Same Day Different Shit?

I just got back from my gastrointestinal doctor appointment. First let me back up a bit.

Back in August, I started having some mild abdominal pain, right around the time I also developed a sore throat (after Don had a cold or something for a week). I figured the bellyache was just part of the virus. The throat was better in a couple days, I never really got a full cold or flu, but the bellyaches continued, gaining intensity each day. About two weeks later, I went to the emergency room to check for anything serious.

Many weeks, doctor visits and tests later, I have learned:

1. that my gallbladder is only working about half as well as it should be (it's not contracting) though no obstructing stones were found, and

2. that I have gastritis "with erosions" that is not caused by the usual suspect H. Pylori bacterium.

As the weeks and months went on and the pain continued, I started looking into various theories about what could be going on in my body. I've pretty much gotten nowhere with that. All I knew was that I kept getting pain in my upper left abdomen, usually with episodes that liked to happen around 2:30pm for some reason, among other times of day and night.

More recently, I found a new GI doctor who prescribed a proton pump inhibitor (acid reducing drug) to see if it would help the pain by easing the gastritis. I was delighted to report that after three weeks on this drug, I felt super! I thought the ordeal was over with and celebrated a bit. (When you have Fibromyalgia, any bit of pain relief is an occasion worth celebrating!) I reported the success to my doctor via phone and he instructed me to continue the prescription for another month. If I continued to feel better, I could start weaning off it then. Alas, the bellyaches were only gone for about a week or two before they came back, but slightly different than before.

Oddly, I believe it was the day after I'd called my doctor that I started feeling abdominal pain again. This time, though, it was more in the general, lower abdominal area, and came with a widely varying array of "interesting" stools as well. I called the doctor again to let him know how I was feeling and he called in a new prescription for me to help stop my guts from having spasms, which is what he suspected was going on now. He further explained that, sometimes, when a patient has upper abdominal pain for a long time, even when it is relieved, the other abdominal areas can become more sensitive to pain. Since I'd been diagnosed with IBS in the past, he wanted to treat with a best guess strategy and see if it would help.

That same morning I discussed things with my doctor and he phoned in my prescription, I picked it up and started taking it before meals and before bedtime. By some odd coincidence, I also started having the wateriest stools I've had in years... every day, many times a day, and even waking up at night with this. Currently, I'm dealing with a constant abdominal pain at a level of 3 or higher most of the time, escalating up to about level 8 or 9 several times a day. I'm always in pain and I have lost my appetite a bit and started eating a lot less. (Plus, when you have painful, crampy, diarrhea for a long time, you quickly learn that if you don't eat, you poop less.)

So anyway, now back to today's visit. I saw my doctor and we discussed my progression of troubling symptoms. He says the proton pump inhibitor I'm taking for the gastritis can make some people susceptible to bacterial infection in the colon. Before jumping to antibiotics, however, we need to confirm that this is the case - with everyone's favorite lab testing method: the ever-popular stool sample. Oh boy. My nasty smelling "poison" poopy will be tested for four different kinds of infection, including the one that tends to occur with the drug I'm on. If it comes back negative, he will go with the next best approach, or possibly have me do imaging or other testing.

Guts problems are hard to diagnose. A lot of things can cause abdominal pain. Some of those causes are serious and others are fleeting. Many bacterial infections just run their course and die off after a time, too. It all depends on the test results.

While I wait for test results, I was instructed to take probiotics again (I'd stopped months ago, on the advice of a previous doctor before we knew of the gastritis), start taking some Pepto-Bismol for a couple days and see if that helps. If it doesn't, I was told to switch to Imodium.

I'll report news here once I know more.

Bellyaches: I'm Not Out of the Woods Just Yet

Just when I thought my gastritis was healing nicely and behaving well, the bellyaches started up again, even though I'm still faithfully taking my Dexilant every morning.  The ironic thing is that just last Monday, I called into the wonderful gastroenterologist who prescribed the Dexilant for me and reported how great I've been feeling.  He told me to keep taking the proton pump inhibitor for another month, and if I still feel well, to start tapering off by taking it every other day, then every three days, etc. and see if I can get off the drug.  He warned me that, unfortunately, most patients do start to see a return of symptoms as the dose decreases, so I should make sure I note any changes in how I'm feeling. 

But I haven't even started decreasing and I'm starting to feel kind of icky again.  Luckily, I haven't had the dramatic bloating and cramping episodes in the past few days (thus far), but I've awakened with moderate abdominal discomfort, sometimes with headache, sometimes with nausea. 

