Experience with Stents?

Pancreatitis
#1

First I would like to thank all of you for your posts I read them all the time and it is very helpful.

Anyway in mid December i had a stent put in wh@ Jefferson which was supposed to last 10 wks. Well the wk of 1/21 I started vomiting etc…went to the ER and stayed in the hospital (local) for 2 days. When i got home i was not better just was not vomiting; then Sunday 1/27 started vomiting bile w/lots of pain (very bad attack).

Spoke w/ GI and immediately rushed to Jefferson where i spent 4 days. They said the stent moved and caused an infection and my levels went up into the 1000’s. Just looking for anybody’s experience with the Stents; was this just a fluke or with this happen all the time w/ the stents. When i first had the stent put in i did well managed to put on 10lbs. and was feeling better. Any advise…?

Thanks,
Lisa W.

#2

Hi, Lisa… From the the other Lisa (aka Cager 21)–

I had a stent put in that was supposed to be in for a while and then taken out, but within days I wa back to vomiting bile, my amylae/lipase were in the 3000’s and when I was urgently readmitted and almost blacked out regardless of how much IV pain meds they pushed, they rushed me back into emergency surgery, saying the stent had occluded and had to come out right away b/c everything was backing up into my pancreas and liver. Since then, they’ve tried balloons, Botox, and too many ERCP/Sphincterotomies-- but decided they wouldn’t try another stent.

Others have had both some relief and other problems, but I sure wouldn’t want another one. When it occluded (blocked up) it was one of the worst panc pains I can remember-- but this is just my experience.

Best of luck and I really hope you’re feeling better soon.

Love and hugs,

Lisa

#3

Lisa,

Thanks for telling me your experience…if this stent does not work again i do not think i will have another one; because like you said that was the worst pain i have ever had.

About you… why are you detoxing from your pain meds? Are you feeling better from the CP? I am recovering Alcholic (that is not what caused by CP i have been sober for almost 5yrs). So I deal w/ alot of mixed feelings for being on pain meds. Anyway for detoxing maybe some AA literature will hep for the mental support (not at all saying you are and addict) just because maybe it can shed some light ONE DAY AT A TIME, THIS TOO SHALL PASS. Also some natural ways of getting off the narcotics.

I can not wait for the day to be pain med free! But i will not be looking forward to the detox part; when that time comes i know i will definitely use my support of my sponsor and meetins etc…

Good Luck

#4

Hi Lisa W.,

I do hope you are feeling better and am so sorry you had a bad experience with the stents. My experiences have varied. I had one that was blocked off for over 10 weeks, another one that “fell out” s few days after it was inserted and another one that did what it was supposed to do - opened the duct. So, I too am cautious about having anymore. I have so much scarring from all of the previous procedures that I am unsure if they would even attempt to place another stent. (Oh, I never gained any weight, just lost about 2-3 pounds per day.) Hope you are having a better day. Take care,

Jamie

#5

Hi Lisa W,
You must live somewhere in Phila–to go to Jefferson? We live in the suburbs of phila and my daughter travels to Johns Hopkins for her procedures-her stents were 50/50------in the beginning they worked, but eventually didn’t do anything. We have been told that the stents they use now are much better and shouldn’t move and can stay in longer. She had the Puestow done in 06 due to continual duct blockage so no more stents for her. They do cause alot of scarring and she never had one put in or taken out that didn’t cause an attack.
Who is your dr. at Jefferson? My brother had a kidney transplant done there-it is a great hospital. Good luck hope you are doing well.
Terri

#6

Hi Terri,

We live in the suburbs of Philly, Wayne, Strafford. We are very close to Valley Forge. Where do you live? It’s nice to know someone from Care Place lives closer. Lisa.W also lives close to Philly, we came to know that recently. I had my Symphecterectomy and Peustow surgery at Jefforson’s Hospital. Dr. Kowalski did the Symph… and Peustow by Dr. Mrs. Barbot. We wanted to get second opinion after hanging on long with Jeffersons and so went to Hospital of University of Pennsylvania, PENN hospital and when we found good Pancreatic surgeon, he does other surgeries too but has specialization in the Pancreatic surgery I think. We loved that surgeon and stayed with them and had Whipple surgery at PENN hospital in Philly.

It’s a small world after all. I’m so excited when I read your note to Lisa W and said you live in Philly suburbs.

I’m so glad your daughter is doing so much better and I hope it continues like that and hopefully it doesn’t give her much trouble again.By the way are you in touch with Pippy 440 and do you know what’s happening with them.

I tried to call once I didn’t get any response. I have to try again.

Lots of love and hugs,
Durga.

#7

Terri,

glad to hear our daugther is doing better. Yes I live in the Lehigh Valley area and My GI Doc is Kowalski…i have mixed feelings about him. He does not have a good bed side manner and i think with this disease it is so frustrating that we need a Doc with sympathy. If this stent moves again I do not think I will get another one. Jeff is a good hospital i was very impressed with the amount of doctors that took an interest in my case. It would be great if we could meet someday w/ Durga since she also lives in the area and she too also had Dr. Kowalski as a Doctor; but know goes to Penn (i think).

All of pain free day.
Lisa W.

#8

Hi Lisa and Durga,
We live in Montgomery County—about 25 miles from Jefferson. I’ve run the Broad Street run many times and it takes you right by the hosp.
My daughter started getting full blown attacks about 12 yrs old and at that time no one would touch her except for pain management and local testing. That is why we went to Hopkins-we had a dr. there who would work on children(he is now the chief of gastro there and still sees her) He does her ERCPs but had an oncologist do the Puestow on her.
There still is no dr at our local hospital that will do ERCPs-isn’t that crazy. They do endoscopies but won’t go near the pancreas. They feel only specialists should do that-but I thought that’s what they were. But they do keep her comfortable and help her through episodes, so I shouldn’t complain. It would be nice to get together -perhaps this summer we could connect.
Stay well and strong-
Terri

#9

Durga,
Sorrry, I forgot to mention I have not heard from Pippy-I hope her daughter and she are doing better. If you hear from her please let me know-They were really going through a very rough time.
Terri

#10

Terri,

This summer would be great; i will look forward to it.

Lisa W.