Daily Life | IBD | Information
When I was sixteen, I was diagnosed with ulcerative colitis. At the time, I didn’t really understand what UC was and I didn’t feel that sick, so I shrugged it off as a minor inconvenience. A few more medications and doctor’s appointments and I figured I would be set, right? I couldn’t have been more wrong.
I graduated high school and moved away for college, determined to have the best college experience I could. My hopes of a “normal” college experience were dashed very quickly, as the stress of moving into my apartment, starting college, and being away from home sent me into a flare. My health slowly started to spiral out of control, but no one knew how bad things actually were. I kept in close contact with my doctor who agreed that, while I wasn’t in remission, things were going okay and I would continue with the plan to see him when I returned home for Thanksgiving.
I came home for Thanksgiving with my plans for the next quarter set – new classes, sorority events, and more were waiting for me when I returned to school. I had a scope, assuming I would get a different medicine and be on my way. I remember waking up from the anesthesia with my doctor at the foot of my bed telling my dad, “she’s a really sick girl.” I never forgot that, and being the “sick girl” became my new normal.
After learning that the medicine I required would be administered by injection (Humira) and I would need iron infusions at the hospital, I decided I couldn’t go back to school. I needed to be with my family and my doctors while I was figuring out what to do next. I was prescribed a biologic that was to be injected every two weeks. Things were going well – until they weren’t. I spent my 19th birthday in the hospital because my body had built antibodies to the Humira.
I became involved with the Crohn’s and Colitis Foundation chapter near me. I attended events including walks and educational events, and I became a Team Captain for the Take Steps Walk. Advocating for the IBD community became a goal of mine, as well as my pageant platform. I have spoken to state and national communities about Crohn’s and Colitis, and I am so blessed to help raise awareness for these diseases.
This was a word I first heard used in relation to Crohn’s and UC at an educational symposium shortly after my first hospital stay. I had never really thought of surgery in relation to my disease because, of course, “that won’t happen to me.” The presentation was being given by an IBD specialist (who later became my doctor) who was of the opinion that surgery is not the last option or a failure. Rather, surgery is just one of the treatment options. Although I respected her opinion, I just didn’t agree.
I started a second biologic, Simponi, along with Imuran, an immunomodulator. I was on this medicine combination for about six months until we determined it just wasn’t working. I then tried a third biologic, Enyvio, with the Imuran for six months, but my scope didn’t look any better. In May of this year, my doctor started recommending surgery. At 20 years old, a sophomore in college, I was adamantly against the surgery. We agreed to up the dosage of the Entyvio and try a different immununomodulator (methotrexate) over the summer and I was to be scoped again in August. I felt better over the summer and felt very encouraged going into my August scope. I thought I had finally found the medicine that would eventually put me into remission and allow me more freedom. Well, I was dead wrong. After my scope in August, it looked like surgery was becoming more and more of a possibility, and it was a possibility that I just wasn’t ready to face.
I met with my IBD specialist who, thankfully, understood my fears and feelings toward surgery. She agreed to let me try one last biologic, Remicade, until December before determining if I would need surgery. She told me it was my “Hail Mary,” but if I needed that Hail Mary to mentally feel better about surgery, she would support me. I went back to the hospital to get a TB test and get baseline labs before my first infusion. Much to my surprise, my doctor called me and told me that my labs were normal.
I was so excited! I figured if my labs were normal, I had to be getting better, right?
We agreed on extending my time on Entyvio by three months instead and re-evaluating in December. The next three months I felt probably the best that I ever had since moving home. I missed almost no classes, I was attending most of my sorority events, working two jobs, and even managed a 4.0 GPA. I felt like I had finally hit the jackpot and that this was the “miracle drug” that would push me straight into remission.
I woke up from my scope in December and immediately asked, “Is it better?” I was given an answer I wasn’t ready to hear – no, the inflammation was no better.
At my follow up appointment, it was determined that the damage was already done and trying another medicine was no longer an option. My disease was so severe that it would require surgery – as soon as possible. I was so beyond frustrated – it seemed like I had tried EVERYTHING, yet I was still facing what felt like the end of the world.
I spent my semester break meeting with surgeons and choosing a hospital and surgeon for the procedure. I would be having the three-step j-pouch surgery, and I was terrified. I finally chose a surgeon and scheduled my first surgery for the 11th of January – less than a month after I found out I needed surgery.
Everything happened so fast that it all feels like a blur or a dream. I spent the weeks leading up to my surgery terrified of what could go wrong or that I just simply wouldn’t be able to handle it. I went through the motions anyway because I didn’t really have another choice.
I can’t say that I don’t sometimes wish things hadn’t turned out this way, but the fact of the matter is – they have. The surgery wasn’t easy, but it also wasn’t the life-ending procedure I thought it would be. As my doctor told me, I now have another piece to my story that I can share with others.
As of today, I’ve been home for three weeks recovering and every day gets a little easier, a little better. I’m keeping busy with my online classes for school and crafting, which has always been a hobby of mine.
My friends, family, sisters, doctors, and nurses have actually made the process a lot more bearable than I thought it would be. It’s an adjustment for sure, but if there’s one thing I’ve learned through the four years since my diagnosis, it’s that I (and YOU) are capable of so much more than I ever realized. I have two more surgeries to complete my j-pouch, and I know they won’t be easy. But I also know that I will be back – and better than ever! 🙂
UC might knock me down, but I’ll ALWAYS get back up.
Prayers are with you Melanie!! Love ya !
In the same boat as you girl! 21 with UC since I was a baby, facing surgery now, something I never thought would be the case for me. Trying my last round of entyvio this Friday- hoping for the best but have already met with surgeons. We are pretty strong. I’m glad to hear the surgery wasn’t the hell you imagined it to be, I worry about it so much. I’m glad you are doing ok and hope for the best for you and hope you enjoy feeling healthier for a little while and enjoy yourself before going into more surgeries!! <3
I’m proud of you, Melanie! It’s an honor to know you and know the grace with which you handle your disease.
Ahh I somehow just saw this! How are you doing? Trust me, I know the feeling of worrying about the surgery. I was a basket case (and still am about the upcoming ones). Sending you hugs! Feel free to message me if you ever need to talk or need a friend ????
I just came across your blog and hope and pray you are doing well with your new Jpouch. My daughter had her surgery in 2011 due to UC. She was recently diagnosed with Crohns…
She is now on Stelara which has made her life very happy. She still has to avoid certain foods though due to blockages but other than that has no issues.
If you have any questions please reach out.