She has posted comments on this blog but I have not been able to publish them because they contain her email and I do not publish comment that contain private email addresses. Anyway ...
Please pray for her.
Kyli, if you are reading this post I want you to know I am gonna walk out on a limb and tell you what I would do. This is ONLY what I would do. YOU have to do what you feel is best for you and it sounds to me like your medical team is doing right by you as much as they can with orthodox medical protocols. With that said ...
IF it were me ...
I would ask the doctor WHY I have pancreatitis. He/she may not have a clue and may be totally in the dark in that respect. IF alcohol (binge or total alcoholic) is not the problem, I have no gallstones, my blood fat levels are normal, I am not diabetic (diabetes drugs cause AP), I can't point to some other drug as the problem, I did not suffer severe abdominal trauma (within the last year or two), no one else in my family has ever had pancreatitis (hereditary), I don't have or SOD has been ruled out, I'd ask if some weird autoimmune disease such as celiac, lupus, sjogren's or chron's may be causing it (there are many that cause pancreatitis - the list is long). Autoimmune disease can cause autoimmune pancreatitis and AIP responds to steroids.
In your last comment you mentioned they were gonna have you try to eat. Again, IF it were me I know that food is NOT my friend, especially if my pancreas is inflamed and this is where the medical team may not be up to speed. Red meat, pork, lamb, duck and ANYTHING made from those meats including soups and broths will make me sick again or sicker. Other than the fact they contain HIGH amounts of FAT (fat and alcohol are the enemy) I don't know WHY they make me sick they just do. OIL (any kind) is NOT good for an inflamed pancreas. I would NOT eat anything with any kind of oil or fat. That means nothing is to be cooked in oil, nothing is to be made with oil, butter, maragine or some other kind of fat. Now ...
I'd also ask the doc to give me 800mgs of Ibuprofen and why would I do that?
Ibuprofen is an anti-inflammatory drug. Pancreatitis is inflammation of the pancreas. I'd also have someone go to the nearest health food store and buy me some pure (nothing else in it but vitamin c) grape seed extract (95% polyphenols); 100 mgs caps/tabs and enough of it to start taking 200mgs 3-4 times per day for an extended time period. I'd also have them buy pure curcumin caps 400 - 500 mg caps and I'd take those 3 times per day. Both grape seed extract and curcumin are HIGHLY anti-inflammatory. I'd also have them buy pure vit C (500mgs w/bioflavonoids). I'd take these because I know these work for me.
I'd also ask the doc if there were any reason I could NOT drink grapefruit juice. IF there are no drug interactions with grapefruit juice I'd ask for white, unsweetend grapefruit juice. I found that grapefruit juice stopped my acute pancreatitis attacks (around 1982-83) and helped start the healing process then in 2004 a research team found that grapefruit protected rats from pancreas damage due to pancreatitis. So even before science discovered grapefruit may be helpful the Lord my God led me to drink tons of grapefruit juice. I'd be following His directions again. He also led me to Ibuprofen on one bad night after my diagnosis when demerol would even touch my pain. Then ...
I'd do everything he taught me again because it works.
May our glorious Savior Jesus hold you in His arms, protect you, heal you and give you peace Kyli.
UPDATE 2/21/2013 Kyli Is Home
Those of you who prayed for Kyli I want you to know she is grateful and was released from the hospital. From her comments it sounded like she was a pretty sick lady and glory to God she is still with us and seems to be improving.
I just got a comment from her stating that she was released on January 18, is home, not feeling well yet. I'd have posted her comment but she keeps putting an email address in them and so to protect her privacy I can not publish it. However here's a short protion of it:
"They're still unsure what the cause is for me, so they're still labeling it as idiopathic. I forget if I told you but my ERCP showed a couple abnormal side branches and duct irregularities but nothing severe enough to call it CP. I did find out through my geneticist recently, however, that I have one of the Cystic Fibrosis genes ... only having one means that I'm a carrier, not that I actually have CF. I don't have any lung issues, etc, and ironically enough, my GI doc isn't even sure if this particular gene I have is even associated with CP so theyre looking into that for me! What a rollercoaster this has been! (It would be very bizarre for this to be genetic since I have never had pancreas issues prior to 4 months ago!)"
