Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 In a message dated 01/12/2000 9:29:35 PM Central Standard Time, castaldi@... writes: << I am glad to have found the rest of you. Debbie >> Welcome Debbie to this wonderful and supportive group of folks. Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Hi Debbie and welcome!!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Debbie, welcome to the group. You sound like a person with a positive attitude. After I got sick from RP, I gained a lot of weight from the Prednisone and stressful eating. I have been trying to exercise for some time now to lose some of this weight and not to lose too much muscle. I once fast walked 10 miles a day. Now I am lucky to walk a half mile, slow at that. It is great that you can run 3 miles a day. Again, Debbie, welcome. Ronnie In a message dated 1/12/2000 7:29:31 PM Pacific Standard Time, castaldi@... writes: << Hi everyone I am the 90th member of your group. I am the mother of two wonderful boys ages 10 and 13 years. I was diagnosed with RP and RA in 1991 after two years of listening to doctors tell me go home and take a hot bath. I have worked my way off many medications and currently just take placquenil and ibuprophen. What has intriqued me to write is the lastest thread on heart palpatations. Just eight months ago I developed such palpatations which drove me to my GP because congestive heart failure runs in my family. After two days of testing which involved treadmill runs, MRI, ECG and many others I have forgotten, they said it was a routine thing and gave me Inderol to lower my heart rate. It has helped tremendously and I am much more comfortable. When diagnosed with RP I thought the world was coming to an end for me but I decided I was going to better myself in spite of it. I gave up smoking, which I should have done a long time ago, and started into exercise which seeems to be my best defense. I still have days that I can't raise my arms over my head, and others that my ears are so painful it is hard to think but I also know that I am strong enough to run three miles a day and things could be much worse. I am glad to have found the rest of you. Debbie >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Debbie, welcome to the group. You sound like a person with a positive attitude. After I got sick from RP, I gained a lot of weight from the Prednisone and stressful eating. I have been trying to exercise for some time now to lose some of this weight and not to lose too much muscle. I once fast walked 10 miles a day. Now I am lucky to walk a half mile, slow at that. It is great that you can run 3 miles a day. Again, Debbie, welcome. Ronnie In a message dated 1/12/2000 7:29:31 PM Pacific Standard Time, castaldi@... writes: << Hi everyone I am the 90th member of your group. I am the mother of two wonderful boys ages 10 and 13 years. I was diagnosed with RP and RA in 1991 after two years of listening to doctors tell me go home and take a hot bath. I have worked my way off many medications and currently just take placquenil and ibuprophen. What has intriqued me to write is the lastest thread on heart palpatations. Just eight months ago I developed such palpatations which drove me to my GP because congestive heart failure runs in my family. After two days of testing which involved treadmill runs, MRI, ECG and many others I have forgotten, they said it was a routine thing and gave me Inderol to lower my heart rate. It has helped tremendously and I am much more comfortable. When diagnosed with RP I thought the world was coming to an end for me but I decided I was going to better myself in spite of it. I gave up smoking, which I should have done a long time ago, and started into exercise which seeems to be my best defense. I still have days that I can't raise my arms over my head, and others that my ears are so painful it is hard to think but I also know that I am strong enough to run three miles a day and things could be much worse. I am glad to have found the rest of you. Debbie >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2000 Report Share Posted January 16, 2000 Debbie Welcome to the group it's great to have you with us! love Sue P New Member > From: castaldi@... > > Hi everyone I am the 90th member of your group. I am the mother of two wonderful boys ages 10 and 13 years. I was diagnosed with RP and RA in 1991 after two years of listening to doctors tell me go home and take a hot bath. I have worked my way off many medications and currently just take placquenil and ibuprophen. What has intriqued me to write is the lastest thread on heart palpatations. Just eight months ago I developed such palpatations which drove me to my GP because congestive heart failure runs in my family. After two days of testing which involved treadmill runs, MRI, ECG and many others I have forgotten, they said it was a routine thing and gave me Inderol to lower my heart rate. It has helped tremendously and I am much more comfortable. When diagnosed with RP I thought the world was coming to an end for me but I decided I was going to better myself in spite of it. I gave up