Share experiences about Puestow and Pancreatitis?

Pancreatitis
#1

Hello everyone,

I went in last Wed. to have mt stent taken out. It had slipped and instead of one stricture I had two. They were unable to get either stricture opened. They tried several devices. Including a balloon, wire, etc. They put in die to see if they could track it. When it got to the strictures it disappeared, they couldn’t follow it. (I was supposed to get my 13th stent) The doctor came out and told us that they cannot do anymore stents and referred me to a surgeon.

From Wed. to Sun. I lost 9 pounds. I was pretty emotional on Monday, called the doctors office and talked to the nurse. Now I am on Ensure, Carnation instant breakfast, Darvoset, Urso Forte (my skin itches like crazy)plus some other stuff. And trying to eat so I don’t lose any more weight. The weight loss is not too bad. I weigh 136. (5’3") It was just a lot in a short period of time. When I wake up in the morning I am very light headed.

The surgeons office called and I have an appt. on Feb. 19th. I thought about contacting Dr. Sutherland, but decided to wait and see what the new doctor says.

Two years ago they were thinking I might need a Puestow. So I’m pretty sure that is where this is all going.

I would like to hear from anyone that has had a Puestow. Some information on your own experience. I know about the procedure and what it is. Just curious to know if you are doing better with it.

Keep the Faith and God Bless.
Vonie

#3

Thanks Vonnie. Ohiogirl, my stay was okay. I got really sick after the procedure, but everything has been great since. How was your procedure?

#4

Oh @vonnie,

I have not had this procedure, but girl i am praying for you. I know how depressing this all can be.

All the treatments and procedures we go through and the unknown, just hang in there and keep drinking the ensure, it normally will get ones weight up or at least maintain! please keep us posted. i pray the pain lets up and you will find comfort and happy thoughts!

God bless

#5

Hey @vonnie ,

Where did you have the stent placements? I have been having good luck at the University of Minnesota with Dr. Freeman. I go in for my fourth tomorrow. I got a bit nervous when you told me your story.

Danielle

#6

@danielle ,

I take it your stay couple months ago at MN was good?? I know you were gonna be there the same time I was having my Islet transplant. How are you doing??

#7

Danielle,

I live in Colorado so was at the University hospital in Denver. The team of doctors there are great! Please don’t let my experience frighten you. Remember - seems to be our mantra - each one of us is different in the way we can eat and the medical procedure that works best for us.

Keep the Faith and God Bless,
Vonnie

#15

Ya know this was just to cute not to pass on!!! Sorry to those who hate these things but had to do it :wink:

I also thought I would let you all know that I had lab on Thursday, and I got my “HIGHEST” count yet!!! I was so happy I asked them to re-take it, wasn’t sure if it was mine or not-lol lol lol ok enough already it was 123,000 wow is right! I guess it took the last two Win-Rho treatments and reactions to get Great results-lol…The doctor did say to keep doing what I have been doing and maybe just maybe they will stay up this time, what I have been doing is RESTING A LOT!!! I guess that is what it is going to take for me to get good results! My other doctor (family) started me on checking my sugar levels three times a day, since I passed out in best buy a few weeks ago, I am hypo diabetic, mmm also hypothyroidism image that. I am on meds. for both so hopefully this will help! Ok enough for now…Hope you all enjoy the forward!!! With Love, Barb

#16

Barb,

I have hypo thyroid for years. My blood sugar is fine. I’m curious as to how many others out there might have the same issues.

Anybody?

Vonnie

#17

Barb,

My naturopath recognized years ago that my thyroid levels were not good. They were on the low side. The test at the time measured it at 6.1, the scale was 6+. She put me on a natural thyroid pill and it has been 6.5 ever since.

In 2007 I was pretty thin. But I have been able to put back on weight. I don’t get nauseous very much so that helps. I also have pain, but I have a very high pain tolerance level, always have, so I consider my self fortunate in that regard. There are days like the last couple of weeks when the pain is a bit much even for me. I find that stressful situations intensify that pain. My biggest problem is fatigue and getting down in the dumps. I also can get really cranky.

So we just keep on keeping on. What else can we do?

Vonnie

#18

Barb,

In answer to the question about the itching. I was told that it was due to thickening of the bile. The bile has a viscosity like oil. Sometimes it gets thick. That is what was causing my itching. The medication they gave me was URSO FORTE.

