Last month I ended up back in the er with a BAD attack. I never thought it could be worse, but apparently I was wrong. I am sure the er staff thought I was acting like a crazed wombat. (In my defense, I was hurting terribly and they left me waiting 2 hours) It's hard to explain when something changes in a chronic illness but you don't know why, but there was something different during this attack. I also have started losing all that weight without anything changing such as my food intake, or lack thereof. I'm definitely not complaining, but it is just weird that all of a sudden I have started losing about 7 lbs every month. So anyway, when I was released, I decided to give IU another try.
I spent an hour discussing all this with Dr Watkins and I think we have a plan. Friday I had an endoscopic ultrasound and plexus block. They took a look at my pancreas and anesthetized the nerves to that area. The plan is to remove the pain so they can change the nausea meds around a little bit and see if we can handle this medicinally. So far so good. It's only been a few days but so far there is not alot of pain. I see Dr Watkins Sept 4th, so at that time we will see what medications he will change or add etc. Hopefully, he can make some sense of the ultrasound report. According to what I know so far, I have fibrotic tissue in the pancreas from the pancreatitis. I don't know how much or what this means, but I am hoping he does and can explain it to me. (I am a nurse, but I don't know everything)
If they aren't able to control this with meds, then Dr W wants to put in a feeding tube. this is supposed to give my pancreas a rest and allow it to heal. He says 6-12mos with the tube. If that doesn't work then we were looking at major surgery. They can remove the pancreas now without making you an instant diabetic, but it is still a major surgery. I truly hope it doesn't go that far!
Monday, August 10, 2009
How It All Began
Around Dec 12, 2006 I started feeling ill, you know nausea, vomiting, etc. Naturally, I just figured it was something I ate or a bout with the stomach flu. Most people wouldn't jump to the conclusion that you have a chronic disease right away. I started to feel a bit better as the days went by, but on Dec 18th, it all came back with a vengeance. I had been thru ulcers, gall stones and 2 abdominal surgeries, not to mention having 4 kids, and I had never hurt this bad before. I threw up so much I wouldn't have been surprised to see my socks come up. I stayed in the hospital until the 23rd when they released me so I could be home for Christmas. That didn't go so well. I was back in within 24 hours ad spent the holidays in the hospital. I don't remember much about them. I left the hospital the 28th with a Picc line, IV phenergan and no answers. They have no idea what brought this on. I had my gallbladder removed in 1989, I had a surgery to open all my valves that drown my stomach so stricture couldn't be an issue, and I don't drink because it interferes with my meds. They could tell me what it was but not the why. (That has to be the most frustrating part I think.)
I spent the next 4 months trying to control everything at home. Pain meds and IV nausea meds,
plus various treatments such as pancreatic enzymes to try to control it. I tried every treatment IU's gastroenterology department could come up with to no avail. I couldn't eat, yet I gained 60 lbs in 3 months! The doctor's decided that the weight gain was from the lack of exercise, since I now spent most of my time in bed, and I must be exaggerating about not being able to eat. They didn't even take into account that my hair was falling out. I tried a second opinion, but didn't get any better than I already was. I decided I was not going to drive 5 hours each way to see Dr Pompous Ass when I got not relief out of it. So I gave up on treatment all together.
I decided that this was just going to be my life. I had pain and nausea meds and I was just going to manage it on my own. After all I was a nurse so why couldn't I take care of me? I would still end up in the hospital 1-2 times a year when it was too bad for me to handle. After a few days I come back home and start all over again.
I wish this story had a happy ending, but unfortunately, the story has only begun. I still battle small-mod attacks 2-3 times a month. Any activity that lasts more than a few mins causes me to start sweating profusely, sweating and the nausea to begin. I feel like a hermit. I go out to doctor's appts mostly. I try to get out whenever I have a good day, but that doesn't happen often. I try not to stress about it because stress just causes a flare up. There must be a lesson or silver lining in here somewhere, but I am still looking for it. So I decided I would start writing it all down. Maybe somewhere in all this blogging I will find some answers.
I spent the next 4 months trying to control everything at home. Pain meds and IV nausea meds,
plus various treatments such as pancreatic enzymes to try to control it. I tried every treatment IU's gastroenterology department could come up with to no avail. I couldn't eat, yet I gained 60 lbs in 3 months! The doctor's decided that the weight gain was from the lack of exercise, since I now spent most of my time in bed, and I must be exaggerating about not being able to eat. They didn't even take into account that my hair was falling out. I tried a second opinion, but didn't get any better than I already was. I decided I was not going to drive 5 hours each way to see Dr Pompous Ass when I got not relief out of it. So I gave up on treatment all together.
I decided that this was just going to be my life. I had pain and nausea meds and I was just going to manage it on my own. After all I was a nurse so why couldn't I take care of me? I would still end up in the hospital 1-2 times a year when it was too bad for me to handle. After a few days I come back home and start all over again.
I wish this story had a happy ending, but unfortunately, the story has only begun. I still battle small-mod attacks 2-3 times a month. Any activity that lasts more than a few mins causes me to start sweating profusely, sweating and the nausea to begin. I feel like a hermit. I go out to doctor's appts mostly. I try to get out whenever I have a good day, but that doesn't happen often. I try not to stress about it because stress just causes a flare up. There must be a lesson or silver lining in here somewhere, but I am still looking for it. So I decided I would start writing it all down. Maybe somewhere in all this blogging I will find some answers.
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