Jason’s Medical History

Jason is the webmaster/owner of Ostomyland.com, who also wrote the lifestyle guide book that this site is mainly built around. 

Please note: I have left some bits and pieces, surgeries and details out for the sake of privacy.

1974:
Born 7 weeks early. The bowel disease I later suffered from apparently stems from this event, although we did not know this until about 2006 when the research was published stating the link.

1974 – 1982:
I often found it difficult to “go” to the toilet, would be often straining, but nothing could ever be found.

1982:
First started to bleed from the rectum. Again nothing could be found other than a little blood vessel on the surface of the rectum which the Docs presumed was the cause of the bleeding.

1982 – 1992:
Continued to bleed off and on and have pain occasionally.

1992:
After sitting and passing my Year 1 A-Levels, my bowel haemorrhaged . I was taken to the hospital. Soon after was ,wrongly, diagnosed with Ulcerative Colitis. Was pumped full of steroid and the usual UC drugs. Including a daily liquid enema which had to be held for about 30 mins before it absorbed into the bowel. (These foam enemas are soooo much easier today lol)

1994:
Had my first operation, sphincteroctomy – an operation to make the sphincter relax a bit more and pass stuff easier. Was correctly diagnosed with a rare bowel disease called SRU Syndrome. A rare ulcerative condition where the bowel  has just one singular ulcer, if its cut away it comes back. While its in place it weakens the bowel until it leaves a hole.

1997:
After a six month stint of 10 hospital stays I ended up my bowel collapsing and blocking up permanently so I had a colostomy performed temporarily. The idea being if my bowel rested the disease would be contained to the rectum and hopefully go into a sorta stasis and be no bother.

1998:
The Ostomyland website project was born…

2002:
My rectum was removed. During the operation something went wrong as I was brought out of the theatre before the op was completed. It got completed 3 days later. After the 4 day stay in HDU during which time I didn’t get my Abs, I wound up with the MRSA infection which was severe enough to leave me with permanent nerve damage in the rectal cavity. Over the years I initially though the nerve damage was from the botched surgery, but the more I’ve learnt about MRSA the more I realise that it was THAT which caused all the damage and not my Surgeon. I wound up being in hospital for 4 weeks instead of 7 days.

It took about 8 months for my rectal wound to heal. It’s awful looking and a bit disfigured but fortunately, I don’t go showing it off to people, lol. No more mooning for me!

2003 to present day:
Since then I have got the ulcer patch back, just behind the stoma. I have a u-bend there which frequently causes blockages, so me and the microlax enema are best buddies.

For the pain I have been seeing a specialist pain clinic, three of them in fact. I was having spinal block/epidurals for two years until my spine got accustomed to them and I could no longer have them. Right now I am on Methadone (yes, that methadone) and Lyrica (a special nerve pain drug) to help control the pain so that I can live a semi normal life. Without the drugs my pain would be 24/7. With the drugs I can get sessions where the pain is still bad most of the day for weeks at a time, or I can have maybe one breakthrough pain session every two or three days. Just depends how the days go.

For the future:
I am still dealing with the ulcer(s) in the bowel, and I will still be looking for a cure to my nerve pain. Now, the surgeons and my family, are trying to talk me into having spinal implants, but if the surgery was botched again then I would be left in a much worse state than I am now, maybe even in a wheelchair.  With the luck I have had with my surgeries, I just dare not have it done. I have a lot to gain from them, but the slim risk of losing everything is just too great, especially when the chances of the implant working are only 50/50.

Needless to say, with all this being such a problem, Depression is a big factor in my life, and I am receiving treatment for that too. Well, I’m taking Anti-Depressants, and have seen councellors, but thats all.

So thats my brief medical history. The bowel problems cost me my chance to go to University to get my degree, and the pain problems have cost me my job in Banking. My job is waiting for me; they say they will have me back once it’s controlled properly. However, that day is still a long way off. On the positive side, my experiences have made me stronger, and gave me the chance to create the Ostomyland website and it’s community. It’s something I’m very proud of, and wouldn’t change for the World. People often say things happen for a reason, and maybe my health problems have happened so that I could create Ostomyland and make so many new, wonderful friends. Many of whom I consider to be amongst my best friends.
Jason D
Webmaster, Colostomate
& Owner: Ostomyland.com