The docs don't know why she has it and of course the damage that showed on her ERCP wasn't "severe" enough to call it CP but I betcha she has CP or will have. Anyway ...
She isn't well yet. She still has her J Tube and can not tolerate any food to well however she did mention her pain is better so there seems to be some improvement since her release from the hospital.
Kyli - I just reread some of your comments and you said they keep feeding you salmon and your lipase goes up. That is most likely because salmon is an OILY fish. Salmon is very healthy for a well person but ... To much oil for an inflamed, damaged pancreas to tolerate.
ReplyDeleteI would go strictly vegan. I'd start with juice ... Vegetable juice (low sodium V8), fruit juice (grapefruit, grape, apple, orange) and see how that was tolerated. Then some vegetables (no oil in prep or cooking), grains (oatmeal without milk, toast (without anything but jam/jelly), rice, etc. VEGAN. NO meat, no dairy, no broth or soups made with meat or any kind of oil. I'd go really slow with the solid food too, just a little rice & vegetables at a time or some oatmeal without milk, mostly juice for the first few days. That is what I'd insist upon ... A normal diet is gonna keep you sick.
Kyli remember this - I am NOT a doctor. I can NOT prescribe treament. I can not give medical advice. I have told you what I would do if it were me in your situation via the above post and comment - YOU have to do what you think is best for you.
DeleteGood luck girl; I hope you get well soon.
One more quick question. Why white grapefruit juice vs the red? The red seems much more available than the white? Is it slightly better or way better? Thanks!
ReplyDeleteHopeful - I have no clue whether white is better than the ruby red. The white is all I have ever used. Obviously you could try the red and see how it works.
DeleteHi there!
ReplyDeleteIt's Kyli! I have been meaning to post for over a month now and let you know how much this blog meant to me. I cried when I saw it. I was in the hospital, so sick, and losing faith in people very quickly (because the doctors were becoming really frustrated with me) and when I saw this, it really reminded me that there are great people out there :) So thank you so much. Really.
I got out of the hospital finally on January 18th and still have my j-tube. I guess the fortunate thing is that of course, I'm out of that awful place, and also, I've gained a lot of weight and my nutrition is good. The bad news is I have not really been able to tolerate very much food at all yet. I've taken your advice and have been avoiding meat and fat at all costs though and when I do try to eat, I've tried blenderized fruits or veggies, but the pain always worsens. Sometimes right away, sometimes not until later that night. Its pretty constant for me... just a dull ache in my back that worsens upon eating, but it has definitely improved since my hospitalization.
My lipase was 171 the last they checked (should be under 50 according to that lab), but it had dropped to around 30 when they released me which gave me some hope that its at least not consistently high all of the time anymore.
They're still unsure what the cause is for me, so they're still labeling it as idiopathic. I forget if I told you but my ERCP showed a couple abnormal side branches and duct irregularities but nothing severe enough to call it CP. I did find out through my geneticist recently, however, that I have one of the Cystic Fibrosis genes ... only having one means that I'm a carrier, not that I actually have CF. I don't have any lung issues, etc, and ironically enough, my GI doc isn't even sure if this particular gene I have is even associated with CP so theyre looking into that for me! What a rollercoaster this has been! (It would be very bizarre for this to be genetic since I have never had pancreas issues prior to 4 months ago!)
Anyway, I apologize for this long story. I was wondering if you've ever come across a story similar to mine in your readings? Also, you mentioned grape, apple, and orange juices and I was wondering if there's a specific reason? Are some fruits and veggies better tolerated than others? I've tried pineapple and strawberry with no luck. I've been taking curcumin every day at a low dose , planning to slowly raise and I'm hoping to add in some grapeseed soon too.
I know you mentioned you emailed me before, but I'm thinking I might have given you the wrong email so I'm including a different one :) Dustinkyli@gmail.com
If you could email me , that would be wonderful. Again, thank you so much for all of your advice and for this blog. It has truly been so uplifting to me, and of course, for your prayer request for me... :)
Kyli