Pancreatitis Support Group
Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...
Good Morning Everyone,
So this is a big morning for me, I finally found a doctor that I think can help. He is a top rated doctor in the province and when I saw him last week told me that 'we will get this figured out' which is much better than the 5 doctors I saw before him who shrugged and passed me on to other docs. He is even coming in today on his morning off to expedite helping me because it has been so very long that I have been battling the unknown and he is concerned... as I have been for more than 3 months.
On the weekend, I had a full MRI of kidneys, spleen, pancreas (MRCP), liver, gall bladder, etc, and the tech said they got great pictures. I've been pretty stressed lately because I really have lost so much weight and there really aren't too many things that make you loose weight like I have. This morning I get the results back of my tests. I've got 2 little ones and being sick sure and thinking about their future sure doesn't help me sleep at night.
My doc also gave me what I think is some good advice. I've found it nearly impossible to eat enough calories on a low fat diet and that has really contributed to my weight loss... but I don't even know that fat is hurting me. He said, to eat a full fat diet, not necessarily steak and other hard to digest things, but to try ice cream and shakes etc to boost my calories until we can say definitively that a low fat diet will help. Getting calories on my bones is a top priority right now. So for 4 days I have ate a full fat diet and can say it has made no difference in my pain. What I did find out is that sugary drinks like juice aggravate the pain in my ribs and the pain in my back is from hard to digest things like meat. I think if I can avoid those things, I can avoid lots of my pain and if I can eat some fats, I can help maintain my weight.
Anyone else have fat not aggravate their condition but meat and sugar be really bad? Still pretty nervous to go in today but holding my head high and will fight the good fight against what ever they have found.
Have a great week everyone.
Cory
So this is a big morning for me, I finally found a doctor that I think can help. He is a top rated doctor in the province and when I saw him last week told me that 'we will get this figured out' which is much better than the 5 doctors I saw before him who shrugged and passed me on to other docs. He is even coming in today on his morning off to expedite helping me because it has been so very long that I have been battling the unknown and he is concerned... as I have been for more than 3 months.
On the weekend, I had a full MRI of kidneys, spleen, pancreas (MRCP), liver, gall bladder, etc, and the tech said they got great pictures. I've been pretty stressed lately because I really have lost so much weight and there really aren't too many things that make you loose weight like I have. This morning I get the results back of my tests. I've got 2 little ones and being sick sure and thinking about their future sure doesn't help me sleep at night.
My doc also gave me what I think is some good advice. I've found it nearly impossible to eat enough calories on a low fat diet and that has really contributed to my weight loss... but I don't even know that fat is hurting me. He said, to eat a full fat diet, not necessarily steak and other hard to digest things, but to try ice cream and shakes etc to boost my calories until we can say definitively that a low fat diet will help. Getting calories on my bones is a top priority right now. So for 4 days I have ate a full fat diet and can say it has made no difference in my pain. What I did find out is that sugary drinks like juice aggravate the pain in my ribs and the pain in my back is from hard to digest things like meat. I think if I can avoid those things, I can avoid lots of my pain and if I can eat some fats, I can help maintain my weight.
Anyone else have fat not aggravate their condition but meat and sugar be really bad? Still pretty nervous to go in today but holding my head high and will fight the good fight against what ever they have found.
Have a great week everyone.
Cory
My doctor who I think is really good is in a difficult position. He wants to help me but he can literally see nothing wrong when using the best imaging available. Because he can't see any signs of pancreatitis in my blood work or my imaging, he clearly can't help with anything. All he has is weight loss and my word that I have serious non stop pain, terrible fatigue, nausea and weight loss. He told me to go on a high fat diet to get calories back and I have been trying to eat worse (really) but it makes me feel sicker. I am so bagged I sit when I would normally stand and need naps on the regular. My wife who is extremely pragmatic doesn't know what to make of me either. The doc says there is nothing wrong, and all she has is my voice. We have young kids and she needs me to be more like I was... and I need her to pick it up a bit and help more because I am like a sack of potatoes. I haven't missed work in years (until recently) but just getting in the door is hard these days.
