My Story
By Jason Dale
From West Yorkshire, England

It all started on July 25th 1974, in York General Hospital. I was born at 9.06pm, via c-section - a full seven weeks early.

Despite being poorly as a baby and spending my first few months of life in hospital I had no real bowel problems at that time. It would be 8 years later before the illness raised its ugly head, and the illness was eventually blamed on the seven- week premature birth.

I still remember the first day I was aware of the illness. Like I say I was 8 at the time, I went to the toilet and passed a load of blood. Immediately, I knew I couldn't tell my folks, I felt so embarrassed it was happening to me. But when it hadn't stopped after a few weeks I did tell them.

Various tests at York General Hospital found absolutely nothing wrong with my bowel. They were baffled by the blood. The only possible cause that they could find was that inside my rectum there was a small blood vessel on the surface, and maybe it was being caught by solid stool and that this would be the source of the blood. The snag with that idea was that I had been bleeding the day before the tests and the morning of the tests so surely they would have seen if it was torn.

So, I was sent home. Nothing could be done, or would be done, and I continued to bleed on an irregular basis until ten years later when my bowel hemorrhaged.

I was 18 then. I had just sat and pasted my A-Levels year 1 exams, and was looking forward to getting the summer holidays started. It was the last week of term and I was sitting in the Geography lecture. We were discussing the exam we had just taken and were going through the answers so people could see where they went wrong.

Now, bowel disease is often linked to stress, and I had certainly been stressed at that time. I detested geography. I was an English student. I lived for classic literature and the English language. I hated rock formations and rain cloud formations. I walked through my English language and Eng Literature Exams, but Geography was a real pain. I struggled like hell during the year, but I was passing it, but it was a real struggle. I knew I needed to pass it to keep my plans on course for university.

Anyways, I passed it, and it is ironic that the bowel should hemorrhage in the middle of that lecture and not any of the others. I remember an excruciating pain, and feel wet behind. I didn't ask permission to go to the toilet I just ran out of the class causing a bit of a commotion, but who cares, ran into the toilets and promptly passed a good couple of cups of bright red blood into the system. It was a white bowl too so it REALLY stood out.

I remember feeling really scared. I'd had little bits of blood over the years but never anything like this. I tidied myself up and returned to the lecture. The lecturer - who I detested - came up to me and in a harsh whisper said, "You'd better explain yourself Mister or I'm calling the Principal." So I calmly packed my bag up and said, "If you want to call someone for me, call an ambulance" and I collapsed into my chair because I felt so weak. I did get an apology from the teacher later on after the event but even now I like the fact I got the last word in. lol. :P

With it being the end of the college term anyways I had a few months to get fit again and I truly believed I would be back at college in September ready for year 2, and onto University. It never happened.

I spent the summer having numerous tests. I was diagnosed as having Colitis (incorrect diagnosis) and placed on high doses of Prednisone (steroid) and a daily asacol enema. Unlike today's asacol enemas which are foam based, these were liquid . . . 300ml enemas every night. I'd shove it up, empty it and have to lie still on the bed for 45 minutes whilst it absorbed. I knew the wallpaper by my bed so well, because all I did was stare at it every night.

Every two weeks I had to go to the hospital gastro specialist for examinations and tests. The September deadline came and went and I was still no better. The pred was making me ill, I was anemic from continued blood loss and my bowels were starting to hurt.

Two years went past and I was still attending every two weeks for these tests. I finally had enough and asked the Gastro if maybe a second opinion would be a good idea. He flipped. Shouted at me saying, "I'll decide when a second opinion is required young man, not you!" (GRRRRRRRRRRRRRR) I went back to him two weeks later and he said "I think it's time we had a second opinion" and I was transferred to the surgical dept of my local hospital.

The surgeon there wasn't my favorite person. He did actually correctly diagnose the condition as SRU Syndrome - a rare bowel disease with no cure. It doesn't respond to colitis medication and if cut out the ulcers will return within 6 months to the area of the gut closest to the site of the original infection. So, I had wasted two years of my life trying to fight a condition I didn't have. I was livid!

After six months of seeing this surgeon I ended up having my first operation. It was just a sphincteroctomy - designed to make it easier for me to pass stuff because I was struggling to pass my stool, but it wasn't the sphincter that was the problem, the bowel was actually weakened so much now it was collapsing inside me.

Six months later the surgeon wanted to perform an operation on me called a Rectopexy. This is where they wrap the bowel in a mesh to strengthen it, but I was terrified of the operation. The surgeon had said "IF I do this operation, I WILL make you impotent, I WILL make you incontinent and I WILL probably end up putting you in a wheelchair for life". Filled me full of confidence.

I went to my GP in a total panic, there was no way I was going to have this operation. And they too agreed it was stupid to do it when the chances of permanent damage were so high. I was transferred to the Leeds General Infirmary where I saw the best surgeon of my medical history. Prof Johnson. He was a wonderful man. I miss his caring bedside manner and humor a lot. He decided instead of doing the rectopexy he would give me a temporary colostomy to let the bowel rest.

This was eventually done for me in 1997. I was 23. I wasn't bothered about having a colostomy; it didn't phase me at all. I knew without it I would die so it needed to be done. He did a good stoma for me, its maybe a tad small but I still have it now 7 years later and it is serving me well.

