I’m 24 years old and I was just diagnosed a little over three weeks ago. Ulcerative Colitis, but the GI didn’t rule out Crohn’s 100%. Still feeling sick and confused.
I have had two episodes of bad diarrhea in 2009 and I sort of felt, that something was wrong. The doctors didn’t think it was anything other than a stomach flu. They prescribed me some antibiotics even though they did not find bacteria. The first episode just passed after about five weeks. The second one about six months later was much more painful and intense, that’s when the bleeding began. It freaked me out but the doctors were still pretty cool about it, scheduled me to see a GI three weeks later. I knew something was wrong, I had already done research and had brochures about Crohn’s Disease and Ulcerative Colitis, but the doctor was reluctant to do a colonoscopy initially (“probably just IBS”). I never got better, so he gave in. By the time the procedure took place I was entering remission I think, he barely found any inflammation and let me go with some more antibiotics.
This time I knew it was the same problem, when my diarrhea just wouldn’t go away. It was a really stressful time and that’s what I first attributed it to. But then I had to use the bathroom every hour and there was always blood. I lost all my appetite because I thought that food was doing this to me. I couldn’t get any food down without throwing up, I was drinking a lot to prevent dehydration but it didn’t work. I was running fevers. Finally I was admitted to the hospital with severe dehydration. They tested me every possible way it seems. At first they were excited about a possible parasite, and so was I. That would have been awesome! Or a bacterial infection please… But they diagnosed me with UC after a colonoscopy, because my entire colon was inflamed and there were ulcerations.
I was instantly put on prednisone, a few antibiotics and asacol. After the hospital (they let me go because I could eat again) I was hit with the high cost for the medication. I had to go on sulfasalazine, because I couldn’t afford the other drug. Two weeks out of the hospital, but I’m worse again, going about ten times a day, almost constantly on pain medication. I couldn’t wait for my first follow-up appointment with my GI. He determined, the sulfa wasn’t working for me and put me on another mesalamine. Still insanely expensive, but maybe their support program will help me. I hope they will, because I think the new medications work much better. I can tell after eight days that I’m improving. Less diarrhea, less pain, almost no blood. I’m afraid to be too hopeful.
But overall I feel so lost and overwhelmed. I lost even more weight, I am still not getting any close to normal bowel movements and I can’t sleep at nights. I don’t feel like I know what’s gonna come next. I was just told my hemoglobin was low. Last week I was running a temperature, which the doc attributed to a cold I must’ve caught. Who knows anymore. I used to be healthy, ate anything I wanted, was active, now I don’t recognize my own body anymore. Sometimes it’s like I see the light at the end of the tunnel but then I start feeling worse again. I’m so confused as to what to eat. The doctors (both GI and GP) said I should pretty much eat whatever I feel like but there is so much conversation about diet for UC. So many conflicting statements. I never felt that food really bothered my symptoms but now I don’t know anymore. I used to eat everything before this and I am pretty sure my disease didn’t just start… Once I am strong enough to do so I want to start yoga, I have been meditating a little too. I just don’t know about the food part. I used to always eat healthy, cook my own meals, avoid greasy stuff, fried stuff, avoided too much meat and too many carbs… can I just go back to that?
Ulcerative Colitis Medications:
Rightnow mainly Lialda and Prednisone.
Also on dicyclomine to control the cramping,
I am glad I’m on it because the pain was killing me.
Submitted in the Colitis Venting Area by Rebeka