Vonnie

#20

Hi Vonnie,

Thanks for the update :wink: I have had surgery on my thyroid around 10 years ago, and just recently was told I had nodules on the thyroid again. Then my family doctor finally ran a thyroid blood test and realized that my levels were 2.4 even the lab that ran it put comments on the report
about “is the patient on thyroid medication” nope I wasn’t but I am now (synthyroid 0.5mg) I have lost about 15 pounds in a month, we will see what the 2nd month does. Are you on synthyroid? or something else? The surgeons won’t do surgery to take the nodules out, as I am high risk :frowning: (ITP) it sucks! but anyway I read your post earlier about Gerd and was wondering about the itching you have, this is something I have been fighting for over a year, I take benedryl 50mg. but that doesn’t always do the job!

My oncologist seems to think it’s cause from tapikeie (blood spots all over my body) ok covered in them-lol I was wondering if you could email me the medication you take for this? I bet your really thin with CP and hypo thyroid ism-lol As we all know we gotta watch what we put in our mouths-lol As this progress’s there are so many things I can’t eat anymore makes me mad-grrrrrrrrr oh well this is life now, and gotta get use to it I guess :frowning: Ok it is late, so I am heading off to bed, again thank you so much for the response :wink: and please let me know what you take ok…Send you all my thoughts and prayers…

Big Hugs :wink:
Barb

#21

Thank you so much Vonnie, your quick response is greatly appreciated :wink: Also I replied to Emma’s email earlier, and ask if anyone knew who put out a letter about Talking to our Family about CP and how it affects our daily lives, do you by chance know who wrote that? It came out on a post during “CarePlace” web site and post. It was the best letter ever! I can’t find mine, I think when I changed Internet company’s I lost everything I had saved ;( darn it! Anyway if you know, or maybe it was you? lol who put it out would you please let them know I would like to have it again. I am so tiered not much zzzzz’s last night so I will check back tomorrow ok…Sending you my thoughts and prayers, Big Hugs-Barb :wink:

#22

Wow, really 6.5??? Mine must be very LOW at 2.6 and now at 1.6 holey cow…I am just shocked! Anyway I to get depressed and ticked off for having this terrible illness! I am on Effexor 225mg. per day for depression seems to help most of the time, but like you said what do ya do “deal with it” my sister gets so mad at me for being on a anti-depressant, but to bad she don’t have to deal with any of this! that’s what I say lol. Anyway thanks so much for the post back…Sending you Big Hugs!!! Barb :wink:

#23

Barb, I would have to go look at my old blood tests. I used the number 6.1 as an example. Call your doctor and ask for a copy of your last blood test. That will tell you the count and the “normal” range.

The article that you asked about - I did send the Mayo Clinic Newsletter that had a good article on pancreatitis that explained the whole disease. I suggested that we keep it to give to our friends and relatives. If that is the one let me know. I may still have it around here somewhere and might be able to send it again.

Also, I believe that the National Pancreas Foundation may have posted something also. You might check with them.

Vonnie

#24

i think the longer cp progresses the more fatigue we fight, it seems to be i am so much more tired now then 6 months ago, anyone else notice that ?

#25

Oh Yes, I have noticed that myself. Grrrrrrrrrr makes me mad! I sent a post out last winter about the weather change, I really start hurting when ever there is a front moving in, as well as getting more fatigue. Big Hugs and Prayers to ALL…Mrs. Barb/Barb

#26

I really had to forward this one, 3 cents is 3 cents!!! You will see what I mean about the 3 cents!
Please forward to all you know
Thank You!!!
Barb :wink:

#27

Thanks Teresa! Hope you had a wonderful Mothers Day! Mine was so darn busy, with my b-day the same day! Run to mom and dads, then to my moms, then Sharon and Shane come over that was nice! Ok better go!

I also wanted to say Thank You ALL for the Birthday Cards, and Calls…Made my day :wink:
Love, Barb Oh Pam I sent this to you twice, let me know if you get it ok…

#28

Hi mikesgirl, how are you? Me ok, haven’t been on because I have been so darn sick again :frowning:
anyway I got the letter for Emma, which by the way Jewels found it for me :wink: Ok just wanted to send this to you
I know that I got the letter from Volup from the Mayo Clinic it it Awesome Just Like HER!!! Hi Volup hope your doing good…Ok have a great day and hope it’s a pain free one…With all my thoughts and prayers, Big Hugs MrsBarb/Barb

#29

Had to do it…Thanks Lisa :wink: