Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 Hi Mehmet, I'm so sorry you have this worry. Your wife's condition seems to have developed a bit like my own in that she used to have occasional bouts of abdominal pain and then later on, diarrhoea and more constant pain developed. I'm sure she will find the Creon really helpful, especially if she takes a high dose. She needs to discuss this with the consultant. The thinking today seems to be in favour of higher doses than were previously thought adequate. My pancreatologist recommends up to 4 or 5 Creon 40,000 with a full meal and some of his patients are advised to take even more if they need it. Obviously, this is something to dicuss with the medics before you make any changes, but the dosage has to be sufficient to help in the digestive process by replacing the pancreas' own exocrine function.. I am not yet diabetic so I won't comment on that particular problem. I do have extensive calcifications although no one single large obstruction has been mentioned. What I can say is that medical opinion can certainly vary. At first I was advised to have the TP by the pancreatologist/surgeon whereas my gastroenterologist advised me against the surgery. Later, the pancreatologist himself modified his view in the light of a number of factors, especially the fact that I responded well to a low fat diet plus Creon. My pain level, and other symptoms diminished somewhat with treatment. I am really sorry you are confused as to the best option. Maybe you need yet another opinion? Are both the doctors you saw surgeons? A physician may give a different opinion sometimes from a surgeon's. Is either of them experienced in this type of surgery? What reasons does each one give for his/her opinions? It would not be right for me to try to answer your question (even if I had more knowledge than I do!) but one possible thing to think about is how much your wife's quality of life is affected at the moment. Some docs believe that it is better to leave things alone if a relatively normal life can be still led by the patient, with reasonable management by diet and medication. This was my gastro's view. (Of course, I don't know what the possible effects of the very large stone may be in terms of causing recurring attacks which could be more serious than earlier ones. I'm certainly not advising one way or another, just giving some thoughts and questions for your doctors.) Has either of them suggested other treatment for the large stone? (I apologise if I've missed some of your posts.) Perhaps if you wait for a little while, the right answer might become clearer. Just one other thought occurs to me. My gastro, when trying to dissuade me from having the TP too quickly, did point out that I was not yet diabetic. The implication was that if I had been already diabetic then his advice just might have been different; I would have had less to lose. (The TP would have made me diabetic at once. In the UK, the TP with ICT is very rarely done. In any case, my pancreas is probably too diseased to provide enough islet cells for a successful transplant.) If I had been already diabetic, then I might have been more inclined to accept the TP. On the other hand, some people seem to think that a TP could make existing diabetes worse, although this was not the view of my particular doctors. This, again, is something to discuss with your doctors. I'm sorry not to be more helpful. I can just identify with the dilemma, having been through a similar one two years ago. I do wish you and your wife the very best of luck, whatever decision you come to. Fliss (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 Dear Mehet, I have had CP since I was a child, although I didn't get diagnosed until 11 years ago. Ever since I was about 8 years old, I would get " strange viruses " that left me in pain, vomiting, and diarrhea. I wouldn't eat or drink for a week or so. I had been to the hospital several times [when I was a child and a teenager] for fluids, because of dehydration; the doctors would write me off as having gastritis. No doctor ever checked my levels, nor did they ever suggest further testing. Ten years ago, I had an ERCP the doctors found stones in my duct and therefore labeled me as having Pancreatic Stone Disease, stage V. My doctors concluded that I see Dr. Cotton, have a Puestow, or possibly a Whipple. But at the time of this diagnosis, I wasn't sick. I wasn't struggling with bouts of pain, although I was (and always have been) nauseous. I put the test and the doctor's recommendations behind me and continued to live my life, and continued to have " strange viruses " , well into adulthood. In December I became incredibly ill and started having to go to the ER for pain meds, IV fluids, etc. At this time, one ER doctor blamed it on food poisoning (even though I mentioned several times that I have CP and the levels won't necessarily be raised if I am having an attack). I started going to the ER on a weekly basis which quickly turned into being admitted. Thankfully, my GI doctor focused on making me comfortable with pain meds, IV fluids, etc. We thought that I would be out of work and recovered within a month's time [when the doctor told me I could be sick for a month, I laughed, as I have never been sick for that long!]. Things just kept getting worse. The next few months I suffered many setbacks on the account of some local doctors and bad decisions (NOT anything related to Dr. Cotton). I didn't have any documented problems with the stones until 9 months ago. I was sent to see Dr. Cotton at MUSC [Medical Univ. of South Carolina]. Dr. Cotton is a world renowned Pancreatologist with an emphasis on ERCP therapy. The MRI, MRCP, and CT scans all showed that several stones had clumped together to form one big obstruction. My digestive fluids are thick (most people's are like water) but my are " sludgy " and overtime, the sludge starts to stay in the duct. The stones also prevent the digestive fluids from their normal flow, thus causing pressure in the inside of the duct. . Somehow, the problems with my stones triggered the head of the pancreas to become very inflamed and mad, thus making me have pancreatic attacks. Three times, I went to see Dr.Cotton. I was incredibly ill even before going to see him the first time. I couldn't eat or drink for about 3 months (I couldn't even drink water!). I was still on narcotics