I was diagnosed with a mild case of Crohn’s Disease back in 2015. I was 41. I’ve had digestive issues since I was born as the doctor told my mother that I had an underdeveloped digestive system. I don’t really know what that means or what, if any, treatment there was back in the 70s, but I do remember having to avoid certain foods for awhile as a young child, like chocolate, milk, peanuts, wheat, etc. I continued to have digestive issues throughout my childhood and teenage years and was at the doctor’s office frequently. Looking back at a copy of my medical records from my family doctor when I was a teenager revealed that he suspected I had some sort of IBD but I was never sent for further tests with a GI doctor, probably because my symptoms were sporadic and not completely consistent and could very well be explained away by other stressors in my life.
In addition to gut distress, I also suffered from bouts of anemia, regular migraines and headaches and sinus infections several times a year. I recall a fairly miserable existence and an overall sense of malaise. Throughout my 20s and 30s, I would continue to go through periods of anemia and be put on iron supplements until my levels increased and then go about my life. I also continued to have regular episodes of stomach problems - stomach aches, bloating, gas, diarrhea, intense stomach pains and cramping. When 2015 rolled around, I had been dealing with my gut issues for a long time but I also had been suffering from a bout of anemia for about a year without relief, despite being put on iron supplements. I began to suspect that my iron depletion was connected to my relatively common diarrhea episodes and I relayed this information to my family doctor who sent me to a GI doctor.
I had a colonoscopy and that test where you swallow the pill camera that moves through your digestive system and takes pictures of your entire digestive tract. My GI doctor said that the test results were consistent with a Crohn’s disease diagnosis concentrated in my terminal ileum, and so began the treatment options. I’m not sure if the treatment plan is the same no matter how severe the disease is, but I was put on Entocort (a steroid) and Pentasa, an anti-inflammatory. From my understanding, this is kind of the first line of defense to control the disease as the side effects are minimal compared to other drugs. The idea is to see how your body responds to the less intrusive drugs and hope that you don’t need to go beyond that.
I remember leaving the CVS after I picked up my first rounds of pills. Because the pharmacy didn’t have the 500mg dosage pills that were prescribed, I had to take twice as much in a 250mg version, so I was taking 19 pills per day and instead of my prescription coming in the regular white pharmacy bags, my order was in a brown lunch bag sized bag. I still remember walking down the aisle after picking up my prescription with tears welling up in my eyes. Was this my life now? Was I that person now who was going to have to take pills the rest of her life? I had been somewhat relieved after my diagnosis because I finally had an answer to the stomach issues that had plagued me my entire life but the reality of the situation didn’t hit until I carried that stupid brown bag out of the store.
Eventually, I accepted where I was with the hopes that the medication would do its thing and I continued to take it for the next year. I felt fairly good that year and only had a few episodes of diarrhea and discomfort. I had also started researching dietary changes that would improve my symptoms. The dietary component to Crohn’s disease seems to be highly debatable and very personalized which I’ll save for another post but the pills, along with these dietary changes had me feeling confident enough to return to my doctor to inquire as to whether I could reduce the amount of pills I was taking. He agreed to consider my request but only after I got another colonoscopy.
My second colonoscopy proved to be somewhat disappointing. Apparently, while the disease hadn’t worsened, it really hadn’t improved either and because of that, my doctor felt I should actually stop taking the Pentasa (the Entocort was only taken temporarily and for a short period of time so I was no longer taking it) and move to the more aggressive biologic drugs. My opinion (based on no medical knowledge, of course) was that while perhaps the Pentasa wasn’t necessarily making things better, it seemed to be keeping the disease from progressing and it was making me feel better in general, with no apparent side effects. I wanted to stay this course, but my doctor took what I consider an aggressive approach to treatment with the thought that you fight fire with fire to really keep the disease from progressing.
I had one other option before conceding to the biologic route and that was to try Imuran which is given to people who have had organ transplants and is used as an anti-rejection drug. I took that option because I was really resisting the biologic therapy. Unfortunately, shortly after starting on Imuran, I began to develop severe, stabbing, gnawing stomach pains to the point that I would have to take deep meditative breaths to try and sit fully upright or function.
