well said Dave......I think we all who have known each other for a year or 2 know how much this is our family away from our rl family......the support we give each other is tremendous because we all have been there or can sympathize what we are going through. I have talked to Sheila many times on the phone when her son was going through the surgery and she is a beautiful person inside and out and don't mess with her son or she will kick your a$$ lol! One day I will get to Cali to meet her....just need to stay out of the hospital for awhile so I can travel gawd! Hang in there Dave saying prayers for you hon!

Diane

This site and the people on it are the best! God Bless all of you.

and Chris saying prayers for you and your wife too hon! You are my new bro! :))

Well said everyone..Even though I haven't met everyone here offline, Except Shelia, You guys are more caring and empathetic to the everyday goings on in my life than most of my real family. WE ARE A FAMILY...a little dysfunctional, in my case I feel a lot dysfunctional at times, but FAMILY...

Shelia is a wonderful, fun, vibrant and beautiful woman who has been through a lot with her son. Happy she is back..

Lets stick together & keep everyone happy and healthy and out of the hospital as the Holidays are fast approaching...

Cheryl

Thank you Diane. You are my new little sister. I am way bigger than all of you combined so I am everyone's big brother. And Cheryl, I think we are a family. Our own families will never understand what we are going through with this horrible disease. When we come here and speak of the problems we are having, I look at the post and say "Hey, I am going through that same terrible thing". It really helps to know that we aren't the only ones in the world with this thing. The way I found this site was by googling "Chronic Pancreatitis Suicide rate". I was trying to see if anyone else with this disease was going to sit down next to me on the train tracks so I would have someone to talk to while waiting for the train. Since I found the folks here, I decided not to do it. Diane had a rough time talking me down a couple of times. On another post, I said that Diane saved my life. That statement is true. I was ready to give up. It only takes one really bad day with no one around you understanding what you are going through. My family means well but how much of my whining can they stand? Anyhow, thank you all for being there. God Bless all of you.

WOW! I almost started crying reading this thread here.... Thank you Dave for your honesty!! I love you guy!!! And I would like to add that if it wasnt for Diane and a few others of you guys one here!! I would have been a total basket case when M was going thru that frikn HELL surgery!!! I call Diane crying my eyes out about my son and I have never even met her!!! and I was posting all of my crap the little "tinhat" group had to listen to my shit for 2 months!!! and thank you all for that... even though each "tin hatter" was going thru their own hell... they put thierself on hold just to listen to me whine !!!! what does that tell you about this little family on here!! :) and hello there large frog.... I am glad u mentiioned the "S" word because that is something we are all afraid to admit ....but without saying it out loud... It is very much a LOST ....and....complete EMPTY feeling when you KNOW that your loved one is contemplating such a thing....but on the other hand when a person lives their life...sitting on the couch on pain meds and their only "adventure" is a hospital....and as you all know it is an ADVENTURE cuz you never know if you will be treated right or not!!!! one cant blame one for such thoughts!!! but OMG we are all alive here!! and I promise you that there is a reason for each and every one of your lives!!! ( I know D Im repeatn my self... lol )....but seriously as much as Diane helped me and M thru our own HELL....is probably more than she will EVER know!!! luv you Doc D!!!!!

Hi Sheila. My name is Chris.
I found our family here in June.
Since then, I have been hospitalized twice for a total of 14 days. Being in the hospital sucks pretty bad. (I'm sure you are quite aware of that)
As far as the "S" word, I think it is something that is in the background of many of out thoughts. I have been wrestling with it for about a year now. I finally talked to my Doctor about it a few weeks ago. She prescribed a medication (that I suggested) that was loaded with side effects. I experienced most of them so I had to stop taking it after only 4 days. The good part of the medication kicked in for a few days the following week. I felt fantastic! Nothing hurt. The sun was out. The weather was perfect. Flowers everywhere. Then it wore off. I started a new medication that doesn't seem to be working yet. I will give it a few more weeks to see if it makes a difference.

I am still working full time. I have to keep my job or I lose my health insurance. Only my primary will take medical assistance so I would need to find all new docs if I lose my job. My employer seems to be looking for a way to get rid of me. I am costing a lot of money on the health and prescription plans. I have lost a lot of time from work with the hospitalizations. I am lucky to have a labor union helping me. The Family and Medical Leave Act of 1993 is saving my butt, too. All of my absences for the next year will come under the FMLA.

I got this crappy disease from damage done to me by a really bad surgeon. He botched my gallbladder removal in a major way.

