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Scruffy
New Member


Date Joined Nov 2008
Total Posts : 3
   Posted 11/8/2008 12:28 AM (GMT -7)   
Hi I am new hear, my daughter has chronic pancreatis.  She had surgery 1 1/2 years ago she last 1/2 her pancreatis, her spleen, and gall bladder, due to gall stones.  She was doing ok for 9 months, but now she is back to hurting all the time again.  She is now home bound cause she misses to much school from being sick, or in the hospital.
 
Has anyone else dealt with this?
 
Thanks

ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 11/8/2008 11:50 AM (GMT -7)   
Scruffy:

Welcome to the forum. I am so sorry to hear about your daughter's pain. I am thankful she has you to advocate for her.

I am well familiar with the role of being the primary care-giver for a loved one with pancreatitis. It is a very nasty disease - and painful. My father's first bout with it was actually necrotizing pancreatitis, which is the super-scary, almost always lethal version of the disease. Thankfully, despite experiencing nearly every "fatal complication" (this according to the doctors) he survived, but like your daughter there were multiple surgeries and removal of the gall bladder, spleen, and 90% of the pancreas. He has since developed chronic pancreatitis as well (thankfully NOT the necrotizing kind!).

Although my father's case did not begin with gall stones, doctors initially thought that might be part of the problem when he began to have relapses. I thought that was really weird because his gallbladder had been removed years ago. But the doctors have told us that apparently our bodies retain "residual cells" that could still form gall stones and create a blockage despite the fact that the gall bladder is gone. For my father, this wasn't the case, but you might ask your daughter's docs to check it out.

I think the most important thing I would encourage you to do is to search as far and wide as you have to for really good docs in the GI field. And also excellent surgeons. We were so blessed with my father that we sort of happened to be assigned to the right folks when he got sick the first time. His GI group are top notch and the surgeon they called in is also at the top of his field. Over and over again we've heard how most wouldn't have even attempted the surgeries he did when my father was so sick. Since then, the GI group who has treated him has worked hard to be sure that his pain is well managed while they work to push the pancreatitis into remission.

Ask your daughter's docs about Sandostatin. It is a med that they give by injection. I'm not sure exactly how it works, but it has helped reduce my father's enzyme levels. I would also encourage you to have a serious discussion with a dietician. Much of the pain from pancreatitis has to do with how hard the digestive system has to work. Diets that are low in fat (40-50 grams per day) are easier on the pancreas. I assume your daughter is diabetic now too - does she take insulin, or is her blood sugar controlled by oral medications? Keeping a good balance of low fat and good sugars/carbs is difficult. It helped us to spend some time with the dietician and really plan a good diet.

I hope you are able to find some relief for your daughter. I hope this was helpful somehow.
Ry

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/8/2008 1:09 PM (GMT -7)   
Scruffy,
I'm so sorry you're going through this with your child. But I am glad that Ryand was able to provide you with some information, as I know nothing about this. I can vouch for the fact Ryand is a great member here, and very thoughtful and wouldn't have given information she didn't know to be accurate.

I would also second the recommendation to find the best doctors - I'm sure you're trying to - and if necessary search regionally and nationally for specialists who could help your child. Sometimes there are clinical trials one could participate in if eligible, and in those cases a lot of the expenses may be paid for by the study.

I wish you and your daughter all the best.

PaLady

Scruffy
New Member


Date Joined Nov 2008
Total Posts : 3
   Posted 11/8/2008 4:35 PM (GMT -7)   

Thanks for the infor.  My daughter is 16 now and has been dealing with this since she was 7. She was 14 1/2 when sugery came around.  She was on Sandostatin shots once a month for about 2 years before surgery.  They stop them afterwards.  She is not diabetic yet, we luck out on that.  But she is check every so often.  They figure by the time she is in her mid 20's if not sooner she will be. They just put her back on Creon 10 which is a enzyme medicine.  It is all suppose to trick the pancrease so it dosen't produce anymore but it dosen't work all the time. She has the top GI and Cardinal Glennon, and they bring in the top GI for SLU.  I live close to ST. Louis.  They say my daughter is unique.  Her is call idopatic.  No known cause for it to be happening.

I just feel so sorry for her, she wants to be a normal teenager, but it is hard for her because most of the time she don't feel ok. When she eats anymore it hurts.  I guess I need to check with the GI docs to see if she needs to be put back on the shots.

Food wise, we try but she wants to eat what she wants to eat. So I know that is part of the problem for now.

Before her surgery she had lost alot of weight. After she got doing better afterwards she have started to put weight on. Now the docs want her to excersie at least 30 minutes a day to help with weight, but also becoming diabetic sooner.

Does your dad live on pain meds. That seem to be the only thing, to help with the pain.

I am sorry PAlady your dad is going through this.  But it is nice to find someone else that knows what I going through.  I feel helpless most of the time.

 


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 11/8/2008 7:50 PM (GMT -7)   
Scruffy:

My father takes Creon as well. I don't mean to be contrary here, but it sounds as though you have been given a completely different explanation of what Creon does from what we were told. It makes me wonder how she is taking it and if that might be contributing to her pain. Creon is actually a synthetic enzyme that is designed to aid the digestion of food. Our pancreas produces enzymes (lipase protease, and amylase) that break down the food we eat. When some or all of the pancreas has been removed, the body needs supplemental enzymes in order to be able to digest food. That's what Creon does. It should be taken only at meal times.

My father's pancreatitis has been classified as idiopathic, because they have been unable to identify a cause. Gallstones are a common cause of pancreatitis, so it surprises me to hear that your doctors call her case idiopathic.

