Tag Archive | IBS

Doctors and certitudes about IBS ! Why do doc’s think they know more about us, than we do ?


Getting on my soap box to scream a bit about Doctors. I am sure I am not the only one to notice that Doctors seem to run rough shod over just about anything WE might have to say. Case in point:

Recently saw a mess of GI docs. Told them all about my gut issues and why I think they are happening. Their answer ? To put me on what amounts to 100 times as much psyllium a day as I already take ( never mind I told them that if I do too much of it.. I get cramps, diarrhea etc ) a fact I have learned via nearly 15 years of trial and error. Did the docs listen to this ? Answer.. NO.. and insisted that THEY know best.. 

Ok. fine I take the stuff and the laxative they gave me, the very frist day on it.. ( after I choked it down ) within the hour.. cramps, diarrhea  and pain..it took me over a week to get it to settle down and stop doing that.

However, since I did promise to try, I went back to the meds and cut it down.. long story short here,  and it took two weeks of misery to find out, that in order to prevent the kick off to diarrhea and more pain.. I have had to cut it down less than a 1/10 of what they want me on.  Meaning, about what I expected the stuff to have to be, in order not to kick the other reaction off, based on my personal experiences..

Mind you, I am not just cutting it down, just to prove I am right. I did it their way, they said I could adjust it if it gave me problems, and I have, as I had to. The gut is still not good, but at least not MUCH worse than normal.

Now, several things are in play here with all this. The first being their arrogance in assuming THEY and only they, know best. Well its “worked for a lot of people” just try it they say. The pills you take everyday of the same stuff, won’t work they say, as you cannot just take them and sip a little water… never mind I have always taken them as they are supposed to be, which is with plenty of water, they ASSUME  that I am like so many others who take the pills, and do not do it right. Again, did they ask me how I take them ? Answer, NO. I all but bit the docs head off for that one.

That is just more of the all too common arrogance in assuming that I.. know nothing.  Their assumption of the dosage of the stuff they gave me, is based on three meals a day + snacks. I do lucky to eat, once. twice a day, tops. I told them this, did they listen ? No. 

What makes it worst of all is.. for weeks of extra bloating, pain, cramps etc. there is NO improvment in how the gut works or the problems that drove me to seek help in the first place. Just a lot more suffering.

I told them then and will tell them again, it’s not about consistency, it’s about function. As what I went in for, is to my mind, mechanical, the gut simply cannot do the squeeze and peristalsis motion….and a fast look around with a scope, would prove it.

They keep showing me the damn xrays.. tell me that they “look” normal, since they are not seeing any gross pinches of the gut or deformities. Never mind the ones who DID the test told me the gut was “twisted like a corkscrew” but apparently that notation, did not make it to the report.

Again I tell them.. that just shows you the inside of the gut, not the outside.. which by the way.. in my opinion. is the problem and told them exactly why. ( mind you I have been through this once before with adhesion’s etc gumming up the works.. and will bet with 95% certainly. that is the case .. now ) A good 14lbs of them were removed from my gut some 20 years ago, after my ovaries had bled necrotic matter into the gut cavity for years, and the body of course, tries to encapsulate it. Note: after all that was removed, the gut worked just fine.

Now, move forward 10 years after all that was removed, and the gall badder went totally south, to the point of being black, dead and gangrenous. Which would have, of course, pumped all manner of dead and dangerous stuff into the area around the gut, I nearly died over it all, .. notice this is again the same issue that created adhesion’s the first time…. just the source changed. Again, I told them all of this.

Now, since that time. the gut has not worked right, and it’s getting worse, but it looks like I will have to beat them all over the head with my cane, to get them to do the obvious, which is take a look.

If they can prove to me, that is NOT the case, that nothing is binding the gut in anyway, then fine, I am wrong and we have to look at other options ( I have news for them, IF that is the case, if they think I will take the crap they gave every morning of my life, they got another think coming ) but at that point, I will look at other options.. 

