Crohn's Disease Forum » Your Story » The story so far...

06-25-2010, 10:40 PM   #1
New Member
Join Date: Jun 2010
The story so far...

Hi all!

Here's my story -- I can't say I've ever shared it in its entirety with anyone outside of my immediate family:

I was Dx in 1992, at the age of 11, after a number of gastro-related issues: abdominal pain, diarrhea, loss of appetite. Tests revealed a parasite, but once treatment resolved that issue, the symptoms didn't dissipate. I was referred to a local GI clinic and underwent some pretty traumatic tests for a kid. ("You're going to put what in where?!")

Tests revealed that it was Crohn's -- mostly contained within the ileum and cecum. I was started on a course of high-dose prednisone, and my symptoms improved. I was weaned off prednisone and put on sulfasalazine and azathioprine, which seemed to keep things stable... for a while.

Then things got worse!

I ended up going under the knife in 1993 for an ileocecal resection (with a bonus appendectomy while they were in there with a scalpel).

I was kept on low-dose prednisone and some other drugs for maintenance. Around the same time, I was started a regimen of NG feeding to give my poor gut a rest and to put on some much needed weight. This was a really tough time in my life because I was starting to hit puberty and was already feeling really self-conscious about my body.

Things were relatively stable until I had an episode of idiopathic intracranial hypertension in '04, which I attribute to withdrawal from steroids. Symptoms included absolutely terrible headaches and ultimately double vision from the increased pressure on my brain and ocular nerves. That was scary; I thought I had a brain tumor at the time.

Fast forward many years to 2010 --

I'm 29 and I've been on and off combinations of almost every medically approved treatment in Canada: 5-ASA, Imuran, prednisone, Entocort, 6-MP, Remicade, and currently, Humira.

Overall, I consider myself lucky, in that I've been able to lead a more or less normal life. My flare-ups are occasional and mostly manageable. I've been hospitalized twice for strictures; both times prednisone has helped, and I was able to taper and maintain a functional life with therapy that has less side effects.

At the moment I'm dealing with a couple of issues (one personal and one medical), and that's why, after a short Google search, I ended up on this forum. I'll post more about them in the General forum in a bit.

Everyone here seems like a very welcoming and supportive bunch, so I'm pleased to be here.

- Andy
06-25-2010, 10:51 PM   #2
Senior Member
Aura's Avatar
Join Date: Jun 2010
Location: Wellington, New Zealand
Hi Andy
Welcome to the forum. I'm new here too, and like you I had never shared my health with anyone really. I've had chrons for about 12 years now. Only been in hospital once. My current flare ended me up here on the forum (i have had it for a year, the flare). Now I am about to start treatment to send it in remission. I have found people here to be very supportive and friendly, and I am sure you will find the same. What I like about this forum is that its ok to discuss symptoms etc in depth and the support to find a way forward is great. Welcome aboard
06-25-2010, 11:17 PM   #3
donna martinez
Join Date: Jun 2010
welcome, andy. quite a story. keep your head up, you seem like a very positive and strong person. i am 27 years old and diagnosed about a month ago and honestly have no idea what i'm in store for. hearing you story gives me the courage to keep going and not give up.
06-25-2010, 11:30 PM   #4
New Member
Join Date: Jun 2010
@Aura: Thanks for your kind words. Good luck with your treatment and best wishes for a speedy remission!

@Donna: Thanks as well! Truth be told, I've always been pessimist. Lately, I've learned that pessimism and illness are not a good combination, and so I'm trying hard to turn that around. A positive mindset really does go a long way. Stay strong!

- Andy
06-26-2010, 01:23 AM   #5
Super Moderator
DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Hi Andy and

So glad you found us and thank you for sharing your story, what an honour that you felt you could tell it to us.

My daughter has had some similar experiences to you and at the same age. I certainly understand the difficulty of not only dealing with the disease but the onset of puberty as well. This truly is a wonderful and supportive place to be with a wealth of knowledge and experience. So hang in there, we are here for you.

Take care,
Mum of 2 kids with Crohn's.
06-26-2010, 06:55 AM   #6
To save time...Ask Dusty!
Dexky's Avatar
Join Date: May 2010
Location: Kentucky

My Support Groups:
Hi Andy and welcome. My son was dx at 10. I hope you stick around because I'm sure you have a wealth of knowledge about dealing with this at all the stages he will go through.

I hope things continue as normal as possible with this disease. Good luck.
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
06-26-2010, 07:22 AM   #7
Crohn's 35
Inactive Account
Join Date: Oct 2009
Hello Andy !! Welcome to the forum. Another Canadian Crohnie. Your story was alot lke mine but not at such a young age. It must of been so hard to cope and never mind peer pressure!

Not too many have remission on the biologics, but some are remarkable. I am waiting for the Cimzia to appear, even tho it may not help. Have to try anyways.

Everyone is great here, lots of info and some fun along the way. Glad you found us too. I know Toronto very well, I used to be a courier in TO for many years. I was in Brampton, for many years too. Now in Thunder bay region and in the sticks lol.

Welcome aboard!
06-26-2010, 07:50 AM   #8
Astra's Avatar
Join Date: Jan 2010
Location: St Helens, Merseyside, United Kingdom

My Support Groups:
Hi Andy
and welcome

Yes what a tough journey you've been thro! I'm so glad you're finally getting somewhere and hoping the Humira works for you
glad you found us, lots of support and friends here for you!
lotsa luv
Joan xxx


Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery!/profile.p...4208290&ref=ts

No-one should make you feel inferior without your consent!

06-26-2010, 10:55 AM   #9
pompeybird's Avatar
Join Date: Jun 2010
Hello Andy
Im also a newbie and have found this site so helpful , I was only diagnosed 2 days ago and found loads of useful info and advice on here so far

Welcome xxxx
Diagnosed with CD 24/06/10
Also suffer from
Ankylosis Spondalitis
B12 Deficancy

Would love people to not just see me as a walking illness / disease , im more than that

My Facebook feel free to add me!/pompeybird
06-26-2010, 01:25 PM   #10
Chief Dandelion Picker
Entchen's Avatar
Join Date: Mar 2010
Andy - hi and welcome!
Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
06-28-2010, 04:12 PM   #11
Regular Joe
Senior Member
Regular Joe's Avatar
Join Date: Sep 2009
Location: Cleveland, Ohio
Hi Andy,

Great to have you onboard. Your words and experiences have already helped people you don't even know yet. It's especially important for those awaiting a diagnosis and those who just found out, that this disease doesn't mean the end of life. Lots of changes and adjustments plus limitations. But you know what? I'm 51 and I've always had limitations, but so often I never accepted them. Crohn's has a somewhat painful way of causing us to put our personal and mental health first. But it's worth the time and effort because how many of us have put off and put off what we knew we should have done.

Great story and thanks for sharing your hope and positive attitude.

Here's one for the pessimist inside you (and all of us).

The optimist sees the glass as half-full.
The pessimist always looks at the glass as half-empty.

The engineer, on the other hand looks at the glass as being twice the size it should have been!
"When I change the way I look at things, the things I look at change."

Crohn's Disease: November 2002
2G Sulfasalazine
60mg Bentyl (dicyclomine)
06-28-2010, 04:21 PM   #12
Senior Member
Sophia's Avatar
Join Date: Jun 2010

My Support Groups:
Hi Andy,

Great to read your story. I'm also new here, and new to sharing all this personal stuff with other people. It's nice to know we are not alone as young chronic Chronies around the world. Hopefully we'll be able to help and support each other!
- Sophia

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