Hi everyone
I am a new member and wanting to share experiences.
I was diagnosed with ulcerative colitis in early 2012 after having spent the previous year in a highly stressful job and watching as my mother succumbed to motor neurone disease dieing shortly before Christmas 2011.
Initially they tried to treat me using medication but although things would improve short term they would worsen again once I came off the meds.
Ultimately surgery was arranged for September 2012 and I had my entire colon and rectum removed and was given an ileostomy and a j pouch. After a few days recovery and trying to go for a walk around the wards, I was sweating and burning up so stood by an open window for a bit of fresh air. Next thing I knew, I was lying on the floor surrounded by doctors and nurses as I had passed out and cracked my chin on the window cill on my way down which left me needing a few stitches in there. Just the start of my bad luck.
After recuperating in hospital for a couple of weeks I returned home and things seemed to be improving until suddenly I started to feel much worse. I went back to the hospital to ask them to check me over but they sent me home saying it was usual to have ups and downs after such major surgery.
A couple of days later my stoma nurse came to my home for a visit and upon seeing my condition told me to get straight back to the hospital as something looked seriously wrong. Upon insisting that something be done they agreed to take me down to theatre to open me up and have what they thought would be a quick 15min procedure to confirm all was ok.
I ended up in theater for over 6 hours and they had even had to bring a second surgeon in to assist as when they took a look inside they found a massive abscess and also a perforated ulcer in the small bowel which had filled my abdominal cavity with poo and if left another day or so would probably have caused septicaemia and could have killed me.
After coming around from surgery I was transferred to a different hospital as they had facilities more suited to me and although I thought recovering from the first surgery was bad it was nothing compared to this.
After 6 weeks I finally had all of my various tubes and drains removed with the exception of one drain which was still discharging and was sent home with a bag for my stoma and another for the drain.
The takedown operation was planned for Feb 2013 and following this surgery I awoke and when having dressings changed at the drain site it was found that I was leaking bowel content (poo) from there and what had been leaking all along was mucous from the j pouch and I was told that I now was suffering from an enterocutaneous fistula.
After spending a couple of weeks being fed tpn through my neck (also getting infection there) they realised that the fistula tract was mature and not likely to heal by itself.
I habe now been placed under the care of Hope hospital in Manchester as they are a centre of excellence for treating these sorts of conditions but unfortunately things are moving slowly and after already having had numerous scans I have had to just undertake some more as they are still unsure of exactly where the problem lies. I am told that the issue may just be a leak in the tail of the j which will mean a relatively straight forward op but they are concerned that there may also be a leak in the seam of the j which is a lot more complicated and the op may leave me impotent and incontinent. As it stands, I do not know which way things are likely to head but with everything that has happened so far I fear the worst.
Currently op is hopefully going to be in or around Oct of this year so fingers crossed something will finally go right.
As it stands, I have had to leave work as I am constantly figthing infections around the area which leave me drained and sleeping for 12-16 hours a day and although I feel relatively upbeat when health is on the up I have crushing depression when laid up and ill. Having been used to being a fit and healthy 17 stone bodybuilder, it has been hard to adjust to weight crashing down to below 12 stone (although back to 14 now).
Sorry if I have rambled on a bit but could have actually gone on more. Please feel free to message back if you have had similar and also let me know if any of you have suffered depression and how you have coped. I am currently on a 23 week waiting list for therapy after explaining about suicidal thoughts to G.P. At 23 weeks may have to get them to drop my corpse off when appointment finally comes through.
I am a new member and wanting to share experiences.
I was diagnosed with ulcerative colitis in early 2012 after having spent the previous year in a highly stressful job and watching as my mother succumbed to motor neurone disease dieing shortly before Christmas 2011.
Initially they tried to treat me using medication but although things would improve short term they would worsen again once I came off the meds.
Ultimately surgery was arranged for September 2012 and I had my entire colon and rectum removed and was given an ileostomy and a j pouch. After a few days recovery and trying to go for a walk around the wards, I was sweating and burning up so stood by an open window for a bit of fresh air. Next thing I knew, I was lying on the floor surrounded by doctors and nurses as I had passed out and cracked my chin on the window cill on my way down which left me needing a few stitches in there. Just the start of my bad luck.
After recuperating in hospital for a couple of weeks I returned home and things seemed to be improving until suddenly I started to feel much worse. I went back to the hospital to ask them to check me over but they sent me home saying it was usual to have ups and downs after such major surgery.
A couple of days later my stoma nurse came to my home for a visit and upon seeing my condition told me to get straight back to the hospital as something looked seriously wrong. Upon insisting that something be done they agreed to take me down to theatre to open me up and have what they thought would be a quick 15min procedure to confirm all was ok.
I ended up in theater for over 6 hours and they had even had to bring a second surgeon in to assist as when they took a look inside they found a massive abscess and also a perforated ulcer in the small bowel which had filled my abdominal cavity with poo and if left another day or so would probably have caused septicaemia and could have killed me.
After coming around from surgery I was transferred to a different hospital as they had facilities more suited to me and although I thought recovering from the first surgery was bad it was nothing compared to this.
After 6 weeks I finally had all of my various tubes and drains removed with the exception of one drain which was still discharging and was sent home with a bag for my stoma and another for the drain.
The takedown operation was planned for Feb 2013 and following this surgery I awoke and when having dressings changed at the drain site it was found that I was leaking bowel content (poo) from there and what had been leaking all along was mucous from the j pouch and I was told that I now was suffering from an enterocutaneous fistula.
After spending a couple of weeks being fed tpn through my neck (also getting infection there) they realised that the fistula tract was mature and not likely to heal by itself.
I habe now been placed under the care of Hope hospital in Manchester as they are a centre of excellence for treating these sorts of conditions but unfortunately things are moving slowly and after already having had numerous scans I have had to just undertake some more as they are still unsure of exactly where the problem lies. I am told that the issue may just be a leak in the tail of the j which will mean a relatively straight forward op but they are concerned that there may also be a leak in the seam of the j which is a lot more complicated and the op may leave me impotent and incontinent. As it stands, I do not know which way things are likely to head but with everything that has happened so far I fear the worst.
Currently op is hopefully going to be in or around Oct of this year so fingers crossed something will finally go right.
As it stands, I have had to leave work as I am constantly figthing infections around the area which leave me drained and sleeping for 12-16 hours a day and although I feel relatively upbeat when health is on the up I have crushing depression when laid up and ill. Having been used to being a fit and healthy 17 stone bodybuilder, it has been hard to adjust to weight crashing down to below 12 stone (although back to 14 now).
Sorry if I have rambled on a bit but could have actually gone on more. Please feel free to message back if you have had similar and also let me know if any of you have suffered depression and how you have coped. I am currently on a 23 week waiting list for therapy after explaining about suicidal thoughts to G.P. At 23 weeks may have to get them to drop my corpse off when appointment finally comes through.