My UC is a Pain in the Butt for Me and My Life!

Hi I’m Sheryl Koppa, I love in Mckinney, Texas.

I’m married to an awesome, caring husband. And I have two grown girls and I’m a new grandma, so exciting.

I love the beach, love to water ski and I read a lot. I’m reading more about UC these days, but knowledge IS good!

I’m currently in a flare, my friends called my high school car, The Shitter! It was old! So they would holler across the parking lot to me and yell…Hey Shitter! Well now the name fits for a whole different reason. Ugh!

Sheryl’s Colitis Story:

I’ve had ulcerative colitis for almost two years, my symptoms started slow then bam, it hit and has not let up. I lost 24 lbs very quickly, which I did not have to lose. I lost a lot of hair because no nutrients were staying in my body at all and I was very, very tired all the time. I started Lialda, it did nothing. I started Remicade and in the beginning I felt better after the treatment for several weeks, then it would be gone before my next treatment and I would be really bad again and back in the hospital. My weight was too low to have a big dose so it was not doing much. My father was very ill and in hospital also at this time and I was helping my mom a lot, or trying to. I think I was very stressed on the inside. Then I had the opposite happen and got completely constipated for 10 days and I think that pain was worse!!! Back to hospital again! For some reason I slowly started gaining some weight back, and started feeling little better, then a flare again ! My Dr decided to double my Remicade to see if it is still working, I have been on it a year now and we think I may have built up antibodies against it. I just had the treatment a week ago, right after I was really loopy and extremely fatigued for 3 days. And still going to the bathroom a lot!

So the doctor is talking about changing to Entyvio.

I’m not sure about that yet.

I am also developing arthritis in my hands. I just got Adam’s book and have just started following the diet for two days. It is a huge change, but I need to try something else to see if this will help. I really miss my active life. I’m 53 and used to feel like I was 30, I definitely DO NOT feel like that anymore and I’m so tired of missing out on family and friends events. Road trips make me very anxious! But my family has been very supportive!

Medications

I took lialda in the beginning, it did nothing, I’ve had CDIF twice and took vancomycin, no side effects and it worked. I’m on Remicade now but it is not working much any more, thinking about Entyvio. Is anyone on this and having good results? Any side effects?

written by Sheryl

submitted in the colitis venting area