I just realized that I never posted the whole history on what I went to for 2 years prior to having my gallbladder out. I read blogs from other people asking about what problems other people have had and also what surgery was like…….and I can forward them to my blog but it doesn’t tell the WHY, other than than that I had nausea pretty bad for a while. This is taken from an email I sent someone who asked me a few weeks ago what my whole gallbladder history was. By the way, I am STILL struggling with why it took 2 years of CLASSIC gallbladder symptoms and no one (family doctor, ER doctor, gastroenterologist, and gynecologist) ever figured it out and it was only when I basically INSISTED that it was my gallbladder that the right test was ordered and here I am 10 days after gallbladder surgery with NO NO NO nausea! Well here goes……..this is the two years of doctors and tests and a bunch of guessing that I went through that brought me to today. If you read the blogs AFTER this then you will be brought back to the last 10 days and what surgery and post surgery has been like………..for those of you who are curious.
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Okay, here is my story……….for what it’s worth! I am 51. I have always had some heartburn issues………well not always I guess, but throughout my life off and on. As close as I can remember, about 2 years ago I started with more than just indigestion but nausea along with it. It probably started out a couple times a week but then more frequent and I told my family doctor about it after a while and he referred me to a gastroenterologist. This all started happening prior to the Spring of 2007 and then finally in Spring of 2007 the doctor finally asked why I kept having nausea and why he had to keep prescribing phenergan for it. The way it happened is I had some Vicodin from having a tooth pulled and when I take Vicodin I have to take Phenergan (a narcotic for vomiting) because it makes me sick. The dentist gave me some Vicodin and thus Phenergan for a toothache/root canal a while before this and so then when I started having some nausea I would try Pepto tabs but when they didn’t work I would then take Phenergan. I ran out of the Phen from the dentist so started to ask my family doc for some. Fifteen or so would last me a few months but then I would have to ask him for more and the requests would be more frequent. He finally started asking me more about what was going on and then in Spring of 2007 when it was getting to the point that it was really interfering with my life happening several times a week he started pursuing it. He referred me to the gastro guy and I think I set up that appointment for June. In the meantime, I asked family doc if he thought it could be my gallbladder and he said yes it could be so he scheduled a gallbladder sonogram in April of 2007 which was negative for stones (which is all a sonogram will show apparently). Gastro doctor wanted to do an endoscopy on me (putting the tube down my throat and looking at things) and also since I had turned 50 he would do a colonoscopy at the same time. Since it was almost vacation time I decided to wait to schedule it and got back from vacation and well you know how it goes, I didn’t schedule it.
So then in the beginning of November I was up ALL night one night with terrible nausea and then increasing heartburn and chills. Nothing worked……..Pepto, Phenergan, Zantac, crackers, dry bread……..you name it. I woke hubby up at 5 a.m. and said we better go to the ER because at my age, family history, and those symptoms, it COULD be heart related. We get to the ER and they agreed it could be heart and said it was smart to come in and they did all the heart stuff including EKG, x-ray, blood work, etc. Everything came back okay for heart. Doc comes in and asks how I was feeling and told him still felt sick to my stomach and he said with the meds they gave me (I don’t remember how what it was in the IV) things should have settled down and he was puzzled. They gave me a GI cocktail (mixture of some GI stuff plus some numbing agent) and although it calmed things down a little, it did not clear things up and they said it should have. They said I needed to have that endoscopy so I left ER after a few hours, call the gastro office, and they said they could do it 2 days later so I had it done at a same day surgery thing. He found nothing………..which was a good thing in a way, but it didn’t help my nausea. He put me on Nexium 40 mg twice a day and I got some relief from that, in fact almost complete relief for a month or so and then bingo, back to some nausea.
So sometime after that, maybe late Nov or December, I talked to my family doc and said that I had been reading where ovarian cancer can cause some of the same symptoms of bloating and nausea and he agreed and took blood for the CA125 (ovarian cancer screening) and sent me for a female ultrasound. CA125 was fine which is a GOOD thing because if that is positive then you definitely have ovarian cancer. The sono showed a cyst which can be nothing and some vague other stuff, but the findings of what they saw organ wise was inconsistent with what my hysterectomy in 2000 was where they took everything out except one ovary. After a couple months I got my records from my surgery and finally went back to my family doctor and because of the inconsistencies in what sonogram showed compared to what surgery results showed he sent me to a gynecologist who also was puzzled. By the way, as a side note, I am kind of getting confused on my timing here but the gist of this whole thing is right…………and during this whole time the nausea is getting more and more frequent. Anyway, the gynecologist wanted another CA125 because it had been a few months and she sent me to a different place for another female sonogram because they specialize only in women’s stuff and she felt it would be more thorough and complete there. Well the repeat CA125 was normal and the sonogram was consistent with what should be there and the right side for my surgery.
So…………..rule out female stuff as the cause of the nausea as well as stomach or esophagus and no gallstones. Oh, I forgot to mention that all along each doctor (family, gastro, and gyne) said it COULD be hormonal when I suggested that it almost seemed like it was sometimes because it could happen a couple hours after I ate just out of the blue. During all this I kept telling all of my family and friends that I truly felt it was my gallbladder because I had all the symptoms everyone else with gallbladder problems that I knew had, but the sono was negative so I guess that wasn’t what was wrong. But somehow I knew it was……….I told hubby all the time that it was my gallbladder!
