How Do People Function With Chronic Pancreatitis?

My name is Shelly, my first attack with CP was in 2002, I was hospitalized for 7 days.  Since then I was having attacks every 4-6months, starting early 2008 I was having more and more frequent attacks.  In desperation I had my gallbladder removed with the high hopes it would help.  Unfortunately it didn't.  March 2009 I had the endoscopy procedure which my GI surgeon said there was definite signs of chronic pancreatitis. Since then I live with attacks all the time, usually they are small and last a few days, other days they are quick sharp shoot pain and I still get the big attacks every 4-6 months or so. I have a pretty good diet and I take my enzymes even though I don't think they work.  My GI Dr. says that it may not help with the smaller attacks but may help prevent really big ones.  I still don't think they are working considering I woke up this AM in sever pain but will continue to take them.  I don't believe in pain medication, not only due they make me sick but they are highly addictive.  Plus you cant function on them, which brings me to my main question, how are people able to function with CP? I have 3 kids, career, a husband and a mortgage.  I hate it when I have attacks to where I find myself snapping at my kids. I feel so terrible afterwards and I end up in bed very emotional.  I also find myself lost at work sometimes, I can't think straight  or concentrate at all and I work for a gyn surgeon.  As a CMA I need to be able to concentrate on what my doc is saying and remember it. Its frustrating!  I work closely with our patients and really have to concentrate on keep a straight face when I get my pains, especially when we're doing a in-office procedure and I'm trying to comfort them in pain!  Its getting to be to much.  How sad is it that I had another big attack two weeks ago and my kids wanted to do Valentine cards with me and we had to put it off till the last minute.  Not to mention Valentines day is my daughters birthday and I put off her party till today which I had to cancel!  I'm trying hard with my diet and it seem the harder I try the worse my attacks get.  I'm pretty lost at this point.  I'm a very active person who I think is high strung.  I love planning baby showers, birthdays, and use to do weddings.  Recently I was put in charge of my daughters fund raiser for her Judo tournament and I was in bed that whole weekend and tried to get stuff done during the week day before the bake sale.  Luckly the other parents came through.  I don't drink at all, which is frustrating at times, I would like to go on a cruise and share a drink with my friends from time to time.  Or have a glass of wine with my friends at dinner every once in a while, but I get sick even with one sip.  My heart races, my face turns red, and I feel sick.  Not worth it, plus now that I have CP I cant!  I'm one of those who have idiopathic CP.  

themomof3 themomof3
31-35, F
12 Responses Feb 19, 2010

I just wanted to say that your story very closely mirrors mine. I have had CP for about 3 years and have had my gall bladder removed with no positive results. I don't drink either and watch my diet very closely. I seem to have attacks around holidays because I let my diet slip. It is a comfort to know that there are people out there that are experiencing the same or similar situation.

They function poorly in Canada. Some women tend to get disability benefits, but by Canada you are an ALCOHOLIC and alcoholics don't deserve any benefits. I was denied 3x and finally exhausted all my appeals. Chronic pancreatitis is Not a severe illness in the eyes of CPP disability and even if it were, they don't give alcoholics benefits (even if they do qualify) they are denied. Speaking from 6 years experience trying in Canada. Denied, denied and denied...goodluck.

I am 29 years old and have had cp sincebi was 16. I am a mother of 2 with 4 step children. I know exactly what you are saying about snapping at the kids and then feeling guilty and upset about it. I dont drink and find it hard to much of anything on somedays. I feel like I miss out on soo much with my kids. I currentlybhave to fight thru my attacks. I was being hospitalized every couple months but due to have a butt head of an ex, he has and continues to try and take my kid's from me if and when I have attacks. I am on pain meds and that is the only way I function on some days. I dont take them unless I have to. And even then I push till the last minute which isnt good. I have talked to my dr about the islet procedure and luckily he is one of the few who can perform it. However we are both no definatly sure bc it not always as a great result. Its amazing reading all these posts bc I never realized so many people went thru and felt the same way I do on a daily basis. Not many people truly understand. Its a daily struggle. I cant work I cant do thing most parent sand peoe my age do amd I feel like not only do I miss out but also my kids and my fiancee. I would like to give my email and maybe get intouch (via email) with you (and any that jave posted) to talk and help support if thats even possible! I am sorry for what you and everyone posting is going thru and I can truly say I feel your pain amd know what you are going tthru. I was 16 when I was diagnosed and at the time my pedi kept telling my mom I was just a kid trying to get out of school. Then finally did tthe tests and .. look at that. .then after many attacks my drs accused me of being an alcoholic.. umm no sorry. It was idiopathic also. Until a few yrs ago when my mom got diagnosed with it among other things. And ahe wasnt much of a drinker. So now they think it might be genetic. Now I have the worry about my kids. You are all Iin my thoughts and prayers. Good luck and if you would like my email to keep contact to maybe vent or talk to someone who understands let me know!

