Severe Pancreatitis

W

windex125

Guest
Just got out of the hosp. yest spent 9 days actually in 2 different hosp. made the mistake of going to the ER in my town on LI they really did not know what to do with me, then I finally got transferred to my CF center hosp. that is where they diagnosed me, with accute Pancreatitis . I am now on Creon 2 tabs before ea. meal I think 6000 units? I have no idea abt enzymes as I've lived my life this long 59 PS now of course CF has to stick it's ulgy head out once again and bring me down. I am feeling so angry and sad at the same time. I wld like any info you all can supply. Although it's only been 2 days I still have the stomach pain after eating this bland suff I was advised to do. I then take a Pepcid right after as the acid reflux pain starts after the last bite of food. I did go back looking at older threads but only made it to pg 4-5 and so thought let me just start fresh and even though I know we have discussed this soooo many times before I wld sure appreciate any advice. The doctor did state that once the inflammation calms down I can maybe resume some of the foods I so enjoyed esp. my glass of
wine with my pasta dinner. Tks Pat-Cf/59
 

Aboveallislove

Super Moderator
Oh pat. I'm so sorry. I think pancreatisist can come even with enzymes. I think it is whe. Those who were ps have the pancreas burn out and it is the pain from that....but that process means you'll need the enzymes to prevent dios, pain, malabsorption, etc. I know there are a couple threads on pancreatisist so search for those with the correct spelling sorry for my bitching it. You'll get use to the enzymes and be able to eat normal again...but need to get over the pancreatisist pain.. Did they give you psi. Killers? My recollection was that that is needed. I am so sorry. Hugs and prayers.
love
 

AUG19DW

New member
My son had very severy pancreatitis. He started at age 12 and at age 15 he had started having attacks twice a month. The one GI removed his gallbladder to see if it would help even though the gallbladder was fine. Of course it did not but not only that it made him start having continous attacks 24/7. So as do alot of other Pancreatitis patients they do not recomment removing the gallbladder even if the GI wants too. Do not do it!! I joined a Pancreatitis page on Yahoo that saved my sons life. He ended up having to drop out of school at 15 due to the 24/7 pain. At that point he had no life at all. Had to put him on suicide watch and all. The pain meds. kept him asleep or then he would get used to them and have to go on something stronger. The poor kid could not function! So finally at 17 I found Dr. David Sutherland in Minnesota that agreed to do the Total Pancrectectomy/Auto Islet Cell Transplant. So after 1 yr. of weaning off all the pain meds he was pain free!! He did have to take insulin for a yr. but then his Islet Cells started producing insulin from his liver. He finally had his life back at 19 yrs old!!!
Dont want to scare you with this horror story but this was a Severe and Rare case is how the GI's and CF clinic put it.
But to help you I would suggest a food diary. Whatever is causing you to have attack do not eat it again. Of course alcohol does not help at all. But I do understand wanting a glass of wine, believe me! Lol! Try and stay away from fatty foods and caffeine. If or when you have an attack try and do water and something that is easy on your pancreas (treat it like the flu and take it easy on your stomache). Sometimes no food is the best way and just keep hydrated. Your pancreas needs time to stop attacking itself. I know when they used to admit my son it was no food for days or even a week to calm it down. If you are having a few attacks a year just watch the way you eat. Because to find a GI that knows anything about Pancreatitis would be a miracle! We went thru 6 GI's and to be honest the pancreas they are baffled by. Oh and might I add Stress can bring on an attack also. So when you have an attack try and relax as much as possible and calm the stress.
If you ever have any other questions feel free to contact me at aug19dw@aol.com
 
W

windex125

Guest
Thank You so much that was very informative, I am eating less and less which is not good but I am afraid I will do something to cause a flare up. On top of all this I am having a reaction to the Creon and since I am a older woman with a good sense of humor I will tell you it is a itchy butt. It's driving me nuts the nurse mentioned using Prep. H for awhile till my body adjusts, will my body adjust is the question?? I took my first pain med last night, but it did not seem to do anything. This is something I am really going to have to learn as I go thru it all. Bless You Pat-Cf/59
 

Aboveallislove

Super Moderator
Omg...ds had an itchy butt really bad after we had gotten his tummy adjusted with flagyl like drug and more culturelle and no o e had an explanation ...tested for pinworms, etc. what was the explanation for wh croon did it? The itchy butt was a small price to pay for having the multiway tummy aches gone, but I'd like to have a theory for why to figure out what actually heled. Hang in there with the psi !
 