OK, what I'm about to say here might sound a little harsh, and I really don't mean it that way, so I hope you will please believe that I just want to help if I can. I feel like I need to be pretty direct, and I don't want you to think I'm trying to be mean. OK? :-) Here's the thing... You said that you try with food but "she wants to eat what she wants to eat." I think that's where you need to start, Scruffy. As you would see if you perused the pages of this forum, part of learning to live with a chronic condition is coming to terms with the losses that are part of the deal.

PaLady and I both have chronic back pain. If you read some of our posts, you would see that we have had to make very big changes in our lives as a result of the injuries we have. And I think I can speak for both of us when I say that we don't like it. We really hate it. We wish it were different. But it IS. So we have adjusted. I know, for example, that I can't ever make plans with friends to go out for dinner in the evening anymore. I used to love to do that. Really loved it. But I am trying to work again, and now I am in so much pain and so very tired at the end of the day that it is impossible for me to bear sitting in a restaurant after work. And you know what? Most of my friends have disappeared. And it stinks. But it's something I know I just can't do. Because that's part of my chronic pain condition.

I am not saying all of this to discourage you or to say that your daughter's friends will desert her. What I'm saying is this: Your daughter has chronic pancreatitis, and people with chronic pancreatitis just can't eat whatever they want. They just can't. It stinks. But it IS. I know you feel sorry for her, and you want her to be happy, and certainly it is very hard to deny her the little joys of even having a snack she likes when she wants it. But you must. And you need to help her understand that if she truly wants to control this disease and this pain that she has to make some choices that aren't much fun. Like changing her diet.

You asked if my father has pain medicine. He does get IV pain meds when he's in the hospital, and for a while after a bad flare (hospitalization) his doctors will prescribe a small amount of oral pain medicine for him. But they have also told us that oral pain medications actually cause greater problems for the GI system, so as soon as possible they like him to get off of them. There are people here who have Chron's or IBS who cannot take narcotic pain meds for the same reason. If he takes too much of them his pain actually gets worse. The best control of this pain is control of the diet - which is to say control of the CAUSE of the pain...irritation of the GI system.

I do so much wish you and your daughter the best. I truly pray she will find relief. I hope you have not been offended by my comments here, but I truly believe that this is important. Your doctors would not have recommended it lightly.

All the best...
Ry

btw... Thanks, PaLady, for your encouragement and support. You are so sweet!

Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 11/8/2008 8:44 PM (GMT -7)   
Scruffy, I want to welcome you to the forum and I am glad you brought your story here. As you can see we have some really dedicated members who only want to help.

I am truly sorry for your plight with your daughter Dealing with a chronically ill child and a teen at that, can be so difficult, I can only imagine. You are doing a good job. Please keep posting and let us know of her condition and please seek here the support you need. We are here for you.

I had pancreatitis when I was in my twenties and it was some of the worst pain I ever experienced. Mine was due to birth control pills, they discovered. No BCP's for me after that.

I wish for your daughter a low pain day and God's blessingx for you and her and your whole family.

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


Hello~Kitty
Veteran Member


Date Joined Jun 2005
Total Posts : 610
   Posted 11/9/2008 12:28 AM (GMT -7)   
Scruffy,

I know alot about pancreatitas, cause I have pancreatic divisum (Pancreatic divisum is a congenital anomaly in the anatomy of the ducts of the pancreas in which a single pancreatic duct is not formed, but rather remains as two distinct dorsal and ventral ducts.). But before I was diagnosed with it I had gallstones at 14 and had it removed at 15 and then a few weeks after that I still had the severe pain and they did a ERCP and discovered that had that problem with my pancreas and they put a stent in the duct. I was also wondering about diabetes and I was told that having Pancreatic divisum wont cause that, which I think is weird since basically my pancreas isnt working hardly. I'm 25 now, and I have 10 things wrong with my digestive system that I've had since I can remember so I know exactly the pain and torture your daughter is going thru, but eventually if you make some diet changes the main thing being "LOW fat and LOW proteine diet" for pancreas problems. And I know how all this pain can cause severe depression, their's days where I just wish I knew how it was to not have ANY stomach pain, to be able to eat and not feel like I'm dying and doubling over is pain for hours afterwards.

-hellokitty
I have Migraines, Pancreatic Divisum, Severe lower back pain, Fibromyalgia
Meds: Suboxone, Cymbalta, Zanaflex, Treximet


ryand
Veteran Member


Date Joined Dec 2007
Total Posts : 639
   Posted 11/9/2008 9:31 AM (GMT -7)   
Scruffy:

I have a website I'd like to share with you. It is a link to resources about living with pancreatitis and includes nutrition and diet information as well as a cookbook you can use to create meals that are low in fat and easily digestible for people living with the disease. Since it is a retail site, I don't think I am allowed to post it here in this thread, though. I have changed my settings so you can email me, though. If you click on the little envelope under my user id, it should let you send me an email, and will send you the link.

Hello-kitty, if you are interested, I can send it to you too. smilewinkgrin

Ry

Scruffy
New Member


Date Joined Nov 2008
Total Posts : 3
   Posted 11/15/2008 2:33 PM (GMT -7)   
Thanks to everyone for your comments and thoughts and prays.  I am not affended by anything that anyone has to say.  I know my daughter needs to eat more healthy and that would help her out.  I work off and on with a Temp service so I am not here all the times. 
She just had a MRCP and a Endoscopy done which both came back showing nothing new is going on. Everything look good.  So that is good.  So I think it is her eating issue.  Thanks again and I will update you all later.
 
Scruffy
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