Boy, I feel you. I have lived with this CP as you all are calling it. Well, it is a challenge every darn day. I am 47 years old. I had my first attack back when I was 23yrs old.
It is a progressive disease. Yep, mine is also idopathic. I know that it was from undiagnosed gallbladder disease. I have more procedures that I can count.

As for living with it. I did the surgery, of which helped for a while. They do it endoscopically now. It's a Sphincteroplasty/Septoplasty. Splitting open the common bile duct and pancreatic duct.

It helped for a while. I went some years stable. Then 2002, It got bad again. I restarted pain medications. I got stuck in the pain med crap. Again I have always had pain. Its unrelenting. No matter change in diet or not.

I did the Johns hopkins thing, Georgetown thing. specialist. Zip.

rI had to relocated to Florida from Maryland. I am an RN. and yep, being in the medical rhelm is difficult. Yes the memory is an issue. I had went on Provigil and then Nuvigil.
It is a powerful stimulant that helps brain function. very difficult to get insurance approval. It is for Narcolepsy. But it helped me when I restarted nursing. I was remembering all kinds of things.

Downfall, highly addictive is what the doctors don't tell you. I had detoxed suddenly while in hospital. My last one was 12 days.
Mine affected my lungs with fibrosis to use inhalers and then to my bone marrow to cause severe anemia.

I moved to Florida to get into Cleveland Clininc. I got myself off so many pain medications. I am just down to Vicodin and Xanax.
Did it on my own.

I have now discovered dance therapy. I am making it up. I listen to my favorite music and close my eyes. pay attn to the lyrics, pick your favorites. Dance away the pain.
I am tracking my results and to see if it will benefit others.

Its your frame of mind also. I use guided imagry and use charcaters or make up stuff to name cells and super heros to take the pain away from me. like meditation. That helps too.

I hope some suggestions helped. but you have not been on site for a couple of years.
Take care

Are you sure you haven't got Acute Pancreatitis

I function with a stem cell activator on amazon. Did me wonders

Hello! What is it called and is it still helping???

To those of you who arent qualifying for disablitity. Think about adding on your claim the duress, and emotional stress, ptsd, or whatever. Especially scince the fear of another attack is always lingering. Social phobia that have a mental issue on top of a physical ones are usually taken more seriously. Honestly I think CP is enough to qualify, its considered one of the most painful conditions a person can have, and you will need pain management to help, that comming from a doctor, who told me you just cant treat yourself for something like this. Also many are hospitalized frequently to rest pancreas and for fluids, and pain meds. Anyways, the support of your docs should help if possible. I feel for you all. I just got out of hospital stay, it sucks! Having a long wait to get into pain management, and yes, those who assume its alcohol, but i DONT DRINK! So frustraiting, and some days you just wonder how much more you can take. They do have the islet transplant and pancreatectomy available, but medicare doesnt want to pay for the transplant of islet cells, which keep you from being a severe diabetic after surgery, so anyone who wants that done has to fight thier way through the system, or particpate in a trial if available. Hang in there people, hopefully one day this disease will be considered as legitamite as any other debilitating painful chronic condition. Prayers for all Jona

