pure pain

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Just been diagnosed am I elagable for disability what to do pure  pain all the time .

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  • Posted

    I don’t know where you live but getting approved for disability in the US is quite difficult. You must speak with your doctor and go through numerous tests in order to qualify. There’s a list of digestive disorders on the social security website. I know that’s not very helpful but it gives a better understanding of the process. 
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    • Posted

      Hi Shortie79.  Remember me?  We spent many days talking back and forth, then I lost track of you.  How are you doing?  I'm finally due to have an endoscopy ultrasound in a couple of weeks.  My Gi finally agreed.

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    • Posted

      Hi Lindy,

      I’m hanging in there. I’ve had two ERCPs and go for another one on Tuesday. My pancreas specialist diagnosed me with chronic pancreatitis due from Pancreas Divisum. He told me I have been suffering from pancreatitis this past year and opening my two ducts should help with the symptoms. So far it hasn’t helped much but I’m hoping the 3rd time is a charm. I’m glad you’re finally getting an EUS. Keep me updated on the results please and take care. 

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    • Posted

      Howdy Shortie,

      I can't believe that you're going through this for the third time!  I'll pray that the opening of your two ducts will help with the symptoms and that all will go well.  Have you been on any forums where Dr. Perry is? Take care.

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    • Posted

      Hi Lindy,

      My first ERCP wasn’t bad at all. They kept me in the hospital for observation for a week but pain wise not bad at all. The second one was very painful because they cut my duct. This time they’re putting a balloon in to dialate it to open them up more. Since there’s no cutting I’m hoping the pain won’t be like the second time. I had a slight pancreatitis attack with the first one but not with the second one. My specialist is an hour away from my home therefore I have only seen him for these procedures and the first consultation. He’s the only doctor I can go to but he’s absolutely wonderful! It took me a year just for me to get the MRCP diagnosis for Pancreas Divisum then that GI specialist said my symptoms were IBS and I told myself there’s no way IBS could cause such unintentional weight loss. When I saw my pancreas specialist I was officially diagnosed with chronic pancreatitis which I felt I had from the beginning. He explained that there’s options for me so I have hope! I have other medical issues and live in pain but pancreas pain I’m scared of. When my pancreas acts up, I can’t control that pain but things are looking up. As for your question, no I haven’t been on any forums with the other doctor you named. Take care sweetie. 

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    • Posted

      Hi Shortie79,

      I''l just bet the cutting was painful.  Ouch!  Do you go to a GI when you don't see your specialist?..You told me way earlier that you thought you had Chronic Pancreatitis; we know our bodies so much better than these doctors. They don't know how we FEEL, just what their education has taught them and what others have experienced.  What options did he tell you about?  I'm glad you have hope;  without that we're sunk! Talk to you soon.

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    • Posted

      Hi Lindy,

      I used to go to a GI specialist but she really didn’t do anything for me and she’s the one who thought my symptoms were only IBS. If I have any questions, I can email her. As for options, my case is a little different because I have two ducts. I have already received and removed a stent. The stents are temporary and short term because they can lead to infection and scarring. Furthermore if the pancreas gets bad enough my pancreas specialist can actually put a sinthetic pancreas in. I don’t know what that entails because I don’t want to get diabetes (automatic when they remove the pancreas). I already have atrophy of my pancreas but I don’t know how bad it is yet because it’s been procedure after procedure after procedure. Once the procedures are done then I will be able to sit down with my pancreas doctor and find out how bad my pancreas really is. I’m also still waiting for my blood test to see if I have the mutation markers. If so then my pancreas doctor likes to remove the pancreas and make another organ act as the pancreas. I’ve also read studies on how some doctors have actually implanted an additional pancreas and kidneys into a person … that person had two pancreas’s and four kidneys in their body which I thought was really nifty. They didn’t remove the old ones because it was going to cause more damage. Technology nowadays gives us more hope. I’m fortunate to have a doctor whose been doing this for over 40 years. I’ve met patients who traveled over 6 hours for his work. Here in California we only have a few doctors that can perform an ERCP and I’m fortunate enough to be an hour away from one of them. After waiting over a year for a diagnosis, I’m just grateful I’m finally getting to the route of the problem. Unfortunately, I have malabsorption, and loosing my hair now but I’m still hopeful. The biggest thing I learned was don’t stress because it will cause an attack. My blood work won’t show an attack except maybe sometimes my liver enzymes rise but because of my narrow ducts it stops my blood from showing lipses, etc. I stopped going to the ER because they started treating me like an addict. Some doctors have no idea of how much pain the pancreas can produce. I have a nerve disease called complex regional pain syndrome but pancreas pain is 100 times worse. However after two ERCPs I think my symptoms have improved some. I’m not nauseous 24/7 and my skin doesn’t itch all the time either.  I’m just trying to take one day at a time. How have you been feeling lately? 