smoking, which I should have done a long time ago, and started into exercise which seeems to be my best defense. I still have days that I can't raise my arms over my head, and others that my ears are so painful it is hard to think but I also know that I am strong enough to run three miles a day and things could be much worse. I am glad to have found the rest of you. Debbie > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2000 Report Share Posted January 31, 2000 hi debbie--WELCOME to the group. i can't believe you run three miles a dy. m hats off oyou. my back hurts walking to the kitchen without support. keep up the god work.. i know i feel better when i can excercise a little. when i am havinga good wekk i try : what i do is g to a store amd hold on to shopping cat.(and walk(since my scoliosis has gotten so bad from the five fractures i have to hold on to support to give my back a brak) and i walk until i get tired. in my better months this had gtten up to an hour and a half of walking and holding. however i have been sick more lately. i have to buld up my strenght again' so again my hats off to you and run a mile for me thanks an again welcome. deise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2000 Report Share Posted March 2, 2000 In a message dated 3/2/00 1:24:21 PM Central Standard Time, katwench@... writes: << I live in NY but have an appt with Dr. Trentham this month for a full evaluation, >> I am typing this so you dont get disapointed when you go to Trentham, He Only Spends About 20 Minns with you and thats it! So dont get your hopes to high, a-lot of us got our hopes up only to be knocked back down . Welcome to the Group! I hope someone will answer your other question. P Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2000 Report Share Posted March 2, 2000 Hi Kathleen and welcome--Where in New York do you live..I live in Bergen County in New Jersey but I work in a hospital in Suffern,NY..My husband Pete has RP..his has been confined to the Vestibular System but as you will find out everyone with this disease is different..Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2000 Report Share Posted March 2, 2000 Kathleen, I don't have an answer to your question, but in my case it has been progressive from deforming my nose to 10 years later spreading to my ears. I've found that if I scratch or injure and ear, it does not heal. I had a melanoma surgery which did not heal. Seems to me, one cartiledge is disturbed, RP steps in and hinders the healing process - so be careful out there! So, no percentages to offer but: 1983 - saddle nose deformity after extremely painful episodes. Once or twice per year episodes for 14 years before it spread to one ear and then both ears. New Member Hello everyone! I am new to the group and have was diagnosed with RP a year ago. It is currently only affecting my left ear and in the beginning, only had a flare up once or twice a year. I have now had three (3) episodes since December 1999. Can any of you answer a question that hasn't been answered by the Dr's yet ... what is the percentage rate of those with RP staying centralized in the area first diagnosed? I live in NY but have an appt with Dr. Trentham this month for a full evaluation, but if anyone has the answer to my question, it would greatly help, as well have all your e-mails I try to get through. Thanks for your help in adavance. ------------------------------------------------------------------------ MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE! Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! http://click./1/2122/0/_/32049/_/952021942/ ------------------------------------------------------------------------ hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2000 Report Share Posted March 5, 2000 Hi Kathleen, I was diagnosed 4 months ago but that's after one year of my right ear flaring and then moving to the left ear. So far this is the only areas the dr's have confirmed affected by RP (I think there may be more). I have a question for you, did you just contact Dr. Trentham to sch. an evaluation or did this go through your current Dr. and insurance? I'm trying to get evaluated and figure out how/who to do it? thanks Kathy C. New MemberHello everyone!I am new to the group and have was diagnosed with RP a year ago. Itis currently only affecting my left ear and in the beginning, onlyhad a flare up once or twice a year. I have now had three (3)episodes since December 1999. Can any of you answer a question thathasn't been answered by the Dr's yet ... what is the percentage rateof those with RP staying centralized in the area first diagnosed? I live in NY but have an appt with Dr. Trentham this month for a fullevaluation, but if anyone has the answer to my question, it wouldgreatly help, as well have all your e-mails I try to get through. Thanks for your help in adavance.