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

That made me smile alot thanks x

Thanks. Glad you enjoyed them.

Here's another funny one I wrote..(If you want me to stop let me know! lol)

The Morning After


Tis the morning after,
The night before,
I open my eyes slowly,
And find myself sprawled on the floor,
Vague memories of dancing,
Of Tibetan midgets and whores,
Fill my mind,
As I promise never again nevermore,
What did I get up to?
I have no clue,
Then with gripping terror,
I notice I now have a tattoo,
Who is Sonia?
Where does she fit into my life?
Looking at the tattoo,
It seems she is now my wife,
Orange juice from now on,
I make this solemn oath,
As I stagger to the kitchen,
To make some dry toast,
The time for apologies,
Must now begin,
The only question that remains,
whose damn house am I in?

Another one made me smile lol ty XXXSUEXXX

Hi Oli

Hope your feeling brighter today. Know how you feel about the bag I had one for 22 weeks and 3 day (not that I was counting), last time i had a op they wanted me to sign to say I would have a bag if need.  I refused, don't know if I really mean it but said I would rather die than have a bag again.  Sorry to all those who live happily with a bag, not being disrespectful just find it hard to get my head round it.  Even though when I had a bag I was completely pain free.

Good luck
#
Kim

Hi Kim

Thanks for the words xxx Its good to know someone else understands where I'm coming from. Having a colostomy at 17 destroyed my life physically and mentally. It took almost 10 years for me to regain my sanity. The thought of going through all that again really is too much to bear.

Now I have the worry of bowel cancer too. I'm 33 years old and all I have to look forward to is darkness, pain and misery. I've never known happiness. I've never known love. From age 6 to present the only friend I have ever had is suffering.

I don't know how much longr I can go on.

Alone at night,
Lying in bed,
Demons plague my soul,
And I wish I were dead.

As I slip deep into slumber,
Lucifer awakens,
Chortles with glee,
And piles more weight on my shoulders.

I dream of a life,
Cursed and damned,
Trapped forever,
In a hellish land.

I am told dreams are just dreams,
They have no bearing on fate,
But what is there to do,
When you are not dreaming but awake?

Jezzzzzzzz Oli

Bought a tear to my eye that one did, makes me realise that what i am going through probably isnt to bad. Although the constant pain, the constant bouts of diarrhoea and the constant bouts of throwing up arent right.

Keep hanging in there

Ian

Hi Ian

I'm sorry to everyone if I sound a bit dark or sorry for myself. I really don't want to scare people unnecessarily so I apologise if I have. Maybe I should try and lighten up a little.

Hi Oli

No need to be sorry. With something like Crohn's people need to know the good sides and the dark sides so they can plan for what might happen and if it doesnt happen then that is a real bonus.

Hang in there

Ian

Yep Oli don't fret about it, if you can't tell people here how you're feeling then where else can you go. You've been through a lot and it'd be a bloody miracle if you were always cheerful. In fact your ability to make poems about it both serious and amusing reminds me of a kids programme my daughter used to watch called Ruby Gloom. The theme song goes something along the lines of "Look on the bright side of the dark side". I hope you have more of the good days than the bad ones, I guess that's all most of us can hope for!

Nigel

Cheers guys

Btw..what the heck happened to the forum?!

Frank "didn't touch a thing" according to Twitter...a likely tale I say

lol

He probably pushed the big red button marked DO NOT PRESS! Gets people every time...

LOL

Bet he is sat there saying "It wasnt me! i never touched a thing

Hi Oli,

Thanks for the Pooey Poem, made I laff.

Don't give up fella, there's plenty of people routing for us all out there.  With every year, treatments change, attitudes change, there's hope for us all (I hope!!!!!).

I'm not quite sure how you can live your life to the full without treatment, so perhaps give the treatment a chance, even if it's the last chance you give it.

I found this site when I was feeling very down, cried when I typed out my problems, and with the support offered here, felt better for it, I know you will find honest support here, people can understand the dark days, feel for you when you are down, and you can write the poems to pick us up!!!!

Take care Oli

Julie

OMG I've just read your poo poem and it had me in stitches!  What a story, my Crohn's started with a huge abscess on my bum and it was horrendous but the thought of a doctor looking at your bum at such a young age is awful, at least as you get older and more used to this the embarrassment goes a bit x

Hi Oli,

I'm sorry I've not had chance to thoroughly read everyones replies, so I'm not sure if anyone has already asked - but have you tried other kinds of treatment such as Infliximab or Humira? Or would you not consider another long term course of steroids? Also please look at this website and use google to learn about this medication, it has definitely given me hope! It's just difficult to find a GP who will prescribe, as I'm finding out, but still worth learning about: http://www.ldnnow.co.uk

Keep your chin up http://crohns-disease.org.uk/forum/Smilies/smiley.png

Nicole

Hi new here
Had a hell of a year n a bit started offshore with appendix took 5 days to get me back which in this day and age is unbelievable after serving 18 years as marine with out a scratch lol I had the appendix removed but still in pain so after bevvy of scans etc they found a constriction in the bowel I was then sent home to get strength back for 2 weeks then back in to hospital for Right hemi  after the op was hell vomitting facel matter and feeling that was it this carried on for 12 days Istarted slowly feeling better was in for further 18 days due to complication which set me back  Ithen returned home weak and 3 stone lighter which being gym nut was hell its self lol Iwas offwork for 5months feeling guilty as hell then returned on pt time basis which to say the least was tiring started getting back to fitness passed offshore medical ready to go make the money again  then BBBBOOM  another damn attack more tests more being starved another 2 ops to see if anything and again the post op vomitting and pooing bed which I felt disgusted with self Ieven changed it myself as so disgusted with self  kept in for 3 weeks home for xmas right here we go again stated back at work Feb getting on great tired but happy  till bbbbbbbboom again 3 weeks ago ended back in to be practically be told nothing wrong ust constipated enemas etc nothing so sent home now in utter agony after eating starting to lose weight again off work acid n stomach noises along with nausea  saw GI doc hes recommended scopes n biopsies was speaking admitting me again I am getting to end of teather Icant sleep or nothing   some one help !!!!!!!!!!!!!!!!!!!!!!!!!

well, after really stuggling to get up out of bed this morning, I have read the poems and had a laugh, through the tears that is. I've been on the Crohns Journey for nearly 6 years, 2 re-sections and pretty much all the drugs they can throw at me, I'm now not taking anything and feel as low as you could possibly feel, last night, yes, I really did think, well, if I was dead I wouldn't be going though all this!!!
My biggest struggle is the lack of understanding, being told its my own fault for eating food I know I shouldn't eat. How do you explain to those around you who don't have this to carry around all day every day, how it feels to be deprived of the foods you love, to only be able to tolerate Fortisips. Some days I get very rebellious and throw a chippy tea down my neck, to then spend the whole night in the bathroom.
Whilst I was on Infliximab I initially felt great, over time though I began to pick up every virus, infection etc...... that was going, so consultant wants to clear my system of all the drugs and re-test me, to see if the Crohns has become 'Live' again.
My experience of the Gastro consultants in the north west has been a positive one, with me having access to a gastric nurse daily. I used to live in Dorset and even after a MRI scan they failed to diagnose me.
I've got another consultant appointment next week, so hopefully a light may get turned on at the end of the very long tunnel i'm currently in.
I've stopped thinking 'why me?' but it doesn't stop me getting angry and frustrated at what I've been dealt, one doctor was very shocked when I said I would rather lose a limb than live with this disease, I've even asked for a bag, as it would be more tolerable than the daily restrictions, pain, embarressment etc...
Feeling very sorry for myself!!!!