So………..I am back to square one, nausea is increasing and no one knows what it is. The gastro doc keeps me on Nexium 40 mg twice a day even though that is a large dose and finally at one (April maybe?) asks me to TRY to go down to just one a day. I tried but no go………..was better on both. So at the next visit 2 months later (mid June I guess) you could tell he was puzzled because now the nausea is increasing despite the Nexium but they have no diagnosis so he asks me if I would be willing to try a low dose of an antidepressant which seems to help in chronic pain and chronic anything cases. I said I would TRY it but I didn’t really relish the fact of being on them. I tried it for a week………..it was great because I needed so much less sleep yet felt so much more rested………..the nausea decreased………..and my appetite decreased so I was losing a few pounds, just in that one week. But………….I couldn’t be in the sun or get hot because I got really lightheaded and overheated and red faced and well it just wasn’t going to work for the summer and also going to Myrtle Beach in a few weeks so stopped taking them.
I happened to have an appointment with my family doctor a couple weeks later at the end of June and I told him I meant to ask the gastro doctor this but forgot, so I was going to ask him. I wondered if there was any chance there was something wrong with my gallbladder even though the sonogram was negative. He said yes, it could be that there are no stones but it isn’t functioning properly. He told me I could have a HIDA scan where they would inject me with McDonald’s French fries! He said not actually, but it would simulate that. I said okay, let’s do it……….because I feel that is my problem. He said he agrees because just like pursuing the ovary thing, if it all turns up negative then at least we will know that it isn’t my gallbladder.
Since I was going on vacation in a couple weeks, I scheduled it for after vacation. On July 29th I went for my HIDA scan. It doesn’t hurt unless you think getting the IV hurts. This is what happened. I got there and she put the heparin lock thing in my arm through which they would give me everything else so that I didn’t get poked more than just that once. I laid on a skinny table and an x-ray like machine was positioned over me, not touching me, but just above my abdomen. She injected nuclear stuff through the hep lock and I felt nothing except maybe a slight metallic taste in my mouth. I had to lie perfectly still with my arms above my head for an hour while the machine did its thing. The worst part of it was boredom. In fact, I have had MRIs before and they make lots of noise and this one makes NO noise even! She said it is taking computer pictures of that nuclear dye going through to the gallbladder. Okay, so the hour is up and since my gallbladder sonogram had been 15 months prior, I had to have another one because they wanted to make sure there were no stones before doing the next part of the test. So over to ultrasound and get that done again and no stones so back to nuclear.
At this point she puts an IV (bag of saline) into the hep lock. She put me back on the same machine and it worked for just a few minutes and then she injected through the IV the CCK or whatever it is called…………but basically it is an enzyme that mimics fatty foods. She told me this time I would be lying there for 15 mins and I may feel some nausea and cramping. After about 15-20 mins I started getting nauseous. I hated it because when I get nauseous all I want to do it put my head down or lay down on my side, but here I was on my back and had to lay flat and not move and that sucked. She said the nausea would go away in a few minutes and it did go away after about 5-7 minutes I would say. I think the saline IV helped flush the enzyme through my system. She said “is that the same feeling you get all the time” and I said “yes, exactly”. Right then and there I knew it WAS my gallbladder! Of course no results until my doc gets the results.
So this was on a Tuesday. Thursday I get a letter from my doctor and I open it and see “normal” and think GREAT, now what? But then I read further and that was only the sonogram results………..and that just meant no stones and I knew that. The next day I get another letter and I slowly open it and then I screamed “YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!” and my husband asks what and I said “IT IS MY GALLBLADDER!!!!!!!!!!!!!!!!! I KNEW IT! I KNEW IT!” He thought I was nuts! But he understood. He thinks I am nuts that I am excited about having to have surgery! But after all this time FINALLY something that can be done to give me relief! Basically the injection fraction which is how good the gallbladder is getting rid of the bile it is storing from the liver was 13%…………and for my age it is supposed to be 60% to 70%. In a nutshell, my gallbladder is barely functioning and the bile is staying in there and making me sick.
So I went to a surgeon who couldn’t believe I had nausea all that time and finally found out it was my gallbladder. You should have seen his face when I told him all the tests I had done and that the ONLY reason I had the HIDA scan was because I asked for it! He said his is CONFIDENT that removing it will make me feel 95% better. I’ll take that! The only reason I am waiting until 9/29 to have it done is because we have tickets for games and concerts and also my daughter is visiting here next week looking for job and apartment and then moving here mid September………..so basically that is the first I can fit it into my schedule and since I have been sick for 2 years, what is another 2 months?
Sorry this is so long but it’s kind of a complicated web of a couple years. Oh, by the way, I figure now that the ER visit last November was a bad gallbladder attack, yet no one figured it out. That is kind of bugging me, considering the gastro doc was at wits end not sure what to do…………yet if you read about gallbladder symptoms on the internet I am classic gallbladder. Oh well. What can I do? Well for one thing I WILL be an advocate for patients knowing what is wrong and hoping doctors will listen!
