My Extremely Luckily Boring Crohns Story - Crohns Disease Forum - Support group and forum for IBD, Ulcerative Colitis and Crohn's Disease

01-18-2010, 11:04 PM

Hello members! After having such a warm welcome I thought i might as well write out my story after being diagnosed with crohns in 2003 (it's either this or revision

).

I was 13 at the time.

First symptoms:
Tiredness- I remember falling asleep after coming home home school everyday, I would brag about it to my friends as being lazy is the new cool thing these days....
Loss of appetite - in a month or two, Just not eating all of my dinner escalated into not eating much at all and just the smell of food would make me feel nauseous.

My fear:
Then came the pain, that distinct pain you get when you do ANYTHING, it's hard to describe but it's one of my worst fears. I hate that searing, sharp yet long pain you get in your gut. And when i ate anything, it would make me into a screaming wreck, rolling around on the floor asking for help, crying everyday.

A&E:
I have only been taken into A&E twice because i begged to go into hospital. I was given codiene the first time and morphine the second time, on both occasions I woke up the whole ward with my screams, the pain was UNBEARABLE!! Awful time in my life, apparently the drugs stop your gut working or something, but whatever it was beit an allergic reaction, it was HORRIBLE!

The Doubts:
A paeditrician asked me whether i wanted to stay in hospital, i said yes. (I wanted to be cured of whatever i had) He then asked me about my older brother and sister, i then started crying because i was exhausted and jealous that they are so successful and normal yet i'm here, not eating and screaming with pain. He then suggested that we go COUNSELLING!
Ever since that meeting with the paeditrician, my father would shout at me whenever i'd scream in pain, telling me to stop making it up.
My whole family thought i was attention seeking. I remember my sister saying "stop this ****, you're just attention seeking and noone believes you, just get up off the floor!".
I even thought i was going crazy, that subconsiously i was making up this pain i felt in order to get attention, i spent a lot of days on my bed, crying and begging at myself to stop this.

The Tests:
At a private clinic I had tests within the space of 4 months:
Endoscopy: Ulcers in stomach and osophagus
Colonoscopy: Ulcers in Colon
(This is the silly part)
Endoscopy & Colonoscopy: Ulcers still there (obviously, she did the tests again, to this day i hate her for doing that, unnessesary and i bet she did them again for the money??)

The clincher was the barium meal, when FINALLY the consultant thought it looked like crohns but wasn't sure(?!?).

Diagnosis:
The week after i went to london to see a IBD consultant who immediately after looking at the pictures said "yep this is classic crohns". FINALLY it has a name! haha! I was happy yet sad that i have a life time disease to manage, which will render me to an extent for ever.

Treatment:
I had to do 6 weeks of no food, but shakes- then 6 x ascacol but that didn't work..
Did another 6 weeks no food- then did ascacol with azathioprine.. BINGO!
They've now changed the ascacol to pentasa (i don't know why).

Since Diagnosis I have:
Doubled my weight- 43 into 86kg
Mid-Essex Champ in Rugby
Double UKSG winner in Volleyball (Central England)
4 National Cups in Volleyball
8 England Juniors Caps in Volleyball

After that year I have had no serious flare ups of crohns, my best advice is whenever you feel a slight tinge and it gets worse... spend the next day or two drining calorie/vitamin enriched drinks instead of eating- it's a small price to pay!

Have a great day and good luck on your own adventures!

Peaches · 01-18-2010, 11:09 PM

Well, I think that deserves a formal

there Unit! Glad you have had large success in keeping your disease quiet for so long. And WOOHOO on all those championships - holy cow!!

imisspopcorn · 01-18-2010, 11:19 PM

unit...

Awbrey · 01-18-2010, 11:53 PM

Love your story put a smile on my face

tamesis · 01-19-2010, 03:57 AM

Welcome Unit, glad you found us! Hopefully you can find a great support system, with loads of information around here.

shazamataz · 01-19-2010, 09:05 AM

Welcome to the forum

beth · 01-19-2010, 11:55 AM

Welcome Unit!

farm · 01-19-2010, 12:05 PM

chelli · 01-19-2010, 12:42 PM

Jettalady · 01-19-2010, 01:27 PM

Welcome unit, your story was far from boring. Not everyone here has to be in dire pain, it is good to here inspirational stories. Thanks for joining us.

merrywidow · 01-19-2010, 02:18 PM

welcome aboard the good ship crohns forum

pain in the butt · 01-21-2010, 02:06 PM

Welcome

Samantha · 01-21-2010, 02:34 PM

Welcome Unit, it's nice to have you on here and congrats on all the achievements!