It started with a restless night on Wednesday morning.  I have been able to sleep relatively well (for me) about a month before this all started up again.  But Wednesday morning, I felt miserable and had to call in sick.  I had a busy day planned for Thursday and went ahead with it all, despite feeling worse than my usual level.  And today I managed to drag myself to work despite feeling a bit distracted with pain and discomfort of various kinds.  I have plans to see my parents tonight, too.  Even though I am not really up to a social visit tonight, I'm going to force myself through it because they haven't seen me since Thanksgiving and are begging to see me. 

The worst part about the bellyaches being back is the worry that the gastritis isn't healed, or that the reason I developed gastritis has not been addressed and perhaps it's getting more agressive to compensate for the lower acid levels from the Dexilant. I still worry about that faulty gallbladder of mine and whether it's the cause or just another effect of something else going on. Will I need to change meds?  Will I have to start thinking about the possibility of removing my gallbladder again?  The mysteries of my own body continue to confound me.

In the meantime, I need to cope.  I feel like I've dropped the ball on my coping mechanisms.  Am I forgetting some lesson that I'd learned earlier?  I am still keeping up the baby steps workout (I'm on week 10 now!) despite my symptoms.  Perhaps I need to remember how to pace myself again.  I have been busy for the past couple of weeks with extra commitments and things.  Maybe I need to take the weekend off and try to relax a bit so I can recover for Monday. 

What a life!

Bellyaching and Stuff

On November 12th, I had an EGD performed.  Gastritis was detected, but no ulcers or other abnormalities, and a biopsy test revealed no H. Pylori is present.  In the absence of any other clues, including no gallstones and no gallbladder inflammation or infection, the GI performing the EGD warned me to ease off the NSAIDs (like Aleve, which I use only for more severe headaches/migraines and very rarely as an alternative pain reliever for hip pain or joint pains that may have inflammation) and consider gallbladder removal if my pain episodes continue.  He didn't seem very tolerant of my many questions, despite the fact that my case is not clear-cut for gallbladder removal.  So I sought out another GI for a second opinion.

Last Monday I brought all my test results and questions to the new GI and he was much more helpful to me.  He listened to all of my symptoms and concerns and agreed with my opinion that gallbladder surgery seemed not to be the clear answer to my problems.  Not only that, he actually commended me for being "proactive" about my own health and bringing all my documentation with me.  This is how doctors should be!  (Special thanks to my niece for recommending him to me.)

Anyway, his best guess for a diagnosis right now is functional dyspepsia, which he explained can be quite common for people who also have IBS or/and Fibromyalgia.  It is not the same as IBS, which I have dealt with before, but much like IBS, it is a condition that turns out can be difficult to live with, but is not likely to cause permanent damage.  He is having me try some acid reducing medication (Dexilant), since my pain seems to be more on the stomach side rather than one the gallbladder side of my upper abdomen.  

I was also given a pamphlet called "Gas and Flatulence Prevention Diet" which discusses foods that can cause gas in some people, and the science of bloating, which can get ridiculously severe during my pain episodes.  There is a breakdown of various foods by groups that can be problematic, but each person is different so finding out if any of them make my problems worse is going to take some trial and error.  The doctor suggested I try to eliminate one food or food group at a time and see if there is any change either with elimination or returning it to my diet.  He made sure I understood that he was NOT suggesting avoiding all the problem foods at once, or else I'd have pretty much nothing left to eat.  Looking at the list, I see why.  It seems the only food group that isn't listed as a potential troublemaker is lean meat.  I'm documenting my diet and symptoms, so I can look for new patterns I may have missed.

Lastly, he suggested that I try to eat smaller, more frequent meals, avoiding large meals.  The reasoning behind this suggestion is that some people, especially sensitive folks like us fibromites, don't tolerate the sensation of the stretching of the stomach well, and it can feel painful.  To minimize on the stretching, I could try grazing little by little throughout the day.   It's hard to have half a meal here and there, especially if you want something hot, but I understand the logic and am glad he gave me so many options and ideas with explanations.

He left me with one last bit of advice before my next appointment: find a way to cope with stress and my annoying symptoms so I don't slip into a constant state of worrying about the next flare up.  I believe he was talking specifically about the abdominal pain, but I know this is also important to keep in mind for the rest of my Fibromyalgia symptoms and life in general.  I do what I can with journaling, blogging, and reaching out to others in need, knowing I won't always have it all under control.  There are days when the symptoms just pile on and I get downright cranky or fed up, especially when I have to miss work and get behind on my duties at the office, but the reality is that I'm stuck with much of this bad luck and need to buck up and do what I can to find my own happiness wherever possible.  I'll definitely keep working at this.

HIDA (Hepatobiliary) Scan Results - Not Good

As you may recall from this post, I've been dealing with some mysterious, intermittent abdominal pains since August 9th of this year.  At first, it was just a discomfort and I blamed a virus I'd apparently caught, since I had a sore throat for a few days after my husband got sick.  However, the pains continued and I couldn't make heads or tails of the cause or triggers.  

