Does anyone experience times when my blood levels are normal; but i do not feel any better.
The pain, nausea, etc… are still present. Don’t get me wrong I am very happy my blood levels are normal; but i just do not feel any better.
ANY ADVICE?
I had a pseudocyst and the suggestion was to wait and watched. Fortunately it eventually went away.
Glad to hear I am not the only one tired all of the time.
I’ve learned over a year of being very sick with chronic pancreatitis that when I have acute flares, often the labs look normal. It’s when they elevate that it’s confirmed, but definitely doesn’t mean when you have all the other symptoms that you’re not having pancreatitis. After a while you just know when that’s what it is. I’ve had labs, scans, etc. all look fine while I’m throwing up, in terrible pain-- even passing out from pain, losing weight, etc. It’s become an unfortunate but regular thing. Mine is idiopathic (no known cause)-- and seemingly no cure.
Hope this helps!
All the best–
Lisa
Here’s a hug, too. I know how hard it is!
L.
I hate it when I am in such pain and my labs don’t confirm anything. I have had doctors look at me as though I was crazy. When I finally get through to a good gastrointerologist it is ok, but some er docs don’t have a clue.
What about fatigue? I get so tired of being tired.
This is me; back pain, throwing up, constant nause, NO ENERGY. and then my labs and all tests come back normal. In August this will be a yr for me… i am so tired. I am starting a new med OMERPRAZOLE (does anybody take this)?
Lisa
This “tired” thing grabbed me! Gosh! I thought I was just not sleeping at night and therefore, tired during the day – ALL day! When I work, being tired is nothing new, but I haven’t worked in five months! I’ve tried a multi-vitamin plus iron, but that’s really about it. I think I read somewhere about B-12 shots? Do they help? Any suggestions?
Oh! Green tea! Drink it often. Seems to have aided my sometimes painful and upset stomach a lot – plus, it’s full of anti-oxidants!
Here’s to good health!
Flyboy73
I have been there to very sick in lots of pain and my blood leves are fine. I to belive you can have a attack and your blood not show it. My gi doc is great and she to said my blood levels dont mine that much when i’m in pain and sick she to belives i’m having attack. Green tea is good i found it helps me to. Hope you are doing better.
Joe
Has anyone had a pseudocyst develop and treated? I have a very large one – 11cm x 6cm, which developed 3 weeks post event last December. One doctor said, “operate!,” while another specialist at Duke University Medical Center says, “wait and watch.”
I’m asymptomatic, pain-free and living a normal life, but this pseudocyst thing has me bugged.
Anyone had their’s successfully treated and was the surgery awful?
Thanks, and good health to all!
Flyboy73
I had two pseudo cysts 5 years ago. I was in the hospital for 2 weeks on what I called my liquid gourmet diet. (through an IV - no food) No surgery. I’m sure treatments have changed over the past 5 years.
Try to find a “Whole Health” type of service and go for B vitamin infusions. Also, Iron infusions become necessary as time progresses but these must be prescribed and are normally done in hospital pheresis units.
Patrick
Watching is a reasonable strategy relative to surgery. My wife had cysts
for over five years before IPMT was discovered and they did the surgery.
You need to as lots of questions… be persistent. The cysts can be there
for a long, long time with no trouble but the surgery is permanent and
difficult.
Patrick
Thanks for the replies about pseudocysts everyone! I appreciate the input a lot, as surgery is the LAST thing to consider -- for me. Right now, anyway. I guess I'm lucky in that I have no pancreatic dysfunction now other than the initial onset of severe acute pancreatitis last December. All labs are within normal limits, I'm feeling great and back to a normal routine -- just not back to work flying, yet. My doctors all laugh because I go into my appointments with my partner and my notebood with a list of questions and start asking away! If I don't understand something I ask them to translate into language I understand, then give them the okay to proceed once I understand what they're talking about! So, yes, it's all about asking questions, becoming our own experts and hopefully finding a team of doctors with whom are willing to discuss options and work with us to develop a care plan which works for us individually. One thing about this disease is, we're so alike in so many ways, but each case is really completely different!
I continue asking if there's a cyst the size of a baseball inside my abdomen and attached to such a vital organ, how can that be normal and how can it simply resolve and go away on it's own? I know the cysts are very fragile when they first develop, that's why surgery is usually not an option right away unless patients develop complications. The two specialists I've seen both say it's best to let these cysts "mature" (calcify / harden), then see what happens and treat symptoms "if" they present. I guess our bodies are amazing organisms and miracles happen every day! I'm keeping up in my quest to discover more information about this disease, keeping a positive attitude and being keenly aware of my body every second! I have another CT / US scheduled this week at Duke, so I'll keep you posted!
If anyone in the Raleigh-Durham, NC area is interested in finding a FANTASTIC doctor at Duke, let me know and I'll be happy to provide his information!
Thanks to everyone again for taking time to respond to my questions! This board and the people here are truly amazing and totally inspirational!
