E.coli, H pylori, ulcer, reflux? Did I win anything?

yeh, my husband's monitor was like 20 years ago, can imagine that technology has forged ahead, LOL! sounds like your doc is on top of it

"anxiety that only manifests itself in one's body": fortunately for me, it only lasted a few months in fall 2009, then much less in fall 2010 and fall 2011, but when my rib was stuck under my shoulder blade, "pressing on nerves in between", my body went into what i can only describe as "physical panic attacks". i say "physical panic attacks" because my heart would pound and my body would stop digesting its food. and it was from the pain / the nerves being compressed, because if i could get some relief from ice, ultrasound, walking, then as the pain subsided, so did those physical symptoms. i was reluctant to use the term "physical panic attacks" with any but the doctors i trusted the most because i was afraid they'd only hear the words "panic attack" and think it started in the head, vs starting in the body. so i just described the physical symptoms to most, but really it did feel like the physical symptoms one gets with panic attacks (from what i've read) but without any of the "mental" aspects. it was more like an out of body experience where my body was reacting and my mind was saying WT?

as for the weight loss, when my gastritis flares or i'm in severe pain then my bowels "flare" meaning i end up with loose bowels / diarrhea where i can identify my food (mainly fruits and veggies) out the other end. its like nothing is being digested, like my bowels have just stopped functioning. the only time that really happens is when i'm in severe pain. even with the gastritis (after the same thing happened with the back pain) i wonder if it was simply the pain of the gastritis and not the gastritis itself causing the bowels to stop functioning. and each time i lost weight very quickly. not a great diet plan! and the last time it happened, i made sure i got a before and after vitamin D blood test, and sure enough, the vitamin D which had been going up slowly with supplements, came crashing back down from 60 to 40 in a matter of weeks, maybe a month tops. that's when the doctors and i knew for sure that not only was i not digesting my fruits and veggies, but probably little else at that time. no wonder i developed osteopenia and other things like that over time.

more recently, and more lifelong at times, has been the constipation. but at a young age i was able deal with that much of the time, lots and lots of fiber from fruits and veggies, lots of water, lots of exercise. that worked for the first 45 or so years of my life. but the probiotics now work SO much better!

stomach issues: gastritis --> ulcers --> stomach cancer.
as is the progression in my family.
now with modern medicine (prilosec), no longer do we go down that route, now its mostly gastritis (me) with the occasional ulcer (mom), whereas in the past, an aunt that died from bleeding ulcer, great grandfather that died from stomach cancer. if i didn't have the prilosec, i can only imagine how much worse my stomach could have been, based on family history. mom too.

h. pylori can also cause these things. and yes, Marshall and Warren did win the nobel for that discovery. and in a lot of cases, that is the cause of ulcers. but what they did for the field, more than anything else IMHO is to take ulcers from a "you poor thing, you are so stressed" to physical causes like bacteria, nsaids, or for us, inflammatory disease.

in 1993-1994 when i first developed my gastritis so severely, the NIH came out with a statement just a few months into my problems, stating that the cause of almost all ulcers were either h. pylori or nsaids. for me, i knew it was something genetic. at the time thought maybe we had a weak mucosal lining or something. then once i developed the inflammation in my joints (tendons / ligaments) realized it was all related inflammation. now often the GI and joints flare together.

so while it could be bacterial for you, and if i were you, i'd get tested for h. pylori if you haven't already done so, it could also be like for me and just be the body doing its typical inflammatory thing. for me, the genetic link is so strong, its pretty obvious. for me, my stomach is better than most of my relatives (i'm assuming because a little gastritis (as observed by endoscopy) leads to a lot of pain so i can treat it before it becomes too bad. and too because of modern medicine and modern drugs that my relatives did not have access to), but my enthesitis has been the worst of anyone in my family, similar, just worse. mom always chalked up her arthritis to being in a motorcycle accident, working in a glass factory, etc. and thought the stomach issues were simply from the ibuprofen, then aleve, then celebrex, but really could be the combination.

anyway, just relating, and saying yeh, a lot of it sounds familiar.