But I do not think I am wrong and I am not going to shut up.. until and unless, they prove it to me.. I know my body, I know its history, I know how it works and moreover does not work. I have treated myself for years and have found ways that let me at least have something like a balance with the beast.. and damn them, they ARE going to listen if I have to scream ! 

getting off my soap box now

BB

Esta

Update to this: I lost over 25 lbs over this and they were appalled…. and FINALLY listened to me and a few bright ones in the group, who had not been in on the original request, flat out told the ones who did order this fiasco… that they were fools to have ordered such things for someone with IBS ( nice to know not all of them are nit wits ) and they agreed with me, that adhesion’s were likely the cause here, but… they don’t do surgery anymore to remove them, unless they are cutting off the gut. So all of this, was for nothing………..sigh

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Some progress on the medical frustrations and yet another fight


Well, I finally have the chroipartocr nailed down, and approved, at least for 3 vists. My doctors office is at last, taking action on the paperwork that is needed for my durable goods. 

Almost two full mt’s of phone calls, visits, letters and aggravation later, I might finally be seeing an end to this saga. Now, with my appointment with GI to discuss what needs to be done regarding my GI issues, I fully expect another fight. As the fools did all the tests, but did absolutely nothing, with regard to even investigating the matter further.

This, unforgivably, is rather typical. Unless there is some gross issue apparently, the tests are classed as ” good” and ignored. Now, this is despite the fact that I went in for such testing to check on two things. Hemorrhoids, which have become a major problem, of which they freely admit are there but they have made no move, to do anything about them.

Coupled with the gut itself is very plainly twisted, and causes great pain and problem, yet this was also listed as “good” Now I have only one question, if all that is ” good” I would bloody well hate to see what they considered bad ! Having IBS on top of malfunction due to everything being twisted and bound up, is not fun, let me assure you.

Needless to say, I am not taking this well, as to my mind, both issues need to be addressed. In one case, it would be a simple day surgery and one hopes,  the end of the problem. But it seems they would rather leave them be, and let them do again what they have already done to me once, which was nearly bleed me out, until I was finally able to stop it, on my own.

I staved off going to ER over it, and perhaps I should not have, as then I might have had their attention. On the other issue, I repeatedly hear things like ” well surgery creates that” as if nothing can be done about it. ( Scar tissue and adhesion’s ) Which I know full well is a bogus statement, as I had such issues, from other causes before and  the surgeon was well able to remedy the problem. As what it takes, is one who gives a damn.

What I am hearing, is that they see these issues as minor and unremarkable. Never mind the fact, that both are a daily source of pain and difficulty. 

Now, the main reason for this blow off, is fairly simple. The hemorrhoids as I said, are a simple matter, but since no one SAW me bleeding every time I moved for days on end, they are basing their prognosis of “good” totally on visuals.

Even the Doctor who did the frist exam asked me, before he even attempted it ” if you have had them for years, why are you bothering to complain about them now ?” He really did ask me this. I was rather curt in my reply to say the very least.

So I can assume that he is the major drawback. He is also the same dim wit I had to have nearly a fit to get something for the pain the proceeduoe caused, in order to be allowed to leave, at all. As you were not alowed to leave, until you felt well and I certainly did not, but I had to threaten to leave AMA in order to get his attention to do anything about it.

Since he could not complete the intended prodeeure, others were ordered that clearly show the “gut twisted like a corkscrew” I was not only told this, I saw it with my own eyes. This by the way, is why the other scope process, failed.

Now, I have a pretty good idea on what has caused this and my PCP agrees, but what needs to happen is to look at the outside of the gut, in order to confirm that. Which of course, neither test, did. As in both cases, what they were looking at was the inside of the gut, with shows no blockages or polyps.

Which I guess is where the so called ” good” comes from. So its back to the fray and go at loggerheads with some medical types in a few days, to force their hand to DO something about both issues. Sigh…I am so tired of having to fight lame brains, who do not listen to what you tell them… but time will say how hard and how much I have to rattle cages, to get the matter, done.

More soon…. 

Dehydration and FMS


Well, I was able to get up, just shortly after the alarm went off, unfortunately, it’s Sunday ! Oh well, can’t win em all. Able to get some work done too ( Money is always good) The heat however, is trying to murder me and my plants, all at the same time.