On Friday, August 20th, I was at work when a particularly painful episode snuck up on me that afternoon.  I headed to the Emergency Room.  The tests came back mostly normal, but the abdominal ultrasound revealed "possible sludge" in my gallbladder, which my internist doubted could have anything to do with my particular kind of pains.  The gastroenterologist I saw on his recommendation had me try skipping my probiotics for a while.  When that didn't work, he ordered a HIDA scan to check my gallbladder and liver functioning, as well as an EGD to check things out, since my blood and urine tests revealed nothing.  

Meanwhile, per Don's suggestion, I had stopped drinking the water and coffee provided in my office by my work.  Our building was built in 1976 and I noticed a long time ago that on Monday mornings, the water from the kitchen sink really stinks, even after washing and drying my hands.  Our drinking water is UV filtered, and doesn't stink, but I've learned that UV doesn't remove all contaminants from water.  I also noticed that I wasn't having episodes on the weekends or on days when I'm not at work, which we both thought was a strong case to avoid SOMEthing at work.

So, as of Wednesday, October 27th, I believe, I have been avoiding the work water (I bring my own supply in a thermos), and for the most part, I've been without my afternoonly abdominal pain episodes (that start around 2:30pm or so).  I started looking into possible contaminants that may be affecting me, though apparently not all of us in the office are doing as poorly as I am.  I'm open to the possibility that my body has some defect that makes me especially susceptible to problems.  At any rate, I brought this list of possible drinking water contaminants and their health effects to my fibro doctor and told him about the absence of abdominal pain episodes while not drinking work water.  His immediate suspicion was excess copper from old plumbing in the building, possibly causing problems in my body.  He urged me to discuss the problem with my work and get the water tested.  

(He also suspects formaldehyde in the air (from old insulation) or some other air contaminant that could be contributing to my daily voice degradations that also happens only on days I go to the office.  But that's another story for another day.)

I brought my concerns to my human resources manager and urged the company to take some action to find out if the water is safe - not just for myself, but for the entire office.  She agreed to look into it.

In the meantime, last Tuesday night, around 5pm or so, I was in the office, both shivering and sweating at the same time, wondering if I'd caught the flu or was having a fever for some reason.  I went home to rest and still felt awful in the morning, so yesterday I stayed home, still unsure what's going on.  I even had to run to the bathroom for fear of vomiting, but it wouldn't happen.  Then, oddly, for the first time after a couple weeks now of not drinking work water, my abdomen was in severe pain.  I couldn't even straighten up to walk.  I was also starving, so I fixed myself a healthy lunch salad and tried to rest a bit.

Well, yesterday was also the day I got a call from the gastroenterologist's office regarding the test results from my HIDA scan.  I expected to hear that all was normal, especially since a nurse was calling to report the results (and not my doctor), but she said my gallbladder isn't functioning  very well at all.  My ejection fraction was measured to be 16%, which is less than half of a healthy gallbladder - 36%.  She also said that I should have my gallbladder removed because of this.  I gasped.  I was so shocked to hear all this.  She couldn't tell me why my gallbladder contractions are not effective.  I had to have another ultrasound just before the HIDA scan to ensure I didn't have gallstones, so I assume I still don't.  However, nobody reported about that test.  I asked for a copy of the test results to be mailed to me so I can see all the details.

While I wait, however, I did a search on copper and gallbladder and found that excess copper in one's system can cause a gallbladder to become ineffective.  Not only that, too much copper in one's system can cause all sorts of damage, including liver problems and neurological symptoms.  Wilson's Disease also came up a lot in my research.  It's a hereditary disease that causes the patient to be unable to rid the body of excess copper, and if left untreated, can be fatal. 

I decided I need to understand what's really going on here.  Is my gallbladder just faulty for some reason, or is something causing it to fail?  Is that something too much copper?  Is this copper coming from drinking water?  Can I treat this, or do I really need to remove my gallbladder?  Will removing my gallbladder solve my problems, or only remove one of the symptoms of my bigger problems?  What the problem stems from brain damage from my concussion?  Is there any way to find out if that's the case?  Can anything be done about that, if that's the case?  Will anything else go wrong if that's the case?  Is any of this related to my other symptoms, like the new Erythema Nodosum on my legs?

I sure hope medical students are required to take some detective classes in med school, because I  require some deduction and thinking to be done.  I'm not willing to go under the knife so easily.  I've read that up to 40% of patients who have had their gallbladder removed continue to experience abdominal pain and nausea.

I would love to have an easy, cut-and-dry diagnosis that makes sense and for which removal of my gallbladder would solve my problems, but I'm not convinced of this yet.  Stay tuned as I learn more about this all.  If you have any experience with any of this, please feel free to share.