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Pancreatitis
#1

Hi all!

I just found this forum. I have been living with (what they’re now calling) “recurrent acute pancreatitis”, idiopathic, for 14 years. That’s what was diagnosed after a couple of attacks, and then somehow it became “chronic”, but after just having EUS, I’m back to recurrent acute. I’ve just started back to work full-time after another several months out on TPN and such. At first, I was only getting sick about every 2-3 years, but I’m starting to average about one serious episode a year for the past 5 years (2-3 months each). Does anyone else have this? What are you doing for it?

I already take enzymes to help reduce the pancreas work-load, and I almost always have some sort of central line placed (currently a Hickman). On my first day back at work I found out I was losing my job (chalk up the fourth job lost due to this), and I’m not sure if I should seriously be considering SSDI…? Also, I did have an initial consult at Johns Hopkins new pancreatitis center, and it’s possible that they might offer me a pancreatectomy with islet cell auto-transplant. Has anyone else looked into this, or done it, or known someone who has? Did it help?

Thanks for any thoughts…
Nicole

#2

Nicole,

Welcome to CarePlace. There have been a few people on this forum that have had the procedure that you are talking about. One of our members is in the hospital recovering from that surgery right now.

I am sure that you will be getting all kinds of information from our members. I personally have not had that procedure.

I had my first attack in early 90’s. Didn’t have another one until 2001. The last one started in Spring 2006. I just got over it in Jan 2008.

There are several people that can walk you through the Social Security disability, if you decide to go that route. Anyse is somewhat of an expert on that subject. As are some others on this forum.

Once again, welcome.

Keep the Faith and God Bless,
Vonnie

#3

Thank you so much! I was really excited when I found this site because it seems like the members are involved and supportive. So, do you have recurrent or chronic, do you know? What are the doc’s recommending for you to do?

My last attack (that I also just got over) lasted 10 months – totally sucked, so I can imagine your situation. Thank you for sharing with me.

Cheers,
Nicole

#4

Nicole,

Right now I am stable. I do take Creon (digestive enzymes), Urso Forte (this helps to dilute the bile), protonix (acid reflux), plus stuff for allergies, vitamins etc. Oh yes and miralax for constipation. I have meds for IBS when I need them and meds for pain, which I very, very seldom take (even through my year of procedures I didn’t take much)

I spent from Nov. 2006 through Jan 2008 in and out of the hospital for procedures to fix the pancreatic duct. It was closed up so they had to put in stents to open it. I went in every 4 - 6 weeks to take the old one out and put the new one in. Fortunately I have two good doctors that knew what they were doing. I only had to stay in the hospital twice. One overnight because the procedure was so late and I wasn’t coming out of the anesthesia real fast. The second time I was dehydrated and needed another stent.

Fortunately I don’t work so do not have to worry about my job. That would definitely be an added burden.

I had an acute attack in 2001 and was in the hospital for 3 weeks. The doctor said that I was within a month of losing my pancreas. After I got over that (it took a good 6 months to recoup at home, I lost a lot of weight, 25 lbs in 3 weeks).

Then nothing until 2006. But it came back with a bang. I know that the attacks eventually get closer together. It will be interesting to see how long before the next round. I lost a lot of weight with this one also.

I have been officially diagnosed with idiopathic chronic pancreatitis. Although I believe my cp is stress related. At the time of both attacks I was going through some very stressful emotional times.

Anyway I have gained back weight (I’m not too sure I’m glad about that, but know I need to) and I feel really good most days. My biggest problem is that I was down for so long that now that I am trying to get some exercise, my muscles cramp and hurt like crazy. I keep a bottle of gatoraide and a carton of COCO water in the fridge. They both help a lot. They also help with the cp pain.

That is probably more information that you care to know, but we all learn from each other. The COCO water information came from this forum. Durga is the one that put us on to that. It really works.

Pray this finds you well, in good spirits and pain free.

Keep the faith and God Bless,

Vonnie

#5

It’s really not TMI, since I think we do all learn from each other, like you said. Plus, it helps me to know that I’m not the only one taking all of these drugs and dealing with the same stuff.

I am glad to hear that you are ok for now (I know exactly how you feel about gaining back the lost weight!). I have been asking for a port for the last 2 central lines, but there seems to be some huge prejudice against getting one unless you are having chemo (at least here in Baltimore). So, I’m dealing with the Hickman and the limitations on summer clothing and showers and the like.

I hope that you will continue to do well. May your next episode be a long way away…

Cheers!