AUG19DW

New member
Just a small word of advise. Please dont take narcotics if there is any way possible you can deal thru the pain. Because you get so used to one then have to go to a stronger one and so on and so on. And you become an addict. Hate to use that word but that is the only way to descibe it. Watching a child go thru the pain of course I was begging for them to give him something. But to do it all over again I would have not let him take it unless the pain was a 6 or above. I tried to let him have them just so he could go to school and live a normal life but it made him hooked on them faster. And it was a total nightmare weaning him off of the narcotics. Lets put it this way he said it was worse than pancreatitis ever was! That is bad!!! But of course take something if you really need to or to keep you from making a trip to the E.R., which we did over 100 times at least. I am not trying to scare you again but narcotics are no joke!
 

jricci

Super Moderator
I’m so sorry that you are going through this. I am pancreatic sufficient and struggled with severe pancreatitis about 15 years ago. I’ve been through a lot with CF, but I can say without a doubt that my bouts of pancreatitis were the most challenging for me both mentally and physically. The pain is indescribable and, to this day, has psychologically scarred me. But don’t lose hope. 15 years ago I thought there was no end in sight. For six months, I had recurrent bouts of severe pancreatitis. I would have to be hospitalized multiple times, on IV narcotics and hydration without anything to eat or drink for days, sometimes weeks at a time. I had several ERCPs and scans of the gall bladder during these attacks and no blockage was ever found. I eventually had to start IV nutrition (TPN) because every time I would start to advance my diet, I would have another attack. But then after the last attack, I was NPO for about a week, I slowly added clears and then, bland, non-fat foods and the pain never returned. There was no explanation, no magic pill or procedure. It just stopped. Today, I am still pancreatic sufficient and don’t require enzymes. I eat a normal diet without any restrictions. It did take me awhile to get to this point. I was on a low fat diet for over a year before I slowly started adding more fat. For a couple of years I was on Viokase (pancreatic enzymes) prior to meals. The enzymes weren’t prescribed because I wasn’t absorbing fats but the thought was that they may help take some of the workload off of my pancreas and in the process prevent an attack. With the passage of time, I was given the OK to stop these as well. The best piece of advice I can give you is to be patient and don’t start advancing your diet too soon. I used pain as my guide. I did not start to eat anything beyond clears if I was having any pain at all-even if it was just tenderness with palpation. Of course I’m not a doctor, so this may not be the best treatment for you. I can only speak to my own experience. I do want to mention that I have had 3 bouts of very mild pancreatitis over the past 10 years. They were all when I was on the antibiotics minocycline or doxycycline. It is a very rare side effect of this class of drugs. Needless to say, I no longer take these. But the pancreatitis I experienced as the side effect of these drugs was extremely mild compared to what I went through 15 years ago. Hang in there and try to stay positive. Feel free to PM me if I can be of any further assistance.
 
W

windex125

Guest
Thank You all for being so helpful and giving yr advice and stories. jricci I was on doxycycline for over a year... when the doctor mentioned may hv been a issue that I thought to myself why did she not test my blood every 3 mts or something? Also I hardly ever read side effects of meds as I want to see how my body reacts first before putting any thoughts in my head. have to admit I am very depressed abt this all, but I've been dealing with the depression on and off for years I take some meds for that as well but also wean myself off or lower the dosage every 6mts or so I just feel I am strong and shd be able to handle everything at this point if I need help occasionally that's ok but not on a forever basis. Also it's very hard to eat low fat I went shopping yest reading labels and well I looked for anything that was under the #5 for fat I miss my snacks as well. I also lost 35% of my hearing in each ear and have to use hearing aids due to inhaling Tobi I am sure before it was approved for inhaling and Gentamicin as well you think I wld of learned my lesson abt reading side effects. So still dealing with the itchy butt and now also have yeast infection but I am taking Dificilan for that (I am the worst speller) I'll give it a few more days and see what we can chg. Again Thank You all I so appreciate yr. stories and I find them extremely helpful. Pat-CF/59
 

MichaelL

New member
I am pancreatic sufficient and ended up in the hospital with pancreatitis a few years ago. It was awful and so frustrating. I was told they couldn't give me anything to make me heal faster. They had me on a clear liquid diet during the worst of it. It's so hard to get calories on a clear liquid diet and I ended up losing a lot of weight. They then transitioned me to a liquid diet and then gradually back to eating solid food. I continued to avoid high fat foods and alcohol for a month or so. For me, the pancreatitis was a side effect of one of the antibiotics I was on -- Tygacil. I dropped this drug and the symptoms went away.

I can understand your frustration. I hope you're feeling better soon.
 

Epona

New member
There is some evidence that pancreatitis may be linked to a low level of antioxidant intake, besides its connection with CF. Increasing the intake of antioxidants in colorful plants (especially leafy greens like kale and spinach, arugula, dark colored berries) may help prevent and treat pancreatitis. Here's a link about it: https://umm.edu/health/medical/altmed/condition/pancreatitis

Also, reducing intake of foods that are oxidizing and inflammatory (like refined carbs - pasta - and alcohol) is important because these foods deplete antioxidant levels in the body and that leads to inflammation which leads to pain.
 
Top