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    • Posted

      Hello Shortie79,

      Boy, technology surely has brought us a long way for sure.  Wow!  The waiting for those mutation markers must be extremely anxiety-producing.  I've thought about getting mine, because of my sister, but I don't know that I really want to know.  I hope you don't have to go as radical as to get your pancreas removed.  What does Pancreas Divisum mean?  Is that having the 2 bile ducts?  I sent my dr a message and asked him how many of the EUSs he has done.  The answer came back -over 100 a year.  Guess that qualifies him!  I don't know if he does the MRCP or the ERCP.  I'll ask him the next time I see him.  I'm glad your nausea has tamed down some. I usually wake up feeling fine on most days.  About 2 or 3 in the afternoon, my stomach starts hurting and it just progresses till I finally go to sleep again.  Same cycle the next day and so on. Still can't eat any solids.  I tried last week-I ate a biscuit, and it took 5 days to get it out of my system.  Soooo, it's Ensure milkshakes and protein powder for me.  It's almost like my GI tract has quit functioning. Guess we all have our daily struggles, and you are so right about living one day at a time.  Looks like tomorrow is here for your third test.  My prayers will definitely be with you.  What time is the procedure? Please let me know the results when you feel well enough to post.  Take care.

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    • Posted

      I forgot to mention that I did do the C19-9 marker, and it was out of range- a little high.  My dr didnt say anything about doing that test.  He just gave me a lab slip, so I didn't know till the lab tech told me.  Quite a shocker!

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    • Posted

      Hi Lindy,

      Pancreas Divisum is where you’re born with two pancreatic ducts that don’t fuse together. It’s a rare condition and my pancreas specialist told me it only happens to 5% of the population. It caused me to have chronic pancreatitis but I have no idea how long I’ve had the condition. As for the mutation markers test, I lost my dad back in March. He had cancer but he had gotten pneumonia (side effect from his chemo pills) which he had gotten many times before. We all thought (including him) it was just another case of pneumonia but he got Sepsis and passed away. It was very sudden and he was only 65. I have two teenage sons. I will do everything to be here for them. My eldest son is already worried about me. I try and assure him I’ll be fine. I try and shield my kids from my pain as much as possible. I wake up from the pain. If it’s not my pancreas then it’s my nerve disease. All we can do is take one day at a time. I’ll keep you updated after the procedure. 

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    • Posted

      The only way to detect Pancreas Divisum (PD) is through a MRCP. They use an ERCP to confirm diagnosis but also to treat PD as well as diagnose chronic pancreatitis (they do a biopsy). They can also use an EUS to diagnose chronic pancreatitis too but because I showed atrophy on my CT Enterography they had me go for a MRCP. An ERCP is the last thing they will suggest because it can cause a pancreatitis attack and it’s invasive. Each time I spent a week in the hospital for observation. 
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    • Posted

      Ok.  Thanks for explaining it.  I don't know where I would have to go to get a MRCP should I need one.

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    • Posted

      Your doctor would order it. All a MRCP is, is a special MRI. When I had mine they strapped me down because I have uncontrollable spasms then they inject contrast into your abdominal area and tell you to hold your breath for intermittent periods of time. It takes about 45 minutes and then you’re done. Anywhere that does MRIs should do MRCPs. It’s the ERCPs that would be harder for you to get (at least for me). My GI specialist advised me there’s only a couple doctors that know how to perform them in California. They’re delicate procedures because the risk of pancreatitis attacks. A MRCP is a good test to view the pancreas and all of the surrounding areas. It’s becoming more popular because it’s noninvasive. You’re more likely to get a GI specialist to order a MRCP then a regular doctor. 
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    • Posted

      Shortie79, I couldn't find the other thread we were on.  How did your procedure go?  Did you get AP from it?  Are you home yet?   Did you get some answers?  Please let me know how you are.

