Stenting/Spincterotomies

[Guest guest]

Hello Everyone

I have been reading alot of questions about stenting lately. Just thought I

would let you know my experience with stenting. I have been lucky in that my MDS

have been able to stop the madness with my pancreas. No more daily vomiting and

not being able to eat due to being in pain. I can eat everything again and I

have zero pain now. My journey has been a long one and I hope I can save someone

such a long journey of being in pain and being so sick all the time. I had my

gallbladder taken out several years prior to my first attack due to numerous

infections. My CP started suddenly, one day I just got this horrible pain in

the pit of my stomach and it was so bad it made me nauseous instantly. That is

when the fun began. Of course I went to my MD and was tried on prevacid, diet

changes etc... nothing stopped it. Then was sent to a GI, after tons and tons of

testing, nothing wrong, I am a drug seeker. So I moved on and went to a big

center instead of local. More experience and they

see more. They discovered Gastroparesis but now we needed to know why? I don't

have diabetes, the usual cause for gastroparesis so why? After 6 months I was

told they just don't know whats wrong. I was told I just needed to learn how to

live like this and new meds are coming out every day. They believed it was all

the gastroparesis. I was ticked to put it mildly. I told him point blank that

was unacceptable. I was a very healthy person and then all of a sudden, wham-mo.

And because you can't find it, I just have to live like this. No, not

acceptable. Please help me and keep looking to find out what is wrong. I want my

life back. I was sent to Kansas University Medical Center to be evaluated for a

gastric pacemaker, to wake my stomach back up. My whole system was asleep. From

esophagus on thru the colon. They also wanted to know the why of the

gastroparesis. After 10 days of heavy testing they found it, SOD. They did an

ERC and spincterotomy and it caused the exact pain to

flair. I was so happy they found it, finally. The pain stopped quickly, yes...

and I could finally eat again. 6 months later it was back. Back to Kansas I

went. In they went again and the spinchterotomy was open. They went further.

Bingo....pancreas divism and very narrowed pancreatic duct. They couldn't get

in. They sent me to a pancreas specialist in Milwaukee. They confirmed what

Kansas found but could do nothing for me. I had to live with it. Fired them. I

basically gave up for about 6 months but I was sooo sick again. My Chicago MD

was very concerned with the weight loss and not eating. I had to do what I had

to do to keep from doubling over and constantly vomiting from the pain. So I

just wouldn't eat. So I was sent to another pancreas specialist in Indianapolis.

He said he would try and help me. He recut the spinchter via ERCP, (not open

enough) and placed a stent in my pancreatic duct. I got a wicked case of

pancreatitis from it. But once it passed, about 2 weeks, the pain

stopped and I could eat again. But I still had to be careful with what I ate.

Certain things caused me to get nauseas or cause slight flairs. Like steak,

salads, vegetables. Anything that my stomach had to really process. My

gastroparesis still bothered me. I was just happy to be able to eat food again.

I was so unhealthy before from not eating. Then about a year later, it came back

with a vengeance. Doubled over, on pain meds and throwing up whenever I ate

anything, just like before. Eventually even liquids wouldn't stay down.

Surgery was scheduled to do a spincteroplasty. They were going to open the

outlet of the pancreas so it would drain better. This surgery was very painful

but after about 6 weeks I was better. I could eat everything again, even steak.

My gastroparesis had stopped and my system had woken back up. I was back. After

about 1-1/2 years of glory, it returned. When they got in via ERCP they found

the spincteroplasty was wide open but the pancreatic duct was very

narrowed. We decided to do stenting. Double stents were placed and then

pulled after 8 weeks. Again, it gave me my life back and I was pain free and

could eat again. Last year (January 04) I had progressive stenting done. First

they put one in, this caused a major flair. 8 weeks later, 2 stents, no flair. 8

weeks later, 3 stents-no flair. 8 weeks later all were pulled. I am eating

everything, even steak and am in zero pain again. My MD said he was able to

stretch the ducts nicely to hopefully give me long term relief. We are keeping

our fingers crossed. But in the meantime I have, I hope, discovered the why of

my pancreas duct closings. I found out I have Hep C and am now on treatment. I

got it from a blood transfusion during open heart surgery. So I am hoping once

the inflammation dies down, since it affects all your organs,

that my duct will never swell shut again.

So my personal opinion is that stenting can give you your life back by

stopping the pain and allow you to eat food again. But it can cause flairs and

it can close back down again in the future. I am the type of person who will do

whatever it takes to get better, no matter what. I wish everyone pain free days

ahead and keep up the fight. You are worth it. Hang in there everyone.

Love,

w

Wisconsin

P.S. My CP has never, ever showed up on CT scans, MRI's, MRCP's, blood work

etc.... Never. The only way they ever know whats up is by going in via ERCP.

They always have found that odd.

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