I am curently a 33 year old Property Lawyer working in West London.

I was originally diagnosed with Crohn's at the age of 6. I remember suffering from constant stomach cramps until eventually my mother took me to see the GP. We got referred to Charing Cross Hospital and my nightmare began.

I remember my first examination vividly. Lying on the hospital bed, a little boy of six, shaking with fear and pain as the Doctor inserted a camera up my backside. Nothing conclusive was seen so I was sent away and told to come back if the symptoms persisted.

For two years I kept my pain a secret. I was petrified of going through that examination again so whenever I got a cramp I would simply grit my teeth and force a smile. My mother often had no idea of jsut how much pain I was in.

Eventually, at the age of 8, I could stand it no longer and I was referred back to Charing Cross. This time they gave me a barium enema. How the hell does an 8 year old cope with the trauma of a barium enema?!

From that point onwards from the age of 8 up until 17 all I knew was pain, hospital visits, tests and drugs. My growth was stunted as a result of steriods and often I now see a shadow of the man I should have been whenever I look in the mirror. I have a lot of hate for the Doctors who I feel destroyed my life.

At 17 years old I developed an abscess on my backside. I was terrified and didn't tell anybody. I left it for about 3 months. It would swell to the size of a golfball before it would pop spilling blood everywhere. The opening would then heal..and it would swell again. I remember sitting in my 6th form classroom one day when the abscess popped. I rushed to the toilets and saw my underwear soaked with blood.

I was taken to hospital for emergency surgery. When the Doctor saw the size of the abscess she gasped in horror. The abscess was surgically removed and after 3 weeks in hospital I returned home.

A year later on the way to college I suddenly doubled up in pain. Again, I was rushed to hospital. This time they decided to operate to remove the stricture and a large portion of my colon. They also fitted me with the bag in a seven hour life or death operation. I was 18 years old and I felt my life was over. Many times I wished I had died on that table. How does an 18 year old with a bag even contemplate meeting a partner? When I should have been out with friends enjoying myself I was sitting at home on my own. Thoughts of suicide? I know this old friend very well...

My only option was to turn to recreational drugs to try and dull the harsh edges of reality. I became a heavy cannabis smoker and to this day haven't kicked the habit. At age 20 the bag was removed and for a few years I was pain free. I wasn't healed, I still had to rush to the toilet up to 20 or 30 times a day but the horror of the bag was gone.

Fast forward 10 years to the present day. The pain in back. The passing blood is back. I have two options; either ignore it and live my life to the full, however short that life may be, or allow the Doctors free rein over my body once more.

I cannot go down that route again. I would honestly rather die. I would trade in a lifetime for just one afternoon of life as a normal man.

I am not sure that anything that I say can make you feel any better but I do want you to believe that others are with you in spirit. I am so luck that I have a very supportive husband as I know that if I was on my own I would have contemplated taking my own life because I have felt so useless and pathetic. Have you tried a different doctor/hospital? I had problems with the first hospital i was admitted to and actually managed to change and have had alot more support since then.  Please keep in contact and try not to give up hope.

Hi

Thanks for the reply.

TBH I'm not after sympathy or anything like that. I'd really like to make a few friends on here and perhaps offer support if possible. If I can make some good come from my ordeal by helping others at least that's something

Oli, what a distressing story. I get an urge to go hug the little 6-year old you but I think I may be 27 years too late for it to be much help.

I seem to have been remarkable lucky (so far!) on the pain front. While the photos of the inside of my bowel give me nightmares and there is often a distressing amount of blood in the toilet bowl it rarely seems to result in more than mild stomach pain. I've had three colonoscopies (and an endoscopy but that was before they worked out what end the trouble was ) and none of them have been too bad. For the first two I was given some sort of pre-med that I must have been unusually susceptible to as I was away with the faries for the whole procedure and some time after. I don't remember anything much other than lying down and watching all the pretty colours in my head. The third one was a month ago and was a bit of a shock. The consultant just said "Let's have a quick look then" and I was thinking what, he's got a camera in his pocket? Sure enough that was almost exactly what he had, it was only enough to look at the lower bowel but that was what he wanted to see. It was a bit of a shock, undignified and uncomfortable but not really painful even so.

Both my parents were GPs so I guess I've always had a kind of blind faith in medicine, doctors and hospitals. While this hopeless optimism might be a bad thing in some ways, it does mean I tend not to get anxious about treatments, however unusual or humiliating they might seem. Anyway I hope this flare-up is soon under control again, it sounds like until this your life has been sort of on track again.

Hi Nigel

Thanks for the reply. I guess I have good days and bad days. At the moment I'm hating the world and everyone in it!! lol

It took a lot to write all of that and it did raise the odd tear as I did so but I'm glad I did. What people without crohn's never understand is that sufferers never want sympathy. Most of the time we are just crying out to talk to somebody who understands.

I'm really pleased I found this forum and I hope I can help a few others in some way. I'm a bit of poet and wannabe author. I wrote this a little while ago..I think everyone here can relate to my words.



