Hi everyone

[Squadinho]

Hey guys. I'm Kurt and I'm 20.

I was recently diagnosed with Crohn's, back in June 2010 to be precise.

It was a long battle to actually get anywhere though. It started back in October 2009, I was suffering bad pains in my abdomen, and went to the doctors and was told it was stress related. I kind of accepted this as I had lost my job recently.

Anyway, these pains went on and on till and around March 2010 I went back to my doctors (was now working again at this point) and was told I had indigestion and was given some tabs. These didn't work and gave me my first bout of diarrhea. After about two months of trial and error on different tablets, he concluded that I had food poisoning. At this point I gave up and just worked through it and stopped seeing him.

From this time I started to lose weight (I was a big boy, around 16 stone) and come the beginning of June I was suffering from fatigue. I would literally get home from work at about 5pm and go straight to bed and sleep till 7am. I wasn't hungry so was barely eating, and obviously the diarrhrea started to creep in.

Eventually I decided to go back to the doctors, and was told I would have to wait several months to see a specialist. Luckily my Nan used to work in the hospital knew one of the IBD consultants personally, so I was able to push in. I was fastracked for barium meal and was diagnosed with Crohn's straight away.

I was put on Prednisilone (sp?) for 6 weeks and they seemed to work. Halfway through I was also put on Azathioprine, but as I was coming of the steroids I became ill once again, even worse than I was before.

I was put back on the steroids, an 8 week course (of which I have been on for 5 weeks) and I'm feeling great. Unfortunately my last blood tests showed that my Crohn's is starting to flare again, so my consultant has advised me that infliximab is my next best bet for treatment.

Apparantly surgery isn't viable for me at the moment because normally people at my age have Chron's just around the terminal ilium. Unfortunately, I have mine in four different sections, and it would practically mean removing the entire small intestine to get rid of it.

So I'm having a colonoscopy on Monday to check the 'full extent' and will hopefully be starting the infliximab treatment within the next month.

In total I've lost around 6 stone, I'm 10 and a half stone now and was 16st back in March.

Thanks for reading.

 

[DustyKat]

Hi Kurt and :welcome:

I'm glad you found your way here. There's loads of people on here around your age so you will be a most welcome addition plus heaps of info and support to boot!

Good on Nan for getting for fast tracked! You may find that for many people here their course of Pred is longer that what you have had. What dosage are you on?

Wow, that's a lot of weight you have lost. Crohns is typical in skipping areas of bowel and that can be one of the ways they distinguish it, diseased area then healthy bowel, diseased area and so on. The aim would be to heal you up as much as the can and then if there was a problem area, like your terminal ileum, they may consider surgery.

Are you taking any supplements like B12 or anything like that?

Good luck with your colonoscopy and welcome aboard!

Take care,
Dusty

 

[rottengut91]

Hey Kurt
Welcome aboard. Glad to hear you currently feeling well, but sorry to hear things may be flaring up again. Hope the colonoscopy goes well. Maybe the pred will nip the inflammation before it gets out of hand. You've lost quite a bit of weight. Hopefully the inflixamib will help you gain some back. Just remember not to turn sideways in the wind, you just might blow away!!! Well, maybe not, just trying to make a funny.
Like Dusty said, there are several young people on here. I'm sure some will be around soon. Browse the threads, feel free to offer any info. Hope to see you around. Oh, and not topic is off limits here man, we've been through it all, you know.

 

[Squadinho]

Hi guys, thanks for replying.

On my first course of Pred, I was started on 30mg, reducing by 5mg every week. When I got to around 10mg things started to flare, and then when I came completely off them, it came back with vengeance!

This course I started on 40mg, reducing by 5mg every week, so I'm currently on 15mg of Pred, and things are starting to flare.

Reading my Barium report, which my Doctor was very kind to give me, I have Jejunal, ileal and caecal Crohns with possible interloop fistulation around the terminal ileum.

Are you taking any supplements like B12 or anything like that?

I'm not taking any B12 supplementation. I'm on the usual Calcium supplements you take when you're on Pred, though.

Just remember not to turn sideways in the wind, you just might blow away!!! Well, maybe not, just trying to make a funny.

Yes! I've actually noticed I get a lot colder than I used to, too!

I'm not overly concerned about my weight, which may sound stupid considering I've lost a fair bit. I was overweight, any my GP said that actually, given my height I'm actually at my 'ideal weight'.