Lishyloo · 01-21-2010, 06:51 PM

Welcome Unit!

Your story resonates with me.... when I was 8 years old our whole family was subjected to counselling because I was constipated... the pediatrician had discovered that we were a single parent family and clearly that was why I couldn't poop.... family counselling was great(not!!) we only went once, my dad never showed and no one had anything to say.... I just kept being asked about what I was "holding in".... I was only holding in poop.... and not deliberately, and I wasn't remotely bothered about the absent father.... they didn't get it...

Perhaps if they weren't so blinkered about the apparently devastating awfulness of single mums, I would have been diagnosed with Crohn's before my 36th birthday!

Well done on all your achievements! You are inspirational to us all!

Lishyloo x

01-18-2010, 11:04 PM	#1
Unit Guest Posts: n/a	My Extremely Luckily Boring Crohns Story Hello members! After having such a warm welcome I thought i might as well write out my story after being diagnosed with crohns in 2003 (it's either this or revision ). I was 13 at the time. First symptoms: Tiredness- I remember falling asleep after coming home home school everyday, I would brag about it to my friends as being lazy is the new cool thing these days.... Loss of appetite - in a month or two, Just not eating all of my dinner escalated into not eating much at all and just the smell of food would make me feel nauseous. My fear: Then came the pain, that distinct pain you get when you do ANYTHING, it's hard to describe but it's one of my worst fears. I hate that searing, sharp yet long pain you get in your gut. And when i ate anything, it would make me into a screaming wreck, rolling around on the floor asking for help, crying everyday. A&E: I have only been taken into A&E twice because i begged to go into hospital. I was given codiene the first time and morphine the second time, on both occasions I woke up the whole ward with my screams, the pain was UNBEARABLE!! Awful time in my life, apparently the drugs stop your gut working or something, but whatever it was beit an allergic reaction, it was HORRIBLE! The Doubts: A paeditrician asked me whether i wanted to stay in hospital, i said yes. (I wanted to be cured of whatever i had) He then asked me about my older brother and sister, i then started crying because i was exhausted and jealous that they are so successful and normal yet i'm here, not eating and screaming with pain. He then suggested that we go COUNSELLING! Ever since that meeting with the paeditrician, my father would shout at me whenever i'd scream in pain, telling me to stop making it up. My whole family thought i was attention seeking. I remember my sister saying "stop this ****, you're just attention seeking and noone believes you, just get up off the floor!". I even thought i was going crazy, that subconsiously i was making up this pain i felt in order to get attention, i spent a lot of days on my bed, crying and begging at myself to stop this. The Tests: At a private clinic I had tests within the space of 4 months: Endoscopy: Ulcers in stomach and osophagus Colonoscopy: Ulcers in Colon (This is the silly part) Endoscopy & Colonoscopy: Ulcers still there (obviously, she did the tests again, to this day i hate her for doing that, unnessesary and i bet she did them again for the money??) The clincher was the barium meal, when FINALLY the consultant thought it looked like crohns but wasn't sure(?!?). Diagnosis: The week after i went to london to see a IBD consultant who immediately after looking at the pictures said "yep this is classic crohns". FINALLY it has a name! haha! I was happy yet sad that i have a life time disease to manage, which will render me to an extent for ever. Treatment: I had to do 6 weeks of no food, but shakes- then 6 x ascacol but that didn't work.. Did another 6 weeks no food- then did ascacol with azathioprine.. BINGO! They've now changed the ascacol to pentasa (i don't know why). Since Diagnosis I have: Doubled my weight- 43 into 86kg Mid-Essex Champ in Rugby Double UKSG winner in Volleyball (Central England) 4 National Cups in Volleyball 8 England Juniors Caps in Volleyball After that year I have had no serious flare ups of crohns, my best advice is whenever you feel a slight tinge and it gets worse... spend the next day or two drining calorie/vitamin enriched drinks instead of eating- it's a small price to pay! Have a great day and good luck on your own adventures!