I am very happy to have found this site. If it weren't for Diane, there is a good chance that I would not be alive today. I had it all planned out to make it look like an accident. Insurance doesn't pay if suicide is involved. My only life insurance is through my employer. I have been diabetic since 1986 and it has done a lot of damage. I can't pass an insurance physical.

Anyhow, that is my sad little story. This is a wonderful site. I am also on the FB sites but this is more like a family atmosphere. I really feel like I have good friends here. Friends that really care. God Bless everyone here. It's almost 2:30am. Can't sleep. Could this disease suck more if it tried?

wow Chris...nice to meet you hun.. so sound like a "tin hatter" to me lol..... I wish you the best with trying to find that perfect concoction of meds..... that is soooo hard..... btw are you anywhere near Dr. Whitcomb? He seems like the one person in this world that could truly give you some real life answers...but...I guess it is what is it is sometiemes.........Cheryllllllllllllllll call me!!! I really wanted to visit you when your were here but DANG M kept going bak to the frkn ER.... the minute he was discharged from his surgery... he was bak in the ER 5 times and admitted twice.....but since August 7 he has been stayin out!!! so now if you are back in Fresno give me a call hun..... DIANEEEE come to Cali!!!!!

Hey Chris have you tried signing up for SSD......???
Man I am so sorry that this happened to you by a botched surgery! There is nothing worse than that!! completely unavoidable! Have you met "twoduct" yet aka LLoyd??? He is also in this boat due to a botched ERCP done by none other than my own sons GI!!! can you believe that! I gues we escaped that disaster..

Hi Sheila. I looked into SSD. I would make too much money on SSD to qualify for medial and I am 52 years old so Medicare won't kick in until 10+ years after my funeral. With all of my problems, Medical Insurance for my wife and I would cost about $4000 per month. She survived breast cancer in 2005 and has some other issues. The Health Care Insurance price is a guess. I priced it in 2002 and it was $2800.00 per month then. I didn't have CP, Chronic Pain Syndrome or a few other diseases that I have now and my wife didn't have cancer when we were quoted that price. It is probably quite a bit higher than 4K. SSD would pay me $1700 per month. My benefits that I have with my job are almost equal to my salary. I also have life insurance with my employer for 80K. It is the only life insurance that I will ever get as I am uninsurable. Holy crap! The more I type, the more I realize how much it sucks to be me.
I shouldn't really complain. There are so many others with problems that make mine look like a boo boo on my finger. I can still drive and go to work and do so many other things that many can no longer do. I whine too much.
I actually had a good day today. I took my Wife for a drive around the mountains of Central Pennsylvania looking at the trees changing color in anticipation of winter. I took her to dinner at her most favorite place in the whole world, Cracker Barrel. It sucks for me to go there as there is absolutely nothing at all I can eat there. I had an iced tea and drew pictures of various doggies and gave them to her. I take her out as much as I can afford because she is the only person on the face of the earth that will put up with me.

.As far as Dr. Whitcomb is concerned, I don't know who he is or where he is located. A Google search brought 2 Dr. w's - one in MA and one in Pittsburg.
Wow! I can really get off of the subject and ramble. Lord, I was born a rambling man. Anyway, It's really great to meet you and I hope to hear more of you on this site. Chris...

BTW: What is a tin hatter? I had one but it was taken by aliens when I was taken aboard a UFO. I was trying to stop the aliens from reading my thoughts but a series of holes in the hat allowed my thoughts to seep out. I learned to never use a spaghetti strainer as an anti-alien helmet.

Chris your a tin hatter already and just need a proper tin hat and the anthem, by the way did anyone ever find the anthem again? This is gettin out of hand adopting folks into our little band of thought protectin alien dodgin tin hatters without our damned anthem! Now what was I talkin about again? Oh yeah rocket ships thats it rocket ships, hee hee hee

The last time I was abducted, I was down the road at my neighbors farm. It was night time. I was just about to push over one of his cows when, from out of nowhere, an alien ship put down a beam of light pulling up me and the cow. They looked at me and put me back in the field. I think they really wanted the cow. I was wearing a baseball cap with aluminum foil covering the inside. I think they threw me back because they couldn't read my thoughts. Good thing, too. I was thinking about how ugly and creepy looking the aliens were. They were blue, about 4 feet tall and wearing blue overalls. Anyhow, if you can find the anthem and teach me how to properly construct a proper tin hat, I would greatly appreciate it. Thanks and have a good night.

OMG who gave Chris all that tinfoil???? Toy!!!!! have u been riding around in that mother ship without us???
Wow.... Chris....I am so sorry that all this has happened to you hun..... just not fair..... well yes, it is good that you can still go to work...and wonderful that you are able to take your wife out!! that is a plus!!..Hey I am 52 as well!!! :).....So how many years have you been suffering with CP?.....