I am trying as hard as I possibly can and can not gain even a single pound and have lost 55lbs to date. Every morning I worry before I step on the scale. I have been healthy my whole life and haven't even had a cold in years, but have never been so sick in my life. I literally eat as much as I can possibly get down and try to pick the highest calorie foods but with zero success.
I'm still scheduled for my EUS on Friday so will see where that goes.
Not sure of what to make of my situation as I don't have even the foggiest idea of what to do or anyone to help. Not in a great place right now. I feel sick and alone. I need an plan...
Sorry for the self pity rant, just needed to get it out :-).
C
Have been watching your story as your symptoms are so close to mine and I feel your frustration, know that feeling of being sick and alone although my mrcp found mild dilation of pancreatic, common bile and intra hepatic ducts, my research says cancer or chronic panc but because I have one tiny gallstone my gastro doc is sending me to a surgeon. I feel that if my gallbladder comes out it won't help because my Hida scan was fine. She still says no pancreas probs without blood tests showing it and my panc looks fine on the scan. She tells me not to google but perhaps she needs to google more.
So hard for you when docs say the can no longer help, you know your own body and that something serious is wrong, I like you did not see a doctor for 15 yrs prior to this, just fought off any illness but after 3 mths knew something was very wrong this time. Hopefully the EUS will be of some help, give those babies of yours a big hug, I can understand your worry when you have little ones.
Yes, I can say our stories are pretty similar. There are a few things that I have noticed lately that may apply to you, depending on how similar our stories are. Firstly, I can't say that fat causes me the most pain. I starting to see that my digestive hardships seem to be most with with Protein. I'm going to start a food journal today and see what I come up with. There is definitely something I am eating, that for hours afterwards I have pain, mostly back pain but some under left ribs and causes extreme (and I mean extreme) fatigue. Not that I want to sleep, just that I need to lay down because my body is suddenly destroyed. I had my kids at swimming lessons last week and I had to lay down on the benches. I will keep everyone up to date with my food journal and how it is working for me.
The second is that I recently found a doctor of Chinese medicine and my results have been interesting. My regular doctors say "We can't see anything wrong", this guy uses acupuncture, pressure points and reflexology and found in 1/2 an hour that my pancreas, spleen and liver are all distressed. I have been seeing him regularly for 3 weeks and can honestly say he knows more about diagnosing and fixing what ever is ailing me than any western doctor I have met. He can work a point on my hand and I can actually feel my intestines moving, gurgling, etc. If I have back pain or abdominal pain he can make it go away. During his sessions, my body feels like it has energy moving through it and when I leave my pain is gone. It really is something quite exceptional and I was not a believer until I started seeing him.
All things being said, I've only seen him for 3 weeks and he is not a miracle worker nor am I cured but I do feel better. I can't vouch for people around your area but this guy seems to be helpful and making a difference. It may be worth a shot to find an experienced reflexologist\accupuncurist in your area. I'm going to see him for 12 weeks and hopefully it helps.
Cory
They did an ultrasound of my GB and a MRI/MRCP where they got very good imaging of all of my upper abdominal organs including the GB. I have not had a 'hidascan' and have not positive on the crones diagnosis... so I guess no is the answer. I haven't had any diarrhea so far.
My B12 levels are low now which is a symptom of digestive issues including CP but that is our only clue so far. Shaky hands and headaches are the result of the B12 deficiency and am heading to the doc tomorrow for another blood test and hopefully a B12 injection.
When they did an endoscope they did a biopsy for celiac and did blood work to check as well. Breads seem to sit pretty well with me too so I think the celiac is ruled out.
My diet change seems to be working as I am in less pain, especially in my back since I eliminated meat and started blending my food. Its not fun but better than the pain which was terrible. Protein powder even bothers me if I have a full scoop. I'm now taking both a pancreatic enzyme and a digestive enzyme OTC. Hopefully they can take some of the load off of my digestive organs and help.
Thanks everyone for your continued help and comments. Its nice to have a place to talk as not many people could ever understand what I am going through.
Thanks,
Cory