Re: Re: Adamm - SOD and ERCP--name of good endoscopist?

[Guest guest]

and Adam,

reading your posts it is almost like a light bulb came on. I have had terrible

problems lately with my stomach 'blowing up'. It is miserable. I have gained

and lost 8 lbs in just 2-3 days several times over the last few weeks. Even

when my weight drops down, my stomach is still bloated and so incredibly tender.

I had to buy different panties so they wouldn't put any pressure on my belly.

There are some days that I cannot even stand my loose pajama bottoms on my

belly. I bought more nightgowns for those days. I saw my GI doc last

Wednesday. He told me that I was obviously having 'fluid shifting' because my

diet couldn't cause the large weight fluctuations I am having. He said he

thought part of the problem was IBS, but that obviously I'm having some

pancreatic problems as well. He increased my zelnorm from 6 mg twice a day to 6

mg 3 times a day. He told me to take 3 pancrease tablets with every meal or

snack vs the 2 that I've taken for the last year. I do think that maybe the

combination of increased zelnorm and pancrease may be helping a bit, but still

things are not good. I saw my internal med doc on Friday. He did a thyroid

test, insulin test, and other blood work - don't know what all he did, I didn't

even ask, which is very unlike me, but I'm so sick of all this I really don't

even care what tests they do. I haven't heard from his nurse, but should in a

bit. However, I don't think that my thyroid or diabetes are the cause of the

problem. I suspect that it all just has to do with having both a pancreas and

liver that are not healthy and not functioning as they should. I have had a

gastric bypass so no one is able to get to my pancreas endoscopically. The last

ERCP I had was in June at Mayo Clinic and I was awake almost the whole time,

literally screaming in pain - the best you can scream with a tube down your

throat anyway! I sent my GI an e-mail telling him horrible the ERCP had been.

I had told him I was afraid they would want to do an ERCP at Mayo and he told me

not to let them unless they talked to him first. Well, the GI doc did talk to

him and he told me he thought I should let the GI at Mayo try an ERCP. I think

the doc at Mayo got a little further in the ERCP than my previous GI (my current

GI has never attempted an ERCP on me) but still could not get to my pancreas,

pancreas duct, or do the manometry test. When I saw my GI on Wednesday, we

discussed options for my treatment and he said, " Well, you sure can't have

another ERCP. " He has a really warped sense of humor, which I love, because I'm

rather warped myself. I told him he was darn right about that. I said, " The

only way I'll have another ERCP is if you have one first, with no sedation! " He

said, " Yeah, and with you guiding the scope, huh? " I told him that sounded like

great fun and that I would be glad to do that! So, unfortunately further

sphincterotomies or stents are really not an option for me. I did have two

sphincterotomies back in 2000 when the panc attacks first started. they didn't

seem to be helpful immediately but they may have been because by March 2001 my

health had improved so much that I turned down the disability retirement I had

applied for in Dec 2000, despite the fact that it was approved. I went from

March 2001 to July 2002 with no hospital admissions or ER visits for the panc

pain. However, I have more than made up for it since July 2002! I think I've

been admitted to the hospital at least 40 times since Jul 02. I know I've been

in the hospital 7 or 8 times since the end of May. I actually talked to Dr.

Lehman via e-mail a few months after the attacks started back. He told me he

would be happy to see me or work with my GI, but that since I'd had the gastric

bypass he didn't think he'd be any more successful in endoscopic diagnosis or

treatment than my other GI had been. The thing is, that I am very glad I had

the gastric bypass. It allowed me to lose 100 lbs and get rid of all the health

issues caused or worsened by obesity. I had the gastric bypass in Dec 2001 at a

time when all my doctors were telling me the panc attacks had been a fluke and

I'd never have one again!

Perhaps I need to be patient and allow my medication increases to help with the

terrible swelling of my belly!

Hope this finds everyone doing well,

W

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