- Joined
- Sep 19, 2008
- Messages
- 643
Hi, my name is Dan, and I am a man, hence my nic, Danman. But at one stage of my life, I wasn’t so sure... more of that later.
I suppose every story has to start at the beginning.
I was born in 1973 to 2 loving parents. It soon became clear to them that I was to become a constant source of worry for them.
You see, I was a sickly child, from Asthma from an early age, through to Meningitis at 11. In between I had 2 operations for undecended Testes (sp?) aged 8 and 9, the first of which wasn’t a success and the second brought the testical down ok, but damaged it for life. So like Hitler in the famous song... “Danman... only has one ball...”.
Before that and after that, I had every cold and flu going, including a bout of double pneumonia.
Then, aged 12, I started to feel ill and blood started to appear in my BM!!
Remember, I’m 12 years old, I loved reading science books, biology and genetics fascinated me. I’d read in some book about Hermaphrodites!!
Yep, you guessed it; I thought I was having a period!!! Hence my comment at the start. I was too embarrassed to talk to anyone about this, and I guess the more stress I put myself under, the worse I got.
What I now know was a Crohn’s flare-up, lasted about a month, as far as I remember. It didn’t return until I was 15, three years later. I started to feel ill, but put it down to a stomach bug. To this day, I don’t know why I didn’t tell my parents, I know they were having a hard time with my sister; she was running wild at the time. They were under severe stress. Maybe that was the reason, I don’t actually know.
This flare-up lasted about 8 months, in which time I’d lost a lot of weight and was fatigued all the time. No one noticed my weight loss as this was the late ‘80’s, and the heaven for baggy clothes.
One day after going to the bathroom, my mother noticed blood on the back of my trousers. This was the catalyst for my diagnoses.
I was brought to the GP; she examined me and wrote a letter for me to take to casualty (ER). Once there, I was admitted straight away and the tests started.
Barium meals, Barium enemas, colonoscopies, I was prodded from one end to the other. My consultant diagnosed Crohn’s Disease. He explained all the details as they were known then and added that my diet would sort itself out over time. Anything I found to affect me, I was to stop.
My mother had the same conversation with him and related all the points back to me again. With 1 exception... She told me I could never drink alcohol. Clever Irish Mother!!!
I was but on a strict diet of orange juice, and was feed through a drip for about a week. This completely cleaned out my bowel, and also rested it. I also received a twice daily steroid enema. It sounds extreme now but it worked.
I was released from hospital after 2 and ½ weeks and prescribed Salazopryn, which is an anti-inflammatory. We now know that this has no effect on us whatsoever, so the next few years were a continuous loop of flare, pred, flare, pred.....
At 17 years old, I got chickenpox and it was threatening to turn to shingles, coupled with another flare of Crohn’s. Cue another 2 weeks in hospital. And more Pred. And steroid enema.
The cycle returned....
At 18 I went to University. I was very excited and for the first time in years my crohn’s wasn’t that bad. I got through the first 2 years with not too much trouble. I’d learned to deal with the crohn’s and would get Pred and the enema as soon as I needed it.
At 20, I had a bad flare-up. The GP I went to in my University advised me to go to casualty. This resulted in more tests... and I was diagnosed again with... Crohn’s!!!!
But a little side note on this diagnosis, at the hospital, they took all my details. One of the questions was “How much alcohol do you drink”. I was astonished at their ignorance. “I’ve got Crohn’s, I can’t drink alcohol!”.
“Yes you can, in moderation, just like anyone else. But if you find it affects you, stop.”
A statement like that is like a starter’s flag to an Irishman. I made up for my “Lost years”
Again the cycle returned. After University, I got work in the City I had been living for the past few years. The cycle kept on turning.
In 1997, I decided to go and look for more experience in London. The work would be more intense, but the learning curve would be higher.
On my arrival in London, I stayed with my friend and his wife. I noticed a discomfort in my bottom. Haemorrhoids I thought. I went to the chemist, got cream and duly applied to the affected area.
Then they burst. Blood everywhere on my clothes, and my friend’s wife’s nice sofa!!!
