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 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
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
