Ideopathic Pancreatitis and Cystic Fibrosis?

Pancreatitis
#1

Hi,

Being new to this list, I will be asking lots of questions!! I’m curious, of you with idiopathic pancreatitis, how many have been tested for Cystic Fibrosis? It took me several years to find out that I had CF, because all the doctors thought I was too old to be alive with CF–WRONG!!! Many of us are my age and older, and I am 45. My doctor wrote a paper several years ago about my case to the American Journal of Gastrointerology about cases of idiopathic pancreatitis ending up being caused by the patient having Cystic Fibrosis. Just curious, and it certainly answered a lot of questions for me, and got me started on medications I desperately needed.

Karen

#2

its the spink1 gene I think its called.

#3

I was just recently tested for CF to see if I had a latent (sp?) gene and I am 48. I did not have the gene, but the doctors are not leaving any stone unturned. I just have this crap and know one knows why?

Leanne

#4

Hi, Lisa, I am not on TPN, but lately, I have been constantly thirsty. I am wondering if this is a side effect of CP. Nothing really quenches my thirst. I have tried water, sports drinks, sodas, juices, etc… At first I thought that I had developed diabetes as thirst is one of the symptoms of diabetes, but my bloodwork came back fine. Strange…

#5

Hi, all–

This is really scary for me. I’ve been complaining of severe breathing problems that no meds/nebs have helped and have had my pulse ox in the hospital drop many times, my blood labs are showing abnormal carbon dioxide levels, and although I see a genetics doc for my primary care due to another rare genetic condition, no one has ever suggested this.

Can anyone tell me what their symptoms were or how they were diagnosed? I’d like to discuss it w/my docs without seeming like I’m suggesting there might yet be something else wrong-- None of us need that!

Take care and thanks for any help!

Hugs,

Lisa

#6

Are you having trouble with dehydration, because that can elevate your carbon dioxide levels. I have elevated levels quite often and my pulse ox will drop off. Even pain meds will make me stop breathing. I use a c-pap machine at night because the problem has become so bad. I see a pulmonologist who was one of the first people who thought my CP might be because of Cystic Fribrosis. I do not CF but I think it is very interesting that I have developed these lungs problems since the CP. Take care!

Leanne

#7

Leanne,

Thanks so much for your note back. My BUN has been elevated and I’m thirsty all the time on the TPN-- so that could be a factor. I know the pain meds dry me out, so that might be contributing also.

My asthma doc will hopefully have an opinion/direction to go. Some days the breathing gets so bad I feel like my whole body gets agitated and I just can’t relax at all. Its scary when you’re not getting air in-- and the pulse ox drops have at least confirmed what I’ve been reporting.

I hope you have a great day-- or the best possible, at least.

Thanks again for your help!

Lisa

#8

Dear Warbi,

I too have the same problem. Got tested for diabetes many times. I was told by my doctor that it is assumed that the lack of fluid assists in the accumulation of pancreatic sludge. This sludge can then lead to blockages which can irritate the pancreas. Also, the enzymes we take make us more dehydrated. It is important to understand that thirst is a sign of dehydration and therefore not a timely indicator of our fluid needs. Remember that thirst is an indicator that you are already dehydrated. Be sure to drink BEFORE you feel thirsty.

Chris

#9

Hi, Warbi and chcow99–

I’ve been repeatedly tested for diabetes-- but now my blood glucose levels are crashing down to about 50 even on whole bags of TPN and then my thyroid, which is usually way too low (Hashimoto’s Disease) went hyperthyroid-- which didn’t help the weight loss issue either. They ruled out sepsis since I have a central line, but some docs are also suspecting a tumor. I sure hope they’re wrong. My latest problem is that I’m almost never having to urinate-- like I go all day, even w/all the liquid in the TPN, feel thirsty, and only seem to feel like my bladder’s full at night when I’m asleep and the TPN is going in. I know something’s up, but I’m honestly so completely sick of doctors and hospitals and procedures that I haven’t even mentioned it to anyone treating me. I know that’s probably not the best thing to be doing, but I’m just getting burned out and even fearful of any more being wrong or that I’d have to go through. I don’t get why my pain is flared up since everything was starting to seem calmed down from about a month ago anyway. This whole disease is so sad and horrible to live with. It’s amazing that the docs don’t really know how to treat or cure it. On the TPN I’m not supposed to eat or drink, but since the BG is crashing, they have me taking sips of clear juice and an occasional Saltine cracker in tiny softened bites. Sometimes I’m so thirsty I have to take a few small sips of water. What a life!