#6

Hi Nicole,
My daughter has hereditary CP, we live in Pa. but only go to Hopkins. Her specialist there is Dr. Tony Kalloo. I would love to chat with you about the new center(never been there) and your thoughts on the islet surgery. My daughter had the Puestow done in 06 and it has helped her tremendously, but yet still has pain everyday. Please let me know if you would like to talk.
Terri

#7

Hi Terri,

Sorry to be so long getting back to you, but I didn’t get online last night. I think the Hopkins center is going to be very helpful for people. It’s not actually a physical place, but instead a group of docs that are collaborating to find the best individualized treatments for people. I think you can make an appointment by calling Dr Sanjay Jagganath at 410-955-4166. I have also seen Tony Kalloo for ERCPs, although he is not my primary GI guy.

I have been researching the islet surgery for several months now (at the urging of many friends), and I still don’t totally know what to think. When you have the 1st appointment at the center, you meet with Jagganath, and other docs including a surgeon, so that they can all evaluate the situation and come up with recommendations. In my case, they first wanted to evaluate for small cell disease with EUS, which was negative for that…which is why I am still at the diagnosis stage. In a situation like your daughter’s, the cause is already known, so I think they would vealuate for surgery based on the damage to the pancreas. The one thing that I have been told by several GI docs (and surgeons) is that up to 30% of the people who have this surgery still have some pain – they don’t know why. I think that’s important to consider since it is such a major surgery and all.

If your daughter has hereditary pancreatitis, who else in your family has it? It doesn’t sound like you do. We are pretty sure that mine is not hereditary, because no one directly above me in the tree seems to have had pancreatitis, but there is definitely pancreatic cancer. I’ve never had an opportunity to ask anyone who knows about HP before…?

Nicole

#8

Hi Nicole,
Thanks for getting back-my husband and all on his side have the genetic cp. We have had many rough years with this, at times I have had both in the hospital at the same time.
Unfortunately though it seems to get worse with each generation-my husband only had his gall bladder removed, yet my daughter had major duct problems. And we have learned that no two people(family or not) experience the same pancreatitis.
I have not heard too many good things long term for the islet cell surgery-the surgeon who did my daughter’s Puestow would not even consider it for her. He feels there is not enough research yet on the long term effects and did not want to subject her to what could be more pain and suffering in a few years. I hope it has helped people, but in our case, at this point, I cannot see experimenting for her. She is still so young and we hope that the pancreatitis will just calm down eventually. As I said before, the surgery she did have has helped her tremendously. But it seems the pain takes alot longer to go away.
Dr. Kalloo is wonderful with her and if he were to recommend another route, we would definetly consider it, but he also feels to give it more time. He has been seeing her since she was 12 and we trust him so much. How do you feel about him? Are you getting any answers?
Again, let me know if you would like to talk-I can send you my phone #-it’s nice to talk to someone who sees the same drs. or at least the same hospital.
I hope you do well and this is just a blip for you, never to re-occur. Or as I always pray for -the magic pill will be discovered that takes that damn pain away.
Terri

#9

Welcome to this group…it is a wonderful group to be a part of (except for the darned pancreatitis part). There are many of us with recurrent acute pancreatitis. That has been my diagnosis. I started out with pancreatitis due to gallstones and so my gallbladder was removed and I kept having attacks for about 6 more years. I had a Whipple resection in Nov. '07 at Mayo’s in MN and (knock on wood) have not had serious pain since then. This is a good place to ask questions and learn. Betsy

#10

I too am new to this website forum. It is great to have others to “talk to” and learn from. I have AP. The pain comes and goes. It seems worse in the morning. Do you find that as well? I am confused about the following and maybe someone out there can clarify for me: I am 58,female, and the doctors just discovered that I was born with an abnormal Pancreas. Seems I have two openings instead of one. Surgery does not seem to be an option and I am not clear as to why not to fix the problem. Like most of us, it came on suddenly and I have been experiencing the pain,highs and lows off and on since the onset (December 07). My gastro told me there is no special diet but my online research seems to indicate a low fat diet. Input,please! Hey, after my attack, I found I craved junk food carbs like Cheetos. Anyone else have this experience? Also, looking for a specialist in South Florida. I will look into the Johns-Hopkins Pancreas Center. Thanks for posting that information. I wish everyone a pain free day… I’m having a painful one so liquids for me today.
Thanks,
Harslp

#11

harslp

I was told by my dietician that a low fat and when I am having pain, a low protein diet is the best along with high carbs (the Atkins special as I call it). Also hydration is very important with pancreatitis patients. We require more than most so keep drinking fluids, avoiding caffeine and of course, alcohol. While most require about 8 glasses of water a day, we require more like 14 or 15, depending on your weight. I get IV hydration every couple of months as well as I can not keep enough hydration going. Like Anyse, I sort of have a standing order for hydration. I can go to my GI (who has an infusion center) or to the ER where I work to get a couple litres of fluid when necessary.