hi all, im from scotland and i must say this post is exactly how i feel with my four kids, im due to start my career as a trainee midwife which will require me to be on my feet for 12 hrs a day, im freaking out at how the hell im going to manage this, CP over here in scotland isnt classed as a disability so i wouldnt be eligable for that, maybe sick pay but that is literally dying to give my kids the best life possible, im so gutted i cant go out and have a drink with my friends, which means its hindering my social life aswell, really getting me down :( im only 28 and the still havent found a reason as to why i get these flare ups, il struggle to stay on narcotics while working long but this is what i want to do for the rest of my life ive worked so hard to get here, i should be allowed to enjoy my well earned career but i feel that i may only last months due to this pain :( i have a friend that gets a few blisters on her feet every now and again and she gets full blown disability and mobility for hers but CP isnt even on the list, not even for the lower limit....its destroying my life.

My name is Traci and boy can i sympathize with you. I fought going on pain meds and i've had this painful disease for 12 yrs now. I have a 10 yr old son and i was PTA president, little league mom and scout leader. I had to give up all of that because i couldn't commit to anything because i never knew when i was going to have an attack. As much as you don't want t go on pain meds i would highly suggest using a fentanyl patch. You just apply it to your skin and it releases pain medicine at a continual rate so there's no highs or lows and you just replace it every 3 days. My best advice is find a pain clinic who can find something that will work for you. There are non narcotic options out there but it's your decision. Good luck.

Thanks for the comments, i wasn'tt aware one could live without their pancreas. I'm in between <br />
<br />
insurance at 64 and 8mths. however when my medicare beings in July I will inquire into having mine<br />
<br />
removed as the episodes are becoming longer and more frequent.

I pray that your attacks cease.I will tell you that it is a hard surgery to go through.There are only 6 Dr.'s in the U.S. that are approved to do this surgery.At least that's all at the time of my daughters surgery.I wish you the best of luck and you will be in my prayers.If you have any other questions please feel free to contact me.

My daughter also had her Pancrease removed Oct.26th 2009 she was 14.She is doing awesome!! The Dr. that did her's is in Alabama wonderful Dr.It was the hardest but yet the Best decision we have ever made..6months after her surgery she was able to come off insulin and to this day we are insulin free..Best of luck to you.

Congrats on your daughter doing so good after the operation. I too am a pancreatitus sufferer and have been for the last 6 years. I gave up alcohol completely after my first attack but have had drinks maybe on 10 different occassions over the last 6 years which is still not good but its so hard sometimes. I am very curious to know how your daughter could come off insulin after having her pancreas removed? I believed insulin shots would be a must after such an operation? Thanks

Thank you.She was on insulin for 6 months after her surgery.When they removed her pancrease they also removed as many islet Cells "insulin cells" they could and put them in her liver,they were able to get enough healthy ones.After 6 months those islet cells started producing enough insulin for her body,so she does not have to take insulin.Now this is not always the case with all that have this surgery.For some people they are not able to get enough healthy cells.

I'm so glad to hear surgery &amp; islet worked out for your daughter. I also been suffering CP since Sept 2011(not a drinker)&amp; I'm considering getting surgery done and they say I'm a candidate for islet.
I have lost my job because of this disease. I'm constantly in pain. More frequent attacks. It has been hard &amp; stressful on my family(I have 3kids). There are days that I can't even care for them.

DeGeorge903: I have recently been diagnosed with Chronic Pancreatitis and live in South Alabama. Would you mind sharing the Dr. you used for your Daughter? Thanks..... Brenda in South Alabama.

surfing2 I apologize for just now seeing this.The Dr's name is John Christein 1-800-333-6543 .If I can help you any other kind of way please let me know. I am fixing to change my email address in the settings so I can receive notifications.

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I know what you are talking about. I am a 46 year old CFO of a National Corproation, or at least I was until last week, when I had to go out on permanent disability. I have faught Accute and Chronic Pancreatitis for 15 years. Let me fist tell you. YOU MUST get on pain meds if you want to have any control on your life. I know what you mean about not wanting to become addicted. I don't want ot be either, I have no choice now, I have been working for 3 years on the pain meds, and it allowed me to work that much longer. I am having the pancrease removed in March, and hopefully that will help. If you need a GREAT Dr, that specializes in just the Pancreas. Contact the Medical University of South Carolins and get in touch with Robert Hawes.