Sadly though, the idea of resting the bowel was not a good one. The problems in the rectum escalated and got much worse. He was at a lost of what to do and he was saying that maybe the rectopexy was the only next step he could offer me now.

I panicked. There was no way I could face that operation. But I didn't know what else I could do. I was seeing one of the best surgeons in the area… I was stuck.

By this time I was on the Internet and whilst researching my condition and the Rectopexy operation I discovered St Marks hospital in London, which is one of the world's leading bowel hospitals. In desperation I sent a written letter off to the Head of Surgery just asking if the rectopexy is the only option for me now in their minds.

Three months past, I heard nothing, and I gave up hearing from them. I was considering going ahead with the rectopexy when I got a phone call from St Marks inviting me down for a chat.

A couple f weeks later I caught the train to London and went to see the Surgeon there. They proposed an operation called a Delormes Procedure: This is where the pull the rectal stump out of the body inside out, and strip the mucosal layer. The stump is then compressed to a third of the size and stitched in place to strengthen the rectum.

They warned me it was risky but much less risky than the rectopexy. The worst that would happen would be I'd lose the rectum and have the colostomy permanently. So, I decided to go ahead with it.

The operation itself went smoothly but the recovery was a disaster. With the walls of the rectum being raw from being stripped it was healing together into a solid lump. The pain was getting horrific whenever I moved from the wall knitting together and ripping apart. Over the next two months I was admitted into the hospital 6 times for rectal dilation.

In the end the hospital had to give up on the rectum, it was solid and dying on me. I had no option but to have it removed. And it was the rectal removal operation where everything went really wrong in my life…

The operation was performed in Feb 2001, and it was very complex. The scar tissue from the previous surgery had been profuse and it took a lot of work to get the rectum out. Something went wrong during the operation. I was brought round halfway through. My back end was left open and my belly was just blanket-stitched and I had to go back to theatre three days later to have the operation completed.

After a stay in ICU after the second surgery I finally got back on the ward, where they forgot to give me any antibiotics in my drip for three days and so I caught MRSA in the wounds really bad. It was eating away at my body and rectal cavity and it did irreparable nerve damage to that area. As a result I now live in pain 24/7 and have to seek help from a pain clinic and take opiates (morphene and other opium derived painkillers) daily just to be able to live my life in reasonable comfort.

I was in hospital a month in total, and when I left the MRSA was still infecting me. The rear wound was constantly spewing a horrible smelling puss and the pain was getting worse. They decided that the wound in the rear should be reopened and allowed to heal from the inside out. It took a year to get the majority of the hole to seal and even now three years later it is still terribly deformed, but I don't show anyone my butt so who cares eh? :)

The bowel disease still has its moments. I'm still bleeding from the stoma, but I can cope with that. It's the pain from the nerve damage that is ruining my life big style. It's totally stalled my education plans, I got a job before the operation and lost it after it and even now I rely heavily on opiates to get through the day.

The opiates have also caused their own problems for me, including fits and other such problems.

The current situation is one of status quo. Nothing can be done to fix the nerves so that means the pain will always be there. Nothing can be done for the pain just yet as there's no new pain relief coming onto the market anytime soon for this type of pain, which means I have to keep taking the opiates. Because I have to keep taking them that means the fits will continue to be a problem. It's all a vicious circle really, but at the heart of it all is a bowel disease, which has no cure and is still causing me problems.

Throughout all of this the only thing that has worked properly and continues to do me proud is the colostomy. I have never had a problem with it physically or mentally. I can't see that being anything other than the case for many years to come; especially now that it is a permanent addition to my life. That said I do have blockage problems at times, but that isn't really the fault of the stoma, it's the fact that my bowels are very slow and sluggish and every thing is solid.

If only the rest of my body worked as reliably as the stoma, and the rest of the health problems I have gave me as few problems as the stoma and I would be one very happy camper. In fact I probably wouldn't even be remotely ill.

The problems I've had with my health have been quite hard on my love life. In fact I've hardly had one girlfriend over the last three years or so. My last girlfriend left me for another guy, and I found this out shortly after I left hospital. I can't help but think that if I hadn't been in hospital so much maybe she wouldn't have left me, but as it happens maybe it was for the best. Over the last few weeks though my heart has felt love again for the first time in a number of years. And who is it…? Well, she's someone who has allowed me to feel alive again, someone who has brought many smiles to my face. Someone I love very much, and would die for. Someone involved with this website…. ;) (No, that doesn't mean I'm in love with myself…)

So, what's the future for my health related problems. To be honest, there isn't much to look forward to. The nerve damage is permanent and the bowel disease incurable. All I can hope for is a new pain relief drug that can knock nerve damage pain on its head, and that a magic bullet is developed for all ulcerative bowel diseases that include mine.

Over the last year I had been looking forward to a pain relief spray that is derived from Cannabis. For the last 18 months or so it had been touted as offering great relief for Nerve Pain Sufferers, even though it is principally in development for MS sufferers. The last time I saw the Pain Doctor he informed me that trials of the Cannabis spray is proving that it is of little help to nerve damage pain, and will in fact be little more effective than codeine.

It was a huge disappointment; I really hoped it would be a magic bullet for nerve pain and allow me to get my life back on track. Unfortunately that isn't the case, and there's nothing else on the horizon to look forward to.

So, like I said earlier it's all Status Quo. Trouble is I am not going be "Rocking all over the world" with enthusiasm.

Email Jason