Thanks again for the info and sharing-- I hope you both feel better soon!

Hugs,

Lisa

#10

No problem you have a good day too. I am going to the doctor in just a little while and will probably be admitted to the hospital, such is life. Thanks for all your info on home IVs it was greatly appreciated.

Leanne

#11

Leanne,

Best of luck if you go to the hospital–Please let us know how it goes.

Many hugs,

Lisa

#12

Leanne, you are spot on in that idea. I have to work so hard to keep hydrated enough and it can cause a rise in CO2 in the blood because all of the actions that many of one’s organs have to do because of a lack of water will just zap the blood for all the O2 they can get!

#13

I have the same thirst problem. Anyone have any idea what causes it if it isn’t diabetes?

#14

Chris: Thanks for the information. Do you just drink water or do sports drinks help more?

#15

Many with pacreatitis or chronic pancreatitis are in pain and their stomaches are all messed up (nausea as well as regurgitation), there is a tendency not to drink a lot or as much as one really needs to. If you actually measure how much water you do drink all day, you may be very surprised that you are not driniking enough at all. I know that this is my case. I feel like I have had enough water if I drink 2 of these big glasses of water that I drink out of. It is b far not enough water but I feel that if I drink more I will have problems with my stomach as I am full by the time I finish those 2 large glasses of water. Also, I have learned that ice only counts for about half of its original volume as a total liquid!

Hope this helps you out.

Hoping the best for all of you.

#16

Ellen, sports drinks are good for the days of diarrhea and or vomiting. When you are having diarrhea or vomiting, your body is losing electrolytes. Sports drinks help maintain that balance as well as providing easily digestible carbohydrates. On a “good” day, water is probably a better bet as it is more hydrating.

#17

Ellen,

I’m thirsty most of the time. I have to carry water wherever I go and night time I have to sip water whenever I feel dry mouth. Because I drink water I get up once or twice to go to bathroom. I thought at first I was becoming diabetic but my visiting nurse said when you are on so much pain meds it makes you thirsty. Whenever I used to end up in the hospitals or when they do blood work I always ask them to look for the sugar levels. The levels were never elevated. If they get elevated in the blood test then we have to go for the fasting test and drink the sugary juice or something like that and they draw blood before drinking and after drinking two to three times I think. I got tested for that when I was pregnant and I ended up with gestational diabetes and had to take check every time I eat and take Insulin dose as the doctors used to tell us. They used to check on my levels almost daily calling at home when I was on bed rest.

I’m waiting for my blood tests because I was feeling very tired and because we don’t eat well need to check all the vitamins,Potassium as I get bad cramps sometimes at night time and I don’t know what to do sometimes. It makes me cry too. I wake up my husband sometimes he kind of massages the legs but if you feel the cramps all over what can we do? Those kind of nights, I call them suddenly dropped into hell and got stuck there.

So, as Chronic Pancreatitis patients we need to take lot of pain medications (still it varies from one person to another depending on the kind of medications and dosages, right!) that can also cause the dry mouth and thirsty all the time. I drink daily 6 to 7 bottles of water. The more water you drink it’s better in many ways. For us because of not getting proper nutrition the water acts as the anti-oxidants for us. Hope you are having pain free day and feeling little better. Have a nice evening and good night without pain and sleep better.

Love,
Durga

#18

Ellen,

Yes, potassium is so important and you Must also take calcium with it as well as it pushes the absorbtion of potassium. I have the same problem. When I was hospitalized just before Mother’s Day, I had not taken my potassium for about 3 days and I already started suffering dramatically. The sudden jerking of the arms and legs. Tightening the muscles as much as possible in hopes that it would release the cramping. The tossing of my arms and legs. All of this. They added potassium to my IV immediately. There is one muscle that we have to be accounting for in this problem and that is that the heart is mainly a muscle and it, too, can be affected–leading to a heart attack!

So, all of you who can’t really eat all of those things that most people can, be sure to get an adequate (if not a little excessive) amout of potassium in your diet through a supplement and making sure that you also eat foods rich in potassium when you can. Bananas are a great source as well as Gatorade.

Anyse

#19

Good points, Anyse! I would also add that you should take a daily multi-vitamin. Research shows that they work best taken with the last meal of the day. Bananas are certainly an excellent source of potassium.
Warren

#20

Dear Anyse:

Thank you so much for telling me about potassium. No one has ever mentioned that. Sometimes I get pains in my arms and my legs and they feel really heavy. From what you have described I’m thinking that might be part of dehydration. I take calcium because I have osteoporosis, but I’m now going to take potassium. Thank you so much!

Ellen