I still thought it was piles. I remember getting sicker and sicker but didn’t make a connection to Crohn’s.
One night, I couldn’t take any more of the sickness and pain. I asked my friend to drive me to casualty. I was admitted straight away and 3 abscesses were drained under anaesthetic. A week in hospital, in a different country and by coincidence, my friend moved to another part of the city the day after I was admitted. I have never been so lonely in all my life, before or since.
I was then referred to the hospital GI. More tests and I were diagnosed with.... Crohn’s disease!!!
The cycle continued, with the only change being, I was now prescribed antibiotics for the fistula as well. This went on for another 2 years.
After that I decided to move back home, well, to Dublin.
I was quite well for the first few months, but then the abscesses started again.
I went to a GP for antibiotics, but he would not give them to me. Instead he sent me to casualty with a letter. 3 more abscesses were drained and another stay in hospital. Even though Dublin is 4 hours from home, it wasn’t so lonely this time. My brother was also working in Dublin and my new girlfriend, who lived in Belfast at the time (the main reason I moved home was to woo her!!) came to see me.
More tests followed, guess what? Yep, I was diagnosed with.... Crohn’s disease.
I suppose this is where I got lucky. My new Consultant was fantastic. I’d been through 3 different consultants in London, and I didn’t find them helpful in the least.
But my new GI was a different breed. He started talking to me for a start, instead of talking “At” me. He change my med’s, and generally started to take care of me. I was told that if I found anything wrong with me to contact him as it might be connected to Crohn’s.
I was prescribed 6-MP, and within 4 weeks, my health started to return.
This was the first time in my life that I felt someone was taking my illness seriously. At one stage, I started have terrible pains in my back. I went to see my Doc. And he put me through a series of tests, the outcome of which, I was diagnosed with a trapped nerve. It had nothing to do with Crohn’s, but he had to be sure.
In 2002, my Girlfriend and I went on a trip to Barcelona. I proposed, she accepted. My life was never better. My health wasn’t great, but much better than I had ever been.
By the start of the summer of 2004, the fistulae had returned with a vengeance. My Doc decided to put me on Infliximab with the 6-MP. This was a life saviour as I got married a few months later in the best health I’d experienced in 15 years. I was with the woman I loved, and I was able to enjoy life with her.
2 months after we got married, we found out we were expecting a baby. The joy we felt and the excitement cannot be overstated.
By week 24 our joy turned to despair. Our baby had not survived. This was the darkest period of both our lives. My wife was inconsolable. I will never forget him.
Slowly we returned to life. The Infliximab was still working for me, so my health wasn’t a great concern. I went through a 10 week cycle. 1 week before I was due an infusion, my symptoms would return until 1 week after the infusion it would be gone again.
October 2005, we found ourselves celebrating again. My wife was pregnant.
She was very well looked after by her hospital and GP. Scans nearly every other week.
During this time, I went for my usual infusion, but I suffered a seizure while getting the infusion. My Doc took me off the infliximab and instead prescribed Humira.
I have a fear of needles at the best of times, perhaps a throwback to having meningitis and the lumber puncture they conduct. But the thought of giving myself an injection terrified me. My local nurse kept me sane and would administer the jab each fortnight.
With 11 weeks left with the pregnancy (week 29), my wife went into labour. All we thought was “not again”.
After a hard time, our son was born and although he spent 7 weeks in the NNIC Unit, he’s grown to be our pride and joy.
Last year the fistulae started again in earnest. My Doc decided to up my prescription of Humira to once a week along with the 6-MP. This worked for a few months but the same old problem returned.
My wife and I decided that the time was right to try for a baby again. We’d been through a lot, but we felt we were ready again.
After 12 months, nothing was stirring. I was feeling evermore ill and one of the fistulae was basically tunnelled through my scrotom. I went for a sperm test and the results were very bad. They basically couldn’t count any sperm.
I returned to my Doc, and he decided that surgery was the only option left for me. I’m scheduled to go to the hospital in 2 week time but I will only see the surgeon then. Hopefully this last resort will be the answer to our prayers.
