Chronic Pancreatitis-Statistical Information

Pancreatitis
#48

  1. Female. Period, yes, however until diagnosis I always thought that was what a period was. I’ve just been diagnosed with HP and have had this since childhood, so I thought everyone had a lot of pain and flu like symptoms during their period. But I guess if you’ve had it since childhood how would you know what “normal” is?

  2. Potatoes, whole wheat pasta, brown/white rice, couscous, fish (not fried), beans, dark green leafy vegetables, lots of fruit, crave tomatoe based foods. I could have mild salsa for dinner every day of the week. These are the foods I stick to. If I vary I’m paying for it. For a treat I eat nonfat greek yogurt. It is creamy like icecream and so far I’ve not had a reaction, but it tastes so good and is creamy like sour cream so it gives a satisfying mouth feel. I’m thinking it can’t be non-fat and it makes me nervous, so I only have it once in awhile. Other than that I eat the regular non fat plain watery yogurt. I hate milk and the Doc says I need to get enough vitamin D and calcium.

  3. Yes, but not very often.

  4. Yoga helps, walking helps, but often I’m too tired. There are days where I have to lay down after taking my shower. Everything is exhausting. Also I’m a single Mom with two kids and I work full time, there isn’t a lot of me time. I’m trying to fit in daily walks. The doctor says it’s important. My kids are at the age where they don’t want to be in a baby carriage they want to walk, however walking 100 feet from the house takes 15 minutes and I’ve got to pack snacks for the event. The process is exhausting and not worth the effort. I need to find a way to work with my employer to try and do this during the day when I don’t have the kids.

  5. I am either too fat or too thin. I had pancreatitis the first time at the age of 8 and was very thin. I had it a second time at the age of 28 also very thin. After the second surgery I just started to balloon. I am overweight (170) now. I don’t know why as I have always eaten a lowfat diet based on recomendations from my first surgery. Today I got the diagnosis of HP. I didn’t have any symptoms except a backache that would not go away. And the backache didn’t feel like my first two bouts of pancreatitis when I was younger so I didn’t relate it. I started on the enzymes a couple of weeks ago. It’s not helping with the backache, but according to the Doc it’s going to get worse. He is ok with my weight. Amazingly with as large as I am I’m malnourished. Go figure.

  6. Ultrase 20. 2 Tablets with meals and snacks 4X/day.

  7. Just confirmed HP - PRSS1 gene mutation N29I. Drank a little in college maybe a beer a month and haven’t had any alcohol since mid 20’s. So contrary to what every single stinking ER doctor says it’s not alcoholism.

Please let me know what you document for findings. I’m just joining the group and I’m looking for answers. I don’t meet with the doctor for a follow consult until August and I’d like to know what my future might be like or even if I’ll have a “future”. Right now, I’m especially interested in effective ways to deal with anger. I’m very very angry. I know it’s part of the emmotional process, but I need to get this under control. I’m also incredibly worried about my children. (fortunately they are not biological so no chance of continuing the lousy gene pool). I keep wondering what’s going to happen. I guess I should just take it one day at a time…

#49

The messages from Bimmerella and Inav especially moved me. I feel lucky to finally have a local intern who recognizes that I probably know more about pancreatitis and its effects on me than she does. It is quite overwhelming at times to have to rely on professionals who just don’t really understand the disease and its effects on those of us who have it. When I am in the e.r. it seems nearly all of the drs., nurses etc. are trying to convince me they can find a vein to start the i.v. or have the “right” way to treat me. It gets so frustrating. It is so great when I have the e.r. doc who has treated me before and who really listens to what my husband or I say about what has worked in the past. I too have felt like my friends at times get tired of hearing about me being sick. I have good friends but it is hard to visit a person in the hospital who is all drugged up or in a lot of pain. This is such a hard disease for all involved. This site is so wonderful because we all know this disease at some level. What support to have. Blessings to you all.

#50

I will answer you questions as they apply to me.

1. Female, 37 yo.

2. Idopathic chronic pancreatitis. (I had several acute attacks first (Lipase went above 10,000. No joke) I do not drink. Have never been much of a drinker - maybe 2 drinks per year. They have run every test they can and cannot find the cause of my pancreatitis, no inflammation of the pancrease, no calcifications, no duct blockages, no gall bladder issues, no genetic issues, no family history, no infection, etc. In other words - they have no clue.

3. I am Insulin Dependant. I had diabetes type II prior, but never needed insulin until after my 2nd acute attack.

4. There is no corrolation between my menstual cycle and my attacks.

5. I have been woken with the pain on a regular basis. When having a flare, only being sedated with narcotics allows me to sleep.

6. Laying on my back increases my pain to my back. Laying on my right side in the fetal position helps reduce my pain.

7. I eat a low fat diet at all times. 20 grams of fat or less per day. No alcohol at all. Any alcohol will immideatly cause severe pain.

8. Excercise - I have back issues as well as several other helth conditions that prevent me from really excercising.

9. Stress - Well managed. I meditate daily. Practice mindfulness.

10. nausea - diluted lemon juice with some salt helps some with the nausea. Zofran no longer works for me. I have tried all the anti-emetics on the market today and none work for me any longer.

11. alternative therapies -  Acupuncture does seem to have reduced the number and severity of my attacks.

