I am Done! (with ulcerative colitis:)

I am a wife, a swim-mom to 3 awesome kids, and a teacher. I was diagnosed with Ulcerative Colitis in 1995. I am throwing in the towel against this disease. My surgical consult is on August 15th

Some more about Kira:

I am a so cal beach girl (although I live inland now) I will get back to the beach some day! I was a triathlete and runner before UC took over. I really want to run a marathon some day. I hate having an annual colonoscopy!

Symptoms of my Ulcerative Colitis:

urgency, bleeding, cramping, 6-8 poops a day (which is actually pretty good for me!). Fear of leaving the house – if that’s a symptom.

I am Done!

I wasn’t going to share my story because this site has helped me realize I am just like so many other people who suffer from UC. So, what changed my mind? I found myself looking for someone who has gone through the surgery closer to my age, just turned 49.

I had my first symptoms when I was in my early 20’s. But it was embarrassing to talk about and the tests were a horrible experience! So when my symptoms went away I was thrilled I wouldn’t have to go through any of that again! Or so I thought. About 6 years later my symptoms returned with a vengeance. I was hospitalized, diagnosed with UC, given IV steroids and blood transfusions. I was put on oral steroids and TPN for complete bowel rest for 3 months. It worked. I took Asacol as a maintenance med and followed some simple diet guidelines. For years I was in remission with a few small flares after having my kids (they think this was due to hormone changes). I even went off all meds for a few years.

Things began to change in 2007, a couple of years after I started teaching. I flared in the fall. My doctor at the time didn’t do anything. I kept to a simple diet. In 2008 I had a bad flare where I dropped 20 pounds in a few weeks, went to a new doctor and was put on flagyl, cipro, and prednisone. I had to take 5 weeks off work. I probably should have been hospitalized, but I am stubborn and with 3 kids I just didn’t want to. Soon, I began to have symptoms in the spring too. My doctor wanted to add injections, but my insurance wouldn’t approve it for UC. To be honest I was happy because I wasn’t sure about it. I became steroid dependent, so in 2011 I agreed to try Remicade. With little results, I was soon put on the max dose and my doctor suggested I consider surgery. No Way! Fast forward to 2013 – I took this past school year off to see if the decrease in stress and activities would make things better. Unfortunately, this year has been as bad as the others, maybe even worse. I will save you the boredom of reading all the things I am suffering from. But I will say I am fighting C-Diff for the 3rd time! In April, I was going 20+ times a day and I called my doctor in tears and told him I just couldn’t fight this battle anymore. He agreed and referred me to a specialist in San Diego.

I saw the specialist in May. After reading through my history he made the statement, “that’s a lot of medicine with little return” and I just completely broke down. I am so tired of this disease and all that comes with it. I want to go back to work – I am going back to work next year. I cannot be running to the bathroom in the middle of a lesson and leaving 30 kids in a class room. So I am going to do it. I was terrified of surgery and “the bag” before I found this website. But here I have found stories I could not find elsewhere on the internet; Positive stories of a better life. The only thing I couldn’t find is the positive surgery story of someone over 40 (sorry if it is there and I just didn’t see it). My surgical consult and surgery were supposed to be in June so I could recover over the summer, but I couldn’t get in until August. I am very hopeful things will go well.

Thank you Adam! (my middle son’s name by the way)

I am currently taking: lialda, uceris, Vit D, probiotic, remicade, iron, vancomycin (for c-diff) I think that’s it

Ask Adam:

Have you heard of people who’ve had to have an anal manometry? I don’t think I can do it! Is it just because I am old? (because we all have urgency and accidents right?)

written by Kira

submitted in the colitis venting area