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andilynn09

Guest
newbie

I am 30yoa have had stomach problems for years....started around 13-14yoa. 2 different doctors ran test over the years (no scopes though), and both chalked it up to IBS because they couldn't find anything else wrong. My pain was always in my upper abdomen, and very sporadic....so we all thought it was just a stress thing.

In Jan 06, I had a 3-4 week period where i started having stomach pain each time I ate. It got a little worse from week to week, but then ended up going away so I thought it was just a weird stomach bug. In early March of 06, the pain started again, and just continued to get worse. Finally one night it got so bad that I was doubled over within mins of eating a few bites of food....and I finally knew something else was wrong than just my regular stomach probs. Over the next 3 weeks i saw myfamily doctor, was referred to my GI, and did the normal tests....both scopes, barium xrays, etc. Between the middle of march and 1st week of April I had turned 30 and found out i had CD....what a month. Incidentally, in my endoscopy my GI doc found that i had scar tissue, nodules, and shrinking of the stomach....signs that at some point or another I had either had an ulcer and no one caught it, or that all those years of upper stomach pain were the beginnings of my crohns before it got more severe. lovely.

Since mid-march we have been struggling to get the pain under control. I've lost at least 15-20lbs, and am now 116lbs at 5'8". Have been through pentasa, flagyl, and budesonide....am now still on pentasa, just started pred, and am adding imuran next week after my blood tests come back and GI knows what dosage i can handle. am hating the pred already afte only 6 days, and am not looking forward to the re-occurring blood work and nast side effects associated with imuran....but i am also more than ready to try to find "me" again, and be able to eat somewhat normally and hopefully feel somewhat normal again.

anyway, it's nice to know this is here....friends and family have been great, but i think they can only understand so much without having experienced it. thanks for letting me ramble.... :lol:
 
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DannyB

Guest
Hye andilynn09,

Thanks for your story and I hope you can get things sorted and live again. There are plenty of peeps here who can help and understand the problems you face.
 

Tami Lynn

Forum Angel
Welcome to the forum Andilynn!

My name is Tami. I'm a 36 y/o F, dx with CD 22 years ago (at age, 14), three bowel resections and a few surgeries later, I'm now doing better than ever (minus the aggravation of living with post-surgical adhesions <ugh!>)

I have a 17 y/o daughter who was dx with CD a year ago.

You'll meet a lot of wonderful people here on this forum, so feel free to jump right in and make yourself at home.

I'm sure I speak for everyone here when I say we're glad to have you with us!

See you around the forum!
 
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Jonny

Guest
Hi andilynn09,
:welcome: to the forums,I find the site really helpful for information and peoples experiences or else to just get things of my chest its a cool friendly place to be.
 
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Valentina

Guest
Hi! and welcome to the site.. hope you like it here.. its a very helpful and friendly place. see you around the posts.
 

mikeyarmo

Co-Founder
:welcome: Andilynn!

Thanks for sharing your story with us and I am glad that you could have joined us. Well I am not glad that you have had to go through everything you have, but I am glad that you have found our group.

:eek: I hope that made sense.
 

Karen

FRIEND 4 1 & ALL

Welcome Andilynn ... I am GRANDMA BEAR aka KAREN & I'd like to say that you will make plenty of friends here so have a good time and if you ever need a shoulder to lean on drop over and say hello !!
 

cookey

Mama Crohnie
Ramble anytime you feel the need Andilynn, that's what we are here for. Lol, sorry Hello and Welcome to the forum. You're absolutely right when you say family and friends only understand so much, this is certainly the place for understanding and some great friendships. Looking forward to getting to know you better.
 
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Irishgirl

Guest
your meds are just like mine. ive been on pentasa for 5 and a half years, im starting pred again now to help get the pain undercontrol and i think im starting imuran in 2 weeks. its all go!

i hope you feel better soon
 
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andilynn09

Guest
Update

Hey, this is Andi...just thought I'd share an update. Was doing pretty good there for awhile. I'm on Pentasa still, have been on Imuran for 2 months now, and have been unsuccessful at getting off the steroids. Used 2 months of entocort, and am going on 3 months of prednisone. Every time I get to lowest doses, pain comes back and gets worse daily. SO...I'm now back on pred again, doing more blood and a stool test tomorrow. Have two appts next week w/ new docs....one w/ a contagious disease doc to make sure the infection I got while in a foreign country is really gone, and one with the super-duper specialist at the University. Yahoo. But, if they can figure out something to keep me from having to go on Remicade....it will be worth it I guess. Wish me luck. :eek:
 
Aloha andilynn and welcome back. Sorry you don't seem to have the right combo of meds yet to keep you comfy and functioning, but that seems to be the way with our type of problems. I've long been convinced that it's as much art as science, finding the right balance of meds, diet and lifesytle. Your attitude is great, though, and here's hoping the tests & the new docs have some answers.
 

Kev

Senior Member
Hey andilyn09.. sorry to hear about your troubles... But keep the faith. Think you will find the right combo that works for you. I want to echo the sentiments others have already stated.. First, welcome.. Second, that it is a combo. no single pill will fix this. You need to look at a lot of things... diet, excercise, rest, relaxation.. You find a combo that works for you, stick with it, improve upon it, and life should get to a point you can 'live' with. I spent a great evening out the other nite, and had a great time... and didn't miss that I couldn't have the same food or beverages my friends ordered... Life can be good, if you put the important things in perspective
 
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