My Story
By Phil Guinness
From Hampshire, England

Here is my story:

1994;
rushed to hospital as an emergency where they removed my large colon which had gone to toxic megacolon, caused by U.C.

Spent 1 month there and had lots of other problems, e.g septicemia from an infected drip.

Came out looking like a skeleton but was soon on the mend after getting use to my ileostomy, I was playing football and very fit before my illness and

I had to make some adjustments in my mind more than anything else.

1995 aug;
I had my ileo-anal pouch made and was left with a temporary loop ileostomy after the surgery while the pouch was given a chance to settle.

I spent two weeks in hospital this time and had a few minor problems, but came through reasonably well.

1995 sep:
I was back in to get the pouch connected and spent 10 days there this time, a few problems made my stay longer than intended.

The next year was quite difficult getting used to the pouch and the amount of times I was going to the loo, but hey I was alive!

After twelve months I was getting on reasonably well with the pouch and for the next year started to get back to sports which led to the start of more problems.

1997 aug:
I fell on my backside while playing football and was diagnosed as having a blood clot on my buttock which would eventually go with physio.

The pain at this time was very severe, every time I had any king of movement in my bowel I had shooting pain right through my buttock and down my leg.

After being sent to the accident and emergency at the hospital two more times by my doctor, as he was not happy with the situation,I was lying at home in agony until my doctor finally phoned an ambulance and I was taken in as an emergency where they gouged out a massive wound in my buttock to release all the fluid etc that had built up. I spent just five days in this time.

1997 sep-dec:
For the next three months I put up with the wound on my buttock healing and then becoming infected again and then being cut to release the pressure as it became apparent that it was a fistula from my pouch that was causing the trouble.

1997 dec:
I was finally back in hospital at xmas, where I was given back my ileostomy.I spent a week there but was released too early as I became pretty ill after two days or so and spent three weeks in bed being treated by doctors visits .

The next two years were spent with numerous check ups and pouchagram x-rays to see if the fistual was healing.

Finally it was decided that it had healed as much as it could and I was left with the decision to go back to the pouch. As a bit of gambler of course I went for it.

1999 nov:
This was quite easily my worst experience to date, after the reversal things seemed ok for a while, but after a week or so while still in the hospital the fistula broke out again and I was rushed down to theatre again where they gave me back my bag. Then my buttock became infected and I went to theatre again this time to have more of my buttock cut open. Then my stomache wound began to break down, the stoma was very close to the open wound obviously and this gave great problems. I then contracted septicemia again and they couldn't find a vein to get the anti- biotics in, eventually the drip was put into my big toe. Then my buttock flared up again and yet again I was back to theatre for my fourth operation.

2000 jan:
I finally left the hospital after two months only to encounter more problems. My partner at the time broke it off on the very day I came out, she was a nurse!

The following day my brother turned up to tell me he was leaving his wife of twenty years and ended up sleeping on the floor at my one bedroom flat,this was followed by renting a house with my brother, and falling out with him after the truth came out. To this day I still have no dealings with him.

2001 dec and 2002 dec:
I came down with acute gastric flu which was very scary indeed, I was hospitalised. This can be fatal for ostomates.

2003 jan:
Back in hospital again to have my pouch and rectal stump taken out, many problems again. The laporotomy wound broke down again and I spent another month in hospital. When I came out I was left with a leak from a small whole in the rectal scar which wouldn't heal, I spent the next year wearing womans sanitory towels.

2004 jan:
Back again,this time for a procedure called a"LIMBURGH FLAP", which is basically a clever bit of skin grafting and double stitching to cover up the hole. This should have been straightforward but I had yet more problems with the wound opening and after two weeks they discharged me with a bigger whole than i originally had. After weeks of being treated by district nurses and the doctors surgery the wound finally healed.

PRESENT DAY
After ten years illness and surgery, I though I could start getting on with my life only to find once again the girl I had been with for three and a half years has left me without any explanation other than a note!

I am now totally alone and depressed even though I know how much more people have to put up with.

Email Phil