Hey Gilth,

My erratic heart behavior was brought on by a reaction from taking Enbrel. It stopped my heart 4 times in the 4 weeks that I took it. After that, and after stopping the medicine, I continued to have episodes of irregular palpitations that would last for 10-20 minutes.

I read up on a few natural things to do for heart problems and vitamin E has been the most helpful. I take 1000iu daily, and if I don't ever miss it, I don't have palpitations at all. If I miss it for a couple of days in a row, they come back. Here are the articles I read about vitamin E and heart disease:

http://www.doctoryourself.com/heartdisease.html

http://www.doctoryourself.com/hoffer_shute.html

Take Care,
Donette

Wow you sound like me! I'm so sick today with IBS I didn't think I could make the six mile trip to work!! good thing I manage a Hotel I have plenty bathrooms to choose from!

psyllium has helped me "hold it together" when things have gotten really bad in the past

Hope you get some answers. For whatever reasons as O read your posts I think back to Evelyn who was a fairly well informed ASKicker. Om 2010 she posted about Giardia and AS

AS can affect so many parts of our bodies. We get eye inflammation, skin inflammation, digestive tract inflammation as well as in all of our joints, tendons and other body parts. The one thing they have in common is that it all seems to have some type of inflammation. So many people who post here have more then one or two inflammatory conditions.

Gilth, have you been checked out by a GI doc? I think you should do that soon. I would follow up with the heart stuff first, then see the GI. Sometimes we have to track down all the different problems, one at a time. If you are lucky, they might be all related and whatever med fixes one, will fix the other. I hope you get all of this solved.

Yeah, I agree. A GI should be next. It's just hard to get to it, as I have had so many examinations, and none has come up conclusive yet. But UC or Crohns would probably come up quite clear. Luckily I have got a great phys Med doc now, and the next time I am seeing her, I will bring it up ,and ask if she can get it checked out. (She's the head of the phys med dept at a large hospital, so she carries some weight)

btw, I can feel myself getting a little vendictive going through all this and having docs not believe me. Has anyone else than me had the thought of what a joy it will be the day you do get a diagnosis, to show it up their nose, and specify to them what makes them bad doctors, and how they would be better suited as ...anything but doctors? -Yes, I know thats not a constructive action, or idea, but the thought of it gives me some small enjoyment

Hello gilth,

As others have told you already, heart problems are, unfortunately, quite common with AS. As a result, any time you notice anything odd happening with your heart, you need to take those incidents very seriously and bring them to your doctor's attention. Among the most common heart problems associated with AS are problems with the mitrial valve and incidences of atrial fibrillation (a fib, or AF).

A fib is the medical term for what is commonly known as an irregular heartbeat, or irregular heart rhythm. Normally, your heart should be in a normal beat pattern that is called "sinus rhythm." Whenever it goes out of that rhythm, you are most often in a fib. There is a heart rhythm disturbance called ventricular fibrillation--or v fib--that is much, MUCH more serious than a fib, as v fib involves a stoppage of the heart and can lead to death very quickly unless a defibrillator is used ASAP. Luckily, v fib is far less common than a fib and v fib is NOT directly tied to AS. A fib usually involves one of two types of irregular heartbeat. The first is one that is just that--irregular. It's not a rapid beat, but rather, the heart just seems to skip around and beat in a very random pattern, rather than in the pattern we are used to where the beats are spaced evenly apart. The second type IS a rapid heartbeat, and it is the more dangerous type of a fib. Normally, your resting heartbeat will be anywhere from 60-90 beats per minute (I'm obviously not a doctor and there are exceptions to that, but it's true for the vast majority of people). When you develop the rapid heartbeat form of a fib, your resting heartbeat can accelerate up to anywhere from 120 beats per minute to 180 bpm, or even higher. I'll come back to this in a moment.

