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Crohn's Disease Forum » Your Story » Hi everyone, I'm new to the site but not to Crohn's Disease


08-10-2011, 08:37 AM   #1
muppet
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Hi everyone, I'm new to the site but not to Crohn's Disease

I was diagnosed at age 6, 28 years ago. My disease is never in remission for long anymore although I did enjoy a nearly 10 year long remission in my late teens and twenties.

My oldest daughter unfortunately also has Crohn's and hers is much more severe than mine, not least of all because she is allergic to 5-ASA. I've started keeping a blog to document her story and also to vent and help cope with the whole experience...

...but it looks like brand new shiny members aren't allowed to post links. That's a shame because I've put an awful lot of work into her story. I guess I can post it later.

Well, hello anyway!
08-10-2011, 09:54 AM   #2
muppet
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Here's Sarah's story (quite long, just fair warning). She's had a heck of a time, though not as bad as some.

http://www.sarah-story.com
08-10-2011, 09:59 AM   #3
David
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Hi Muppet and welcome!

Awww, your daughter is beautiful! It tears at my heart that she is having to deal with so much And I'm sorry you've never been able to maintain remission for very long I AM glad you were able to find your way here. I realize you're a forum veteran but just in case you missed it, we do have a Parents of Kids with IBD forum you may want to check out.

As long as you've been into forums, we should talk sometime. I wouldn't be too surprised if we know each other or at least of each other.

Take care and I wish you all the best.
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08-10-2011, 10:41 AM   #4
muppet
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Hi David, thanks. I've never been associated with a Crohn's or IBD forum before. I have my own tiny community on an off-topic and another on another off-topic. I moderate a very, very small subreddit. Nothing major like this site. I can't imagine how much of your time you must spend on a community this large.

Still, I've seen more than my share of trolls, scammers, difficult personalities, etc.

Heck, I'm a difficult personality myself.
08-10-2011, 11:01 AM   #5
scottmyster
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HI muppet , welcome to the forum i have had crohn's for 21 years now and was in remission for 15 years , now recently it has flared up again and on preds and other drugs mostly anti-inflammatory drugs to calm down the inflammation. i am sorry to hear about your daughters crohn's experience my, prayers go out to you both and hope she finds some drug of something to calm down her crohn's and go in remission. best wishes.

scott
08-10-2011, 11:35 AM   #6
raindrop
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With the rash and joint pain, it sounds like psoriatic arthritis. Has Sarah seen a rheumatologist or immunologist? I wonder if the Remicade didn't do something to start this arthritic and skin response. Your family has been through more than anyone should ever have to go through.

Have you thought of enrolling your daughter in one of the CCFA summer camps? She might find comfort in getting to know other kids with Crohn's.

I'm grateful for the time the administrators put into this large forum. You're helping people all over the world in such a positive, caring, educating way.
08-10-2011, 11:39 AM   #7
muppet
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Sarah has seen a rheumatologist, but not an immunologist. Arthritis of any kind was ruled out by her. She "diagnosed" neuropathic pain and prescribed some sort of electrical therapy which we have not pursued as well as orthotics to correct Sarah's gait, but we haven't gone for a fitting yet because of her flares and other family issues that have delayed our aggressive pursuit of her treatment somewhat.

I'm not sure if there's such a camp near us. We have "Hole in the Wall" here but that's for MUCH sicker kids than her. Frankly, even if it were subsidized we'd be unlikely to be able to afford it. I'm on a 4 year debt repayment plan right now (of my own design, thankfully, not compulsory) that is just killing us financially. It's bad enough that she's treated in Boston which is 3 hours away from us, after we gave up on the frankly incompetent specialists we were seeing here at home.
08-10-2011, 01:56 PM   #8
David
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Hi Muppet,

The amazing thing about this forum is that the vast majority of the members are so mature and incredible that it really moderates itself. And we're blessed with a great moderation staff as well. I feel like I can disappear for a few days and come back without issue. It's great and completely unlike other forums I've admined.

With the neuropathic pain, I've got to ask, have you had her vitamin B12 levels checked?
08-10-2011, 03:11 PM   #9
xJillx
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Hi and welcome! I am sure you're going to find the forum very helpful and therapeutic.

I look forward to seeing you around!
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Diagnosed with Crohn's Disease - July 2010
Diagnosis of Crohn's Disease Retracted - October 2011

I am still sick and so confused...
08-10-2011, 03:34 PM   #10
Astra
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Hiya muppet
and welcome

Poor Sarah, she's been through so much for such a little 'un, really hope you can get something sorted out for her. And I hope you're ok too?
Enjoy the forum, hope you find some comfort here with us
lotsa luv
Joan xxx
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