Re: Recognized?

[Guest guest]

Sonja,

I can totally relate to where you are coming from. My cp has not reached the

point to being as severe as it sounds like yours is. My weight did drop

drastically enough at one point that my doctor told me that I absolutely had to

eat because I was showing signs of malnutrition. However, even then, my weight

was nowhere near dangerously low. It went down to 155 lbs. I am 5'9 " tall, so

155 lbs is not a bad weight, but for me it was just a little too low. It was

rather ironic for the doctor to tell me I had to eat and to not lose even one

more pound. Only two years prior to this, I had been almost 100 lbs overweight

and I had weight loss surgery because every diet I had tried never worked long

term. By the way, I had my first 'documented' attack of acute pancreatitis in

January 2000, almost two years prior to the weight loss surgery. I wanted to

clarify that because people always ask, " Do you think it was 'that surgery' that

caused you to have pancreatitis? " Since the pancreatitis began almost two years

prior to the surgery, it seems hard for me to believe the surgery caused it.

Anyway, I'm now struggling with what my GI doc says is 'fluid shifting' in my

abdomen. My weight was a nice and healthy 170 lbs in May 2004. Since then my

weight has gone as high as 201 lbs with a belly that is rock hard and looks like

I am 7 months pregnant. For the most part, my weight is now ranging from 184

lbs to 196 lbs. I have had my weight go up or down as much as 8-12 lbs in less

than 24 hours! Even at 184 lbs, my belly is bigger than it was when I weighed

260 lbs! A lot of times when I eat or even just drink something, my belly

'blows up'. It is so incredibly uncomfortable. Sometimes it is so tender that

I cannot even stand the touch of panties on my belly. I can eat just about

anything one day and then eat the very same thing on another day and have

horrendous pain, nausea, swollen belly and just feel like crap. I can actually

be feeling good, thinking - okay this is going to be a good day - only to eat

just a bite or two of something and feel so bad I just wish someone would put me

out of my misery.

For me, this is not every day, and on some days, it might only be part of the

day. I cannot imagine how hard it must be for you with it being every day and

just about everything you put in your mouth. I do have a lot of trouble with

meat and with foods with protein. There are times that I have to go weeks

without eating any meat. I can never, ever eat beef as it will surely send me

to the hospital.

I also have other health issues in addition to the cp. I have systemic lupus,

autoimmune liver disease, autoimmune clotting disorder which I have to take

blood thinners for and even with the blood thinners has caused me to have at

least 3 mini strokes, IgG deficiency which puts me at increased risk for

infections, type 2 diabetes which was probably caused by the chronic

pancreatitis. Even with all the other health issues I have, it is the chronic

pancreatitis that disrupts my life the most. It's usually the cp that sends me

to the ER and hospital. It is the cp that causes me to need medicine for pain

and nausea every day of my life for over 2 years. I honestly feel that if not

for the cp, I could handle working on a job full-time and would not have had to

give up a career I loved in March 2003, only 9 months after the return of the

acute panc attacks.

I have no desire to leave this earth. I will fight this disease to the best of

my ability for every day that God allows me to be here. However, giving up

would certainly be the easier thing to do.

To be honest, probably the hardest part of dealing with cp is seeing the pain,

stress, and worry that it causes those who truly love and care for me.

Sometimes I think my entire family lives their lives in fear of my next attack

even more than I do.

CP is a horrible disease and honestly I probably have it easier than most. Even

though my attacks that can't be managed with my home meds have become more

frequent, my pancreas is only showing the beginning of cp. That's probably

because my attacks are caused by SOD (that's the best guess of my doctors for

now) so I think a lot of times that I am having even the most severe pain, my

pancreas may not be getting more damage - the pain, nausea, and vomiting may

just be from spasms. Obviously, there are many times that the spasms are severe

enough to back up the bile and damage the pancreas. that's how the pancreatitis

became chronic and also why I have diabetes. However, it does seem that in my

case, the actual damage to the pancreas is progressing more slowly than with

cases where it is actually the pancreas causing the problems.

The way I've explained this may make no sense at all and is really just my

assumption.

I honestly don't have a lot to tell you that will make things better for you.

It is really hard to want to go out to eat when even the thought of food (not to

mention the smell) makes you feel so horrible. As for foods to try - I really

have little advice for that. I know many days I live on popsicles and ginger

peach tea. I know you said you are sick of tea, but if you have never had the

Republic of Tea's ginger peach tea, I do urge you to try it. I drink it both

hot and as iced tea. The ginger is very soothing to your stomach and there are

many days that the ginger peach tea has kept me from the hospital. You can

order the tea over the internet. Here's the link

http://www.republicoftea.com/ You can get the tea with or without caffiene. I

normally get the decaffienated tea. I also use Splenda to sweeten it as I have

found Splenda to be the best tasting of all artificial sweeteners. For the iced

tea, they have a neat pitcher with an infuser to make it easy to make iced tea

using the loose leaf tea if you prefer the loose leaf over the tea bags. Here's

the link for the iced tea brew pitcher

http://www.republicoftea.com/templates/detail.asp?navID=478

I know it is not easy, but hang in there. We are here for you and we can

certainly relate.

W

-------------------------------------------------

This message has been scanned for viruses and

dangerous content by PCLNET, and is

believed to be clean.

Visit www.pclnet.net and get a 3Mbps cable modem!

-------------------------------------------------