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Crohn's Disease / Ulcerative Colitis Message Board
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Old 03-11-2011, 05:20 PM   #1
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Location: Harbor Springs, Michigan, USA
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nkenney28 HB User
Unhappy Ulcerative Colitis Help/Advice

I was diagnosed with Ulcerative Colitis about a year and a half ago. Ever since I've been diagnosed, I have a hard time staying healthy. It seems like I always have some sort of cold or flu. I lack energy most of the time too.

When i was diagnosed with Ulcerative Colitis my GI put me on 9 pills of Sulfasalazin a day. Than last November i was put on a prednisone taper. In December i was given a colonoscopy and the GI could not find any sign of Ulcerative Colitis. So he took me off all medication because he said the medication (Sulfasalazin) could cause symptoms like UC flare ups.

I was doing well for about a month with no medication, then I started having extreme pain, and I was going to the bathroom 8 to 10 times a day. I was throwing up all the time and could barely keep any kind of food or drink in my stomach. 2 weeks ago I went back in and saw my GI and he put me back on the Sulfasalazin (6 pills a day) and I'm on the predinisone taper again. About a week after I started the medicine, I noticed blood in my stool. Now my GI wants to do a Sigmoidosopy.

Please give me some feedback about your experiences, advice, or encourgament.

 
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JWNY (12-05-2011)
Old 12-04-2011, 11:31 PM   #2
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louise1956 HB User
Re: Ulcerative Colitis Help/Advice

Hey there...you are going through the same things I started with. I was diagnosed in 2000. The sulfasalizine worked for a while, then I went to mesalomine, then to prednisone taper, to IV prednisone, to more and more meds. I would have probably done well on the oral meds but my UC was so bad that I very rarely went into a full remission for long. The prednisone helped temporarily for a few weeks, then the bleeding would start again. I know what you are going through...My family tried to understand how I was feeling but I believe they never quite grasped the social isolation I felt. I very rarely went places for fear that I couldn't find a bathroom in time. The urgency to go was awful. I remember trying to leave my house to go to the library one day while having a bad flare and having to quickly drive back into my driveway to run to the bathroom three times before I could actually get on the road. It was awful. Please feel free to write and ask me any questions you may have. I no longer have UC. I had an colectomy, I have worn an illeotomy pouch, then had take down surgery and now have a j-pouch. I am doing much better but now my daughter has now also been diagnosed with UC. While I am no expert, I believe my past experiences with the sleepless nights sitting on the pot, the butt burn, the food challenge, the social isolation, the dehydration, the muscle cramping and the forever lookout for the next bathroom or porta-potty allows me to know what you are going through and to be able to assure you that are not alone. I will tell you things I went through if you ask and I will try to help you in spirit if in no other way. Be sure to always keep your doctor informed in any new symptoms or changes. Take care and love yourself...Louise56

 
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