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Story of my life

Hi all,

my name is Hampus and this is my first post at this forum. I'm glad I found my way here.

I've probably had CD since the spring of 1998 eventhough i wasn't diagnosed with it until the late summer of -99.

I don't remember so much of the weeks when I first started feeling bad. But I was home from school i feeling kind of weak and with a bad stomach. Me and my family thought it was just like flu or something and that it would pass after some time.

well, it didn't ;)

After the summer of -98 I started high school, but was only getting worse. During this time I still went to the 'childrens clinic' of my hospital. And the doctors there were, hmmmm, how shall I put this? Not very used to listen to what their patients had to say? So it took another year for me to finally be diagnosed with CD and get medicine.

CD has obviously changed so much for me. I do not have severe problems with diarrhea.
The worst thing for me is that when i'm bad, I have so little energy and that - as you all know - effect so much: not having enough energy to go out and meet my friends, not being able to work or study as much as other people. The feeling of being rejected so much that others in their late teens and twenties can do. Not having enough energy brings my whole spirit down.

Its just crap (sometimes litterraly)

But the big change for me came a little more than a year ago.

I got my first infusion of Remicade. And what a MIRACLE drug it is!! When i woke up the morning after, I began to feel something I hadn't felt in over seven years. A slight sensation of being well and healthy. It was obviously a feeling i wasn't used to =)

The last year has been one of the best of my life! I've enjoyed being able to participate in things i thought were out of my life for ever. Not so much practical things - but more psycological things. Like the feeling of pure joy, the feeling of beeing young and free and invincible. haha, it sound very weird, but you know what i mean? When you're sick, thats the primary thing that occupies your mind.

But in the back of my head I knew that it was kind of borrowed time. That my state of health was very fragile and that things could and would change.

And that is what has happened over the last few weeks. Ive become a little 'less good'. And it feels like a full flare of CD could be just ahead.

This makes me very sad :(

I will probably be seeing my doctor sometime next week, and we'll see what happens.

Be well everyone.

/Hampus, Sundsvall - Sweden
 
S

Skinsfan1229

Guest
Welcome to the Forum.

We all have our good and bad times.

For me Remicade showed a major change by the next day also, especially in the realm of energy.

Hope you continue to post and make friends here, and once again Welcome!
 

mikeyarmo

Co-Founder
Welcome to the forum Hampus!

I think you might be our first member from Sweden, but I am not 100% certain of this. Anyways I am so glad to hear that you found something to help you and you have been able to enjoy life. Feel free to share any of the tricks you have learnt to cope with your disease with us.
 
Aloha Hamp and welcome to the forum. Thank you for sharing your story. Celelbrate that good year and know that you will be feeling better again.Let that help you through the bad days.

Hope you'll be back often!
 
D

DannyB

Guest
Hey Hampus,

Good to see you on the forum and thanks for your story. I hope that a flare isn't around the corner and you get well again soon.
 
I can't thank you enough for your welcoming guys =) it means so much to me.

I'll look into the status on Humira beeing prescribed for CD-patients here in Sweden when I talk to my doc. I remember he has said something like late -06 or early -07? But I've heard it could take longer than that?

Damn bureaucracy ;)

He has also mentioned helminthic therapy being researched in Germany (my doctor is german aswell), and said himself that it looked very promising. But as mentioned before on this forum it is dead expensive and a last resort type of thing for me.

If your intrested you can have a look at what wiki has to say about this:
http://en.wikipedia.org/wiki/Helminthic_therapy

and the companys own page with a very intresting forum: http://www.ovamed.de/

Again, thank you very much =)
 
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S

Skinsfan1229

Guest
Helminthic therapy is the theory of worms, I've talked to some people that have used it and said it helped more then any medication they've tried. Although its probably highly un-likely for your insurance company to pay for it and I think its around 6,000 US dollars for one dose.

I stopped the remicade a while back, a few years actually. I flared while on it, and my GI didnt want me to build anti-bodies so he took me off it. They've considered putting me back on it, but might opt for Humira. I have refractory crohns disease meaning i dont respond to treatment or medication, so my insurance company will pay for the medication and such that isnt quite yet approved and such.
 
Skinsfan1229 said:
Helminthic therapy is the theory of worms, I've talked to some people that have used it and said it helped more then any medication they've tried. Although its probably highly un-likely for your insurance company to pay for it and I think its around 6,000 US dollars for one dose.

I stopped the remicade a while back, a few years actually. I flared while on it, and my GI didnt want me to build anti-bodies so he took me off it. They've considered putting me back on it, but might opt for Humira. I have refractory crohns disease meaning i dont respond to treatment or medication, so my insurance company will pay for the medication and such that isnt quite yet approved and such.
ok, cool. Hows it going for you at the moment? Having your crohns under control?

Talked to my doctor today and he told me to come in tomorrow morning and have some blood samples taken to look at whats going on in my body. Actually feeling a lot better today, so its hopeful.

I'm going to call Abbott Scandinavia tomorrow and hear what they say about Humira being prescribed for Chrons. Want a second opinion on that.

About the helminthic therapy, has anyone at this forum tried it so far? And indeed, it's very expensive. The recommended minumium therapy (ten doses over 20 weeks) is about 3.000 euros which is as you said not covered by health insurance or such things.

Looked at Ovameds homepage and they said it's another 5 years or so before it can be classified as a drug and be prescribed. So again, damn bureaucracy =)

be well

/H
 
i really can't wait for the helminthic therapy to come out, when i read about it it looked extremely promising. i'm definetely gonna start putting aside money everytime i work so that one day if it comes out i'd be set


and WELCOME TO THE FORUM!
 
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