Good luck and prayers for pain free days and nights.

Teresa

#12

Thank you so much for your reply. My doctor told me that when the pain is
bad to go on liquids. I did that yesterday but it hasn’t helped very much.
As am going to consult another doctor this week. I am going to take your
advise and try high carbs. My body loves carbs anyway :)… I didn’t
realize that we have to hydrate to the extent you have described. I will
start drinking a lot more. By the way, you mentioned “Atkins”- isn’t that
diet a high fat diet? So, I come to: What do YOU eat? Sorry to ask so many
questions, I’ve just “begun” on this journey and it seems I have leaped from
AP to CP as I am in pain in some form most of the time. Mornings are the
worst. Do you find that as well? I have been told that Johns Hopkins has a
new center specializing in pancreas disorders. I am wondering if it’s worth
the trip. You obviously work in a hospital so you are probably up on all the

Treatments and new findings.
I so appreciate your responding and suggestions. I am very grateful.
I am wishing you a pain free day as well.
You are in my prayers as well

Love to you,
Jackie

#13

I was being silly when I said the Atkins special. Pancreatic diets are just the opposite of the Atkins diet. My doc is still trying to get me to eat anything. I have not eaten a true meal since around Christmas. I take in as many Ensure shakes as I can (usually 2 a day) and attempt to eat things such as pasta and bread. Although, due to my gastroparesis and Nissen, bread is not very good for me, or so my surgeon says. I would stay with pasta if you can. That seems to be the least of all evils at this point. I can only take in about a cup or so of any sort of solids at this point. I was on TPN for a while but asked for the line to be removed because I coach baseball and the season was beginning. Just trial and error is what my doc suggests but stay away from fat. Veges are hard to digest as well, especially things like lettuce and broccoli. Fruit seems to be ok, especially citrus. It will also keep you more hydrated.

Good luck and hope things work out for you. It is a long journey with no end but you can stop along the way and smell roses because they are there!

Teresa

#14

Thank you for our input. I am gullable- see I believed you concerning
Atkins. I find liquids,Edy’s fruitpops, soups, etc. easy to get down and
live with. Pasta seems to make me fat as do breads. You’re right- it’s
trial and error. Fortunately, I can eat more than a cup of foods. You must
really have a battle to stay nourished! I find I have to push myself to do
things. Fortunately, I am on summer vacation from school so I have time to
get myself together each morning. I understand looking forward to coaching.
I look forward to working w/ my high school students each day during the
year. They really make it all worthwhile.
You are correct about smelling the roses… I try.

14 years ago, I overcame some life-threatening health problems caused by a
medication. The doctors had no hope- gave me a week to live- but I just
prayed it through. I am still here! :slight_smile: I guess I was so surprised and
unprepared for this turn of events but I do know it could be so much worse!
So, who is prepared for this? I have to laugh out loud. It sounds like a
comedy routine.

Thank you so much for your e-mails. You are a blessing-

Wishing you a wonderful, happy day!
Jackie

#15

Hi,
I just wanted to say thank you to everyone that is sharing all their information. It is so helpful to read what everyone is going through and realize that I’m not alone. Thank you.

#16

Hi Sossa, I wanted to welcome you to CarePlace it’s a wonderful site, as you have probably learned already :slight_smile: I joined the NPA and get monthly emails on tips and ways to ease the pain, I also belong to the Mayo Clinic news letter and get that monthly as well. These two sites alone have helped me tremendously. Maybe this is something you should consider doing, wonderful recipe’s and suggestions for all!!! I sure hope that you can get the proper care. I have found that for me it’s trail and error when you eat or drink something that doesn’t settle you don’t do it again! I take 15-20 enzymes daily regardless how I feel, sometimes it’s only a cracker, or toast but this has really cut down on my daily pain, don’t get me wrong I still have Daily Pain and take percocet and tramadol, and or hydrocodein I have daily nausea and take feregon for that. Yes we all get tired of taking meds. all the time, but if you follow a schedule (learned the hard way) our bodies get the same amount of food and meds. daily it seems to take the edge off…Ok hon better sign off for now, but always know we here at careplace always have a smile or hug and prayers, so feel welcome to put post out/emails until you find your answers someone somewhere will have an answer :slight_smile: Ok Big Big Hugs and Thoughts/prayers to you…With Love, Mrs Barb/aka Barb :slight_smile: