I am still here!

It's been a long time since I've posted anything so here's my update. I bought Dragon, so now I have no excuse but but to keep this more updated.

In my last post, I had had the second nerve block. It only lasted three weeks. So they are obviously weren't going to work for me. The next thing I tried was a G/J tube. The doctor put it in December 7, 2010. I had to have it replaced February 1, 2011. I was put on tube feedings 24 hours a day. It didn't go well. I tried four different kinds of formula and all of it made the nausea incredibly horrible. When I read the label I realized that all the formula was incredibly high in fat! And low-fat diet is usually key for someone with chronic pancreatitis. So I gave up on that, but I kept the tube. In July, it became displaced sitting between the stomach and abdominal wall. It's very uncomfortable. Actually it downright hurts. So it was replaced with a G tube. It has come in very handy during a flareup, as I can put pain medicine and Phenergan into the tube and most of it gets absorbed before the nausea overwhelms me. It is hard to hide under your shirt, but well worth it for its benefits during flareups.

in my last postI had In my last postI have gone back on my low-fat diet. Being very careful eat seems to work well for me at this point. I know there are certain foods I just can't eat anymore. If I try to stray from that I always pay for it later! Needless to say, I won't be going out for Mexican food anytime soon! Some days, actually a lot of days, I have to stick with soft food like Jell-O, yogurt, pudding that is easy to digest and some days I stick to just liquids but that's what works best for me right now.

I still have flareups. I have minor ones a couple of times a month. I have major ones that put me in the hospital 3 to 4 times a year for a few days at a time. But I have found some online groups dedicated to people with pancreatitis and that does help. Not only do you get a lot of information from other people's experience, but you know you're not alone. They're always willing to offer suggestions or share their experiences when you share your current problem. Also I have learned from these groups just how bad this disease can get. Diabetes, fluid retention, malabsorption infection just to name a few. It scares me to know that most likely one day that will be me, but it makes me realize how lucky I am right now that it's not as bad as it could be. Although the fatigue is the worst part for me, I am able to still do some normal things as long as I plan ahead a little bit. So for now I'm just grateful that I still can't do those things.

The most bothersome thing is when you have a really good day and people think that you're cured or all better. They say things like " I'm so glad you're feeling better now". This is a life long disease. At present there is no cure. There is only coping and controlling the symptoms. I hope one day there is a cure because living with chronic pancreatitis is no picnic!

I have learnedAnother thingAnother thing I've learned

More of the Same

Well I had the 2nd block done and it is already wearing off. I just hope it doesn't go as bad as last time. The 2 weeks before the 2nd nerve block was pure hell. It was pain all day every day. Forget trying to eat. It was not happening.

I do not know what is going to happen now. I go back to see the GI doc in 2 weeks and we are having a major discussion. Over the last 3 years my diet has gotten smaller. I am now having trouble digesting beef, so I mostly eat chicken. I think my daughter decided to become a vegetarian just so she wouldn't have to eat chicken anymore! But something has to be done soon.

The only thing more frustrating is dealing with the social security office. Any sustained activity causes an 'episode' but they keep telling me there is some 'work-type activity' that I can do. Since I spend most of my time in bed, that leaves only 1 profession doesn't it? Hell why did I even go to college? LOL (I have to keep my sense of humor about things or I'd be completely crazy!)

That is the end of the update for now. I am hoping in 2 weeks I have some sort of answer whether I like it or not!

Another Day Another $10k

I had the nerve block done in Aug ad it lasted all of 30 days. Now they wanna do it again to see if it will last longer. Apparently in some people it lasts up to 6 months. I'm just not lucky enough to be one of those people. He wants to add Ativan to my med list but that is now up to my PCP to prescribe it. I don't know if he is gonna be comfortable with that. So far the only new info I have is that there is a lot of scar tissue in my pancreas. Kind of a duh moment though. I expected that after everything it has been through.

If this block is no more effective than the last, then we are going to have to move o to the next step which is a G/J tube for 6-12 months. I can hack it as long as they let me drink. Not alcohol, but regular stuff. There is no way I can go that long without something to drink. It drives me nuts just being in the hospital for a few days ad they won't let me drink anything.

The not so good news is the PCP think the pancreas is gonna have to go eventually. The GI guy talked about it down the road, but it may be closer than I think. But they can do it now where you do not become instant diabetic. Gotta find the bright side or you could go nuts with this disease. Still trying to find something good to say about the SSA who keep telling me I can work........................... I will just have to keep looking!

Current treatment plan

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!

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.