Re: Greetings Bert - Lion

[Guest guest]

Dear Bert - Lion,

Thank you for welcoming me back to the family! I appreciate yuor taking

the time to introduce yourself and share your pancreatitis history. man you

have had a rough time of it these past years! :-( It's a real bummer having

this disease isn't it.

Don't worry about being verbose. I like to learn what other C.P. have

been going and what has and hasn't worked. That way I know what you've been

going through and I can learn through other people's experiences like your

pancreatitis having been initially being caused by gallstones. Like me, your

pancreatitis came out of nowhere - what a shock to the system that is!

Also, I tend to type long messages and I appreciate the effort and time you

put into telling your story.

I could really relate to what you said about your ERCP experiences

starting out easy, then getting harder to endure as I related my

claustrophobic experiences in the ERCP chamber in the e-mail that I sent to

you and . Did they take your gallbladder out using the endoscope? I

understand that is what they are doing more of these days. Mine was taken as

part of the Whipple.

Yes, I agree that the ERCP can cause a bad attack. I got upset one time

around 1995-6 when my regular G.I. was out of town and another grumpy Dr.

performed it. When I woke up back in my room I was in horrible pain which I

recognized as a pancreas attack. Because I have chronic pain I can easily

tell the difference. A lot of times they couldn't give me enough Verced to

put me into that " twilight sleep, " and I stayed awake throughout the

procedure which is why I developed that awful, scary, claustrophobic feeling

during ERCPs. You have to say it's kind of an uncomfortable position to be

in. Anyhow, I begged and cried to the nurse to help me with some more pain

medicine, anything to get out of that horrible, searing, throbbing, stabbing

pain. After two hours of waiting like this I was about ready to jump out of

the window (if it could have been opened) and this grouchy Dr. came in and

acted really disinterested and like he had a train to catch. He gave me a

cursory belly exam then told me that I was just having gas pain! Well, like

Chrissy said you know your own body the best. This was no gas pain although

they do pump a lot of air into you during the procedure. It was an accute

flair up. Period. I begged and pleaded with him for some kind of relief and

after 2 more hrs of agony the nurse came in with a PCA pump which was a gift

from God at that point.

I'm sorry that you had a relapse after having that relief. What a major

drag. After having the total pancreatectomy and islet cell transplant you

sound like things were looking up, and now you have this problem. It sounds

very discouraging, and I wish for you that this is a temporary set-back and

that you'll soon be back to feeling much better. The pancreas is such a

mysterious organ to me. For such a small organ it sure can raise a lot of

fire!

Are you still playing in an orchastra? What instrument. Maybe you're not

able to at this point, but hopefully will get there on your journey soon!

:-) Please keep in touch and let me know how things progress. I'm always

interested in other folk's experiences like I said. Thank's a lot for the

welcome again, I love getting and sending e-mail. Be as well as you can be

man and hang in there!

Your New Pancreas Pal,

Henry

> My recovery was kind of steady but then hit a wall. I had moderate

> pain that lingered in the solar plexus and RUQ. I had many tests

> without anything conclusive so I was told to have an ERCP. The

> doctor admitted to having a rough time making the manuever and sure

> enough a day later I had another attack of acute pancreatitis as a

> result.

>

> At this point I begin to have acute pancreatitis about every 6

> weeks. I bounce around from GI to GI until I finally get directed to

> the UC Pancreatitic Disease Center. Dr. does an

> ERCP/Manometry, diagnosis obvious SOD and treats it with a temp

> stent and sphicnterotomy. This causes a period of almost 8 months

> free of attacks!

>

> Then Dec. 2002 I have another attack of pancreatitis. It is believed

> I may have some kind of cellular issue now. I start having attacks

> every 3-4 weeks each requiring hospitalization. In March I start the

> process to have a Total Pancreatectomy/Islet Cell Autotrasplant. I

> have two more attacks while doing the evaluation for the surgery. I

> experienced 15 hospitalizations for acute pancreatitis.

>

> May 15 I underwent a total pancreatectom/islet cell transplant

> performed by Dr. Syed Ahmad at the University of Cincinnati Medical

> Center. I am released 9 days later, moderately diabetic and

> otherwise pretty much kicking tail and taking names, recovering at

> fast rate.

>

> So here I am 7 months post-op and overall I have extremely well. My

> diabetes is fairly well managed and the only problems with it are

> because of my newbieness, not sticking strictly to my dosing

> schedules and eating too much bad food because I can again!

>

> However, I started this month to have a different kind of RUQ pain

> and different kind of nausea and other symptoms. These are being

> investigated and appear to be caused by slightly elevated liver

> enzymes. It may be that I have a blockage where they reattached my

> liver ducts to my intestine. This is a risk, more common in a

> whipple, but overall not all that common. There is hope it will self

> resolve, but more tests are being done in case this is not the case.

> But I should have options to fix the problem. A TP is a big surgery

> and sometimes you have some setbacks. This is one.

>

> So that is me in a nutshell regarding pancreatitis. I am an example

> of the frequent recurrent acute variety and my trip will hopefully

> resolve positively so that I can be one of the lucky, and more and

> more are, that are returned to a near normal life via a total

> pancreatectomy/islet cell transplant.

>

> Sorry to be so verbose. Hope your day has been bright and free of

> pain.

>

> thanks,

> Bert

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