------------------------------------------------------------------------MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE!Get a NextCard Visa, in 30 seconds! Get rates as low as 0.0% Intro or 9.9% Fixed APR and no hidden fees.Apply NOW!http://click./1/2122/0/_/32049/_/952021942/------------------------------------------------------------------------hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 Thanks for your input. I'm hoping to have more answers after meeting with Dr., but won't get my hopes up. I look forward to Dr. B's results of her study in April. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 Thanks for the welcome and your input. I'll let you know the outcome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 Hi Janet .. thanks for the welcome I live in Congers, near Nyack and work in Woodcliff Lake, NJ. Do you work at Good Sam? I was there a couple of years ago for kidney surgery. Also, thanks for the info on your husband. I think it's great you spend the time to find the support you need for both of you. K Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2000 Report Share Posted March 9, 2000 Kathleen- Yes I work at Good Sam..I have worked there off and on since 1969!!!!!!!Gosh we are almost neighbors.May I ask what doc you go to??There arn't too many that are knowledgable about RP.Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2000 Report Share Posted September 9, 2000 ......welcome. I have had fibro for 4 years now along with allot of other things. I am going through a really bad time (emotionally) right now, but I will continue to post as I can. Glad to meet you. Jan M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2000 Report Share Posted September 13, 2000 In a message dated 9/13/00 1:49:08 PM Eastern Daylight Time, ReeAnnEgroups@... writes: << HELLO,my name is Almeta Willitts and I have pancreatitis.I was surfing the net, looking for answers to my many questions. All my doctors tell me is that I do have pancreatitis. But no treatment is forth coming. The pain and throwing up . have wore me down. What has been done for you? Are you cured? My better half has been great, But could never know what it is like. Nice talking with someone who does. I do not feel alone.My attacks are getting worst and coming faster. Any infro you could give me would be so very helpful. Up untill June of " 99 " . I had a fulltime job. Plus ran my home. Now its all I can do to get out of bed sometimes. Thank you almeta >> Hi Almeta, I am sorry that you too are suffering from cp. We will all be here to help you in any way we can. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2000 Report Share Posted September 16, 2000 In a message dated 9/16/00 11:30:20 AM Eastern Daylight Time, dbcbabmb@... writes: << es. After reading some of your messages, I know that there are many of you that are suffering much more than I and I hope that all of you get better very soon. Charlotte >> Hi Charlotte, welcome to the group. We are happy to have you as part of our family. Ask any questions and we will try to help you with them. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2000 Report Share Posted September 16, 2000 In a message dated 9/16/00 11:30:20 AM Eastern Daylight Time, dbcbabmb@... writes: << es. After reading some of your messages, I know that there are many of you that are suffering much more than I and I hope that all of you get better very soon. Charlotte >> Hi Charlotte, welcome to the group. We are happy to have you as part of our family. Ask any questions and we will try to help you with them. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2000 Report Share Posted September 18, 2000 you know..the percentages always vary with the doctor you see, but...at least 60% of patients with Pancreatitis have Gall Stones...I know it was the first thing they checked with me...Thank goodness they did not make me have mine out to discover only that it was not the answer...How long have you been dealing with the pain? For me, I have had abdominal pain for at least 10 years and only in the last 7-8 months has it been constant and unbearable...even now, after many many procedures and 2 ERCP with stents...it is actually worse...but, with the luck to find a good doctor and a great pain management doctor, i can at least claim part of my life back and not be so depressed over the overall answer the medical community has..which is "we do not know why you have this, we cannot fix it and no, there is nothing you/we can do except control the pain."...just know that you are not by yourself...I only found this group TODAY and just reading others' stories actually made me cry, as i finally saw that i was not alone, and MOST of this group shared the same experiences that I did... wow.. thanks to all of you.. -----Original Message-----From: Oliver on Sent: September 19, 2000 3:44 AMTo: pancreatitisegroupsSubject: Re: New member on 9/16/00 8:29 AM, dbcbabmb at dbcbabmb@... wrote: Hello...I have just discovered your group. I too, have been diagnosed with pancreatitis at age 38. My first attack was May 31st and I was in the hospital for 6 days. Then I had my gall bladder removed on June 22nd. I suffered another attack of pancreatitis on August 14th, but was able to treat it at home, but it took about a week or more for the pain to ease.