I finally got in to see my new GI doctor last Thursday. The visit didn't go as expected.
After going over my history with him and discussing my current symptoms he was very concerned with my health. He ordered a upper GI endoscopy and colonoscopy for the following week. He said we needed them ASAP. The severe amount of inflammation in my body plus not being on any medication (ever) means that I have basically had some sort of inflammation in my GI since I was diagnosed. He said all that inflammation is a precancerous atmosphere for my body. If it isn't put under control, I'll surely be setting myself up for colon cancer.
That scared me.
So we discussed treatment options and medication choices. He was of course pretty insistent on me taking the one drug I did not want to take: prednisone. I broke down in tears right then and there. My problem with the drug lies mostly in it's many horrid side effects but also that I would just prefer not to put steroids in my body. Unfortunately, prednisone is a tried and true quick inflammation reducer so there really isn't many other options.
After we discussed it at length he promised me he would monitor me very closely so that he could minimize the side effects. Of course, I was still hesitant and told him let's wait and see what we find. He also started me on an antibiotic that only stays in the gut to kill any bacteria/infection I may have been harboring from the food poisoning in July that set this flare off. I took the first dose on Friday.
Friday afternoon at work, my right knee was hurting me a little bit. I never have knee pain so it took me by surprise. On Saturday, my knee was red and I could feel a bump like maybe it was an ingrown hair or something. I dismissed it and moved on.
When I woke up Sunday not only did my knee hurt even more, but my left foot and ankle and my right hip were hurting. And my left hand was red and swollen too. I knew something was wrong. After talking with my mom and trying to figure out what the heck was going on she mentioned a possible allergic reaction to the meds I started. I pulled out the insert and starting reading. Sure enough there was a section about hypersensitivity and one of the side effects/symptoms was angioneurotic edema, which is basically swelling in the extremities. I didn't take the night dose on Sunday and stopped taking it all together.
When I woke up Monday, I was in a lot of pain. It was really tough for me to even get out of bed. At this point both knees hurt(although the right was still the worse), both ankles, my left hand, and right hip all hurt. And a previous injury to one of my fingers on my right hand that hadn't totally healed was know severely swollen and deformed. I had to call in sick to work because I not only could I not use my left hand but I even had a hard time just walking.
Yesterday morning was the worse. When I tried to get out of bed I felt pain in every part of my body. My joints were red, swollen, painful and stiff. I could barely move. I felt like I was 90 years old. I sat at the end of my bed and cried. What was happening to me?
I was nauseous and weak, at times dizzy. I got in the shower and at one point felt like I was going to pass out. This was not good. Fortunately, I had called my primary doctor the day before and had an appt scheduled for that morning at 8. I had to call my mom to come over and help me the kids to school and me to my appt because there was no way I could drive. I also had my endoscopy scheduled for that day. I had to check in at 11:30a.m.
After 2 hours in my doctor's office, she sided with me on the notion that it was probably some type of hypersensitivity I was having from the antibiotic. But she was really concerned with the amount of redness and swelling in my knee. Luckily I had gone to the lab the day before and had blood drawn so she was able to use those results as a reference. I gave her a urine sample and waited. After she discussed it with the doctor above her and going over my lab results, they feared that I was becoming sceptic and that even though there wasn't an infection yet, I was on my way there very quickly. She said I may have go to a orthopedist to get my knee tapped. Cheese and rice.
She told me I probably would have to cancel my procedures because we didn't want to risk a perforation in my stomach with the possibility of an infection brewing. That would be all bad for me. I asked her to consult with my doctor and see what he said. He was confident that all that joint swelling was a direct result of my IBD; a classic sign. I had already known that that could be a possibility as well, but I felt like the antibiotic did contribute to the sudden severity of my joint issues. We would proceed with the procedure as planned.
When I was finally wheeled back into the procedure room, I had my doctor take a quick look at my knee. He stuck to his previous assertion that this was a classic sign/symptom of IBD. I told him I was willing to try the prednisone for a short amount of time, like a couple weeks and he shot me down once again. There could be no time restraints put on my course of treatment. I cried again.
I am just feeling so defeated by the horrible disease. I feel helpless. And it makes me sad.
I had been running a low grade fever for days so I went home and took some Tylenol. To my surprise, within about an hour of taking those 2 pills, I had almost complete range of motion back in my legs. There were still swollen, red patches but they didn't hurt as bad. I don't know if it was truly the Tylenol that did it, or maybe the anesthesia I had earlier that day contributed. I was just overwhelmed and grateful to be able to move without such pain.
The results of my endoscopy only showed a moderate amount of gastritis (swelling in the stomach lining). Everything else was normal. My colonscopy is scheduled in about 4 hours. I haven't eaten anything solid since Monday night. I wasn't hungry yesterday but today after the last of my prep, I am starving. I could go for a good bowl of soup when I get home.
Knowing now how quickly this can progress I feel like I have no choice but to give this crap prednisone a try. I am just putting faith in my body that it responds quickly and I won't have to be on it very long. I am also going to make some herbal teas that are natural diuretics that will help with the water retention I may have.
I will probably start my first dose this afternoon. I am holding onto hope that this will be short dose of meds. Hope is pretty much all I have.
* I hadn't realized I already wrote about the GI visit. Sorry for the repeat of information.*
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