Help... Chronic pancreatitis can't eat or drink doctors don't seem to care
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Hi I'm new here and feeling very frustrated i have chronic pancreatitis and it is seriously affecting my life. I live in pain daily and have almost weekly attacks this has been going on for about 1 and a half years now and i don't know how to get better it's been getting progressively worse i have developed a cist and my splenic vein is kinked causing tremendous pain . Am i the only one who has this condition? I've been in the hospital 12 times since this has began I've seen 2 gastronologist and they both say i need pain management and have referred me but 90% of the doctors will not give pain meds because of the opioid crisis how am i supposed to manage daily pain and starvation and dehydration? If anyone has any suggestions or suffers from this please let me know im at my wits end
2 likes, 21 replies
Shortie79 patrick44381
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patrick44381 Shortie79
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Thanks shortie79 i am currently on 90,000 units of creon,and omeprozeal. I have been alcohol free since November and have already missed a few months of work this year if these flare ups keep happening im worried I'll lose my job this disease is the worst i hope someday to have a somewhat normal life again.
Shortie79 patrick44381
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patrick44381 Shortie79
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Shortie i was diagnosed with an endoscopic ultrasound that found ireversable changes to my pancreas also blood work when i have an attack my lypase goes through the roof. The attacks are getting closer and closer together i have been maintaining a low fat high protein diet and have been keeping a journal. I work in construction so i need a lot of energy on a daily basis and cannot keep up due to pain with eating and drinking i switched gi's and last Thursday left the doctors feeling confident that we had a plan with the increased creon and pain management but had an attack that same day that resulted in hospitalization again and still can't get into pain management to me it seems the doctors aren't taking this very seriously and it is very frustrating because they just keep telling me to go to the hospital everytime it happens and not finding a long term solution
Shortie79 patrick44381
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Reefsider patrick44381
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Patrick it occurs to me that the only drug that has ever worked for my acute pain is marijuana. Eaten not smoked. I've been given some pretty serious drugs throughout my life but one day when I was in pain and my plumber was here fixing my sink it was very obvious to him. That evening he came down with some little cookies he makes from high grade head and handed me the bag, lol. He has shrapnel in or near his spine and suffers severe pain and couldn't do his job without it he said.
Anyway I've never had it before in any form and before bed I broke one tiny, about one inch round cookie, in half and ate it. Within 15 minutes I felt like I'd been hit over the head with a brick and went to bed. I slept all night and woke pain free. It had broken the spasm that my doc's tell me happens when my pain cycle starts. It lasted weeks, a miracle. Just saying. I don't know if it's legal where you are, it's just coming in here but still illegal so haven't used it since but it might work for you too.
Shortie79 Reefsider
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Reefsider
You make a good point. Even one of my doctors has recommended it to me. I’ve been on pain medication for a number of years due to another medical condition. I have read many case studies about how doctors will put people on two different pain medications at one time because they send different receptors to your brain. I tried this approach and it worked for my other condition but it’s also when my attacks started and never let up. Needless to say I stopped the second medication. It was a blessing in disguise. I probably wouldn’t have a diagnosis now if I didn’t try the new medication. I’m the type of person who hates having to take medication and I get treated like an addict if I go to the ER. The funny thing is, I don’t feel anything from my meds and can’t understand why people take them to get “high”. I don’t know if you have tried CBD oil but it’s supposed to help with pain without getting you high because there’s no THC in it. I know a friend who suffers from MS and it helps her. I don’t know if CBD oil is legal everywhere. I was scared to try an edible because I didn’t know if I would be okay to digest it. I’m glad you were able to get relief.
clivealive patrick44381
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Please be aware that the PPI omeprazole will put you at risk of developing a Vitamin B12 deficiency
The gastrointestinal symptoms of vitamin B12 deficiency may include:
A sore tongue
Appetite loss
Diarrhoea and/or constipation
Stomach pain Do you have problems with constipation whilst on Creon? I take 110.000 per day and find that sprinkling linseeds onto my breakfast cereal helps.
I am not a medically trained person and I wish you well
Reefsider Shortie79
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I also hate taking meds except for what's absolutely necessary. Reason being my other weird disease when active can suddenly cause a negative reaction to just about everything, drugs, foods, anything.