and nausea meds every 4 hours. I had been in the hospital for weeks at a time. I had a J-tube (feeding tube) which was literally a lifesaver. Up to this point, I lost a lot of weigh and I needed to get some calories in so I could heal. The first trip to MUSC I had 2 sphinctorotimes [excuse my spelling errors] and stent placement. I came back to Atlanta and felt considerably better for about 2 weeks. My local GI doctor was so happy that I felt good, that he pulled the J tube out. Big mistake, I got sick again and was in the hospital for weeks. If I was at home, I was on a still on a strict regiment of narcotics and nausea meds every 4 hours, because I was so sick. The second time I went back to MUSC I had another stent placement and ESWL. The ESWL broke up the stones and all I had to do was pass the remnants, which was very painful. I was in and out of the hospital again. The third time I went to MUSC, the doctor put in large (size 7 stents) semi-permanent stents which needed to be pulled in 3 months. I became incredibly ill again. I basically spent all of May and June in the hospital. I would come home for a night and wind up back on the floor the next night. I was having a lot of pain (and also suffered through a nasty, miserable PICC line infection). We talked to many doctors in the hospital and finally someone mentioned that if the stents are off even a few millimeters, they could cause irritation in the pancreas. As soon as they were out, I felt good for about two weeks. When I began having pain and needed to be hospitalized (again), we called Dr. Cotton, who said anything he could do would be temporary and the next step is surgery. He was very disappointed that he wasn't able to help me. After going back and forth to MUSC and not having any luck with the procedures, I finally was referred to my hospital's pain clinic. Once you become a patient the clinic goes through your medical records, doctor's documentation, etc. Their main goal is to get you on a routine of medicine that makes you able to tolerate the pain. They don't want you completely zonked out, they want to give you meds, so you can work and live and not be in excruciating pain. I would say that 70% of pain-free minutes of the day is their goal, because I was told that if the Methadone was keeping me at 70%, than it is doing it's job. I am not saying that I am always comfortable on the Methadone and Cymbalta, I am not, I do have bouts that are horrendous; therefore I take Dilaudid for breakthrough pain (I do this sparingly, because of the addiction and physical dependency). They were not so quick to jump to giving me anything for BT pain. I had a bad attack before my third appointment with the pain clinic. Finally my ER doc called the clinic and said they didn't want me to come to the ER for pain control. The ER doctor told them to give me the meds for home. Finally, they did give me the Dilaudid, but I had to prove that the regiment was holding me at all times. I take 40 mg. of methadone 3 x/day (long acting), 60 mgs. of Cymbalta once a day, Phenegran 3 times a day and Dilaudid for breakthrough pain. I just have to evaluate one day at a time, one attack at a time. Now I am at a rock and a hard place as there is nothing that the doctors can do to help me. I had a surgical consult, to which the surgeon said that I needed a Whipple. I've had 3 months to research, deny, and think about what is the best decision for me. I began getting sick again and the attacks are very intense, with no warning. I am just living from moment to moment; I seriously can be fine one minute and the next I am in attack mode. It is very unsettling and very unnerving. I've realized that I don't like being on medicine all the time, as I am not thrilled with the side affects. I want to get on with my life, be able to have a job and friends, and have quality time with my wonderful family. Ø She was diagnosed CP with calcifications in the tail area three years ago. Did your wife ever have blunt trauma in the abdominal area, b/c I've read somewhere that damage to the tail is rare and is mostly brought on by trauma to the pancreas. (I could be wrong, so please don't quote me. > > She has been using insulin for three years now. She started after CP diagnosis. She had never suffered form diabet related issues before. Only thing I remember was her blood sugar level was seen higher than normal during her pregnancy controls. Now she takes insulin before each meal and before sleep. Sometimes she has hypoglicemia. > > She has been having constant pain for ten months now. She has also diarrhea. She is back on Creon now. What I understand is, two stones united to form a giant one and obstructed the Pancreatic duct. > > > If I come back to surgery; doctors do not talk to us much in detail. One University Hospital doctor said TP is necassary. They said that her pancreas has already lost its endocrine and exocrine functions because of calcifications. We were afraid and went to another doctor. He said; in our case TP or Whipple is not necassary and indeed would be a mistake.I think he is thinking of performing a drainage surgery (Puestow). > Ø We do not know which one to believe. Both of them is believed to be the best ones in their areas in Turkey. We want to be optimistic and believe to the second one where organ loss is not recomended. But will the stones occur again after the procedure. If yes when? This we have to investgate and hear from the ones that already have Puestow. Unfortunately, the stones can come back and it is impossible to tell how long your wife could go without forming stones. I know because we've asked these questions and the top doctors (with specialty of pancreas) can not give a time frame, they just don't know. All they can do is try the different ERCP and stent placements to buy some time instead of rushing to do surgery. I am having a Whipple, because the damage and calcifications are in the head of my pancreas. I also wasn't ready to jump into a TP, but I know that if I (G-D forbid) ever have problems like this arise years from now, I will be able to have a TP. I can't relate to your wife's problems with diabetes and BS problems, but when I read your story my heart sank. I would never wish this disease and these problems on my worse enemy. Best of luck, Quote Link to comment Share on other sites More sharing options...
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