12. the only things that lets me recover from a flare is being NPO which presents a challenge with my diabetes so I am usually admitted to the hospital so that I can be provided with nutrition IV so as not to have my sugars bottom out. Even a clear liquid diet is painful when having a flare.

I used to have a pancreatitis specialist here but he left. So whoever is on call in the ER tends to treat me after I educate them on Chronic Pancreatitis and it's differnece from acute pancreatitis. After I fight with them they admit me and follow my instructions. I would love to find a doctor who might have advice or treatment for me.

I hope this helps.

#51

Hello everyone,

I believe I have written about this before but wanted to share again about a product that I use that helps a lot to keep me nutritionally up and at the same time helps to fill me up.

It is powdered veggies, fruits and greens. I make my own fruit juice or veggie juice and mix the powdered mixture into the juice. You can use water or store bought juice. It gives me energy and I feel that at least I am able to give myself some nutrition besides. I also use nutritional yeast flakes every 2-3 days in the drink mix. (nutritional yeast is good for B vitamins) The juice is full of antioxidants. I think this is one reason that I have been able to endure several procedures this year and not get really sick. I have also been able to maintain a good weight. (Of course this may be due to the fact that sweets are one thing I can eat that don’t hurt) :slight_smile:

If you are interested in information on these products let me know. I will be more than happy to pass along the information.

God Bless and Keep the Faith

Vonnie

#52

Steph,

I am 37 yr old female w/ CP for over a yr know. My flare-ups (pain) is
definitely worse before my period. I have been keeping a calendar and more
than 50% of my ER visits are before my period. I tell the doc’s, but they
just do not get it.

Carbs work for me when i am able to get food down. I have recently dropped
to under the 100lb mark; i just wish i could see an end to this.

Have a pain free day
Lisa

#53

I too have idiopathic, or I might have pancreatic divism - it is being re-evaluted. I also get pains during the middle of the night and sometimes nausea too.

#54

Hello all. To answer the questions… I am female. I am no longer having periods. When I am having a pain episode I generally only take sips of water. Sometimes some ginger tea if the pain isn’t too bad. The panc. is idiopathic. When I first started having pain episodes they would come while I was sleeping. Now, most occur any time from 2pm-evening (around 10pm). When I am having a pain episode I cannot imagine exercising. I am on the couch with meds and my pain cd by Belleruth Naperstack. I have been a vegetarian for about 2 years and am now eliminating dairy and eggs. My Mayo doc told me 2 years ago that there is nothing to indicate a vegetarian diet would help but I believe it is worth a try. I am having approx. 2 pain episodes/month so I know I am “luckier” than some of you. Thinking of you all.

#55

I am a 61 yr.old lady with chronic pancreatitis. Mine started after doing a reasearch study for arthitis I told loratabs a 12 hour release form. Three months into the study I became blocked I did not go to the bathroom for 4 days. On the 5th day I was hurting and by night fall I thought I was having a heart attack. Went to the hospital and they found my enzimes for the pancreas was 9,500 should be below 400. The liver was 900 should be less that 100 I was in the hospital for 5 days 3 of which was in ICU. Since then I have had numerous attacks mostly at night. I have had to have all my pancreas removed except the head and also my spleen. I am on Creon for digestion. My doctor seems to think my attack was caused by the Loratab. Any one else had that to happen. My pancreas was as they described it was eating its self. I am still in pain everday and most foods with fat cause me pain. My worse time is at night after I eat dinner. The bloating and burping starts.I am taking stadol nasal spray for the pain. Its the only thing I could keep down when the attacks start.

#56

Hi,

YES! I am almost guaranteed a flare up around my menstrual cycle…it’s ridiculous. I make a sweet potatoe/kale/other veggie/turmeric soup that’s wonderful on my pancreas. No belly fat from the Creon…in fact I’m back to my pre-having a baby body (looking at the only bright side here). Got my first sleeping attack tonight…so here I am. I’m on Creon and omeprezole. I was considered idiopathic until my dr decided to test me for Cystic fibrosis…it explained a lot.
#57

Hi i am Jolea and have chronic pancreatitis and suffer a lot of the same thins you all do.  I suffer some of the worst pain around my menstrual cycle and when ever I have asked if the two are related they look at me like I am nuts!

I too take Creon and medsfor anxiety and depression, have type 2 diabetes, a fatty liver...  They think I have pancreatitis either from a bad gallbladder full of black stones or from the treatments from having child hood leukemia. Never a big drinker but did smoke for a while .  I also have a cyst on my pancrease which I just found out today is twice the size it was. I can't believe their are so many of you out there in the same boat, which makes me wonder if there is so many of us why does it take so long to diagnosis us and find proper treatment. For the first five years of my illness I was treated as an addict as I am sure a lot of u were!

Thanks for listening and I am so glad to find you all, and I am opened for any questions.

 

#58

I am female. My period had no effect. I believe it or not have not exhibited any pathology in my pancreas for almost 2 years. What has changed is I am almost exclusively tube fed. My doctor doesn’t believe I have cp anymore. However I still get severe pain and he thinks I now have a neuritis in the celiac plexus. I still get celiac blocks about every eight weeks. I have had over 40 blocks since 2007. I would get attacks at night. I do have idiopathic cp. Exercise helped but the best treatment other than the blocks is a heating pad.

Hope you get some relief.

Teresa