Guest guest Posted June 28, 2004 Report Share Posted June 28, 2004 Hi my name is . I am a 35 year old female. I was diagnosed in 1997 with chronic sclerosing pancreatitis. In 1998 I had 2 surgeries leaving me with only about 1/2 of my pancreas and no spleen. Problem solved? For a while. I started having problems again in about Dec 99 or Jan 00. I was put back on my pancreas, and pain meds. In July 2001 I had my gallbladder removed. It helped for a short time but as before I started getting attacks again. I would go to the ER when they were serious enough get a shot and sent home because my amylase on lipase levels were normal. The ER doctors dont know enough about the disease to know that with cronic pancreatitis you levels can be normal. Earlier this year I was sent to University Nebraska Medical Center to see a GI " Specialist " , All he did was increase my pancreas and add Nexium to my list of meds. Last week after losing about 10 lbs in a week. I was put in the hospital for 3 days. The doctors did an endoscopy, colonoscopy, and an MRI. My GI told me that my tests were all normal. I am still in pain. I have no appetite. I am " run down " (probably from my pain pills). I am also getting stressed and depressed. I am looking to find a pancreatologist so that maybe I can finally get some answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2004 Report Share Posted June 30, 2004 My first suggestion would be to see a pain management Dr. ASAP. These physicians specialize in managing pain. They can be your first ally in helping. Your story is not unusual to any of us here, we have all been through the same senerio, just different faces, and different names. You are correct when you say that enzyme levels don't change with disease progression. Continue with you search for a pancreatologist, but I think you would greatly benefit from seeing a pm Dr. I would bet that most on this board already have a pm Dr. Atwell LPN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Hi Sherry, I can definitely relate to all you have said. I am 12 days post-op, and though it gets better each day, it's still been a difficult road. I was very dehydrated after and also lost ten pounds due to the difficulty of eating and drinking. Also, I only took my medications once after leaving the hospital because they were not only hard to take, but making me feel sick. I asked my Dr. at my one week check-up if it was OK that I was not taking my antibiotics. Surprisingly, he said it was fine. As long as things are healing OK, he said that I got enough while in the hospital to be fine. In other words, I did get the impression that the risk of infection was very low. I still am completely numb and still swollen, but I know that it is still relatively early on, so I'm hoping all of that will subside with time. Hope that you're feeling better -- it does get easier every day --- I promise! Good luck. > Hello--my name is Sherry. I just had suegery on June 7th for TMJ. > Terrible daily headaches etc! Apparently my lower jaw was too small and > receeded etc...they put in correct position and pulled it forward, > doing upper jaw at samw time. They seperated my palate into three > sections. I have 28 screws and 6 plates. Sounds gruesome...It is 6 days > post-op and I am sooo discouraged. My mouth tastes totally aweful and > lacks feeling. It makes it very hard to be motivated to drink anything. > Of course, now I am weak and dizzy, already losing 10 lbs! I am keeping > myself hydrated though with protein drinks and water and pepsi and > soups etc. Just not taking in 'a lot'. I am absolutely terrified of > getting an infection b/c it would set me back so far. Please tell me it > is extremely rare!!I hope whoever reads this is recovering well and are > happy they had it done. > Take care > Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Sherry, Welcome to the board and to the post-op side of the world. I too suffered from daily migraines. I woke up with one and lived with one all day and went to bed with one. I'm 5 1/2 weeks post-op from upper & lower surgery. Recovery has been difficult at times, but each day ( for the most part ) it gets a little bit easier. Keep up your fluid intake and maybe try experimenting with blending some things you like. Keep cleaning your mouth as your doctor prescribed - a baby toothbrush and prescription mouthwash should help you feel better. We all lose weight. Some of us can afford to ( like me ) and some can't. Try drinking things like Ensure and Boost to keep up your caloric intake to heal ... and know that you will put at least some of the weight back on, eventually. Hang in there ... vent when you need to ... and ask questions when you have them. We're all in the same boat ... and routing for each other! Carol > Hello--my name is Sherry. I just had suegery on June 7th for TMJ. > Terrible daily headaches etc! Apparently my lower jaw was too small and > receeded etc...they put in correct position and pulled it forward, > doing upper jaw at samw time. They seperated my palate into three > sections. I have 28 screws and 6 plates. Sounds gruesome...It is 6 days > post-op and I am sooo discouraged. My mouth tastes totally aweful and > lacks feeling. It makes it very hard to be motivated to drink anything. > Of course, now I am weak and dizzy, already losing 10 lbs! I am keeping > myself hydrated though with protein drinks and water and pepsi and > soups etc. Just not taking in 'a lot'. I am absolutely terrified of > getting an infection b/c it would set me back so far. Please tell me it > is extremely rare!!I hope whoever reads this is recovering well and are > happy they had it done. > Take care > Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 The best advice I could give you would be to read the posts ... ask lots of questions, both here and of your doctors ... and just take it one day at a time. Good luck on your journey, Carol > hi all, am new here ... just got braces 2 months ago and scheduled to > have jaw surgery 18 months into treatment ... just wondering if I > made the right decision so joined up with this group to see > feedback > this is something I have been wanting to do for years, just have not > had the funds to do it! anyways looking forward to any replies Quote Link to comment Share on other sites More sharing options...
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