I was diagnosed 14 years ago; I have Ulcerative Colitis, a form of inflammatory bowel disease (IBD), but I've likely had the disease at least 17 years. IBD is a disease of the digestive tract. My type of Ulcerative Colitis is called pancolitis, meaning it affects most of my large intestine, from the very end all the way to the cecum, where your colon attaches to my small intestine). My disease mostly lives in the end of my colon and rectum, but I've also had some erosion problems in my small intestine. This means I could have Crohn's Disease (another form of IBD), but, for now, my diagnosis is UC. IBD is an autoimmune disease, resulting from an abnormal response by my body's immune system. Normally, the immune system works to protect your body from infection, in my body, the immune system mistakes the intestines for foreign or invading substances. This sends white blood cells to the lining of my intestines, producing chronic inflammation and ulceration.
Two and a half years ago, I started on Humira, a dreaded biologic drug. Humira works by binding to a protein in the body called tumor necrosis factor (TNF), which is produced by the body's immune system. In people with IBD, there's an overproduction of TNF associated with inflammation in the digestive tract. Humira is a TNF blocker, which binds to the TNF and blocks its action in the body, helping to reduce inflammation and symptoms of IBD. Since Humira lowers the body's immune response, people who take medicines like Humira have a much higher risk for serious infections, such as tuberculosis, and other viruses, fungi, and bacterial infections. Thanks to Humira, I also have a higher risk for lymphoma and other cancers. One of my cousins died from complications related to the disease that also plagues my bowels, so I took these risks very seriously.
The risks were weighed against the benefits, and with a lot of support from my wonderful GI doctor, I started on Humira. I give myself injections every two weeks. It was working, and for two years, I was feeling alright. My hair stopped falling out. I stopped having to run to the bathroom. I stopped having to use enemas and take 22 pills a day. In April, my colonoscopy was completely clear and healthy. My white blood cell counts in August were the lowest they had been in many years, and less than half of what they were before I started Humira.
Then things started to change.
Over the summer, I had what I thought were infected mosquito bites - one in June, two in August. They gave me antibiotics. I got a really stiff neck in July that made it so I couldn't turn my head for few days. More of my muscles started to cramp up. I'd wake up in the night with cramps in my hip joints that would leave me howling in pain and leave me sore for two days afterwards. I thought I was dehydrated so I started drinking more water and taking more vitamins.
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| My arm after 10 days of antibiotics - the red line was drawn before my first doctor's appointment, so we could measure how big it got. I wish I had better pictures of how big it got (it was past the red line before the antibiotics) |
In September, I woke up one day with six spots of what looked like hives. They quickly turned into large spots of cellulitis/dermatitis - one on each forearm, one on my collarbone, two on my left leg and one on my right leg. I went to my primary care practice, where I saw one of the doctor's, Dr. S, instead of my regular primary care doctor, Dr. P so I could get in sooner. Dr. S called in Dr. P into the exam room to see these welts, because he wanted a second opinion on the crazy thing going on with my body.
At first, they thought I was having an allergic reaction to Humira, and told me to stop taking the Humira until we can figure out what's going on. They sent me for rush bloodwork, put me on medicine, and asked that I come back in two days to get checked. Two days later, I was better, but still inflamed, and in pain. I almost had to miss the wedding of one of my best friends because my doctors did not want me to travel downstate for the weekend. I had to promise that I'd go to the ER if things got worse, and text Dr. P updates throughout the weekend to let her know how I was doing (I seriously have the best doctor ever). I got back from the trip and was referred to a dermatologist. He thought they were infections resulting from the immune suppression from taking Humira.
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| Right eye with uveitis. |
I saw my eye doctor on a Thursday for an annual checkup. Everything was good, I hadn't had a bout of uveitis since I started the Humira. Uveitis is another autoimmune syndrome dealing with inflammation in the iris (the brown part) of the eye. Humira is also used to treat recurrent uveitis, which I had suffered from twice a year for five years before I started the Humira. Since we thought it was an allergic reaction, I skipped my 2nd Humira shot on a Friday and by Monday my eyeball was a mess. My vision in my right eye dropped to 20/600 with my glasses on (20/20 is normal clear vision, 20/200 is legally blind). So I got some steroids. Two months later, and I will be finishing up the steroids for my eyes this week and my vision is back to normal (with my glasses at least...I'll still never see without them, and I'm ineligible to ever get corrective vision surgery due to my eye problems). I'm so thankful for my eyeballs resiliency. I have been told that for many people with vision loss from uveitis, their vision doesn't bounce back like mine does. Uveitis is one of the leading causes of blindness. For some reason, it's not my destiny to go blind just yet.
After a few weeks of antibiotics, I had a new spot on my leg. The dermatologist prescribed me steroids and told me I was free to start the Humira once I finished the antibiotics. I saw Dr. P again, told her how my joint pain and muscle stiffness was getting worse. She saw how swollen and puffy my hands were, sent me for bloodwork and referred me to a rheumatologist. The RH panel came back negative but it doesn't always have a positive response during inflammatory arthritis. The rheumatologist that was recommended can't see me until February 24th!! I called other doctors trying to see if I could get in earlier, but alas, some of them are not booking new patients until MAY!!! I was calling in October...so I'll have to endure four months of pain before the new doctor can begin to try to see if they can figure out what's wrong.
Due to my Ulcerative colitis, I can't take over the counter painkillers. They actually cause inflammation and diarrhea in people with IBD. I've been treating my swollen joints and muscles with fish oil tablets, Biofreeze and lots of Epsom salt baths. The pain moves around. My hands are so bad at times, I have to ask a neighbor to open my pill bottles. This week, it's in my right knee the worst, but it changes from day to day. Some days, I can hardly walk the pain is so severe. Four months of this until I can even see a doctor who can maybe help treat me? The system is broken.
I finished on the antibiotics, and I started the Humira again. Two weeks later, more spots, this time 2 on my leg. I went to the dermatologist and had them biopsied. Nothing conclusive came from that...it might be drug induced, but the fact that I've been on the Humira for more than two years leads them to think it's probably not. So, we still don't know what's going on. I spent $340 on copays just on doctors appointments in the month of November. This is on top of my normal monthly prescription co-pays. And I'm not sure how much I spent on bloodwork for the 4 times I had blood drawn that month, since I haven't gotten those bills yet. In a world where we're not sure what will happen with health care, I am honestly terrified.
That's where I am currently at medically. This is what Ulcerative Colitis looks like to me. This is what 1.6 million Americans suffer with. Sure, some people with UC and Crohns Disease might play in the NFL or compete in the Olympics. But most people look more like me - with lots of doctors appointments, lots of money spent, and lots of pain, lots of waiting, and lots of unknowns. I'm currently a part of several research studies to help scientists learn more about my disease. And some day, they will hopefully figure out what causes it, how to better treat it, and noone else will have to suffer from it.
So, yep, this is Crohns and Colitis Awareness Week. What can you do to help? One way you can help to raise awareness is to contact your congressperson and ask them to join the Congressional IBD Caucus or to support initiatives to provide better funding for IBD research. More information about contacting your representatives can be found here. Ask them to support things like "The Patients' Access to Treatments Act", which is important, not just for those of us with IBD, but many other diseases where treatments are costly and getting more so every day. And most importantly, keep fighting vigilantly for health care, because drug companies and insurance companies make a lot of money off the backs of hard working people. Everyone should have access to health services without the fear of a financial burden.
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