Once again, thanks for your replies.

 

[Dexky]

Welcome Kurt! I hope you can get off the pred and find a maintenance med that works for you!! Has your weight leveled off? Good luck!!

 

[Squadinho]

My weight has levelled off on this course of Pred. Have been pretty stable for the past 6 weeks, obviously gaining and losing a kg here and there but always around the same figure.

 

[Dexky]

That's good! I worry about pred dependency though. I hope they can get you off of it. I'm sure I don't have to tell you that though.

 

[Astra]

Hi Kurt
and welcome fellow Brit

I'm wondering if you're flaring cos the Pred hasn't had much time to work, I was on 40mg for a month, then tapered by 5mg every MONTH, not week. It took 6 months, but it healed me good, I also had an infection in my terminal ileum.
You're a lucky boy! We have a fellow Welsh member who's been refused Infliximab! It's a postcode lottery!

here have a read of the Remicade (infliximab) Club
http://www.crohnsforum.com/showthread.php?t=4544&highlight=remicade+club

good luck with the scope!
Joan xxx

 

[Lucy]

:hang::getwell:Hello Kurt and welcome to the forum. Your so young to have to worry about being sick with this. Lots of good info here as well as great people. I too hope you can find a medication for maintance and get off the pred. I'm gad you were able to get in quicker and didn't have to suffer so long. Hang in there and hope you keep us updated.

 

[Squadinho]

That's good! I worry about pred dependency though. I hope they can get you off of it. I'm sure I don't have to tell you that though.

Yeah I think the aim was for the Aza to kick in once I came off the Pred, but unfortunately it isn't. The doctors don't seem to be too keen on my being on Pred for long periods of time. I find it does affect me slightly too (sleeping issues, mood swings etc), so if I can get off it I would be more than happy.

I'm wondering if you're flaring cos the Pred hasn't had much time to work, I was on 40mg for a month, then tapered by 5mg every MONTH, not week. It took 6 months, but it healed me good, I also had an infection in my terminal ileum.

Possibly. The blood results I had taken about 3 weeks ago, when I was on a higher dose, showed my CRP to be 5. On Wednesday it was 35, and before I started back on Pred it was over 120, so it deffinitely works for me.

You're a lucky boy! We have a fellow Welsh member who's been refused Infliximab! It's a postcode lottery!

Wow, really? It seems my doctors can't wait to get me on it!:lol:

 

[Welsh-bird]

Hi Kurt, welcome aboard.
Glad that you've been offered Inflix, I'm currently in dispute with my hospital over the right fr this drug. As I have been diagnosed with UC, they seem unwilling to perscribe it. Am waiting now for a white blood cell scan and am hoping to get the diagnosis changed to Crohns and then they said they will allow me Infliximab....as Joan has said, right now it's a post code lottery!

Andrea

 

[winemaker]

G'day Kurt,
Reading your story is like reading my autobiography. I feel for you mate, I went through the same deal in 2004 (22 years old). Good to see you have a diagnosis now and hopefully you'll find the right treatment for you.
What's 6 stone in kilos?

 

[StarGirrrrl]

Roughly 29 kilos so that is alot.

I'm 23 and they are looking into my IBD at the moment (IBD is 90% confirmed although they will hark on about IBS!), and there are lots of us our age here

 

[Squadinho]

Hi Kurt, welcome aboard.
Glad that you've been offered Inflix, I'm currently in dispute with my hospital over the right fr this drug. As I have been diagnosed with UC, they seem unwilling to perscribe it. Am waiting now for a white blood cell scan and am hoping to get the diagnosis changed to Crohns and then they said they will allow me Infliximab....as Joan has said, right now it's a post code lottery!

Andrea

Obviously I can't speak from experience because I haven't had it yet, but hopefully they will allow you to use it and it will work for you. My doctors are really 'bigging it up' so I'm hopefully it will do something for me. I'm guess that Infliximab isn't as useful in treat UC as it is with CD then?

I feel for you mate, I went through the same deal in 2004 (22 years old). Good to see you have a diagnosis now and hopefully you'll find the right treatment for you.

Thanks.

I'm 23 and they are looking into my IBD at the moment (IBD is 90% confirmed although they will hark on about IBS!), and there are lots of us our age here

My GP actually dismissed IBS straight off the bat. Never had anyone trying to fob me off with that.