MikeO Posted February 13 Author Report Share Posted February 13 @MaineDougwhat colon prep is your doc having you take? i was told to buy a store brand that starts with a M and ends with a X Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 13 Report Share Posted February 13 @MikeO, My GI has me starting with an MR CRP. No scope, hopefully none needed anytime soon, but the MR will determine that. MR is scheduled for 3/7/24. Are you NPO before the procedure? Water too? How long is the prep? Is the plan for conscious sedation or full anesthesia? My prep is IV saline X 6 hours, then MR. They initially wanted NPO 4 hours, but I refused, researched and forwarded POTS surgical hydration protocols to GI, and they rolled with it. I’m not doing NPO prep for anything without an IV running. Not after the 4 hour fiasco to find a vein last spring. It’s a shame that a POTS patient has to warn them re: dehydration. We should be so past that. But, I can dream! Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 14 Author Report Share Posted February 14 16 hours ago, MaineDoug said: Are you NPO before the procedure? Water too? How long is the prep? Is the plan for conscious sedation or full anesthesia? Yes i will be NPO before the procedure and only a sip of water to take meds the day of. prep is taken in two doses 12pm and 6pm and a bathroom is required. procedure is full anesthesia but may change once i talk to the anesthesiologist. Day before i will be on a liquid diet so stuff like broth coffee tea jello or popsicles are allowed. what i do for a NPO procedure is to drink a ton of water the day before. helps more than one would think. last procedure i had i only sucked down a half of a IV bag. normally i will drink down the whole bag. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 14 Report Share Posted February 14 @MaineDoug @MikeO Last month I had a colonoscopy and EGD the next day. NPO for both procedures. Since I have a port I could run fluids while doing the prep the day before the colonoscopy. I had problems with preps and npo before but they know this now. They ran fluids before each procedure. I did super well, no problems this time. Mike, I did a lot of broth and jello for the clear liquid diet part. But the jug of stuff you need to take will fill you up! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 14 Report Share Posted February 14 @Pistol @MikeO, LOL, I don’t think I could drink anymore fluids! I’m on 2 gallons/day regular! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 19 Report Share Posted February 19 @MikeO, How is your Pancreatitis pain level? Sharp, dull, both? How about interference with sleep? Are you on Creon or another PERT? Before Creon I experienced sharp, knife like pain in the abdomen, the worst was under the bottom edge of my rib cage. Pain was 8+ with strong meds. After Creon the sharp pain stopped and now I experience a dull pain in the same areas. Pain with meds is now a 4. My sleep is affected by this pain and it’s worse when I’m sleeping on my side, feels like the organs get squeezed? The Creon helps but the cost is high, my copay is $500/ month, although gratefully I’ll max out in March for the year. And next year’s Part D cap goes down to $2,000/year! 🤗 Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 20 Author Report Share Posted February 20 @MaineDougpain can be bad during a episode (attack) thankfully they don't happen very often. no i am not taking Creon or some other PERT. i do watch my diet so less meat and fat for now. Glad to hear that Creon is working for you. sucks when sleep gets disrupted. before i was put on Ranolazine i had issues sleeping on my left side but, now that has cleared up. Cost of meds sometimes hard to swallow. this last year med costs for me were about $10,000. Glad insurance picked up the cost. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 20 Report Share Posted February 20 @MikeO, Thanks. How often do you have attacks? Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 20 Author Report Share Posted February 20 39 minutes ago, MaineDoug said: @MikeO, Thanks. How often do you have attacks? every few months or more i would say. they tend to happen in succession a few days in a row then i am good for a while. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 21 Report Share Posted February 21 @MikeO, Thanks. I think my condition is stabilizing and starting to resemble the pattern you describe. My wife made me a homemade pizza Sunday with a little cheese. That led to a major flare with terrible bowel issues and it spiked my BP and HR. Took 3 days to recover. Won’t do that again! Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 21 Author Report Share Posted February 21 1 hour ago, MaineDoug said: homemade pizza Sunday with a little cheese. That led to a major flare with terrible bowel issues and it spiked my BP and HR. Took 3 days to recover. Haha yeah some foods hit out of the blue. I ate a couple of diabetic friendly brownie fiber bars total mistake. plugged me up for a week. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted February 22 Report Share Posted February 22 22 hours ago, MikeO said: some foods hit out of the blue Indeed! And the hits just keep coming! 🎼 Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 24 Author Report Share Posted February 24 On 2/22/2024 at 11:13 AM, MaineDoug said: Indeed! And the hits just keep coming! 🎼 oh....you know it Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 26 Author Report Share Posted February 26 On 2/14/2024 at 6:59 AM, Pistol said: But the jug of stuff you need to take will fill you up! Haha....it did but only for an hour...holy smokes! Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 28 Author Report Share Posted February 28 On 2/13/2024 at 1:51 PM, MaineDoug said: My GI has me starting with an MR CRP. No scope Hope your test goes well. I am glad i had the ESOPHAGOGASTRODUODENOSCOPY WITH BIOPSY and COLONOSCOPY it did find notable issues. @Pistoli think you called Diverticulosis at one point. Procedure results: Z line deviation 2 cm 2 cm hiatal hernia Non erosive esophagitis Gastritis Diverticulosis Ascending colon polyp Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 28 Author Report Share Posted February 28 well update doc came back with a diagnosis of Barrett's esophagus. sure there is more to come. Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 29 Report Share Posted February 29 @MikeO As a result of HPOTS I ended up with Barrett's and duodenitis years ago. It was successfully treated with Carafate, Protonix and - most helpful - a medicine compounded by pharmacy called GI cocktail It contains mylanta, Viscous lidocaine and Phenobarbital. This mix healed my GI tract up in just a few weeks and the GERD has been controlled with just Pantoprazole and diet changes. Quote Link to comment Share on other sites More sharing options...