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    • Posted

      Hi Lindy,

      I’m home from my latest ERCP. The doctor put a balloon in to dilate my duct and stated he saw good drainage. I have to go back in December for an additional ERCP. The long term goal is to widen my ducts to prevent future pancreatitis attacks and adequate drainage from both ducts. Since the Pancreas Divisum caused me to have chronic pancreatitis, depending on how successful these ERCPs go, the goal is to have them every eight months for like a tuneup, but if they’re not successful in treating my symptoms and my pancreas becomes more damaged, then a transplant would be the next step. However, the doctor said I’m far from needing a transplant. I didn’t have an acute attack afterwards. I only had the one acute attack at my first ERCP. I also received my blood test results  which came back negative for cancer mutation markers, so I’m in the clear for now. I still feel very fatigued/lethargic and have bloating but honestly it was the easiest ERCP so far (I spent the least amount of time in the hospital). My only complaint is I don’t like being on an IV for four days because it causes me to swell and I have a nerve disease that also makes me swell which has flared up. However I was told the pancreas loves hydration LOL. I hope all is well with you. 

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    • Posted

      Hi Shortie,

      I've just finished watching the parade for the world champions, my Houston Astros!  Did you watch any of the series?  Pretty exciting!  I'm glad you got a good report, having good drainage.  I pray these ERCPs are successful, and you don't have to have a transplant.  That's great that you didn't have an acute attack.  That's wonderful news that your blood work came back negative. I think I told you that my c19-9 came back a little high the first time; the next draw it came back normal.  Sounds like the procedure was a breeze for you this time.

      I had my EUS on Wed., and everything came back normal.  Dr. said he thinks that I have medication-induced Gastroparesis and is not going to do any more tests.  I have that appt. in Jan. with the head of gastroenterology at Houston Methodist for a second opinion.  I found whom I wanted to go to and my GI wrote the referral, as he is encouraging tme to get a second opinion.  I would still like to have the MRCP.  Do you think that would be a good idea, even though everything came back normal or skip it?  I welcome any feedback.

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    • Posted

      Hi Lindy,

      I didn’t watch any of the World Series but my sister lives in Houston and her hubby is a huge Astros fan LOL. As for your question, honestly because of everything I went through and the only test that came back with actual results was a MRCP, I would feel better getting the test. My CT Enterography only showed atrophy but never showed my Pancreas Divisum. It was only the MRCP that showed the Pancreas Divisum. I only had a regular ultrasound and didn’t have an EUS therefore I really don’t know what the difference is. I did have a GI doctor tell me my symptoms could be from gastroparesis but in order to do that test I would have to stop my pain medication (which I was taking for my CRPS) and it’s not something I can just stop for a couple days for a test. The GI doctor didn’t want to put me through more pain so she put me on Reglan to see if that improved my symptoms. The Reglan did help with some of the symptoms (bloating after eating and going to the bathroom) but none of my other symptoms. The GI specialist told me my pain medication could also cause gastroparesis too (over a long period of time). I’m still taking the Reglan but also taking Creon which seem to help too. I’m able to eat solid foods now with the Creon. If you’re not able to eat solid foods ask for an EPI test. That’s when they test your fecal matter for absorption of fats. It’ll let the doctors know whether or not you need digestive enzymes. I definitely would get a second opinion. My first GI doctor thought all my problems were IBS and they weren’t, I had chronic pancreatitis the entire time. I understand that chronic pancreatitis is hard to diagnose but with my experience, I feel that if the GI doctor listened to me better the. It wouldn’t have taken over a year to get a diagnosis. I know my body and I knew something was wrong. The pain was so severe … I’m actually scared of that pain. I’m not scared of any pain unless it’s leaking spinal fluid (horrible pain if you’ve never experienced it) but if I had to compare spinal fluid to pancreas pain oh and kidney stones I would say pancreas pain takes the lead. Pancreas pain has been the worse pain I’ve ever experienced. I hope you find the answers you need but I hope you feel better soon sweetie! 

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    • Posted

      Hey Shortie79, It does sound like medication-induced GP.  You don't really need the test cuz you already know that your stomach empties slowly, just not the rate.  You are already on Reglen, which is the main drug for GP.  I agree with you about  the pancreatitis pain being the worst ever.  The only relief I got was in the ER when they gave me several doses of morphine.  I was sick today, throwing up, with only an Ensure on my stomach.  Sucking on peppermints now--seems to be helping.  The Phenegren did absolutely nothing. My dr. told me just after the EUS "he has done a million dollars worth of tests on me, and they all came back normal and that he was not doing any more tests! " Maybe this new dr. will know more.  An Endoscopic Ultra Sounds is done the same way as a regular one, except the ultra sound waves are observed bouncing off the different organs to give some kind of read out.  They say that t's very subjective, so it really depends on the Dr.'s skill.  I just don't know if I should pursue anything with the pancreas or not.  Am still not able to eat solids, but it really doesn't bother me at all.  Hope you finally got the IV out and are beginning to feel great.  Wouldn't it be the cat's meow to have a great day!

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