With a Stroke of a Pen


As I sit in the Hospital waiting room I try not to cry,
To young to understand and nobody has explained to me why,
Am I being punished? What was my crime?
I ask myself these questions time after time,
Gripping my mother's hand tightly, squeezing it hard,
I know the pain that consumes me is breaking her heart,
Looking up at her face I give her a brave smile,
Pretend I'm fine when all the while,
I battle to suppress the panic, the horror, the fear,
The unbearable want to simply get out of here,
Trying to be strong, trying to be her little soldier,
I'd rather be dead but this I can never tell her,
The Nurse calls out my name and the time has come,
To enter the surgeon's office and to learn the outcome,
The countless tests what have they revealed?
Am I at last to be finally healed?
The surgeon looks up and smiles at us warmly,
I see his Devil's teeth and I return his smile coldly,
"We must operate on your son, but do not worry!
I've done this before and you won't be sorry!
It's a standard procedure with only one minor drawback,
Your's son's innocence is now mine, and his future is black,"
I look up at my mother and I listen to her words,
"This is for your own good, they must cut out your diseased innards",
To young to argue I do as I'm told,
I sign the surgeon's consent form and my blood runs cold,
With a stroke of a pen my dreams have been stolen,
And I leave the surgeon's office, dejected and broken.

i AM SO SORRY TO HEAR YOUR STORY, I TOO AM IN WEST LONDON AND GO TO EALING HOSPITAL AND THEY HAVE BEEN GOOD, EVEN OFFERING A SPECIALIST NURSE TO CONTACT.
ARE YOU ON ANY MEDICATION? I TAKE AZATHIAPRIN AND ASACOL WHICH SEEM TO HELP. ALSO ALOE VERA JUICE HELPS A LOT WITH BLOATING AND WIND WHICH ARE MY MAIN SYMPTOMS IN BETWEEN ACUTE EPISODES. HOPE THIS HELPS, GOOD LUCK

What a great poem Oli, I never expected to read a poem about Crohn's! It's a good illustration of how sometimes poems can convey meaning better than bald statements of fact. I write as well occasionally but tend more towards Science Fiction although I wrote a prose poem once, umm it was about snow though, not Crohn's. This probably isn't the most relevant place to post it, there's probably a discussion board about snow out there somewhere...

What a fab poem, the words are so accurate, well done, i love reading poetry, so any time you have some more please post them, or pm me Good luck with the crohns  tc xxxsuexxx

Thanks for the kind words. I never get bored of compliments!! lol

TBH this is the only one I've written which is relevant to Crohn's but I run a general discussion forum where more of my stuff is posted. Im still trying to get "noticed," as it were!!

I have a nice little bunch of people so if anyone here would like to make a few new nice online buddies for everyday chit chat you're more than welcome to sign up

It goes without saying that nothing that is ever posted here would ever be mentioned over there.

http://angelsndemonsforum.forumotion.net/forum.htm

Quoted from Emma1510

i AM SO SORRY TO HEAR YOUR STORY, I TOO AM IN WEST LONDON AND GO TO EALING HOSPITAL AND THEY HAVE BEEN GOOD, EVEN OFFERING A SPECIALIST NURSE TO CONTACT.
ARE YOU ON ANY MEDICATION? I TAKE AZATHIAPRIN AND ASACOL WHICH SEEM TO HELP. ALSO ALOE VERA JUICE HELPS A LOT WITH BLOATING AND WIND WHICH ARE MY MAIN SYMPTOMS IN BETWEEN ACUTE EPISODES. HOPE THIS HELPS, GOOD LUCK

Hi Emma

I live in Hanwell which is just down the road from Ealing Hosp!

I actually requested to be referred to Chelsea & Westminster. I find it's a much nicer, cleaner and modern hospital. My specialist is Dr. Westaby and he is a really really nice man. Very understanding and always willing to discuss new treatments etc etc

I'd definitely recommend him 100% to anybody who can get referred to him.

Hi Oli, Welcome fella

Hi Sparkyh

Nice to meet you. Thanks for the warm welcome

This is another one of my works...lol

I've Often Wondered


I've often wondered why,
There's so many different kinds of poo,
Runny ones, stodgy ones,
And nutty ones too,
Some have bits of sweetcorn,
Others bits of onion,
Where did these vegetables come from?
I don't remember eating them,
Why is some poo yellow?
Why is some poo green?
And I'm sure my poo last night was purple,
Or was that just a dream?
And what about those phantom poos,
The ones that never come?
The ones where you sit all day long,
Just waiting for it to come?
Then you have those kinds of poos,
That never seem to stop,
The ones that fill up the entire bowl,
All the way up to the top,
Then you have the mystery poos,
Where you think you've passed a lot,
Only when you look inside the bowl,
You only see a tiny plop,
It's time for me to go now,
My story is almost done,
THe only thing left to do,
Is to clean my dirty bum.

Haha, another rhyme appropriate for the forum

I like that one too, keep them coming,  Makes me smile, and we could certainly do with alot of smiles around here TC xxxsuexxx