Re: To Robin re:

[Guest guest]

Hi Robin, well I can certainly relate to your story below. I'm

currently trying to find a GI that specializes in pancreatic disease

locally. If I can't find one, then I may have to consider traveling

to see Dr. Lehman (that's if he's taking new patients) or

something. I did just find something on a web search for a GI doc

in Providence, RI which is closer to me than the Lahey Clinic in

Boston, MA. Someone had written a review on him and said that their

continuing pain post-cholecystectomy had not let up and that she

went to several doctors who gave her various reasons for it...you

know the usual, IBS, etc. Anyway, at the end of her review she said

this doc dx'd her with cp utilizing ERCP (which the doc at Lahey

seems to poo poo for some reason) and she absolutely raved about

him. So I put in a call this morning to his office in the hopes of

getting in to see him...maybe he'll be able to help me. Thanks for

the words of encouragement....I sure need them today...I don't have

problems with depression but I sure feel down today. Anyway, just

wanted to say thanks and wish you well!!

love

[Guest guest]

Thanks so much for your kind and encouraging words Robin...I can't

tell you how thrilled I am to finally be getting to someone who will

be able to figure out what's going on with me. Not to mention the

icing on the cake!! My insurance will cover everything!! I feel so

relieved just knowing in a couple more weeks...I will at least know

something!! That's why I decided to just go for it...instead of

fooling around w/these local docs. Also, even if I had to pay for

the flights myself...my Mom was telling me that Southwest has some

great deals right now...something like $99 each way. Not bad...you

have a good weekend too Robin....one foot in front of the

other...it's all we can do sometimes I guess.

Hugs back!

[Guest guest]

Hi everyone. I am new to CP. I wrote a couple of weeks ago because I

also have Cystic Fibrosis. They say that is the underlying reason for

the CP. I see the guru specialist at the UPMC digestive disorders clinic

in Pittsburgh, Pa. Sept 1. Please let me know, is bloating after

eating, a large amout of distention like you are going to burst, with

pain in the back, by your bra line and where your kidneys part of the

problem. Right now my lipase is 2748, it was over 6000. They say that

they want it to come down more so the pancreas will not burn out

completely. I am on TPN. I'm a nurse so it's not bad to administer.

The devastating part is that I had to quite my job that I literally loved

in March and have had so much trouble with depression. I am on Zoloft

which I swore I would never do.

Please let me know what foods are the best to eat. I do not consume any

fat, or hardly any, no lipids in the TPN, I heard no caffeine and no

chocolate. I always drank decaf anyway and never cared for chocolate.

When your enzymes are up should I stay on clear liquids or advance my

diet? The docs are no help and I can't find a good nutritionist. I have

great CF doctors. In march I was running four miles per day and now can

hardly walk across the room. Is the fatigue really this bad?

Because I am scientific, I just need to know if these are the symptoms

and how you all handle them. I can usually live with anything since I

have the CF, if someone can help me come up with a plan. I can just

hardly handle the distention, of course it was much better when I was on

the clear liquids, but you can't do that forever. I was getting so weak

even with the TPN. Hopefully you can give me some in site. I pray for

all of you. Deb