One patient with glioblastoma still alive nine years later
by FabianaB on Sat Jan 19, 2013 01:42 AM
Anyone else experience this?
I had my Whipple in June of 2010. After healing, I started having "episodes" of a weird and very bad overall feeling. I can feel it coming on in my stomach first. It's a full, slightly nautious & burning feeling. Soon it turns to pressure and a terrible overall feeling that goes from my stomach, up my chest and then radiates to my shoulders. I first thought it was heart trouble, but that has been ruled out. It feels SO uncomfortable and lasts for about 30-40 minutes. I often vomit bile and burp air while vomiting (sorry, but it is what it is). Sometimes a bowel movement helps relieve some pressure and soon after, the pain slowly subsides.
After all of this comes another troubling symptom....I start running a fever and experience severe chills with it. The fever lasts about 6-8 hours and once it breaks, I'm usually sore (from the fever), but other than that, I feel pretty normal again.
My doctors are perplexed and I wondered if others have experienced something similar? To me it seems like the burning might be bile reflux combined with gas, but I don't understand the pain in my shoulders or the fever.
With my 1st episode I went to the E.R.. I really thought it was the cancer coming back or something. They did a CT scan, an ultrasound, bloodwork & gave me some numbing liquid for the burning in my stomach. My ultrasound revealed nothing. My bloodwork revealed elevated liver enzymes and the CT scan showed a dialated bile duct. One month later, I had my 6 month checkup and they did another CT scan. This one showed my bile duct was back to normal. My liver enzymes are still elevated, but they told me that this is probably my "new normal".
I currently eat a regular diet and I don't take any meds for any of this. Ideas anyone? I just want to know if this is "normal" or if I should look into it further. It's been 2 1/2 years since my surgery and I've only had about 6 of these "episodes" during this timeframe....but when they happen, they are VERY severe and VERY concerning. There's nothing that feels normal about it at the time and my mind starts racing. I don't want to cry wolf by over-reacting, but I don't want to ignore something important either.
Thanks for any input you might have.
by rose108 on Sat Jan 19, 2013 02:28 PM
Could you be experiencing acid reflux? You mention you take no meds and eat pretty much anything. Did these episodes happen after a particularly spicy meal? Do you have a good GI doc? They are especially important after the whipple surgery. My surgeon warned of ulcers which are common after this surgery because of acid and bile reflux.
I know from personal experience that an acid attack can give you that terrible feeling in your chest, like you can't breath. If you don't need a daily medication, try tums or something like that.
Good luck and hope you feel better.
by FabianaB on Sat Jan 19, 2013 03:30 PM
I'm beginning to think it might be bile reflux as I don't normally have an acid problems (heartburn etc.) in my stomach. I hadn't had a spicy meal, but I had eaten an omlet & bacon about 2 hours before my "episode" yesterday. Maybe it's the fat from the bacon that triggeredan extra dose of bile or something.
My local G.I. is kind of afraid of treating me now that I've had a Whipple. My surgeon was at Mayo Clinic in Rochester (9 hour drive from here) and my G.I. doctor says if it gets bad I should probably have them see me. I've spoken with my doctor at the Mayo Clinic but they don't think it's anything for me to worry about. They think there might be some constriction from scarring that makes a large amount of bile difficult to pass through and some of it might back up into my stomach. Mayo says that as long s my bilirubin counts stay normal and the episodes don't become more frequent, I should be OK.
So, I try to relax about it....until I experience it again. THEN I worry all over again. I appreciate your information.
by CatherineAngus on Mon Jan 21, 2013 12:24 AM
Hi there, sorry to hear about your worry. Is it your right shoulder where you are feeling the pain? Our oncologist says that there is a nerve linking the liver to the right shoulder (from when we are born and our diaphragm is not fully developed...). Do check into this. Right shoulder pain and some elevated liver readings might indicate something should be checked there. A liver angiogram might be in order. Good luck and take care! Catherine
by shelby1 on Tue Jan 22, 2013 03:35 PM
Do you take enyzemes for anything? You know that fat can cause all sorts of trouble like this. You NEED a good gastro Dr. who will tell you how to work with fat and enzymes. Most Whipple patients I know of can't digest fats and are on enzymes. I'm surprised you are not on enzymes unless you're on a really healthy diet without much fat!
by FabianaB on Wed Mar 11, 2015 05:15 PM
Update on what was causing my "Episodes": I found out I had several blockages in my bile & hepatic ducts. My "episodes" would occur when an extra large stone was trying to pass through my bile duct. The stone would block the duct and I would get pain, fever, nausea, indigestion and the start of jaundice. The stones weren't visible on ultrasound or CT scans. We got lucky and the doctors noticed a "fill gap" in my ducts on a MRCP scan. That was their indication that there was some type of blockage. I've since had my "ductwork" cleaned out twice and each time all my symptoms go away for months. I've been told that my body likes to create stones, so I'll probably deal with this all my life. It's a relief to finally understand what the "episodes" were (there was always a concern that it was reoccuring cancer) and that there is something I can do about them. I hope that maybe this might help someone else that is experiencing something similar.
by CLAREM on Wed Mar 11, 2015 05:25 PM
I have heard that there is some way to disolve stones with diet...I am not familiar with what changes you make to your diet but that would be the best avenue to study
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