The reason I know so much about a fib is because it's been an increasingly larger part of my life in recent years. For the past 20 years or so, I've experienced periodic bouts of it, all of which went away on their own within a day or two at the longest. I know this because I can actually feel when my heart goes into its irregular rhythm--I immediately feel "different," and a quick check of my pulse almost always confirms the a fib whenever I think it has started. Luckily, I almost never experience the rapid heartbeat form of a fib, just the steady, irregular form. When I discussed the two types of a fib with my cardiologist, this is what he told me: If I experience the slow, but irregular type of a fib, I am basically not in any danger and there is no need to go to the ER, or to even call my doctor. While this type of irregular heartbeat can be very annoying--I'll vouch for that!--it generally is not considered to be dangerous. Since my a fib became worse, I've met several people who explained to me how they've lived with their a fib on a constant basis for anywhere from 5 to 20 years. This really eased my mind, as I was pretty freaked out when my most recent bout of a fib that started three months ago simply refused to go away like it had always done in the past. (To read more about my recent experiences with a fib, including treatment options--one that was not viable for me due to my severe AS and one that helped stop my a fib--go back and read my posts in this forum for the past few weeks.)

As for the rapid heartbeat form of a fib, my cardiologist told me that this type is considered to be much more dangerous than the other type and that if I ever find my heartbeat at 150 beats per minute or higher, I should go to the ER immediately. Again, these instructions might not be exactly the same for every person, but I am explaining what my cardiologist said so you can at least have an idea how one doctor explained it to me.

Obviously, if you are experiencing a fib or any other heart problems, it is very important that you see a cardiologist yourself so that you can determine WHY you are experiencing those problems. With that in mind, I think it is important that you do see a cardiologist as soon as you can. The way you describe how you felt when you first felt what seemed to you to be heartbeats that were no longer in rhythm match my own symptoms very closely. Whenever I experience a fib, I become very, very fatigued, which you said happened to you. You said you could feel these changes happen to your heart almost immediately, and I totally believe that, as I always feel it when I go into a fib. You need to trust your body and your own feelings and assume that you are experiencing a fib when you feel those odd heart rhythms.

Unfortunately, as you're already learning, PROVING you are experiencing a fib can be quite problematic if it only happens from time to time and then goes away. It can be very hard, if not impossible, to happen to be at the doctor right as one of the bouts occurs. I noticed that several other replies have already mentioned how doctors overcome the temporary nature of a fib so they can determine if their patient is experiencing it, and that is through the use of a heart monitor that you wear at home for a period of time. The monitor is called a Holter monitor, and the doctor can give you one that you will wear for 24 hours or one that you wear for up to 30 days--there may be ones you wear even longer than that, but I'm not aware of them. I'm sure your doc would start with the 24-hour version and go from there. It's a simple thing to wear, as it attaches to your chest via five clips that attach to pads that they stick to different places on your chest. The one I just wore last week was so lightweight and small I often forgot I even had it on. Once you have worn it for the prescribed period of time, you turn it in to your doc and s/he downloads the data on the monitor and analyzes it to see if any irregular heartbeats were detected.

As I mentioned, living with the one type of a fib is now considered no big deal and supposedly does not present any real danger. For that reason, I don't think you should panic over the feelings you've noticed recently, but nor should you ignore the symptoms you've experienced. It is important to find out exactly what is going on so you and your doctor can determine if it is just "simple" a fib you're experiencing, or if what you are feeling is actually a sign of something bigger going on. Because heart problems are too common for comfort with AS, it is essential that you take any symptoms of potential heart problems seriously and get them checked out ASAP. While a fib can be hard to treat, there are good options available that can keep it from happening. These range from a fairly minor, usually outpatient surgical procedure that can permanently solve the problem, to using medication to keep the heart in its normal sinus rhythm. I am currently using that latter option to keep my a fib under control.

I hope that quick primer on a fib helped and didn't simply lead to more questions than you had before you read it. If you do have any other questions, please feel free to ask them here in this thread or send me a private message. Either way, I will answer the best I can. Also, even though I mentioned this already, I want to stress it again: I am NOT a doctor and I am only providing you with information I learned in association with my own personal form of atrial fibrillation. Your situation no doubt is different from my own, so it is very important that you see a cardiologist yourself so you can obtain your own diagnosis and treatment plan. Good luck, and please keep us posted on what happens.

Brad

If you google "aphthous ulcers" and try to find some images, that might show you better than any explanation.