I cannot seem to keep either them, or me, hydrated. Dehydration is a serious issue for anyone, and most certainly, for us with FM. Which in my case, also plays merry hell with my Neurally Mediated Hypotension. Dehydration makes everything we have, worse, for example:

 NMH =Neurally Mediated Hypotension

A higher tendency to depression

Excess body weight ( while that sounds odd, as you would expect the reverse, but it is true. )

High blood pressure

Fatigue

Low back and neck pain 

Higher body temperature over all ( which of course doesn’t help us at all )

and of course, headaches

Dehydration also depletes the neurotransmitter serotonin. Reduced serotonin, as we all know, means insomnia, increased pain and sometimes depression, as well as most of the other “goodies” that go along with FM are also increased, so needless to say, lack of fluids is a bad idea, for any of us.

They say you can tell how bad someones FM is, by the size of their drinking glass. Well given mine is a 32 oz that is literally never empty, I guess that tells you how bad off I am 🙂 And I live with a lip balm within reach at all times. If I don’t have one in constant use, the lips crack and bleed, in short order.

Now, what I did find out, is that in my case it’s the vasovagal response ( Which the short version in English means, our BP is supposed to go up when we stand, mine doesn’t, it goes down as heart gets the wrong message, and you either get dizzy or pass out, for lack of blood flow to the brain ) that is responsible for my NMH, ( which is the name given to a disorder of the above vasovagal response ) and  it is part of the problem.

As it not only makes for low fluid in the mouth, eyes, skin,( as is common  in FM alone )  it also means the inner body cavities do not have the full amounts of fluid they need. Meaning  my innards, instead of sliding over each other, as they should, are more likely to drag and even stick at times.

This might explain why I get the dreaded ” pin in the Voodo doll” pains from time to time. Now as I said, the glass is never empty, but how the body handles the fluids, is just as important as getting enough of them, which means, the gut has to process them, correctly. Mine doesn’t. As I have rampant IBS. So it is compromised, from the start.

So tossing down more drink and hope I can keep up with it, in our hot, humid Texas Summer.

More soon…

BB

Esta

The need for family and social/medical support in Fibromyalgia


Last night, I just could not take sitting here at the computer, even though I have things I need to do, so I piled up on the sofa early, to watch TV. When I got up to get a drink, I found my mate had done the dishes. He has no idea how much that means to me. Support on the bad days, matters so much, and I thank all the Gods, that he “gets it”

I have lost two mates due to this curd, as they didn’t “get it”  one almost directly after being diagnosed with it. I was in shock, I was depressed, and in an almost constant flare, and he just could not deal with all the changes. We talked about me quitting work for my healths sake, and yet, when I did, everything changed. 

In short order, since I was no longer making money, I was shut out of financial decisions, then came the complaints of household work not done, etc etc. I think you can see the picture for yourself. It ended in divorce. ( statical note: over 75% of unions, dissolve when major illness or injury, enters the picture )

In short, my life, as I knew it, had just taken a major dive, no differently than if I had gotten run over by a bus and broken half my body, yet since there was no “accident” there was little to no consideration, from anyone. For any life changing illness, we go through the same stages as we do for grief, they are:

Shock stage: This is the initial paralysis, we are reeling here, as our life as we knew it, just changed.

Denial stage: Trying to deny it’s real

Anger stage: Frustrated, lashing out and generally enraged.

Bargaining stage: Almost desperation, as we try this or that medication, or procedure, with an idea in mind, if we do X we can cure this and it will go away.

Depression stage: When we finally realize, it is real, it’s not going away.

Testing stage: At this point, if we are lucky, we are looking for more realistic solutions.

Acceptance stage: The point were we look forward and move onward.

It took me over a year, to reach the testing stage, and I almost dropped myself into a full blown depression in the process, as not only was I getting little consideration from my mate, I was not getting a lot of help from my doctors either. As when I was diagnosed, FM was the ” its all in your head” send them to a shrink idea, in the minds of most doctors.

In fact, the doctor I had, at the time I got my diagnosis, the same one who had been treating me for all the various ailments, ones even he considered legitimate and provable, gave me pain killers etc. for over two years, dropped me like a hot rock when the RA doctor he sent me to, sent back a diagnosis of Fibromyaligia.

All support from him, stopped, all medications, everything. (  in fact he told me to go see  psychiatrist … just as an FYI, I got him fired from the university I was attending at the time for such treatment, but those who took his place, as soon as they read FM on the chart, were not much better as far as support ) I was entirely abandoned, by both family and the medical society.