01-18-2010, 11:19 PM	#3
imisspopcorn Punctuation Impaired Join Date: Aug 2009 Posts: 5,945	unit... __________________ ~~~~~~~~~* Instead of hiding in the darkness of a grey cloud, why not look for the silver lining?

01-19-2010, 09:05 AM	#6
shazamataz Senior Member Join Date: Aug 2009 Location: New Zealand, Dunedin Posts: 3,672	Welcome to the forum __________________ Farting is FUN

01-19-2010, 11:55 AM	#7
beth Senior Member Join Date: Mar 2009 Location: Cambridge, UK Posts: 881	Welcome Unit! __________________ Diagnosed Jan 09 Elemental 028 - 3 weeks of hell Azathioprine/6MP/methotrexate - not tolerated. 3 EUA's fistula + seton. then -seton +fibrin Humira junkie since Dec 09

01-19-2010, 12:05 PM	#8
farm Captain Insaneo Join Date: Jun 2009 Location: NC Posts: 6,359	__________________ Have you sharted lately? (Just wait.)

01-18-2010, 11:09 PM	#2
Peaches Senior Member Join Date: Aug 2009 Location: North Carolina Posts: 2,994	Well, I think that deserves a formal there Unit! Glad you have had large success in keeping your disease quiet for so long. And WOOHOO on all those championships - holy cow!!

01-18-2010, 11:53 PM	#4
Awbrey New Member Join Date: Jan 2010 Location: Bend Oregon Posts: 16	Love your story put a smile on my face

01-19-2010, 03:57 AM	#5
tamesis Senior Member Join Date: Dec 2009 Location: B.C. Posts: 1,720	Welcome Unit, glad you found us! Hopefully you can find a great support system, with loads of information around here.

01-19-2010, 12:42 PM	#9
chelli Senior Member Join Date: Jun 2009 Location: Colorado Posts: 190	__________________ Chelli Diagnosed 3/2009 Methotrexate 12/2009

01-19-2010, 01:27 PM	#10
Jettalady Your Story Forum Monitor Join Date: Oct 2009 Location: North Western, ONT Posts: 3,604	Welcome unit, your story was far from boring. Not everyone here has to be in dire pain, it is good to here inspirational stories. Thanks for joining us. __________________ Formerly: Pen Symptoms of Crohn's 35 years DX in 1993 2 resections, 1993 & 2003 Been on too many drugs to list. Methotrexate- didn't work. Quit June 2010 Nexium.& odd Flagyl, VSL#3 900 Billion probiotic bacteria & Pentasa, 3000mg daily ...winging it now.

01-19-2010, 02:18 PM	#11
merrywidow mum with a dogdy tum Join Date: Oct 2007 Location: eastbourne england Posts: 3,099	welcome aboard the good ship crohns forum __________________ crohns diagonsed dec 12th 1997 life is like a loo roll, the nearer to the end you get the faster it goes. memories are what makes life, life is what makes memories, make them good sharon x

01-21-2010, 02:06 PM	#12
pain in the butt Senior Member Join Date: Jan 2010 Posts: 227	Welcome

01-21-2010, 02:34 PM	#13
Samantha Member Join Date: Jan 2010 Location: South Africa Posts: 97	Welcome Unit, it's nice to have you on here and congrats on all the achievements! __________________ Diagnosed Sept 2006 Currently on (just starting) 500mg Pentasa twice a day, Entocort enemas, Probiotics, Omega and Multi vits. Previously on 30Mg Prednisone, Asacol 2 a day, Asacol enemas, Entocort tablets, Azapress ( made me so sick).

01-21-2010, 06:51 PM	#14
Lishyloo Senior Member Join Date: Jul 2009 Location: Hertfordshire, UK Posts: 617	Welcome Unit! Your story resonates with me.... when I was 8 years old our whole family was subjected to counselling because I was constipated... the pediatrician had discovered that we were a single parent family and clearly that was why I couldn't poop.... family counselling was great(not!!) we only went once, my dad never showed and no one had anything to say.... I just kept being asked about what I was "holding in".... I was only holding in poop.... and not deliberately, and I wasn't remotely bothered about the absent father.... they didn't get it... Perhaps if they weren't so blinkered about the apparently devastating awfulness of single mums, I would have been diagnosed with Crohn's before my 36th birthday! Well done on all your achievements! You are inspirational to us all! Lishyloo x