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I had a moderately severe case of ulcerative colitis. I was diagnosed in my mid-20s, though my doctor believed I actually had it since I was 13.
I spent many years trying different medications, participating in drug trials, and taking several rounds of high doses of steroids. I finally ended up on Remicade.
It was such a blessing. For 5 years, I was in remission.
Then in late 2015, I began having strange symptoms. I began falling for no reason, had trouble with math and spelling (even though I was good at those subjects), and was having memory problems. My primary care was concerned I had MS, so I was referred to a neurologist.
I had memory tests, EEGs, multiple MRIs, and other tests. During my testing phase, the neurologist wanted me to stop taking the Remicade, to see if that might be the problem.
After was all said and done, my symptoms had improved, and I did not test positive for MS. My neurologist believed the Remicade caused my problems, but could not definitively say so, as I was also low in many vitamins and minerals.
In the meantime, my UC had flared horribly. I was on steroids for over a month and still had no relief. My GI was ready to put me in the hospital. He also wanted me to start Remicade again, as it was the most fact-acting biologic. He did want to switch me to Entyvio as soon as my flare was under control.
I never got that chance. On June 22, 2016, I had my Remicade infusion. I drove home, but shortly after arriving, I began to not feel well. I went to bed to try and sleep it off. I remember being in this weird "dream/awake" state. It was like I was sleeping, yet I knew what was happening around me. I began to feel paralyzed. I was trying so hard to move, but I couldn’t. But I couldn’t fully wake up in the beginning. Eventually, I was able to wake and told my husband I was getting sick. I asked him to help me to the bathroom. Once he got me up, he had to help me walk, because I couldn’t.
He helped me to the bathroom, but as soon as he let me go, I fell to the floor and got very sick. My husband dialed 911. The day my life changed forever: June 23, 2016.
We lived several miles outside of a very small town. It took a while for the ambulance to arrive. In the meantime, I had to lay on the floor because I had no control over my body. Once they arrived, I could tell they were treating me for a stroke (I was an EMT in my early 20s). I just couldn’t believe it. I watched them load me up with a strange detachment, like it was happening to someone else.
I finally arrived at the local small-town hospital. The doctor there had a video conference with a hospital in Denver. It was determined I would be flown there immediately.
The fixed-wing picked me up at the local airport and flew me to Denver.
I was taken to the Neurology Unit at Swedish Hospital. I had so many tests. Though I presented as a stroke, I did not have a bleed. I did not have a clot. My results had to be sent to the Mayo Clinic, plus consulting with numerous other doctors including on Oncologist. I had 6 Neurologists on site trying to determine what happened to me.
They determined I had "demyelinization" of the nerves in my brain stem due to the Remicade. They were only able to find 6 documented cases in the world.
I had lost my speech inflections and the ability to walk or move my left side. I also had double vision.
I spent 6 weeks in the acute rehab center. I was released home, where I had at-home therapy. From there, I progressed to outpatient PT/OT.
2 months after being released, I started noticing some weird tingling/prickly/electrical sensations in my left side. It progressively got worse. It was determined I now had neuropathy as a result of the damage to my brain. It hurt to touch something soft. Laying on a bed of nails, it was so painful.
But luckily, I had regained some movement in my left side. I could walk with a rolling-walker and a leg brace. I was very slow. My arm/hand was still not working.
But then, the UC flared its ugly head again. The flare was one of the worst I had ever had. I was hospitalized and given very high doses of steroids. I spoke with my new GI about having my colon removed. Within a month, I had a total colectomy with an end ileostomy.
The last year was extremely difficult; learning the ins and outs of taking care of my ileostomy, trying to cook, clean—all with one hand. I was extremely depressed and anxious. I couldn’t work at my job. I couldn’t drive. I had difficulty remembering.
Fast forward to now. It’s been two years. I have almost accepted what life chose to give me. I found a wonderful therapist, a great support group. And I never would have survived without the love and care of my husband.
My neuropathy, though still painful, is mostly bearable with medication. I am on anti-depressants and anti-anxiety medicines. I cannot sleep without my sleep aids. But I have persevered through so much. I am walking some without a cane. I am able to ride a recumbent bicycle for exercise. I can cook and clean. I’m very slow and get tired easily but some tasks can be done independently. I’ve had to learn to ask for help. I have trouble remembering. I mix up my words when talking. I still cannot move my left arm or hand. I still cannot drive due to my slow reaction time. I have learned to adapt to the best of my ability.
I’ll admit, I still have very bad days. But I have some decent days, too. Those are the ones I live for. I will never give up.