I tend not to take strong painkillers, I take 6 Osteomol pd, a slow release paracetamol which sounds pretty lame but on a daily basis when neither my other disease or my CP is active it tends to take the edge off. I also have fibromyalgia and other hurty ills. I've been in pain all my life so I'm just used to a certain level.
My doc's have prescribed morphine which stays in the cupboard and when I'm having trouble managing the pain I go into hospital for a couple of days of morphine IV, which never touches it even a little so I tend to argue about going in but hope for a miracle every time and in the end I go along.
When in attack (my other disease) it's a life threatening situation and I have difficulty breathing because of the pain and tend to lose consciousness and am usually in ICU because my organs can shut down, it'a a fun disease lol.
Anyway when I told my local doc about the plumber's cookies he wrote down his recommendation on a piece of paper saying it felt like it was the best prescription he'd written me lol. He wanted me to have half a cookie three times a week. I decided that I'd only take it when the pain was unmanageable, just to break the spasm. As I said before I haven't needed to, I've not had an attack of my other disease for ages and I can manage the acute CP pain pretty well.
I've not tried CBD oil, I had a quick look online and will ask my local doc when next I see her. It's a hassle starting something new, I need to be monitored because I can have a negative reaction but I'll give it a go and keep some at home if it's ok. Thanks for telling me about it Shortie.
Reefsider clivealive
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Hi Clive, thank you for the PPI info. I request a FBC 2 or 3 times pa to check for deficiencies because of the malnutrition associated with my CP prior to diagnosis. I had a test about 5 or 6 weeks ago and haven't heard back from my doc's office so assume all is tickety boo, however.... I've been having problems with sore tongue, like ulcers, a lot in recent months. They go away but return in about a week or so, I have what feels like 3 currently, very ouchy.
A few years ago I had low B12 and bought the gear from the pharmacy to give myself shots for awhile and level returned to normal. I have to go to doc's office tomorrow for something else so will make appt to see my doc about it. Thank you
clivealive Reefsider
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I don't think that B12 and Folate (B9) are automatically included in an FBC and if you have been B12 deficient before and with your (admitted) malnutrition and PPI you may well be deficient again.
Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:
Weakness and fatigue
Light-headedness and dizziness
Palpitations and rapid heartbeat
Shortness of breath
A sore tongue that has a red, beefy appearance
Nausea or poor appetite
Weight loss
Diarrhoea
Yellowish tinge to the skin and eyes
If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:
Numbness and tingling in the hands and feet
Difficulty walking
Muscle weakness
Irritability
Memory loss
Dementia
Depression
Psychosis
Shortie79 Reefsider
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Reefsider Shortie79
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I don't know where you are Shortie, my specialist doc for my other disease has trained ER at one of our teaching hospitals on how to treat me. He issued standing orders regarding drugs and general environment required. They are wonderful and follow his protocol to the letter unlike other ER's I've attended. Unfortunately those orders go out the window once I'm on a regular ward when ICU isn't necessary. I cannot be upset by anything when other disease is in attack mode, stress increases my symptoms dramatically so standing orders are essential.
Perhaps you can have your doc set up some standing orders with your local ER so you don't have to add to your stress by arguing with the ER teams you encounter. They just go to the computer and read, easy peasy.
Pain management is tricky, especially for adults new to it.
As a child I learned to manage by tricking my brain. I'd take myself to another place mentally to block it mostly. When that disease is active I too have paradoxical effects with drugs especially which have to be withheld or monitored very closely. I've even had minor surgical procedures without anaesthetic as a result which is scary and usually results in theatre staff in tears lol, but mostly they try not to touch me, literally.
I'd certainly give pain management clinics a try there are always new methods coming along and one might work for you.
Shortie79 Reefsider
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victoria72652 patrick44381
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Reefsider victoria72652
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I've been offered blocks in the past and have steered away as my pain tends to be intermittent and I usually go into a coma anyway at some point of the attack or I'm medically induced.
I tend to think that whilst pain is ghastly and debilitating it's also a warning that tells us when something is potentially going very wrong. I'd hate to ignore a message like that.
I don't like the idea for myself but if you're ok with it go for it if that options is offered.