For many years after that, I learned the hard way, how to manage it, as best I could, with often no help whatsoever. Now some signs, like IBS, that those around me then, could at least see, were given some consideration, in fact it was considered the worst issue I had, as its effects, are visible. But the rest ? No, no one really got it.

Now, thankfully, some 15 years later, most, mind I say most of that, has changed. My current doctor “gets it” and is trying, within the limits of the medical care system, to help. And, she is very understanding of my frustrations.

I finally got SSI, after over 10 years and three states of trying, as again, in the public mind FM is finally getting some recognition and a little respect from at least part of the system. But I honestly believe, that if I did not have a whole host of other issues, strokes, body-wide joint problems, spinal stenosis, bone density issues etc, that are provable at my age now. I still would not have gotten it, for FM alone.

The long story short here is, do NOT let those with FM, that you love, fight that fight, alone. As the problem is real, the issues are real, and to make them have to fight that fight all alone is courting literal insanity and yes.. even death.

Something to keep in mind, Chronic pain is at the root of 70% of all suicides. The national average is 2.9% of the population, for those of us with FM the average is 10 times that, at 29.9. So consider well, before you leave your loved one with FM, out in the cold, as you may well be condemning them, to death

More soon….

BB

Esta

Neurally Mediated Hypotension and FM


Well, I got to see my doctor today, and other than being able to walk out with a referral for a GI doctor ( shes looking into that) I got most everything I asked for. Which just shows the importance of having a list and a good working relationship with your doctor.

And I found out, I was right, my blood pressure is the reason for the dizzy spells I have been having lately, this is called Neurally Mediated Hypotension.  What this basically means, is a sudden drop in blood pressure, under hot conditions , like high humidity,  standing too long, etc. This kind of problem is common in FMS and CFS/ME,

” neurally mediated hypotension (NMH). NMH (also called vasodepressor syncope or neurocardiogenic syncope) is a blood pressure abnormality brought on by a nervous system reflex. It can cause symptoms such as chronic fatigue, light-headedness, recurrent fainting, malaise, nausea, exercise intolerance and cognitive dysfunction.”

Now, given I live in the tropical region of Texas, it is  kind of hard to avoid humidity, ditto the shower, which is where I first noticed it. We discussed options, and are going with simple means, such as more salt, and she suggested Licorice root. Which is well known to increase blood pressure. ( Most studies done on the disorder, make the same suggestions )

There are few medications to raise blood pressure, most of which are dangerous, in that they are unpredictable, ( Not to mention I have had two strokes, so we don’t want to raise it too much )

She told me this is also likely why, the medication I take for migraine, works so well, as the one thing it does, is raise your BP, much like the Forinef, a common drug given for Neurally Mediated Hypotension, which is a steroid.

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I found out a little fact about my IBS, and why its gone so bonkers lately, a little tid bit that no one at the GI clinic who did recent tests on me, thought to tell me, that the bowel cleansers you have to use before such tests ( I had two tests in a row, within a week ), kill off all intestinal flora and needed bacteria for the gut to function properly.

If I had known this ( and no, the label on the cleansers did not say a word about it either ) I would have known what to do, which is drink Acidophilus milk, eat yogurt, take probiotics, etc. To replace what was lost. There is no excuse for not giving me this information. I have suffered for weeks with this, and could have put a stop to it, with simple measures, but no one, until my doctor said it this afternoon, bothered to tell me !!!

She would not increase my pain meds, but then, I really didn’t expect that she would, but I had to ask  🙂 but she did offer me a possible option to aid in sleep as asked, above and beyond that I am taking now. So we will give that a go and see how that works.

Ditto my requests for household aids, like a bath chair, etc, for which I need to see the clinics social worker ( but that is alright, I know her, she is the one who recommended my doctor 🙂 Likewise she agreed that a Chiropractor would be a good idea, so I plan on making appointments for that to help deal with the neck and back pain. More, finally, I got another referral for a vein specialists, as was ordered over 6 mts ago, but never followed up on by the neurologist I saw for the problems of  swelling, cramping etc. in my lower legs.  ( It is assumed to a be possible PAD disorder ) So over all, a very productive visit.

