36 year old female with CF and now Pancreatitis anyone else?

[anonymous]

Sorry my first time on this site, and I hit the wrong button!

My name is Liza and I live outside Philly and I was just wondering if there were any other Adults with the onset of Pancreatitis. I am married and have two beautiful children. I have a J-Tube newly installed and my weight is down from 130 to 90 pounds.

I am really lucky and we are discovering I have a specific gene mutation where I suffer almost all in digestion and no real lung involvement. (I know, I am very blessed).

Just trying to find others like me.

Thanks,
Liza

 

[tfontain]

i started having pancreatitis in my late 20's / early 30's sometime... every 3 months or so.. all they could do is take me off food, give me pain killers and an Iv. They would test amylase and lypase levels and say yes it was pancreatitis. After a few years, those stopped showing anything and going to local ER for help became a hassle.... thought i was drughead looking for pain killers.

i've been trying to eat less red meat (once every few weeks now), and try to catch it early - sharp pain/hurting under the ribs and through to the back (stop eating and if needed take some pain killers).. before going to ER, etc. i try to still drink water.. because when you get too dehydrated they can't insert Iv.... so its not actually NPO (nothing by mouth).
In the past year i've only had 2 ro 3 mild attacks and handled them at home (stop eating and a few leftover pain killers).. and (knock on wood) they seem to not be as frequent.

Docs said after a while the pancrease may quit.. which is also scarey since it makes insulin too... so they are watching me closer for diabetes now..

hope this helps some.. if you have quest i can help with.. just ask/email.

BTW: i was primarily enzyme deficient too.. until last few yrs i've had more lung & sinus problems.

 

[anonymous]

Hello, I don't have CF but my son does. I do have Crohn's Disease and have dealt with crohnic pancreatitis since I was 11. I laugh when I read your post,Ted because after a while my amylase and Lipase fluctuated so much, thay would be really high and I'd have no pain or low and I swore someone was stabbing me through my back. ER visits were no fun and I would end up with central lines in my chest cuz my veins were so used up. I've probably had more demerol, they couldn't give me morphine, than even the most seasoned drug abuser!!! I'm not trying to scare you LIza---my kind of pancreatitis is rare. If you are in pain, you get drugs and they may alter your enzymes. weight loss is common, but you will start to gain when it gets under control. I am fine now and have had very few problems lately. hang in there, it sounds like you have a great family and I wish you the best!

 

[anonymous]

This is the first time I have posted on this site.
I have a 14 yr old daughter with CF, CFRD, and chronic pancreatitis.
She has had 3 hospitializations due to it over the last year.
My daughter only had stomach issues until last January, and then she started having respiratory issues as well.
Kate is pancreatic suff, but she does take enzymes, which seems to help with the pancreatitis episodes. Apparently from
what the docs say, when you are suff, pancreatitis is more common?
I guess the question is :
will she become insufficient?

Take care
Robynne

 

[anonymous]

Thanks to everyone who replied to my question of the Pancreatitis, I appreciate the insite. I am doing better the last few days, hope you all have a terrific holiday! Anyone wants to reply to me in person my e-mail is Pleasantclan6@aol.com. My best to you all - LIZA MEREDITH

 

[mare]

I am a 50 yr old female, I found that while I can't eat beef, I can eat Venison without any symptoms or pain.
Just an FYI to all.

 

[bubbles]

Iam a 33 year old and I was diagnosed with pancrease divisum back in 1999 ,which is a birth defect of the pancrease I get pancreatitis all the time and all last year I spent in the hospital . I have a brother that is 36 and just this past year was told he has cystic pybroise and a rare gene too that they have never seen and don't know how to treat , well while I was looking up this cf diease I found that it also efects the pancrease not just the lungs .... I had my doctor test me for the gene and to our surprise I have it too and maybe why my food don't digest and I get this pancreatitise . I have had stint placements in Indiana 2 times a j- tube that never worked and a port-a-cath that feed me thru my chest called t.p.n which was great but It went bad and then the blood infection etc... I now am waiting for this to be redone so I can try to let my pancrease rest ..my enzimes no longer go up when I have a attack cause the nerve has now been damaged from having pancreatities so much , It has been a terrible for me and I have 3 boys ages 11,10&7 they really have been afected by my being ill . I have to take pain shots myself daily of stadol, demerol etc.. and I wish I could just be pain free without the drugs you have to take , Iam finding that may never be ..... DO YOU GO THRU ALL THIS TOO? I wish to hear back from you , finally I feel Iam not alone . Thanks for listening .....take care mom from Missouri<b>bubbles</b><img src="i/expressions/rose.gif" border="0">

 

[anonymous]

I am 34 and have chronic pancreatits. I have had several painful attacks and been fed through ivs. The best thing i have been able to do for myself is avoiding foods that i know are hard on my pacreas. And when i feel the pressure building on my pancreas. I skipp eating for awhile, if it is not to bad i can drink water to keep fluid in my body. I currently had a bad attack not long, which left me in alot of pain and weak. I had to do iv's after that attack. I try to stay home and ride out most attacks because i want to be with my child and theres not much the doctors can do for me. The best thing is to pay attention to your body and learn what seems to upset your pancreas.

 

[anonymous]

Dear Liza,

My name is Amanda and i am 25 and i was diagnosed at 11 months i found a great way to get around alot of digestive problems. Just a little background when i was growing up i was in the hospital about once every two months when my mother(a massage therapist) finally took action and took me for my first acupuncture appointment. After that appointment i was hospital free for 6 years!!!! Since i started combining alternative treatments with my regular CF medicines I've had iv therapy about 4 times which my doctors find to be amazing, and i was in bad shape........Which brings me to my point 2 years ago i started having similar problems to the point i was getting blockages and all that fun stuff.......This summer i started seeing a Colon Hygenest and getting High Colonic Enemas and since, my doctor is very pleased with my blood work and my weight. I gained about 20 pounds. Plus she put me on plant enzymes which has boosted my health to the point where i no longer need many of the medicnes the i was on except for my inhaled meds. Most doctors don't recommend high colonics but my doctor seems very pleased. Plus its gotten alot of the mucus out of my intestines which was the underlying factor to alot of my problems and many CF patients problems..........If you want to know more feel free to e-mail me Mandabar413@yahoo.com

Amanda Munoz

Northern NJ