I’m sorry I’ve probably bored you all to death with my story, but I thought if I’m going to tell my story, it should be all the story.
Thanks again
I suppose every story has to start at the beginning.
I was born in 1973 to 2 loving parents. It soon became clear to them that I was to become a constant source of worry for them.
You see, I was a sickly child, from Asthma from an early age, through to Meningitis at 11. In between I had 2 operations for undecended Testes (sp?) aged 8 and 9, the first of which wasn’t a success and the second brought the testical down ok, but damaged it for life. So like Hitler in the famous song... “Danman... only has one ball...”.
Before that and after that, I had every cold and flu going, including a bout of double pneumonia.
Then, aged 12, I started to feel ill and blood started to appear in my BM!!
Remember, I’m 12 years old, I loved reading science books, biology and genetics fascinated me. I’d read in some book about Hermaphrodites!!
Yep, you guessed it; I thought I was having a period!!! Hence my comment at the start. I was too embarrassed to talk to anyone about this, and I guess the more stress I put myself under, the worse I got.
What I now know was a Crohn’s flare-up, lasted about a month, as far as I remember. It didn’t return until I was 15, three years later. I started to feel ill, but put it down to a stomach bug. To this day, I don’t know why I didn’t tell my parents, I know they were having a hard time with my sister; she was running wild at the time. They were under severe stress. Maybe that was the reason, I don’t actually know.
This flare-up lasted about 8 months, in which time I’d lost a lot of weight and was fatigued all the time. No one noticed my weight loss as this was the late ‘80’s, and the heaven for baggy clothes.
One day after going to the bathroom, my mother noticed blood on the back of my trousers. This was the catalyst for my diagnoses.
I was brought to the GP; she examined me and wrote a letter for me to take to casualty (ER). Once there, I was admitted straight away and the tests started.
Barium meals, Barium enemas, colonoscopies, I was prodded from one end to the other. My consultant diagnosed Crohn’s Disease. He explained all the details as they were known then and added that my diet would sort itself out over time. Anything I found to affect me, I was to stop.
My mother had the same conversation with him and related all the points back to me again. With 1 exception... She told me I could never drink alcohol. Clever Irish Mother!!!
I was but on a strict diet of orange juice, and was feed through a drip for about a week. This completely cleaned out my bowel, and also rested it. I also received a twice daily steroid enema. It sounds extreme now but it worked.
I was released from hospital after 2 and ½ weeks and prescribed Salazopryn, which is an anti-inflammatory. We now know that this has no effect on us whatsoever, so the next few years were a continuous loop of flare, pred, flare, pred.....
At 17 years old, I got chickenpox and it was threatening to turn to shingles, coupled with another flare of Crohn’s. Cue another 2 weeks in hospital. And more Pred. And steroid enema.
The cycle returned....
At 18 I went to University. I was very excited and for the first time in years my crohn’s wasn’t that bad. I got through the first 2 years with not too much trouble. I’d learned to deal with the crohn’s and would get Pred and the enema as soon as I needed it.
At 20, I had a bad flare-up. The GP I went to in my University advised me to go to casualty. This resulted in more tests... and I was diagnosed again with... Crohn’s!!!!
But a little side note on this diagnosis, at the hospital, they took all my details. One of the questions was “How much alcohol do you drink”. I was astonished at their ignorance. “I’ve got Crohn’s, I can’t drink alcohol!”.
“Yes you can, in moderation, just like anyone else. But if you find it affects you, stop.”
A statement like that is like a starter’s flag to an Irishman. I made up for my “Lost years”
Again the cycle returned. After University, I got work in the City I had been living for the past few years. The cycle kept on turning.
In 1997, I decided to go and look for more experience in London. The work would be more intense, but the learning curve would be higher.
On my arrival in London, I stayed with my friend and his wife. I noticed a discomfort in my bottom. Haemorrhoids I thought. I went to the chemist, got cream and duly applied to the affected area.
Then they burst. Blood everywhere on my clothes, and my friend’s wife’s nice sofa!!!
I still thought it was piles. I remember getting sicker and sicker but didn’t make a connection to Crohn’s.