Hi Sheila. I have had CP for about a million years. The Doctors say around 2 years. I'm pretty sure it's been a million. Never have I had to deal with such horrible misery. I saved my creepy little story in a file that I post once is a while of how I got this wonderful happy fun-time disease. It goes like this: (note: print this out. It Makes a good read on the toilet.)

Howdy! I had a bad surgeon. In Sept 2009, He tried to remove my gallbladder and broke it into pieces causing stones to scatter. Before we started, he told me that "if anything goes wrong, I will switch to an open procedure for patient safety". Something went wrong and he didn't open me up to fix it. He was running behind schedule, it was Friday and he wanted to do a lot of surgeries to make a lot of money. (My opinion) He has a terrible bedside manner and was mean to my wife when she began to cry as he was explaining his screw-up to her. Anyhow, he pumped me full of pain meds and put me in an ambulance for a ride to the hospital where I stayed for about a week. (Surgery was done at surgical center) CT scans, hidascans and endoscopes showed a leaking bile duct, stones clogging my cystic duct as well as other problems created by this butcher. I went home from the hospital with a tube sticking out of one of the incisions with a bag that looked like a hand grenade. It kept filling up with a nasty looking bloody fluid. I had an ERCP done and had a stent put in my bile duct to stop the leak. There was a 10% chance that I would develop acute pancreatitis from this procedure. I got the whole 10% and was hospitalized again for 10 days. An ERCP done about 3 weeks later to remove the stent was unsuccessful as the stent could not be found. I had 4 hidascans and 3 CT scans in the meantime to try and figure out how to fix the damage. I was glowing by the end of the month from all of the radiation. I had no faith in the butcher that made a mess out my gut so I went to a large rural medical center in central PA called Geisinger medical center. The head of oncologic surgery took on my case and operated in December. He is an outstanding surgeon. I was hospitalized for about 6 days after an open gallbladder removal was preformed along with repair of the other damage. I was in surgery for about 5 hours. I was sent home with a tube and a hand grenade full of nasty looking fluid that I had to drain frequently. After a month or so, I returned to work. Lucky for me, I work for the State and I have a Union which helped me save my job. I felt OK for a couple of years. In 2011, I started having stomach problems. The pain was pretty bad so my primary Doctor started me on a Fentanyl patch at 25mcg. This helped but certainly didnt make the pain stop. As time went by, the pain increased. I spoke to my Gastroenterologist. She thought it may have been other problems so we tried different meds. No good. Had CT scan, ultrasound, blood tests, etc. which showed nothing terribly abnormal. I started doing online research and diagnosed myself as having CP. I suggested this to my Gastroenterologist. She agreed that was a possibility. I went back to Geisinger and had an Endoscopic Ultrasound. The diagnosis was confirmed along with cirrhosis of the liver. I was diagnosed with kidney disease a year earlier so this is not what I wanted to hear. I was hoping that I was wrong. Anyhow, here I am. I am 52 years old, never drank or smoked and I am falling apart. Looking back, I should have at least drank and got some fun out of life. The cirrhosis was caused from eating lots of fast food and pizza and greasy crap that I love. I havent had any crappy food in a long time. Its really hard finding food low in fat that doesn't taste like a hobo's foot. Not many choices. The big D has worked it's way in now as well. This little part of the story is new as of Oct 2013. I am taking meds for depression that don't seem to be doing anything at all. I guess I will give them more time. Thats my sad little story.

Also, I am currently on Fentanyl patch 100mcg, 20mg Oxycodone twice daily for pain, Creon 24000 units 2 caps with meals and 1 with snacks, Prilosec and Reglan. I am on a ton of other meds for diabetes, hypertension and kidney disease. I work in a job that requires me to be outside running around about half of the day and at a desk for the other half. I have lost about 75 pounds since May. I could stand to lose a lot more but my Doctor doesn't want me to lose weight this way. She wants me to eat a low fat diet. I just don't feel much like eating. Dehydration is a constant problem for me as I don't really feel like drinking either. I drink mostly Gatorade G2 grape as it is low in sugar.

So the two years seems like a million. It is really getting old. What really suck worst of all is that I didn't have to get it. It just sucks to be me I guess. In case you haven't noticed, I feel sorry for myself a lot.

hell I wish I was abducted by aliens they would probally fix this shit they couldn't do any worse experiment on me than the joke ass doctors been doing for 4 years