Chronic pancreatitis 24/7 pain + worsening for 2 years

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Hello there,

I am a 26 year old with chronic pancreatitis for 2 years. I have come to understand from reading many boards that most people with chronic pancreatitis experience intermittent severe pain from eating that either last days weeks or months and no mater how long these attacks occur they subside at some point during the day.

I have come to beleive that im a rarer case because my pain is severe and 24/7 and of corse worst with food. I have no nausea and constipation rather than diareah. I also have gastropareisis that comes with it. Food stay up to my throat when i eat as if it was stagnating in my stomach. The pain I experience is in my back and upper front chest (more on left side but also mid and right) oddly I also have severe pain in my lower abdomen and lower back as if my intestines and kidneys were litterly being eaten alive. And truly my whole body hurts but it stems from my pancreas. The pain is worst with exercise. Coffee or caffein hurts like hell (although I know many do not have this problem). And digestive enzymes like creon and viokase increase my pain but help me digest (double edge sword for me! ). 

My pain and pressure in my abdomen seems to increase day by day meal after meal as if my disease constant but was degenerative. Its odd beacause most people experience attacks but they subside at some point but not me! sad. I was wondering if there was anyone out there that experience their pancreatitis like mine and how they have coped with it??

The precautions I have taken to manage so far are the following.

totally veagan - no fat (exept minute amount in legumes)

Multivitamin

vit c

grapeseed extract

curcumin and bowswellia

The last three every meal to reduce inflammation and oxidative stress on the organ.

Lastly I have heard of spontanuous releif of pain from chronic pancreatitis in medical litterature from pancreatic burnout (stop producing enzymes) or the organ simply returning to its normal function on its own miraculously. I was wondering if there was anyone out there who have experience their chronic pancreatitis in a similar fashion as mine(i.e. 24/7 pain), did not do well with creon or viokase for their pain, but still one day found their pain to dissapear spontanously or slowly and how many years it took??

To whom ever mite be reading this, regardless of the nature or form of pancreatitis I wish you all a pain free life. Whom ever you may be please share with me as i am feeling desperate

Kind regards,

Alex

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10 Replies

  • Posted

    What testing have you had? You stated you e been suffering for 2 years. I'm going on second month and I've lost so much weight from inability to eat and nausea. How are you maintaining your weight?

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    • Posted

      Hi teach,

      I used the digestive enzymes to help break down the food although they hurt me and completely avoided fats like the plague because this is the main macronutrient that stimulates the pancreas enzymes that stay stuck or leach out to other organs and creates pain. And i have used the supplements stated above before every meal to help decrease the inflammation of the pancreas. As i have mentioned I do not have nausea and diarhea like most but have severe pain and constipation. However low to know fat should help decrease our nausea i think and maby wiill help you eat more. Most that have chronic pancreatitis and have nausea also take nausea meds. 

      Ive had MRI-mrcp CT-scan and bloodwork for amylase lipase but be warn that early chronic pancreatitis is very hard to diagnose and can usually only be caught by pancreas specialists. Next test I will have is secretin test wich is the most definitive for early chronic pancreatitis

      hope this helps

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    • Posted

      Oh and I forgot to mention it will always be a chalenge to maintain weight. the first month or or two of this diseasee i lost 40lbs. Then stabalized with stricked no fat veagan diet and taking enzymes
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    • Posted

      Alex,

      Wow. You got the diet thing down for sure. I have a HIDA scan scheduled for tomorrow. I have no diagnosis, just a ultra sound, CT scan and blood work. Endo normal and now looking an gallbladder. I'm 112 pds can't afford to loose much more. Hope you find the answer you are looking for,

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    • Posted

      Yeah i feel you I used to be 185lbs two years ago. Now i am stable at 135/140lbs but have to fight for it. im 6 feet bey the way. so im pretty skinny lol  
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    • Posted

      Hi Guys

      To both of you, im so sorry, im 101 pounds from this disease was 85 pounds amonth agao, i started eating 2 hourly and high carbs but cant do this for too long. Alex, no you are not alone, are you on the fb support groups, you will see that most of us live with this constant pain. Mine is not showing on scans yet, does your show on scans? what have your Drs said? Have you researched the TP/IAT? DO you have blaoting like I do? The Dr says the blaoting is from damaged pancreas not releasing enough enzymes. I am on Creon but it doesnt help.

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    • Posted

      Hi candice,

      No i do not have fb beileive it or not (im a rare one lol) but will consider making an account an joining the support groups.

      Same here. Mine does not show on scans and my take years or even never show on scans for some (in the case of minimal change chronic pancreatitis) and there is no corollation between pain and scarring of the gland in this disease. Pancreatitic specialist have just learned this in the last 20 years but more so in the last 10. Some have scarring of the glans with zero pain (although rare).

      My gastro says i need to see a pain specialist after I see the pancreas specialist. I am not on any pain meds as of yet. Ive been taking the enzymes and same here it does not help the bloating. I also have gastropareisis and constipation which also does not help with. In fact the enzymes burn or inflame my pancrease more when i take them. But I have no choice or else I would be skeleton. 

      I think the bloating may actually be from the enzymes not being released and staying stuck in the pancreas which makes it swell and hurt.

      I have researched the TPAIT a little but im scared of this procedure. I would love it to be a miracle cure but it does not seem to be. What people have to be aware of with these procedures is that the medical community rarely do longitudinal long term follow-up studies. 1. because there hard to do. 2. because there statistical relevance is not valued as much and. 3. Sergons have no incentives to do so. If it works short term why bother when they profit from the surgery. 

      From my research online i cant find anyoneat all that has been alive for more than 5 years post this surgery. Maby there is but as of now i havent found anyone. And it does not always work your pain my dissapear, decrease, or get worse if the liver starts producing enzymes.

      You mite ask yourself so why do they do this procedure then. Well because CP pain can be miserable and MD's consider that if there no quaity of life at all then even if you die quicker with this procedure the releif you will have gotten from it or reduced pain will have been worth it for the years your alive. And they make money for this too so when you make a decision for such a procedure you gotta see all the angles and what you value most

      Im not saying I will never consider it but I will have to way benefit vs harm when that time comes.

      Hope this helps Candice and I hope I did not scare you as im only trying help

      Alex 

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    • Posted

      No Problem, Alex I agree 100% with what you have said. I am friends with a lady who had the TP/IAt 14 years ago and is very healthy and fine now. and there are a few who are ok but very few... I agree. I  am just terrified of this. My has just been admitted with pancreatitis. Im floored and she is sobbing.

      In my experience pancreatitis never goes away.

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    • Posted

      Wow 14 years. Thats very good news as I did not expect that at all. Did she have everything removed like gallbladder and spleen two or just the pancreas? maby that could have an effect two. Anyways im happy she is well. If I understant from your message it is your daugther that has pancreatitis? how old is she if you dont mind me asking and how long has she had it for?
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  • Posted

    I am so sorry to hear about your pain.  Have you looked up Median Arcute Ligament Syndrome?  After many CT's, a  Dr. finally diagnosed me. 

     

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