MikeO Posted February 29 Author Report Share Posted February 29 37 minutes ago, Pistol said: Pantoprazole The Doc is starting me on Pantoprazole sure hope it helps. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 8 Report Share Posted March 8 Great news from my MR CRP! Mild diffuse fatty changes in Pancreas and Liver! Small benign cysts. No blockage, sludge, stones or malignancy! About as good as I could have hoped for!🎉 Plan is to monitor yearly for a decade then d/c monitoring if no changes! I was prepared for the worst but hoping for the best! Celebrating in Maine! 😁 Best wishes to everyone! Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 9 Author Report Share Posted March 9 19 hours ago, MaineDoug said: Great news from my MR CRP! Mild diffuse fatty changes in Pancreas and Liver! Small benign cysts. No blockage, sludge, stones or malignancy! About as good as I could have hoped for!🎉 Plan is to monitor yearly for a decade then d/c monitoring if no changes! I was prepared for the worst but hoping for the best! Celebrating in Maine! 😁 Best wishes to everyone! Glad to hear the test showed good news! Now get that hip fixed so you can exercise off some of the fatty organ buildup. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 9 Report Share Posted March 9 4 hours ago, MikeO said: exercise off some of the fatty organ buildup. @MikeO, Way ahead of you Mike! Since my initial Pancreatitis diagnosis 4 months ago, I’ve lost 36 pounds, from a Prednisone/bed ridden weight of 235 pounds down to 199! I’m no longer officially obese! I plan to lose another 36 pounds. I’ve switched my already healthy diet to remove any remaining inflammatory foods and continue the CHOP exercise program. And I am committed to meditation and breathing techniques to lower inflammation. I spend 3-4 hours per day on these. I believe that if I hadn’t been doing these things my MR CRP wouldn’t have worked out so well! When I met with my GI doc in January he STARTED the discussion with “What’s more important to you Doug, Quality of life or quantity?” Me: “say what? Well….quality, but I need to support my wife at least until 65”, GI: “That may be a reach, we’ll see”. THAT IS NOT HOW TO START A DISCUSSION WITH A PATIENT REGARDING A NEW DIAGNOSIS! I didn’t even tell my wife this, figured I’d wait until the MR CRP then deal with the reality. But that was a heavy load to carry around for 2 months waiting on the test!!! And the “reason for test”, wasn’t exactly reassuring either: “Please focus on identifying malignant processes and tumors”!!! I figured that my goose was cooked. Now I feel like I have a second chance at life! And I plan to make every moment count! I feel like Scrooge on Christmas morning. I CAN’T WAIT TO GET WALKING AGAIN! THE HIGHLIGHT OF MY DAY WAS ALWAYS THE 4 MILE EVENING WALK WITH MY BELOVED SAMOYEDS. They miss it and I miss it! Hoping for one month to restart. Sorry to hear about your Barrette’s. I hope the meds do the trick. I’ve been on Pantoprozole for several years and I like it, no side effects. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 9 Report Share Posted March 9 @MikeO, Are you familiar with mission cure? They are a group of researchers, docs, donors, and patients committed to curing common, serious conditions without treatments or cures currently. They plan to identify and target such conditions one at a time, with a goal of rapid identification and development of cure/treatment in 10 years. They are 6 years into their Chronic Panc effort and their CEO promised at their annual conference that they are on track to have effective treatments within 4 years. Great folks! Link at: https://mission-cure.org/chronic-pancreatitis/ Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 10 Author Report Share Posted March 10 17 hours ago, MaineDoug said: Now I feel like I have a second chance at life! And I plan to make every moment count! I feel like Scrooge on Christmas morning. Be selfish it's your life that matters. 17 hours ago, MaineDoug said: I’ve been on Pantoprozole for several years and I like it, no side effects. Med has been good so far no side effects. GI did find some bleeding down by the esophagus and stomach junction. Makes sense to me now where where some of my issues are coming from. Sure this might be why my A1c's are lower than expected base on other numbers. guess we will find out with next month A1c test. Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 10 Author Report Share Posted March 10 17 hours ago, MaineDoug said: Great folks! Link at: https://mission-cure.org/chronic-pancreatitis/ Thanks for sharing this Doug very good material. The site did mention that chronic pancreatitis can cause Type 3C diabetes which is what i think i have and my Endo eluded to. I am going to work with my PCP to help answer the question for sure. Have you been tested for diabetes? just curious. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 11 Report Share Posted March 11 13 hours ago, MikeO said: Have you been tested for diabetes? just curious. Yes! I’ve had high blood glucose for 8 years, it was attributed to Prednisone and the related weight gain. That said my A1C has been reasonable, varying from 6.2 to 6.4 over the past few years. I’m currently on Metformin, 1,000 mg in AM, and 500 mg in PM. I’m hoping that the weight loss and exercise will help lower it. Quote Link to comment Share on other sites More sharing options...
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