More soon…

BB

Esta

FM and Weather changes Intolerance


As I said in earlier posts, that I had no major physical things to do for the rest of the week, but some things needed to be done, today, was a short shopping trip, only two stores today. But the heat.. and humidity was killer. Now anyone who has ever lived in a hot region, that also has lots of rain, you know that a summer or spring rain can mean the next day, the air is so thick you almost need to wring it out, to take a breath. Thanks to last nights thunderstorm, today was such a day.

98* with over 60% humidity, which meant that the single hour I spent out in it, left me limp as a rag, and that’s with AC in both the car and the stores.

Now, I am a desert rat, meaning I have lived in deserts most of my life. So it’s not the heat, that is really the problem, I am pretty well used to that. The humidity however, demands that the body to make some rather rapid and major adjustments, to maintain the bodies temperature.

Well, news, those of us with FM, don’t do that very well. In fact, our bodies often cannot adapt, at all. Not to mention, we have high pressure fronts on their way in, which will make for lovely weather, but will make the barometer leap about like a frog on a hot plate. So I expect to be reaching for my pain killers, rather often over the next few days, as the joints and mucles are going to complain about all this.

Now, to make matters worse, recall the IBS attack? Well, that is still going on. All I can hope, is when I see my doctor next week, I can talk her into adding yet another medication to my list, being some anit spasmodic’s.

It has been years since the bowels acted up this way very often, most of the time, its been the other way around, where Nothing happens in that dept. But for whatever reason, it has decided that it is gonna run hog wild, which is not only painful, its draining.. quite literally.  So living in a war zone, with my body as the battlefield, and save for a few meds I have handy, all I can do, is watch it happen. More soon….

BB

Esta

IBS and Fibromyalgia


Warning Will Robinson !!!!, unpleasant topic ahead !!

My day started, as have so many lately, with an IBS attack. Now, for those of you who do not know what that means, it’s short for Irritable bowel syndrome, which seems rather a tame word, for what really goes on. I am one of the unlucky ones who has both sides of this issue, either diarrhea or constipation, sometimes both at the same time. Over 70% of people with FM have IBS.

Imagine waking up and the first thing you have to do, is make a bee line for the bathroom ? And once this diarrhea event starts, it can last for days, even weeks. These are the days when you are literally housebound, as you do not DARE go anywhere, ( need I say why ? ) as we are not talking the occasional urgent ” gotta go right now” we are talking cramping, pain, sweating, shaking, the kind of day that you normally get with the stomach flu, sorta deal. Now, picture that happening day after day ?

Now, most doctors would make the mistake of saying, your stressed out ( never mind that it has been proven over and over that IBS is made worse by stress, but is NOT caused by stress ) and try and blame all this, on you and your state of mind. News, it has nothing to do with your mind. Given as how often I literally wake up with it..its called what? I am stressing in my dreams ? I don’t think so..

Now.. the reason this does happen in FM, is the gut is like any other muscle in your body and therefore subject to myofacial trigger points as most of us have CMP ( Chronic myofacial pain ) so the gut either goes spastic, or as is more typical for me in recent years.. does NOTHING at all and your bloated out like a whale.

Today is not one of those days, but I expect I will return to imitating a whale, in short order. Not to mention, the nerochemical Serotonin, the one we are lacking so much in FM ? Well the second largest place for such receptors, is in the gut, so IBS being an issue for us, is really no surprise, as it, like the brain, is not getting the chemistry it needs, to function normally.

It’s almost needless to say it, but I will say it anyway, this can be excruciating painful, and it literally takes up almost every bit of energy you have. So you do your best to sooth the gut and relax while all this is going on, as tensing up is the worst thing you can do.

I have developed a little trick that helps, in that while I am in the bathroom, with this going on, I often will literally dig my own nails into my arm, enough to cause pain. I know, that sounds masochistic, but the facts are.. despite how it seems, the body almost cannot feel pain in more than one place, at a time. So the created pain, is a diversion of sorts, so that I do not feel the pain the gut is in as much, and can let it relax and therefore, make the whole process, easier on me.

Lots of deep breathing helps too. The idea of going into basically a Zen mediation state, while all this is going on, might seem a little weird, but it does help, trust me on that one.

For me its always one or the other with the gut, normal is never part of the picture. Hopefully, tomorrow will be better.

More soon…