Here's to staying healthy, staying positively focused and pressing forward!
Best,
Flyboy73
I have also had normal and abnormal labs, however it seems I have had normal labs the past few attacks I have had. I got Pancreatitis from complications from and IRCP done after gall bladder surgery. I am in the middle of doing battle with an awful attack right now. Just got out of the hospital. I had been unable to eat or drink anything for 5 days, and passed out giving myself a nice concussion to go along with the already unbearable pain in my guts. I’m not glad that others have this dreadful thing, but I feel better that maybe I’m not crazy when I’m in the bathroom wretching my guts up and unable to even lift my head. I have an appointment at Vanderbilt in a week or so, and apparently they aren’t afraid to treat young women there. (Found that to be a real problem.) As for the best anti nausea drug, Zofran or Kytril are the only ones I can take that I’m not alergic to. I’ll keep yall posted on the Vanderbilt thing. At this point, I’m going on 2 weeks not eating. Living off ensure and white cranberry juice, and it sucks! I live in Poe Dunk TN, and the healthcare here, blows! I hear good things about Vanderbilt. BTW the green tea thing is ok, but it tastes like you just made tea out of the freshly mowed front lawn. LOL, so I am on the cranberry juice kick. My sense of humor is at least still in tact…for now.
Kelly in TN
I have also had normal and abnormal labs, however it seems I have had normal labs the past few attacks I have had. I got Pancreatitis from complications from and IRCP done after gall bladder surgery. I am in the middle of doing battle with an awful attack right now. Just got out of the hospital. I had been unable to eat or drink anything for 5 days, and passed out giving myself a nice concussion to go along with the already unbearable pain in my guts. I’m not glad that others have this dreadful thing, but I feel better that maybe I’m not crazy when I’m in the bathroom wretching my guts up and unable to even lift my head. I have an appointment at Vanderbilt in a week or so, and apparently they aren’t afraid to treat young women there. (Found that to be a real problem.) As for the best anti nausea drug, Zofran or Kytril are the only ones I can take that I’m not alergic to. I’ll keep yall posted on the Vanderbilt thing. At this point, I’m going on 2 weeks not eating. Living off ensure and white cranberry juice, and it sucks! I live in Poe Dunk TN, and the healthcare here, blows! I hear good things about Vanderbilt. BTW the green tea thing is ok, but it tastes like you just made tea out of the freshly mowed front lawn. LOL, so I am on the cranberry juice kick. My sense of humor is at least still in tact…for now.
Kelly in TN
I too can have normal labs during an attack. I was told that after you become chronic that happens. But when it is really acute they jump up quick.
My GI says there are studies on antioxidants to help with the inflammation in the pancreas. I’m using super antioxidants and grape seed extract. It I am regular with them, they do help some, or they make me “think” they are!
Liz
My thoughts are with you.
Any input: 2 wks ago i had a cyst burst on my ovary; yesterday again a lot of pain the family dr. did a urine test and i know have a UT infection along w/ kidney infection.
I also had a UT infection with this latest attack. I think it may be because dehydration played into it. Staying hydrated has been a real problem for me. I’m having to sip something slowly ALL day long in order to stay functional. Can’t put too much in my stomach and I haven’t had solid food in about 2 wks. I am going to Vanderbilt on the 25th for the full roto rooter treatment. I’m dreading it, but looking forward to getting some answers. Key is to find somewhere they will actually treat pancreas problems, especially in young women. (I’m 37, but still like to think I’m pretty young…lol) I have also had ovarian cysts, and I have found that a lot of the time, Dr;s will say they think it’s an ovarian cyst when they can’t really diagnose anything else. However you know you have had cysts rupture, that will be the first place they look to diagnose abdominal pain in a young woman even when you KNOW that’s what the problem is. Be sure you are able to keep up with your symptoms, and just let the Drs know that YOU are the authority when it comes to your body. I had to FIGHT with my PCP today, and it was not pretty. I did all the research, and found the clinic at Vanderbilt, took care of my insurance, spoke with the clinician who understood EVERYTHING I was telling her and knew I needed to be seen. The only thing I needed was my Primary Dr to refer me. I couldn’t get her to return my call. It took 2 days, and then finally I just went to the office and said I needed to see her. Long story short, I forced the issue, and got it. Don’t give up!!! Be persistent, love your life, and fight if you have to. I know it’s not easy. Been throwing up for 2 weeks now, but at least now I feel like I’m in control and on the right path. You know when things aren’t right. We all have each other, and the sharing of information is our BIGGEST ALLY.
Hope it helps 
Kelly in TN
Everything u said makes sense…what/where is vanderbilt?
Vanderbilt University is in Nashville TN. They have a clinic there that specializes in Pancreatic Disorders, Biliary Disorders and Hepatology. I live about an hour away from there. I’m excited because I feel like I going finally somewhere someone KNOWS what they are doing. I may have also have a common bile duct injury from my gall bladder surgery, and if so, they can treat it all.
Kelly In TN