Re: to Jen from Kimber

[Guest guest]

Jen,

I've had a surgery to try and correct the pancreas divisum. I can't

remember the exact name that they called it. What they did is surgically

go in the abdomen through the abdominal wall and find the pancreas and

then widen the pancreatic ducts (mine are two parallel ducts, not the

normal Y-shaped duct, and one never opened at birth. They are also too

small and too close together). They also opened up the duct that had

never opened and then they took out the gallbladder as an added

precaution. There was no sign that the gallbladder caused the problems,

but in some instances, patients have gotten better if they removed it,

so they took mine too. This surgery allowed me to have about 4-5years

without an acute attack, but it had already become chronic, so I

eventually started having attacks again.

I also take daily enzymes and for a while they stopped the pain. Now I

just take them for digestion reasons. The doctors tried Sandostatin to

see if that helped stop the pain, but it didn't work for me. It does

work for some people.

They didn't look for the divisum until I had my third unexplained

(idiopathic) pancreatitc attack. Evidently, that's standard procedure

out here to check for pancreatic divisum after the third idiopathic

pancreatitis attack. They weren't sure it was the cause at first

because I wasn't showing any evidence that that the divisum was causing

problems. Eventually they decided it was the cause as there were never

able to find any other problem with the pancreas.

They attempted to do stenting on me, but my ducts were so small that

they couldn't even get the smallest stent in. That was in 1993 though

and they have smaller stents now. They decided not to retry stents as my

disease has progressed too far for that to really help.

I also haven't had any other surgeries such as the Whipple, the Puestow

or the TP/ICT as the surgeon doesn't think that I'm sick enough to

warrant any of them. I see the surgeon every 6 months to re-evaluate my

condition. I haven't pushed it because I know of too many cases where

the surgery not only didn't work but made the person worse (mainly for

the Whipple and the Puestow) and I'm not willing to take that chance

yet. Also, I'm a serious risk for any surgery because I'm on blood

thinners due to an unrelated health problem.

I can certainly see why you would want too try all possible routes for

help. I also understand your fear of having children. I'm in the same

boat myself. I also wanted children and now I don't know if it would be

a good decision to have any or not at this point. I'm not only at

end-stage chronic pancreatitis, but I'm also on blood thinners for the

rest of my life due to a genetic blood clotting disorder. Makes me

wish I had decided to have them when I was in my twenties. I was

reasonably healthy enough then. Actually, as for the narcotic, I know

that some women in the group have had children while dealing with

pancreatitis and they were still able to take their pain medications (I

don't know which ones they were on). They were just considered serious

risk pregnancies and were watched carefully and spent a few months in

the hospital near the end of their pregnancies. If I were you, I'd

discuss this with your GI AND your OB/GYN. The OB/GYN may be able to

answer some of your questions regarding taking pain meds during

pregnancy and if pancreatitis would have any long term effects with

pregnancy.

I hope I've been able to answer some of your questions.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

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

physician or health care professional.