Can you Help?

[Guest guest]

Hi All,

I am having a hard time with the CP. I was diagnosed 1.5 years ago

with CP, SOD with mild damage to the pancreas. I wanted to know if

anyone else has had these same problems with the CP. My flare up

has been going on for 12 days (pain, nausea). I have been on a

liquid diet for 8 days. Each time I try to starting eat solid food,

I get excruciating pain in the upper mid section and left. It lasts

anywhere from 30 minutes to 1.5 hours after trying something solid.

The solid I tried eating was saltine crackers--nothing more. After

the pain subsides, I get loose bowels. I always have pain and

nausea but this has been 12 days straight that I have had the pain

and trouble eating and the duration of the episode is the longest I

have had. I had oral hydration twice last week because of alll of

the trouble.

The other very odd thing about this flare up is that my blood

pressure is sky high. Anyone else have trouble with their BP during

episodes. I don't normally have high BP. My docs are concerned and

are sending me for tests. They have mentioned maybe a pseudocyst.

Anyone else have similar episodes?

Thank you for much for any experience you can share,

Pat

Thank you so much.

[Guest guest]

Pat,

My blood pressure was always normal until I had an attack. Mine went

up purely because of the pain I was having. 190/130 was the

highest...and then the average was around 150/110. Now it's back to

normal thank goodness.

My longest attack was 2 months. When the pain eased up after 1 week,

they were going to send me home after trying food, they put me on a

full fluids diet, hoping to graduate to solids, but I immediately

had another attack, and ended up on TPN and an attempted whipple.

[Guest guest]

Pat,

It wouldn't be a surprise to me to hear that you have developed a pseudocyst.

The only sure way to determine that would be through a CT-scan of the

abdomen and pelvis, so I do hope that a scan is one of the procedures that

your doctors are considering. What you're describing sounds like the way I've

reacted when my pseudocysts become inflamed and enlarged. We still don't

know what triggers their inflamation. I don't have SOD, but my worst episodes

with my CP with pseudocysts have been as you describe.

I've had two pseudocysts for over three years now. One is resolving, but the

other one hasn't, and when it gets inflamed it increases in size. When this

inflamation happens, I'm in acute pain, unable to eat or tolerate solid food,

and unable to manage the pain with my normal analgesics. I wear a

duragesic patch and use Oxycodone for breakthrough, but when that

pseudocyst gets irritated, not even those pain medications can control the

pain. My blood pressure goes up, and I always get dehydrated. When the

pain becomes that intolerable and debilitating, I have to be hospitalized and

put on IV medication or hooked up to a pain pump with Dilaudid until the pain

subsides.

I wish I could help you, but right now your doctor's should be getting really

agressive about your treatment, and you should probably be hospitalized. If

they do amylase and lipase blood tests, it SHOULD show an elevation in your

enzyme levels, since you are still relatively new to the disease. But that may

not be the case either, as some of us go through severe pancreatic damage

quicker than others, and enzyme levels don't elevate when the damage is

more extensive. I'd only had CP for 22 months when mine burned out and my

enzyme levels ceased to elevate, but mine was a very rare case.

Do try to drink as much water as you can physically handle, at minimum, 68

ounces. A good way to rememer how much you need to drink is to take your

body weight and divide it in half, the resulting number should be the amount

of ounces of water you need each day. The water really should make some of

the pain diminish.

My other advice for you is for you not to let your doctor diddle-daddle around

about agressive diagnostic treatment for this episode. The longer you are in

pain and unable to function, the more damage it's causing to your pancreas.

As Bob said, you will start to lose weight, (my worst episode took off 30

pounds, also), and as you're doing that you're losing valuable nutrients and

nourishment. You'll become weak and fatigued quickly as the damage

increases.

Please be forceful with your doctors about finding an answer for this episode.

Let us know what " tests " they plan to do, and the results of these, as soon as

you can. I'll be looking for your update, and I'll be praying for your relief

from

this pain. I've walked in your shoes and it's a miserable place to be!!

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep, PAI

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

and should not be substituted for consultation with a medical professional.