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07-23-2012, 09:04 PM   #1
oldChronie87
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Join Date: Jul 2012
Location: Congress, Arizona
Long road

My story starts when I was a little girl and I was constantly in pain with stomach aches and having 'the runs'. When I was 10 I spent a week in the hospital to find out why I was always sick. I had all the tests, including a sygmoid. The doctors could find nothing. I continued through high school and college with the same problems, seeing different doctors and still no answers. I married and had 2 children. My first pregnancy was uneventful, but my second was tough. I had what I now know is a Crohn's attack and delivered 4 weeks early. I started losing weight and looked like a skeleton.
Two years later I had my gall bladder removed. I thought that might fix everything, but no luck. Four years after that I had rectal bleeding, more pain than I have ever known and of course the ever present diarrhea. My husband took me to the ER and I was admitted to the hospital. After ultra-sounds, upper Gi, and and endoscopy I was taken to surgery and had my appendix and 8 " of my small bowel at the terminal illeum. I had a fistula between my appendix and terminal illeum. Finally! A diagnosis! Crohn's disease. I was 32 years old.
I was put on various medications and a 3200 calorie a day diet. The doctor and dietician said I would lose weight. Two months and 69 pounds later,
I went back to a normal diet. I still haven't lost the weight!
Over the years I have had various treatments including steroids, which make me psychotic, Remicade, I had a heart attack during treatment and now this new doctor had a test done through Prometheus and is putting me on Mercaptopurine.
I still have a lot of symptoms, but I refuse to let this rule my life. I was able to raise two beautiful children, peruse interests in the arts, crafts, making jewelry and travel with my husband through it all. BTW, my husband has been with me through the past 35 years.
Thanks for listening...
07-24-2012, 05:39 AM   #2
Angrybird
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Location: Cambridge, United Kingdom

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Hello and welcome to the forum I am sorry to hear you have had to go through so much! You have however definetly come to the right place for lots of helpful info and support.

Do you have a date yet for when you will be starting this new med? I myself am on this and so far so good, I will definetly be keeping fingers crossed that this can get things settled for you too. You may also find it handy to have a nose around our sub forum for this: http://www.crohnsforum.com/forumdisplay.php?f=64.

Wishing you all the best.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
07-24-2012, 05:05 PM   #3
David
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Location: Naples, Florida
Greetings and welcome! Wow, that's a LONG time to go undiagnosed, you poor thing

I pray that the 6-MP is the answer for you!

Out of curiosity, do they every check your vitamin levels such as B12, vitamin D, folate, and magnesium?

Again, welcome!
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08-12-2012, 08:03 PM   #4
oldChronie87
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Join Date: Jul 2012
Location: Congress, Arizona
Sorry it has taken me so long to respond! AB.. I have been on the med for 2 weeks now, so far so good. Had my first blood work this last Friday. Feeling pretty good. Now if the temps here in AZ would drop below 110, I'd be perfect!

David, I have been getting a monthly B12 shot every month since 1987. Blood work is done on a regular basis. Thank you for your suggestions. Feeling pretty good right now.
08-12-2012, 08:09 PM   #5
David
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I'm really pleased to hear that you're doing well right now! Here's to it continuing and only getting better
08-13-2012, 01:33 AM   #6
Angrybird
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I am so pleased you are doing well, long may it continue!
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