desperate, new to CP, and MD's not understanding

[Guest guest]

Hi everyone, I really need to some help to my questions, since my two

university center GI physicians don't seem to be able to give me any.

I have said before I have cystic fibrosis and CP. The first attack last

July. Lipase 8000 amylase 850. Today they are amylase 386 and Lipase is

1177. I have had severe right upper quadrant pain and left flank pain

radiating into both sides of my back. Sometimes terrible pain in my

shoulder blades. The GI MD suggested to go on liquids for a couple days

and hope it improves. I have only had puree food for one year. I am

nauseated. And severe distention, hyperactive bowel sounds. I am

insulin resistant but not diabetic. I only weigh 73 today. I was

severely anemic and they finally gave me IV iron last month and brought

my hct up to 9.5. I am still battling a lung staph and pseudomonous

infection and have been on IV antibiotics. Anyway here are my questions.

** Is this where most persons pain is, as I described it above?

** What do you do for relief? I have a megacolon and can not take the

narcotics because they constipate me and it may cause an obstruction.

** How long do you stay on liquids when you get an attack? Last time

it was about 6 weeks for me.

** I do do hyper alimentation at nighttime so I get nutrition. Each

time do you start all over again trying to eat.

** What do you all take for the severe distention, bloating, and

terrible gas?

** Does this ever get better? I am so depressed, I can hardly stand

it.

** Is chocolate and caffeine no no's with this disease? I seem to be

worse when I eat them.

** Where do you find a really good GI physician? I live in Wheeling,

WV about 45 minutes from Pittsburgh and two hours from Columbus.

I know that others have it worse than me and I pray for you. Please

write back and help me sort out things so I can move on in my life and

some type of a life. Thank you God Bless

[Guest guest]

Debbie,

There are a few of your questions that I may be able to answer.

**In regard to your pain, we all don't experience our pain in the same

areas. For most, it usually involved either the right or left upper

quadrant, and radiating pain in the back or flanks can be on either

side. It depends upon what your particular pancreatitis problem is,

and where there may be active irritation. So it's really difficult to

diagnose by precise location of pain, only. My pain is always at the

left to mid upper abdomen, with radiating back pain in the left

shoulder and along the mid line of the back. Just because your pain

may be in different locations doesn't mean that it isn't typical for

pancreatitis.

**If you can't take any narcotics, you might try taking the pancreatic

antioxidants recommended by the studies from the Manchester Royal

Infirmary in the UK. These are specific antioxidants, in very

specific quantities, that have been proven to help reduce pancreatic

pain and reduce the patients visits to the hospital. They work well

for some people, and not for others. It's always worth a try. If you

need more information about them, please let me know, or check in the

archives under " Antioxidants " .

A " tens machine " has helped me considerably during a flare. This

might be of benefit for you. Other alternative methods would be

chiropractor's adjustments, acupuncture and massage therapy.

**The time a person needs to stay on a liquid diet varies with each

individual. It's usually until the pain has all subsided and the

person feels capable of eating, and they supplement with soft, mild

foods, pureed foods, or even baby food, until the digestive tract

accepts the change without resulting pain.

**The pancreatic enzymes that I take help against the bloating and

distention, accompanied by large quantities of water each day. When I

had gas, I took 3 OTC Phazyme tablets with each meal. Now that I take

Protonix daily, I don't have as much of a gas problem as before.

**It's gotten better for me.

**Chocolate and caffiene do bother many people, so it's a good idea to

avoid anything that you've noticed that makes you feel worse.

**With Pittsburgh being only 45 minutes away, if it were me, that's

where I'd search for an experienced specialist. It's a 2 hour round

trip drive to see my doctor, and I think I'm lucky for that. Why

don't you check out this url:

http://www.hello.pittsburgh.com/YP/c_PHYSICIANSSURGEONSABDOMIN.Cfm

I found many individual gastroenterologists and gastroenterology

clinics at this location. I'd call each one until I found someone who

claimed they had experience with chronic pancreatitis and pancreatic

disease. I'd ask whoever that said they did, how many patients they

were treating with CP, and what their standard course of treatment

was. With that many listed, you're bound to find someone who could

help you.

I hope this helps.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina Rep.

Southeastern Reg. Rep., PAI

Note: All comments or advice are based on personal experience or

opinion, and should not be substituted for professional medical

consultation.

[Guest guest]

Heidi, thank you for writing back. I do see a GI specialist at UPMC in

Pitts. He is wonderful. However, they want to do an ileostomy on me to

bypass the colon and I am just so afraid to do it. They cannot guarantee

that it will work and they are only doing it under experimentation. So,

it seems kind of risky. Your answers have been so helpful. Finally

after about three days on liquids I am feeling a little better. I will

see the GI MD this Wed. so I will let you know how I do then. I still

have this lung infection and carrying a fever most days. Do you notice

symptoms with consuming sugar. I seem to get worse and have more pain.

My physicians said that it may be because I am taxing the pancreas with

the heavy load of sugar and trying to regulate insulin. I hope you don't

mind the questions, I am still new to this. I pray for all that have it,

I never thought I would be in this position. I worked for 33 years as a

consulting nurse and flew all over the country and loved my work until

last March. One year this year. It has been very hard adjusting to

this, being on disability. I have now been able to establish my own

business. I thank God for people like you that support each other

through this very difficult disorder. Take care and God Bless you. Deb

[Guest guest]

Deb,

To be truthful, before I became an insulin dependent diabetic, I

didn't notice painful symptoms consuming sugar. Even though I've been

told that refined sugar was not good for us with pancreas problems,

during the months prior to my DKA dx. I CRAVED sugar products, and was

eating jelly beans and Twisters (fat free - haha) like there was no

tomorrow! At the time I wasn't aware that my BG was running in the

800-900's.

I would have no doubt at all that what the doctors have said about

sugar taxing the pancreas and disturbing the process of regulating

insulin. That makes perfect sense to me. I'd suggest that ANYTHING

that you find makes your symptoms worse should be added to your

" forbidden " list. If it hurts, don't eat it! Normally, our body is

our best teacher, so listen to it closely.

The doctor's name that I just posted may be the one that you're

already seeing, now that you mention seeing someone at UPMC. I can

understand why this surgery would frighten you, it's hard to accept

something that's an experiment and without any guarantees of success.

Good luck, with whatever you decide to do.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

www.pancassociation.org/anthology#Heidi.html

Bluffton, SC

SC State & SE Regional Representative

Pancreatitis Association, International

www.health.groups.yahoo.com/group/pancreatitis/

Note: All comments or advice are personal opinion only, and should

not be substituted for professional medical consultation.