Acute/chronic Pancreatitis

I was diganosed about 4 years ago, I am not a drinker but smoke (trying hard to quit) Two years ago I went in and had my gallbladder and spleen removed as well as 40% of my pancreas ( I was missing most of my pancreas duct) since my surgery, ive had 2 blood transfusions and been in the hospital 15 times ( the last being last week) I take Creon and follow a low fat diet, but still have complications. On top of it all Ive just been diagnosed as diabetic. Im so tired of the pain, and all the meds and its hard to "fit" in to society when most do not understand what its like to be in constant pain. Im so glad to find this site and not feel so isolated and hope that I can help or add advise to those who are just now experiencing CP. I am currently on disability and praying everyday they find a cure, it seems like more and more people are being diagnosed and the doctors are all still clueless. Thank u for being here and keeping me sane, Shannon
shannonharrelson shannonharrelson
41-45, F
3 Responses May 22, 2012

dear Shannon, wow, i can't even believe how complicated the pancreatic problems can get!!! i HAVE heard that having an ERCP can cause CP, but i didn't understand all the terms you are using. you are much more educated on the subject than i. i will definitely pray for you. i thought we could NOT have pancreas removed??? i thought it was not like appenddix and gallbladder. i also didnt know that EUS's could cause pain and more complications. my MRCP and 2 EUS's were last month and i've had to fight for the ERCP with manometry. i too, feel blessed that this forum is here!!! up until tonight, when i found it, i also felt alone, the whole, i cant even get to the grocery store, there's not enough narcotics to stop the pain w/out being admitted and no one will admit me, now that they know whats up. frustrating isnt it? i also did not know smoking causes probs, as i sit here, or LIE here, chain-smoking :( <br />
all my best wishes for you Shannon! <3 Mia-Bohème

Thank U Mia and I am so sorry u are not getting the help or relief u need. More than likely its in ur medical records that u were a drinker, not the previous doctor. Either way, keep fighting!!! Have they put u on enzymes? If not tell them u want them if they have diagnosed u with CP then u need them reguardless, they are not narcotics but very, very expensive. If insurance wont cover the cost, there r programs that will help u get them. I am currently on disablitily even though they dont pay Sh@# $735/mth to be exact and it took a year of fighting for that and in the meantime i didnt qualify for medicaid, but Cleveland Clinic was great in that fact as all the hospitalizations, test,scopes and my surgery was absorbed by the hospital because i couldnt afford it. I now have medicaid and just moved to Florida with my family because I cannot live on what I have coming in and because of my continued health problems. I also have a beautiful daughter that is 22 and watched my go thru pure hell and if something does happen I dont want her to be alone. If u can have the whipple suregery or the total , im not gonna lie, its horrible but after I weighed my chances it was the better of the two. I got down to 82 pounds, it was to the point that when I went back inot my GI after the surgery I told him to admit me or I would not wake up the next morning, nd he actually had tears in his eyes when he saw me. Im here whenever if u need to talk, I know it get lonely and like ive said most do not understand at all. Goodluck to U and Ill be sending up prayers =) Shannon

Sorry you're having a hard time. Everything I hear about U of MN is just what Jessacara and ihatemypancreas have said. They are the leading experts in treatment and research for the pancreas. Good Luch and well wishes.

I think since you didn't have all your pancreas out that if you can anyway, it might be a good idea to just have the rest of it removed. The tpict seems to be the best treatment out of all. Those Whipple and all that half panc removal crap seem to be just that, crap. I know many people and the tp is the best way from experienced pancreatitis sufferers at least that I know of anyway.

Thank U for the input, I just moved back to Florida and trying to find a good doctor, I was just back in the hospital last week for another flare up. Even though Im doing better since the whipple and enzymes it still scares me to death, I have alot of other complications due to the whipple, EUS and ERCP, not sure if I want or can handle another major surgery or if its even possible. The doctors dont want to do anything because I developed 2 blood clots in my lung. But have been looking into going to the Mayo Clinic and atleast seeing what they say and what my options might be

Go to Mayo if you like, but please look into University of Minnesota. I know there is a Mayo in Jacksonville, but I haven't heard good things (from drs in FL) about them.
U of MN is amazing and the people there are without a doubt the experts in their field! I had a couple drs tell me I was crazy. I've suffered for 10 yrs and don't drink, take enzymes and follow a low fat diet. I'm contemplating having a TP with Islet cell transplant to see if I can find some relief somewhere. I really believe they are the best. I dont know what kind of position you are in, but if you can somehow get to MN, you won't be sorry.
I hope you are able to find some sort of relief soon. You have stopped drinking right? ;)

Thats the thing, I never drank. When it started I pulled my radial nerve and the gave me larg doses on Predison and half way through the treatment, I felt like I was going to die I was in so much pain and took the dr's forever to diagnose. after about a year of in and out of hospitals they sent me to Cleveland and did a scope, ( 3 or 4) to be exact and tryed the nerve/pain blocker, a week later my daughter found me on the floor, dead white and hurting, they sent me back to Cleveland and come to found out they hit my spleen doing the nerve block and it was hemorraging into my stomach, two weeks later I went in for the whipple and then descoverd hematobia broke off in two pieces and went into my lung. I had drainage tubes in my stomach as well as my heart because I kept getting fluid built up. What exactly is the TP?

TP is total pancreatectomy. The folks in MN transplant your Islet cells so u have a better chance of not becoming diabetic. That is the procedure Im applying for.
If its possible, maybe look into being seen in mn. Maybe they can help

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