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| This is me now. I don't have a lot of the sick pics. |
It wasn't until college that I finally became very sick but then it was GI problems. I had been in and out of doctor's offices with all kinds of issues and test after test was negative until one day I had been running a fever this mild pain that I had had in my lower abdomen near my groin and occasionally up under my left rib had spread and become unbearable. I had these hot flashes that would accompany waves of excruciating pain on top of that I had sores in my mouth and all down my throat. I couldn't eat anything. I had been tested for h. pylori on suspicion of ulcers, it was negative I thought perhaps the sores had been a result of having been intubated for an ankle surgery as they started right after that procedure. Finally, when I lost 12 pounds in a week, my doctor's office P.A. became very concerned and sent me for an abdominal CT scan. The next day, they were calling me to go in to a gastroenterologist's office right away for my results. At that point I didn't know that it usually takes 3 months to get the next available appointment in a gastroenterologist's office. I honestly thought I was just going crazy and that everything was in my head since test after test had shown nothing. The doctor brought me into his office, not an exam room but his actual office, which was weird to me because I had only seen people speaking with doctors in offices like that on TV when they were getting really bad news. He then told me I most likely have Crohn's and that it's incurable. The diagnosis was confirmed with small bowel follow through x-ray and colonoscopy where he discovered that 12 inches of my terminal ilium (the last part of my small intestine) were ulcerated.
The doctor started me on Pentasa but I couldn't tolerate it. It may have helped a bit but when you feel awful and are nauseated and in pain, taking 16 horse pills a day doesn't really make you feel well. I then tried a string of other drugs including Budesonide, which made my hands and face swell, Cipro (and several other antibiotics), which made my tendons in my ankles pop constantly, Azathioprine, a chemotherapy drug, and finally Prednisone once I landed in the hospital with a severe flare. The one thing I used that did help with some of the really severe pain was Nulev, which isn't really a Crohn's medicine but it help calm contractions of the GI tract. I still felt miserable and ended up in the hospital several times during the semester so I ended up having to drop all my classes. I then focused all summer on getting better and I enrolled in a clinical trial of a new kind of drug, a biologic called Natalizumab. It actually did help but turned me into a germophobe because it weakened my immune system so much I was catching everything. The next year I went back to school feeling better. That basically means that I no longer had to curl into the fetal position every time I ate but I was exhausted, especially after my infusions and I went around feeling like a zombie even though my blood work was somewhat back to normal and everything was looking better.
All good things must come to an end. The following February they ended the trial. I guess Natalizumab was linked to PML (progressive multifocal leukoencephalopathy), which is a very bad disease caused by a virus which most of the population carries but only becomes dangerous when the immune system becomes so weakened that the virus can become opportunistic and attacks the brain. Oh well I didn't feel that great anyway so I then went on an already approved biologic drug called Remicade/Inflixumab. It worked a little less well but no big deal.
Another bump in the road came when I was going to be aging out of my parents insurance. No one was going to give me insurance with a pre-existing condition. I tried but the lowest-priced policy I could find was $750/month and they wouldn't cover pre-existing conditions until after a year had passed so that was useless. I decided to wean myself off of the Remicade as that would cost $5000/month without insurance. I certainly couldn't afford that. Meanwhile I began to run a fever with no other symptoms except headache, muscle aches and fatigue.
Thank the Lord I still had insurance at this point. On top of the fever which was low-grade and had continued for 6 weeks before I finally went to the doctor's office, I started to have a sore throat. The PA I saw there was a total witch with a capital B. The quick strep screen had come back negative and I had a temp of only 99 since I had taken some Tylenol so she said "Why are you here? You basically came in because of a headache?" I had been feeling so miserable that day and in that moment, I just felt humiliated. "I guess so," I responded. She figured I might have Rocky Mountain Spotted Fever(RMSF) and started treatment since if I did have it, it would kill me before the results of the blood test ever came back. I took the full course of antibiotics which should have stopped it but I was still sick and still running a fever. I was referred to an infectious disease specialist who began to test me for everything under the sun. I then developed a rash all over my arms, legs and trunk so they sent me to dermatology where they did a skin biopsy. They thought perhaps it was Sweet's syndrome which is basically extra-intestinal Crohn's disease. By then my throat was swollen even more and I was so miserable they decided to do a throat culture too. That evening my fever spiked to 106 and I ended up having to be admitted to the hospital.
In the hospital they ran more tests and found that my white blood cell (WBC) count was very low, liver enzymes were elevated, I had developed a heart murmur with some inflammation around my heart, and my throat culture, when it came back, showed I had a strep b infection and my test for RMSF had even come back positive. I had five teams of doctors working on my case with no idea what was going on. My WBC count was so low they were thinking Leukemia then further studies showed that wasn't the case. Finally the team from internal medicine, upon running more blood tests, figured out it must be Lupus and started me on Prednisone just in time. That was a scary time for me I never felt more miserable in my life and I was sure I was going to die if they didn't figure out what was wrong with me in time. I did survive but had a rocky road trying to get better from Lupus. I had to get bounced back and forth between GI and Rheumatology because some symptoms of Crohn's and Lupus overlap. It was extremely frustrating because no one had any answers and the meds the GI doctor had used would no longer be safe to use since I had Lupus but there are so few treatments for Lupus and I was unwilling to be on Prednisone long term as it is a miserable drug and made my face and tummy really fat so that was actually the start of my realizing how little I needed the doctors in my life. I would like to have doctors to monitor me but that's not a possibility so I have to take care of myself. There will be more on that in my next post.
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