-------------------------------------------------------------------------------------------------------------Hi Charlotte! Welcome to a great group of pancreatitis patients, and their family/friends! I'm Henry, and I've just been in this group for a short while, but everyone here is so kind, supportive, and friendly,, that I hope you'll feel at home here, as I have come to feel. I've heard of other folks having pancreatic attacks after their gall bladder was removed, but I don't know what the tie in is. Perhaps, it's because the bile duct, and the pancreatic ducts are so close together in the duodenum? Anyway, are you doing well, or at least better now? It's no fun having this type of pain! Well, once again welcome, and if you need support, you've come to the right place! Have a pain-free day/night! Sincerely, Henry PANCREATITIS SUPPORT NETWORKOnline e-mail groupTo reply to this message hit "reply" or send an e-mail to: PancreatitisegroupsTo subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2000 Report Share Posted September 19, 2000 on 9/16/00 8:29 AM, dbcbabmb at dbcbabmb@... wrote: Hello...I have just discovered your group. I too, have been diagnosed with pancreatitis at age 38. My first attack was May 31st and I was in the hospital for 6 days. Then I had my gall bladder removed on June 22nd. I suffered another attack of pancreatitis on August 14th, but was able to treat it at home, but it took about a week or more for the pain to ease. -------------------------------------------------------------------------------------------------------------Hi Charlotte! Welcome to a great group of pancreatitis patients, and their family/friends! I'm Henry, and I've just been in this group for a short while, but everyone here is so kind, supportive, and friendly,, that I hope you'll feel at home here, as I have come to feel. I've heard of other folks having pancreatic attacks after their gall bladder was removed, but I don't know what the tie in is. Perhaps, it's because the bile duct, and the pancreatic ducts are so close together in the duodenum? Anyway, are you doing well, or at least better now? It's no fun having this type of pain! Well, once again welcome, and if you need support, you've come to the right place! Have a pain-free day/night! Sincerely, Henry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2000 Report Share Posted September 19, 2000 In a message dated 09/19/2000 1:00:43 AM Eastern Daylight Time, twilliams@... writes: << I only found this group TODAY and just reading others' stories actually made me cry, as i finally saw that i was not alone, and MOST of this group shared the same experiences that I did... wow.. >> Hi !! I know how you feel!! Before I found groups like these, I thought I was all alone. I had only heard of pancreatitis one other time in my life before my diagnosis. I was amazed to find out how many people there were out there that understood that pain and frustruation that I felt. It is such a relief to be able to talk about my experiences to someone that knows rather than to try to explain it to those who don't. I was first diagnosed and had my first attack in December of 1998. I had pain for like 2 months before they found out what it was. My first attack was treated at home with IV's and once they started, the pain was gone in a week and I was able to go back to work and taking care of my brother who was a severe diabetic and had had his leg amputated do to it's inability to heal from a break. I was literally killing myself trying to do it all, but I was his sole caregiver and would have NEVER let him down if I could help it. Then in July of 1999 I had another attack and this one put me in the hospital where I went into a coma for 8 weeks at which time my lungs and kidneys failed. I was placed on paralytics so I am told because I was fighting them so much. I know I fought because my self conscious was telling me that I didn't have time to be sick coz my brother needed me. Anyway, I am sure everyone is sick of hearing my story, so I apologize for rambling on. Someone had said the other day that they were going to figure out a way to type their story to keep it and send it to each new member but they were new to the puter stuff and didn't know how yet. I am kinda new to all of this myself, but I am going to start figuring out how I can do that!!! To make a long story short, luckily I woke up, but only to find that my brother had died two weeks after I went into the coma and my finace' (EX NOW!!!) had stolen all of my money from my savings account fraudulently!!!! He got me for around 6000.00 and moved out. I was totally unable to take care of myself and luckily my best friend came and lived with me for a while and pretty much saved my life!!!! My pancreatitis was caused by hereditary high triglycerides. They were elevated to 4000 at that time. I am still in a constant battle trying to bring them down again and I am on like 15 meds a day. I have been recently diagnosed diabetic too. YUK Tell me your story too, I am all ears!!! I am so sorry that you have this pain. How old are you? I am 35.......too young to live this way that is for sure!!! Have a pain free day if possible and I will be waiting to hear back from you. Feel free to email me personally too anytime!! Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2000 Report Share Posted September 19, 2000 ...actually, I am trying to work up the energy to tell my story in full...it is just as you said...exhausting to talk about only because everyone wants to know (or they pretend to) but they do not know anything about it..so I end up recanting the past 8 months and then feel as if I made them sorry I ever asked. BUT...I do not feel that way with others that suffer...so, PLEASE do not apologise, as I GET IT!! And..I am so so sorry to hear about you...I certainly cannot relate to your experience, as I never went into a coma, etc..but I can certainly empathize!! I cannot tell you how sorry I am..really, it sounds just awful..was there anyone else (family?) that was there for you while you were down and out? Oh, you asked..I am 33..and I WILL get myself together and write my story within the next 48 hours for the person that wanted to save his story but not send as an attachment...just save the story in your word documents. but, instead of attaching as an attachment when you want to send,...minimize the e-mail, open the document, highlight the entire document (the right click on mouse does this..keep it held down as you go over the entire document from top to bottom)..then, when you have highlited the entire thing, take your hand off the mouse (but do not touch any keys) and go up to " edit " (on IBM it is at the left top of the screen)..left click and options for edit will come up...move to " copy " and click...then, go back into the e-mail you are sending, make sure the cursor is exactly where you want to start, then go up to " edit " again..this time click on " paste " and your entire story will paste onto the email (or wherever)...when you go back to the document, you can just point your mouse anywhere and then click..the highlighting should go away..then just close it...if you DO accidentally hit a wong key and it wipes out or erases, do not worry, as when you close the document it will ask you if you want to save the changes..and then, as they say...just say " no " ...i hope i did not insult you by the step by step, as i was not sure how much computer skills you have..so, if this did insult you..i am very sorry! Re: New member In a message dated 09/19/2000 1:00:43 AM Eastern Daylight Time, twilliams@... writes: << I only found this group TODAY and just reading others' stories actually made me cry, as i finally saw that i was not alone, and MOST of this group shared the same experiences that I did... wow.. >> Hi !! I know how you feel!! Before I found groups like these, I thought I was all alone. I had only heard of pancreatitis one other time in my life before my diagnosis. I was amazed to find out how many people there were out there that understood that pain and frustruation that I felt. It is such a relief to be able to talk about my experiences to someone that knows rather than to try to explain it to those who don't. I was first diagnosed and had my first attack in December of 1998. I had pain for like 2 months before they found out what it was. My first attack was treated at home with IV's and once they started, the pain was gone in a week and I was able to go back to work and taking care of my brother who was a severe diabetic and had had his leg amputated do to it's inability to heal from a break. I was literally killing myself trying to do it all, but I was his sole caregiver and would have NEVER let him down if I could help it. Then in July of 1999 I had another attack and this one put me in the hospital where I went into a coma for 8 weeks at which time my lungs and kidneys failed. I was placed on paralytics so I am told because I was fighting them so much. I know I fought because my self conscious was telling me that I didn't have time to be sick coz my brother needed me. Anyway, I am sure everyone is sick of hearing my story, so I apologize for rambling on. Someone had said the other day that they were going to figure out a way to type their story to keep it and send it to each new member but they were new to the puter stuff and didn't know how yet. I am kinda new to all of this myself, but I am going to start figuring out how I can do that!!! To make a long story short, luckily I woke up, but only to find that my brother had died two weeks after I went into the coma and my finace' (EX NOW!!!) had stolen all of my money from my savings account fraudulently!!!! He got me for around 6000.00 and moved out. I was totally unable to take care of myself and luckily my best friend came and lived with me for a while and pretty much saved my life!!!! My pancreatitis was caused by hereditary high triglycerides. They were elevated to 4000 at that time. I am still in a constant battle trying to bring them down again and I am on like 15 meds a day. I have been recently diagnosed diabetic too. YUK Tell me your story too, I am all ears!!! I am so sorry that you have this pain. How old are you? I am 35.......too young to live this way that is for sure!!! Have