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Regular Member

Date Joined Oct 2008
Total Posts : 160
   Posted 10/3/2008 6:22 PM (GMT -6)   
I just found these forums. I'm sure as all of you here, its nice to find a group of people who actually understand what you are going through. I'm 30 years old, and have had Ulcerative Colitis since I was about 21. It went improperly diagnosed as Irritible Bowel Syndrome for several years. For some reason the doctor never believed me when I told him I had blood in my stool. He always passed it off as hemorrhoids. Finally when I was 25 I went to a new doctor and told him I was so weak I couldnt stand up for more than 60 seconds. He gave me a blood test, and found that my hemoglobin count was down to a 2.5. Yes a healthy adult male should be in the ~17 range. I was almost dead. Needless to say, I spent a week at the hospital. Tranfusions, Colonoscopy, lots of drugs. Fun fun fun. They tried prednisone at that time. It had little effect. Next was Mercaptopurine. That didnt work at 50mg, but then did at 100 mg. After 2 years, I went in to full remission. So imagine, at 27 I finally got my life back.

Sadly I lost my health insurance, so I quite taking my medicine. It was easy to forget, because I had no symptons. I was truly living life like a normal person. Well I was really lucky up until 2 months ago. From what I read, I guess I should be very greatful for having a full 3 years of remission. This time though, it hit me hard and fast. I went from nothing, to full blown UC within about 7 days. I lost 20 pounds overnight. (I only weigh 140lbs to begin with). Luckily I spoke to my work, and they rushed and got me medical benefits. That came a bit late though, so I had to wing it. I paid out of pocket to see my GI doc. He prescribed all of the fun drugs. Asacol, Mercaptopurine, Prednisone, and Pain meds. All out of pocket. Awesome. I essentially went on bed rest. Lost 8 days of work. So this has been a really expensive flare up. Luckily I have the insurance now, so my doctor can play around with different meds now, and it doesnt really cost much. I just went to see him the other day, and he swapped the Asacol for Lialda. He ordered a round of blood tests, and a colonoscopy.

I'm a fighter. I went back to work as soon as I could. Ive been back for 2 1/2 weeks now. The first couple of days were intense. So so hard to get through an 8 hour day. The pain, the weakness, the everything was unbearable. Every day has gotten better though. I feel like Im 80% back to normal. The prednisone though has had its way with me. My feet have swollen up, so its hard for me to walk now. Luckily Im just now backing off of that stuff, so hopefully that will go away soon. My doctor says it will probably be another 2 months for the Mercaptopurine to be fully effective, and hopefully I can be back in remission within another 5 months.

I'll keep my fingers crossed. This little flare up has been Mr. Toads wild ride through hell. Its amazing how I went from perfect to essentially a deaf, blind cripple in the blink of an eye.

Anyways, just wanted to introduce myself. Hopefully I will have good progress reports over the next several weeks. As far as my diagnosis, I do have Severe Ulcerative Colitis that extends through my entire large intestines. I do know what pain is. I can say for certain that this disease is the Torture of the darned, and it has plagued my life.

Thanks for listening,

Regular Member

Date Joined Jun 2007
Total Posts : 364
   Posted 10/3/2008 7:14 PM (GMT -6)   
Welcome, John. This board is such a great resource for those who suffer from this disease and also great for those of us that love and care for someone (in my case, two young someones) with UC. I hope that very soon you are back in remission and that it is a very long one. Great to hear that your company was able to help you get your insurance kicked in. I worry about those kinds of thing for when my kids are adults.

Again, welcome. You've come to the right place!

Mom of Son 17 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Vit/Min

Daughter 9 UC dx 08/07 Colazal, 6MP, Iron, Vit/Min., Culturelle

Regular Member

Date Joined Jun 2008
Total Posts : 281
   Posted 10/3/2008 7:46 PM (GMT -6)   

Hi John,

You have been through a wild ride.  I hope you continue to improve and can go into "coast mode" for a long while.  This is a great place to be able to discuss what's going on with you and get lots of ideas on how to take care of yourself, so hang in there. 

Potato...  Female, 58, dx 11/07 mild left sided ulcerative colitis (50 cm)
asacol 3 3x a day, cortenema (generic) am & pm rowasa every other day  culturelle, benefiber wafers  generic acidophilus, metamucil wafers, activia, primadophilus reuteri
children's vitamin, Vitamin E 400 mg, omeprazole 2xday
oxazepam when needed, lomotil or ImodiumAD (not in the same day) when needed
Yoga, meditation, The Work by Byron Katie, exercise at least 5 days a week

Veteran Member

Date Joined Jul 2005
Total Posts : 1614
   Posted 10/3/2008 8:50 PM (GMT -6)   
Just wanted to say Hi and Welcome, You have definitely come to the right place.

Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Diosmin(for leg and vein support)

Regular Member

Date Joined Sep 2008
Total Posts : 202
   Posted 10/3/2008 9:55 PM (GMT -6)   
hi John, I just got diagnosed too, after a year of bleeding "hemmorhoids" rolls eyes. You have a good attitude. I am glad you have insurance now.
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