a lump at the top of my leg!) and the other asking if I had cut my leg shaving!! I even asked if it could be a fistula and they said no I would be more unwell and I didn't have a temperature. It was only when I saw my usual GP she did something about it and my surgeon admitted me the same day she saw me. She tried IV antibiotics which didn't work and I ended up having to have a loop ileostomy. I only had a temperature once during the whole thing despite my inflammatory markers being very high and being septic and unwell. I ended up spending 7 weeks in hospital including high care and needed a further 3 months off work. A repeat MRI showed the fistula is starting to heal but I still suffer with some pain and feel very exhausted.
Its definitely not crohns (they double checked and repeated biopsies). Apparently there are now 3 of us at my GI centre who have fistulating pouchitis after having a pouch for U.C. My surgeon contacted St Marks (national gastro hospital) and they said that they are starting to see this in patients 8-10 years out from having a pouch formed due to U.C. There is currently no effective medical treatment available in the UK and the only option was for an ileostomy.
I consented to a loop ileostomy rather than have everything out, as I just hope there may be some treatment in the future which will mean I can have a reversal. At the moment no one is willing to take a chance and reverse me as the risk of further fistula and sepsis is too high and potentially life threatening; I even went to St Marks to beg them but the refused.
I feel devastated by the surgery and traumatised by being once again very sick. Getting back to work and trying to have a life is extremely hard even though its about 8 months or so since my surgery. I hate having a bag again and find life very difficult with it. I would love to hear from anyone else who has this and if there is any chance of a cure?
Thank you.
I wondered if anyone else has been diagnosed with a fistula in their J pouch as a result of pouchitis?
I have had chronic pouchitis for a long time which was treated with antibiotics. The fistula resulted in significant infection which spread from the pouch into a large area of tissue of my butt cheek, tracking down to form a lump at the top of my leg. Although I had pain there was nothing to see for a while until I developed swelling and my skin became very red and hot to touch. Very painful and I felt extremely unwell. There was no focal point like an abscess so nothing to drain.
2 GP's fobbed me off with my symptoms, one saying the lump which was hot to touch was a DVT and sent me for a DVT scan (I had a lump at the top of my leg!) and the other asking if I had cut my leg shaving!! I even asked if it could be a fistula and they said no I would be more unwell and I didn't have a temperature. It was only when I saw my usual GP she did something about it and my surgeon admitted me the same day she saw me. She tried IV antibiotics which didn't work and I ended up having to have a loop ileostomy. I only had a temperature once during the whole thing despite my inflammatory markers being very high and being septic and unwell. I ended up spending 7 weeks in hospital including high care and needed a further 3 months off work. A repeat MRI showed the fistula is starting to heal but I still suffer with some pain and feel very exhausted.
Its definitely not crohns (they double checked and repeated biopsies). Apparently there are now 3 of us at my GI centre who have fistulating pouchitis after having a pouch for U.C. My surgeon contacted St Marks (national gastro hospital) and they said that they are starting to see this in patients 8-10 years out from having a pouch formed due to U.C. There is currently no effective medical treatment available in the UK and the only option was for an ileostomy.
I consented to a loop ileostomy rather than have everything out, as I just hope there may be some treatment in the future which will mean I can have a reversal. At the moment no one is willing to take a chance and reverse me as the risk of further fistula and sepsis is too high and potentially life threatening; I even went to St Marks to beg them but the refused.
I feel devastated by the surgery and traumatised by being once again very sick. Getting back to work and trying to have a life is extremely hard even though its about 8 months or so since my surgery. I hate having a bag again and find life very difficult with it. I would love to hear from anyone else who has this and if there is any chance of a cure?
Thank you.