a pain free day if possible and I will be waiting to hear back from you. Feel free to email me personally too anytime!! Hugs, PANCREATITIS SUPPORT NETWORK Online e-mail group To reply to this message hit " reply " or send an e-mail to: Pancreatitisegroups To subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2000 Report Share Posted September 30, 2000 My name is Carole and I just joined this group. It's so nice to have people to talk to who can relate to Pancreatitis. My problem with my Pancreas started 14 years ago with Acute Pancreatitis and I developed a cyst on the tail end of my Pancreas. Had surgery but 4 months ago I found out I have another cyst on my Pancreas. The first CT showed a 4 CM cyst and the last one showed it had grown to 4.7 CM. They also found a lesion on my liver. Has anyone in this group ever had this problem? If so, what was done? I'm on Darvocet for the pain right now. Whenever I had Acute Pancreatitis, my amylase was extremely high but my doctor told me it's not always high with Chronic Pancreatitis which really confuses me. I don't drink so alcohol is not the reason for my condition. I've had " attacks " periodically for years but now the pain is getting worse. I would appreciate anyone's input. Thanks and God Bless. Hope you all are doing well! Carole Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2000 Report Share Posted September 30, 2000 In a message dated 9/30/00 4:34:36 PM Eastern Daylight Time, CJWatts88@... writes: << My name is Carole and I just joined this group. It's so nice to have people to talk to who can relate to Pancreatitis. My problem with my Pancreas started 14 years ago with Acute Pancreatitis and I developed a cyst on the tail end of my Pancreas. Had surgery but 4 months ago I found out I have another cyst on my Pancreas. The first CT showed a 4 CM cyst and the last one showed it had grown to 4.7 CM. They also found a lesion on my liver. Has anyone in this group ever had this problem? If so, what was done? I'm on Darvocet for the pain right now. Whenever I had Acute Pancreatitis, my amylase was extremely high but my doctor told me it's not always high with Chronic Pancreatitis which really confuses me. I don't drink so alcohol is not the reason for my condition. I've had " attacks " periodically for years but now the pain is getting worse. I would appreciate anyone's input. Thanks and God Bless. Hope you all are doing well! Carole >> Hi Carole, and welcome to the group. I am sorry that you are having pancreatitis and had to join us. I do not have cyst on my pancreas but there are others in the group who have had cyst. They will be able to help you with this more than I can. I am impressed with your doctor since he said that amalaze doesn't always have to be high with a pancreatitis attack. Many doctors think that the amalaze and lipase are not up then the patient is not having an attack. So many people with pancreatitis do not know the reason they have it. That is what is so frustrating about this disease among other things. Carole, it is great that you don't drink alcohol. I don't drink alcohol either, or eat dairy, spices, or fats, in fact I don't eat anything most of the time. When I do eat it is maybe a bite. I am on tpn and I am planning on having a surgery to remove my pancreas and have my islet cells removed from my pancreas and injected into my liver. If all goes well I should be able to eat and not be a diabetic. I have pancreas divisum which means that I was born with an abnormality in the duct of the pancreas. Stay with us and we will help you all we can. There are quite a few nurses in this group and they will be able to help you. Where do you live? We are going to have a pancreatitis symposium in Nov. in Indianapolis. It should be very educating. Take care, Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 Hi glenn, my name is Ron and I know what you mean when you say the pain was unbelievable. I was out fishing one Saturday night with my buddies in 1996 and I had some pain in my side I didn't know what it was so I told my self if it wasn't better by Monday I would go to the doctor. I woke up Sunday morning with the worst pain I had ever felt. I was in the fetal position until the paramedics arrived and took me to the hospital where I spent about a week. I was flown by life flight to the Ohio State University hospital where I was diagnosed with severe acute pancreatitis the did several surgeries, the first one they did they had to stop because I wasn't stable enough for them to continue. I had 3/4 of my pancreas removed. I was on a vent for 12 weeks, I also had an infection in my blood, I had 12 week's of dialysis because my kidney's shut down, I spent about 5 months in the hospital with several drains and then I developed an infection around my spleen so I had to go back and have that removed plus all of the reconstructive surgery they had to do. My advise would be to go some where that is familiar with this problem I prefer OSU they were great. good luck! Quote Link to comment Share on other sites More sharing options...
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