To Sheila, Re: removal of pancreas

[Guest guest]

,

I really appreciate you sharing your experience with me! I had a

sphinterotomy back in Novemeber and am doing LOTS better. I haven't

had any more episodes of the horrible agonizing pain since then. That

pain is unbelieveable to me that you can even stay consious through

it, I keep hoping to pass out during it but haven't yet.

I still have the daily pain of the chronic pancreatitis and what

seem like mild pancreatitis attacks but it is still better than

before if I am compliant with my meds and diet and rest and hydration

etc...

I guess cause it is better now I have spent some time wondering if I

wanted to go back to the specialist and see if he still wanted to do

the surgery and make me almost like normal again. I guess that is

just wishful thinking and I wasn't really considering it too

seriously. I trust my doctor enough to make the call if he can help

me or not but I am not ready to throw in the towel yet.

I really just wish I didn't have to be so reliant on pain medicine

to live any kind of a normal life. But in saying that I am grateful

for all the pieces of normal life I have now that I didn't have

before. I am glad to be back at work (I think it is less stressful

to go to work even on REALLY bad days than it is to stay at home and

worry about the money.) I worry about using fentanyl patches and

taking lortab on those bad days and working on machinery but no close

callsyet and if worse comes to worse I will just have to refuse to

work on it if timing is a factor. My bosses have been super

supportive so far and will understand I am sure. They are just glad

I am back too and try to make it as easy on me as they can.

I hope you are having a great day and appreciate your care and

concern!

Thank you,

Shelia

> Sheila, hi - re: your dr wanting to remove the pancreas and

> reconstruct the duct - I strongly urge you to wait, get lots

> of opinions. I had the tail of my pancreas removed (due to

> Pancreas Divisum - is this what you have?) and they cut out

> a section of intestine to form a new duct. First of all, this is

> one of the most invasive surgeries there is, and second, it did

> NOT work for me. That was in 1980. I've had pancreatitis ever

> since, in and out of the ER, countless ERCP's. MRI's, CT scans

> and about every pain drug made. I now have chronic pancrea-

> titis, since about '98, BUT, at least I have been spared diabetes.

> I have not spoken to or heard from anyone who's actually

> had an islet cell transplant, but it seems to me this is

> the best procedure, as far as % of good results. GET MORE

> INFORMATION! I have been rejected for this procedure, as I

> no longer have enough healthy pancreas to provide for the

> harvest of enough cells to transplant. Keep in mind, a surgeon

> very often has a one-track mind. THEY don't have to wake up

> in all the pain in the world, and then take a year out of their

> lives to recover, only to have the surgery fail, after all that!

> Not trying to scare you, but I wish I'd had the benefit of a CP

> patient to talk to back then! I would never allow it again, now

> that I know what it's like. Blessings to you. Love, in Indy

>

>