With Pentasa and Imuran off the table, we moved onto Humira - scary black box warning label Humira which if you read Crohn's message boards/forums, you find out that the drug is a life saver or quite the opposite. I was terrified but I was more terrified of the consequences should the disease progress so I agreed to start the process. My Humira ambassador was an extremely kind and caring woman who walked me through the loading dose session (which I had run home during my lunch hour to do) and called me frequently throughout the first 6 months to check on my progress and note any issues I was having with the injections or the drug. I totally admit that Humira worked wonders in calming my system and I felt great EXCEPT about a month after starting treatment, I developed a massive UTI. I hadn't had a bladder infection in about a decade and it came on suddenly and quite painfully when I was camping no less. My husband and I were in the woods sleeping in our tent and I woke with the most painful, shooting pains in my nether region. Thankfully, we were just a few hours from home, but it was extremely uncomfortable and hurt tremendously. Fast forward through the year that I was on Humira, I continued to experience a painful UTI every other month or so and was at my regular doctor's office and Patient First offices on rotation. I had been doing some internet research on Humira and saw that bladder infections were a possible side effect and even one of the nurses at Patient First pulled up that information on her phone confirming that it was a side effect. My GI doctor, however, basically insisted that the Humira wasn't the cause because none of his patients ever complained of a UTI as a side effect. He suggested that I had something else going on and referred me to a urologist. The urologist ran several tests and everything came back fine. After explaining that I was taking Humira, the urologist agreed that it could be causing the recurrent UTI's.
What to do? What to do? Humira was working to help alleviate my Crohn's symptoms but the UTI's were unbearable and put a much higher damper on my life than the Crohn's ever did. I literally couldn't leave the house because of the pain and the urge to urinate every few minutes. It was at this point that I decided that I would rather deal with the Crohn's symptoms, something I had dealt with all my life (without a diagnosis) than recurrent UTI's. So, I quit. I had one injection pen left before I had to reorder and I just quit. I didn't tell my doctor and I didn't ask his opinion. I told my Humira rep about the situation and then I eventually called my doctor's office and told his nurse that I wasn't going to be returning to their office.
My last Humira shot was on June 26, 2018. I haven't made any arrangements to find another GI doctor yet because I've been holding my own for the past 16 months. I've made major dietary changes which are a combination of cutting out most processed foods and concentrating on a whole food, initially plant based diet and also trying to eat more intuitively. I went vegetarian for a few months but now incorporate some animal proteins into my diet. I exercise regularly (and always have) by cycling, running and a yoga practice. I've made significant changes to reduce my stress levels and practice breathing and meditation. Things aren't perfect but so far I'm holding relatively steady in the gut department.
I don't recommend or condone quitting your meds or your doctor like I did but it was clear to me that my doctor was confident that his course of treatment wasn't the cause of my larger issues at the time which were the UTI's. Additionally, he didn't believe that dietary changes had any effect (or had little effect) on the disease. Obviously he knows more about the disease than I ever will from a medical standpoint, but I felt like he was on autopilot with his knowledge and feedback and wasn't willing to entertain other protocols than what was taught in medical school, and perhaps he isn't permitted to, but I've read about other doctors who are more progressive and forward thinking about treatment options and when the time comes that I need to seek medication to control the disease again (hopefully this doesn't happen), I will seek out a doctor that is a better fit for me.
From what I can surmise, the medical community doesn't know a ton about Crohn's disease. From my 23 & Me raw data, I can tell you that I have several markers for Crohn's, which doesn't mean that I would have necessarily suffered from the disease but I have the propensity to. Genetics and environmental factors can all play a role in how the disease may manifest itself. I've read studies questioning whether Crohn's is a true autoimmune disease where the body attacks itself or whether it's the opposite where the body just doesn't have the stamina to maintain a conducive microbiome. My point is that you need to be your own advocate. Read articles, even if you don't understand all of the language, read studies, read what other people are doing to combat the disease and work with your doctor to come up with a treatment plan that you can live with.
What I find humorous about the Humira commercials is that they mention something about, "Are you just managing your Crohn's disease?" Of course you are and they can't do any better, because that's all you can do - manage it. There's no cure and there's no magic pill or shot or surgery that will eradicate it. Would I still be taking Humira if I didn't have the recurrent UTI's? Most likely, because it was most definitely helping my digestive issues. I also know that I've been super fortunate to be in a relatively healthy holding pattern since my last shot. I'm a bit terrified because I don't know what my options are for treatment should I need to return to the doctor but for the meantime, I try and maintain a positive attitude and listen to my body's cues on how I'm feeling and what foods are suiting me at that moment.
Stay healthy my friends.
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