Re: Living in denial...facing reality

[Guest guest]

Hello to everyone,

I haven't posted much and have been reading only sporadically since I joined

this list last fall, mostly because after the first couple of months after

finding out I had pancreatitis, I've felt fine. Then I herniated a disc in my

back and have been dealing with that since Dec. I had surgery almost 10 weeks

ago (about a week and a half after asking advice on whether to get an epidural

block. I apologize for not answering everyone who gave me advice, things moved

so quickly after I saw the pain management doc who recommended the shots, that I

ended up having the surgery a week later...it's good to have friends who have

neurosurgeons for fathers!). Anyway, my pancreas hasn't been bothering me, so

I've been living pretty much as I did before last September. I've been eating

anything I wanted, although I normally have a fairly low-fat diet anyway, and I

have to admit, having an occasional glass of wine. And by occasional, I mean

half a glass at Christmas and Easter and maybe one

beer since Easter. I hate to admit that to you all since I know I shouldn't

drink any alcohol, but that's the living in denial part I guess. Between the

pancreatitis and the disc problems, my life has completely changed from a year

ago and a little denial is hard to get away from sometimes.

But...reality has set in during the last week. I started feeling discomfort

again in my upper abdominal area, just below my diaphram. It got worse as the

week progressed and I started to worry that I was having a flare-up. When I had

one last fall, I didn't have the horrible pain I've heard described, but it was

a discomfort that got more and more intense until I called the dr and he sent me

to the ER. I wasn't admitted, but went home on a clear liquid diet for 3 days.

Since I was going to be on my own this weekend with my 4 kids, I basically quit

eating on Wed to try and stop the discomfort from getting worse. I couldn't end

up going to the hospital again with no one to watch them.

So..since Wed nite I've been drinking a lot of apple juice and water, and I

started drinking Slim Fast shakes on Sat for some calories, taking the Creon

with them. I've also had a little bread and apple, also with the Creon. The

discomfort has gotten a bit better, but it's still there...not constant, and

definitely more when I think about it, but also more after I eat/drink as well.

I called my gastroenterologist on Friday, but he's moving somewhere else so I

spoke to his partner's nurse. She said the dr would call me, but he didn't.

I'm going to call again on Mon, at least to get my blood drawn to check my

enzyme levels. My husband is home now, but still, I don't want to do any more

damage to my pancreas. Heidi, you gave me some very good advice when I first

signed on...about there being a lull in this disease, but that it doesn't last.

I guess my lull lasted about 6mo or so...enough time to live in denial for a

while, but I never did sign off from this board..I guess I knew I needed to be

here afterall.

Is there something else I should be doing besides not eating? They didn't put

me on anything but Percocet and something for nausea the last time, and this

hasn't been bad enough for the painkiller and I haven't been nauseous. I'm not

sure how long I can stay energetic living on 2 Slim Fast shakes a day and

chasing kids around and all the other things I do. Any advice you have would be

greatly appreciated...

Thanks,

Falsone

polis, MD

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[Guest guest]

Hi , I am sorry your not feeling so well these days. I have

been in your shoes mnay many times. I would make myself NPO and then

increase it to clears several times a month. For almost a year, when

I was still able to work, the only thing that kept me gong was

chicken noodle soup and slimfast. I have children too and even tho

they try to understand they just cant. Its really hard.

The only suggestion that I would make to you is to start taking some

really good vitamins, an omega 3 fatty acid (I took 2500mg of

flaxseed oil caps a day) and antioxidents. I think there is a list

of good antiox's to take on Marks web page top5plus5. If not, I do

know that Heidi has a list. It really helped to keep me strong

sometimes where there was nothing else that would. Eventually it got

to the point that I could not tolerate them, but you are a long way

from that. ON top of the multi vitamin and the antiox's I took a

protein supplement(an amino acid cap), Vit E and biotin (for my hair).

It was a really huge issue for me to stay as strong as I possibly

could. Even tho I had terrible nausea I would take a zofran about 45

minutes before I ate and made sure I had something very nutritionally

sound to eat. Didn't do much for the pain but sure kep me from

getting too weak. I also starting taking a really good laxative,

Miralax. It is only available by prescription, but works wonderfully

is noncramping and not addictive.

I lost a lot of weight when I had cp but was able to maintain some

strength. I think that is the only reason I came out of all the

procedures that I had relatively well. I truly hope that you feel

better soon and do keep in touch. One of the best things that I ever

did was to bump into these wonderful people on this board. They have

helped me out so many times and I seriously dont know what I would

have done without them.

Warmly,

[Guest guest]

,

there are other things you can try that will be easy on your pancreas

that you might want to use to at least vary your diet from those Slim

fast shakes. Jello, pudding, baby food (just the deserts, cereals and

fruits - as for the meals, lets just say I know why those babies spit it

out), mashed potatoes, gatorade, steamed rice, stuff like that.

Once your pancreas settles down some to where you can tolerate decent

solid food, stay low fat, avoid red meat, try some fish as I know that I

do best on that as a protein source, lots of vegetables and fruits,

rice and pasta (stay away from those heavy fat sauces though). And of

course, stay away from any alcohol. I don't even cook with it. Hope

this helps some.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

I was reading your reply on the post and wanted to ask you some

questions, if you don't mind. I have posted before and am 51 years old

with CP and cystic fibrosis. Nice combination, huh. I developed

pancreatitis last July was my first admission. I still have elevated

lipase and amylase about 1200 and 380. I have only had chopped or pureed

food that I do myself, (I agree the baby food, ugh!) in the blender for

one year. I have tried on many occasions to increase it and the pain ,

bloating, gas, distention gets so bad that it isn't worth the effort. I

have lost a lot of weight. Does anyone have any help for me regarding

how to improve the consumption of food. I have a great appetite. But

when I do eat it is so miserable. My pain is usually around my bra area

radiates into my back sometimes only on the right but this week on both

sides. Is this pretty typical? I know that everyone is different but is

this kind of standard? How long do you all stay on liquids when you have

a flare up? Just a week ago I was on them for about 8 days. Then I

tried pureed food and I have not been real successful this time in

recovering. I am just trying to understand this disease and then I have

to contend with the CF. Many infections, just got off IV antibiotics for

three weeks. I do them myself. I am a nurse consultant, on disability

but try and work a little to keep myself in touch with my industry.

Please let me know how you all deal with this. I have always been an

upbeat person but this has me very depressed, most days not even sure if

I want to get out of bed.

I also am insulin resistant. I do not have diabetes yet. blood sugar

last night ran from 110-230. Any suggestions on how to curb those

cravings for sugar. I have yeast in my lung, fingernails, and

intestines. Probably form most of the antibiotics. I know with the

yeast I should stay away form the sugar but, I;I'm not doing a good job

in that area either. Please write back, anyone for suggestions. Thank

you and God bless you all and prayers for pain free days. Deb