One night, I couldn’t take any more of the sickness and pain. I asked my friend to drive me to casualty. I was admitted straight away and 3 abscesses were drained under anaesthetic. A week in hospital, in a different country and by coincidence, my friend moved to another part of the city the day after I was admitted. I have never been so lonely in all my life, before or since.
I was then referred to the hospital GI. More tests and I were diagnosed with.... Crohn’s disease!!!
The cycle continued, with the only change being, I was now prescribed antibiotics for the fistula as well. This went on for another 2 years.
After that I decided to move back home, well, to Dublin.
I was quite well for the first few months, but then the abscesses started again.
I went to a GP for antibiotics, but he would not give them to me. Instead he sent me to casualty with a letter. 3 more abscesses were drained and another stay in hospital. Even though Dublin is 4 hours from home, it wasn’t so lonely this time. My brother was also working in Dublin and my new girlfriend, who lived in Belfast at the time (the main reason I moved home was to woo her!!) came to see me.
More tests followed, guess what? Yep, I was diagnosed with.... Crohn’s disease.
I suppose this is where I got lucky. My new Consultant was fantastic. I’d been through 3 different consultants in London, and I didn’t find them helpful in the least.
But my new GI was a different breed. He started talking to me for a start, instead of talking “At” me. He change my med’s, and generally started to take care of me. I was told that if I found anything wrong with me to contact him as it might be connected to Crohn’s.
I was prescribed 6-MP, and within 4 weeks, my health started to return.
This was the first time in my life that I felt someone was taking my illness seriously. At one stage, I started have terrible pains in my back. I went to see my Doc. And he put me through a series of tests, the outcome of which, I was diagnosed with a trapped nerve. It had nothing to do with Crohn’s, but he had to be sure.
In 2002, my Girlfriend and I went on a trip to Barcelona. I proposed, she accepted. My life was never better. My health wasn’t great, but much better than I had ever been.
By the start of the summer of 2004, the fistulae had returned with a vengeance. My Doc decided to put me on Infliximab with the 6-MP. This was a life saviour as I got married a few months later in the best health I’d experienced in 15 years. I was with the woman I loved, and I was able to enjoy life with her.
2 months after we got married, we found out we were expecting a baby. The joy we felt and the excitement cannot be overstated.
By week 24 our joy turned to despair. Our baby had not survived. This was the darkest period of both our lives. My wife was inconsolable. I will never forget him.
Slowly we returned to life. The Infliximab was still working for me, so my health wasn’t a great concern. I went through a 10 week cycle. 1 week before I was due an infusion, my symptoms would return until 1 week after the infusion it would be gone again.
October 2005, we found ourselves celebrating again. My wife was pregnant.
She was very well looked after by her hospital and GP. Scans nearly every other week.
During this time, I went for my usual infusion, but I suffered a seizure while getting the infusion. My Doc took me off the infliximab and instead prescribed Humira.
I have a fear of needles at the best of times, perhaps a throwback to having meningitis and the lumber puncture they conduct. But the thought of giving myself an injection terrified me. My local nurse kept me sane and would administer the jab each fortnight.
With 11 weeks left with the pregnancy (week 29), my wife went into labour. All we thought was “not again”.
After a hard time, our son was born and although he spent 7 weeks in the NNIC Unit, he’s grown to be our pride and joy.
Last year the fistulae started again in earnest. My Doc decided to up my prescription of Humira to once a week along with the 6-MP. This worked for a few months but the same old problem returned.
My wife and I decided that the time was right to try for a baby again. We’d been through a lot, but we felt we were ready again.
After 12 months, nothing was stirring. I was feeling evermore ill and one of the fistulae was basically tunnelled through my scrotom. I went for a sperm test and the results were very bad. They basically couldn’t count any sperm.
I returned to my Doc, and he decided that surgery was the only option left for me. I’m scheduled to go to the hospital in 2 week time but I will only see the surgeon then. Hopefully this last resort will be the answer to our prayers.
I’m sorry I’ve probably bored you all to death with my story, but I thought if I’m going to tell my story, it should be all the story.
Thanks again
