Hello my name is Jackie and I am 30 years old. I am a 8th grade Science and Engineering teacher and I love my job even though UC is making it harder to do every year because you can’t just up and leave a class of 31 hormonal 13/14 year olds lol! I have had UC for about 9 years and it is getting worse and worse! I am grateful to have a wonderful and supportive family to get me through all of this because without them I would be lost!
Some more about me:
I absolutely LOVE exercise, working out and being outdoors! So I guess that it is nice that I live in WA because there is a lot to do outdoors! But as you can imagine UC gets in the way of my activities all the time! I am sick and tired of being sick and tired and really sad that my body isn’t in the shape it used to be or could be because of this stupid disease!
Oh and I LOVE my cats! Yep call me the crazy cat lady!! I have 2 Bengal cats Pete and Stanley and they are like my kids!
My Colitis Symptoms:
Right now believe it or not I have very little symptoms thanks to Humira and Azathioprine (maybe I shouldn’t be thanking them because they are destroying my body)!!! My hair fell out, I have acne, abscesses, extreme fatigue, severe joint pain a few days before my next dose of Humira, memory loss, a white blood cell count that is too low…just to name a few!
Becoming J-Pouch Jackie
Here is my UC history in a nut shell, and yes that is how I feel trapped in a nutshell lol:
1/2004 first time with blood and D! 3-4cm of inflammation from rectum up.
10/2006 4-5cm of inflammation from rectum up. Ulcerative Proctitis.
3/2008 4-5cm same as before but this time it was a little more stubborn!
06/2009 10-13cm from the rectum up and this flare was a little worse. Definitely UC.
5/2012 – Took antibiotics and got a C-Diff infection. They put me on Flagyl then Vancomycin. I still wasn’t getting better! I actually thought I was going to die! I was having bloody D every half hour and throwing up foam! I dropped 30 pounds in a couple weeks and my mom took me to the hospital! They ran TONS of test, the C. Diff was gone but my whole colon was in a horrible flare! They even tried to do a colonoscopy and couldn’t because as they said, “It looked like ground hamburger”!
To make a long story short its been a LONG and DEPRESSING year! I was put on Prednisone, Remicade and Azathoprine. They took me off Prednisone so I wouldn’t become dependent and told me if the Remicade and Azathoprine failed I would need surgery. Well the Remi and Aza combo didn’t work and they wanted to try Humira as a last resort and it is working for the most part (even though it seems like some symptoms are coming back slowly) but I hate being on Humira and Azathioprine the side effects are awful and I am on the highest doses! I am 30 they tell me I will need to be on these for life, how is that possible? Also, how can suppressing your immune system be a safe thing to do for a prolonged period of time?
I have tried it all including diet, probiotics, even these yucky meds and have scheduled a 2 part j-pouch surgery for June. I have had every test under the sun to make sure it is UC and not Crohns. I also have always had inflation from the rectum up which is another sure sign of UC and not Crohns. They tell me I will probably lose my colon eventually either due to failing meds (I am on the last meds before surgery), colon cancer or a flare we can’t get under control. I wish I could just stop taking my meds and be ok but I have had several opinions and they tell me that if I quit taking my meds I could flare quickly and be in worse shape than my previous flare and I NEVER want to feel like that again!
I hate having to make the decision between meds and surgery but the meds are SCARY!!! The side effects I am having already are depressing and scary. I just don’t feel like myself any more and I just want my life back. I am just looking for some insight and kind words. Deciding between meds and surgery makes me feel like I have to choose between being able to see or being able to hear, not an easy decision and definitely not a decision I thought I would have to make at 30!
My Medication History:
1/2004 3-4cm of inflammation from rectum up, gave me Mesalamine.
10/2006 4-5cm of inflammation. Developed allergy to Mesalamine this time around (rashes up and down both legs). Entocort and Hydrocortisone suppositories.
3/2008 4-5cm again but this time it was a little more stubborn! Tried Entocort and Hydrocortisone didn’t work, went to prednisone and it cleared up flare.
06/2009 10-13cm this flare was a little worse. Took prednisone but took months and increasing doses to get it under control! This is where I learned to hate PREDNISONE!!!
5/2012 – UC in all of my colon thanks to C Diff! Prednisone, with Remicade and Azathioprine. Finally, Humira and Azathioprine 175mg
written by Jackie
submitted in the colitis venting area