Over the course of the last ten years, it’s become really easy to openly talk about my guts, and this crazy journey I’ve been on! I hope that this post helps someone that might be suffering from invisible illness, and to raise awareness about IBD and just how much it can impact a person’s life. Here is my story-
My IBD journey started in 2008, with a diagnosis of Ulcerative Colitis. At the time I had no idea just how serious the diagnosis was. I was told by my GI doc that “there is no cure, and you will be in medicines for life.” He gave my Lialda which is an anti-inflammatory, and sent me on my way. From there out of nowhere I was hit with a flare, and ended up taking Imuran. The Imuran wasn’t at a level that was helping so the dosage creeped up and up. I was taking handfuls of pills each day!! 6 Lialda and 6 Imuran. It was a lot. I was doing well for awhile when all of the sudden I became severely neutropenic from the immunosuppressant Imuran. I was then taken off the Imuran, and started on Remicade infusions. Every 6 weeks, I would go sit at the infusion center, and pray that I would feel better. The Remicade worked really well for me and I was on it a few years, when I started experiencing side effects. My memory was shot, I felt foggy all the time and couldn’t even remember names of objects. It really hit me that this was a problem when I was reading my son a book and couldn’t name the plant in the picture book we were reading. I was sent for an MRI of my brain, in order to rule out a brain eating disease. I realized then that these medications are very serious to take, and they ARE a big deal with serious consequences. My MRI came back negative, (THANK GOD!!) and after discontinuing Remicade, the fog lifted. I was then started on Entyvio infusions. The drug helped me stay in remission but I started to get horrible joint pain and came off of it. Then I tried Humira. The Humira didn’t cover me adequately, and I went into a huge flare this February.
My MD suggested I try Xeljanz, which wasn’t approved for UC at the time, but was showing promising results. I opted to give it a shot, as it was really my last drug option available. My doctor said it could take a couple of months to work. Well, after 2 months of no results, I called her back and she said “oh it could take 4-6 months to work.” I was super frustrated and super ill and my patience was running thin. I was running to the bathroom 20 times a day and as frequently as every 15 minutes. Every. Single. Day. It hard to describe just how this brings your quality of life down, and the only thing comparable would be to imagaine what it’s like to have the stomach flu every day. I wasn’t able to go anywhere that wouldn’t have a bathroom-like hiking, or biking around, and going snowboarding in the winter was out of the question too if the flare didn’t get under control. A couple more months went by, and I just couldn’t take it anymore. I was out of drug options, and had been on steroids from February to the end of June. Ahhhhh steroids, I experienced the mood swings, the weight gain, and the insomnia to go along with it. Oh and my favorite side effect-moon face. My face got so round and puffy that I couldn’t even recognize myself in the mirror.
I continued looking at other treatment options, and one being surgery. The surgery was called J Pouch surgery and it would involve the removal of my large intestine and creating a new rectum out of my small intestine. I was at my wits end with these medications and side effects, I decided to go ahead with surgery. I was confident that the surgery was the best answer after consulting with Dr Brown in Denver. My chances of the J Pouch failing or not working properly, was about 12%. At this point, The odds were in my favor! Having surgery was terrifying-thinking about someone up in my guts just really freaked me out!!! And with two prior abdominal surgeries I knew there would probably be a lot of scar tissue in my abdomen, and hoped that it wouldn’t affect surgery.
On July 9th 2018, I had the first portion of the surgery, with my colon being removed and the j pouch created. In the meantime, I have an ileostomy until everything heals. Then I will go back in and have the small intestine reconnected, so that I can poop like a normal person. Well, it won’t be completely normal, and there are risks. There’s a chance I could develop an intestinal blockage, having Pouchitis or having the pouch leak into my body. That’s super scary, but rare.
After the first surgery, the biopsy showed mild displasia in my transverse colon and severe colitis in my rectum. Just based on the presence of displasia, I know that I made the right decision. I’m sore today as I sit in the hospital bed, and have tubes coming out of every orifice, with staples running down my tummy from belly button to my pelvic bone. My stoma isn’t as gross or scary as I thought it would be! And so far, emptying my ostomy bag has been so much easier than running to the bathroom constantly! I feel my strength building, and my doctor says that I’m ahead of schedule on healing!!:) I’m so excited to have my life back and not have to deal with colitis ever again! It was debilitating to the point of not being able to walk to the playground with my son, or take a bike ride around town, or pretty much go anywhere that didn’t have a restroom. I’m relieved and feel like a burden has been lifted!! Everyone’s prayers have really lifted me up and helped me to heal. I feel fortunate to have great family and friends to help along the way! Watch out world, I’m ready for a new start!!!