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Diarrhea after gallbladder removal

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Irritable Bowel Syndrome
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Posted 6/2/2008 7:15 PM (GMT 0)
Don't take more than you need of the Welchol or you WILL get constipated. I promise you. Only take enough to stop the D.

Personally, I take 2 Welchols in the morning because that's when my bile is at its worst. Which leaves me free to take a vitamin and calcium in before bed and be able to absorb them (also lets the calcium help with nightime bile--which is what makes it bad in the morning, I think).

How long did you take probiotics and what kind did you take? I really don't think the sour taste in your mouth and the coated tongue are related to your bile medicine, as I've never had the problem, nor heard of anyone having it while on that medicine. However, people with bad bacteria problems have that as a symptom. If you can see a doctor, ask about taking a breathalyzer for bad bacteria. That may also explain the gas/gut pains. While probiotics can help that problem over a long period of time, antibiotics are usually prescribed to wipe you out and let you start fresh. They're like bankrutpcy court for the gut, lol.
Posted 6/3/2008 9:29 AM (GMT 0)
Two tabs of Welchol in the morning are enough to stop my D. I can already see that Welchol is stronger than either Cholestyramine or Colestid were, and I do think I'd get constipated if I took any more. But so far I've been on the medicine 3 days and it seems to be making my stomach more gassy than the others, not less. I almost want to give it up and return to the Colestid, but I guess I'll give the Welchol more time to see if it settles in.

This whole thing is a big mystery and it's a matter of trying to find the right answers. I know for a fact that my symptoms began last June 30th, the very first day I was forced to start taking a new brand of Cholestyramine, after my previous one (by EON Labs) was discontinued. I had taken that brand once each morning for FIVE YEARS, with no problems! When the company SANDOZ took over, I had very dramatic stomach issues immediately, the very first day - like flipping a light switch. There was no doubt about this. So I have no doubt in my mind that the change of companies' meds just have not sat well with me, for some reason. Everything I try to take does successfully help me control the D, but at the cost of some very bad side effects.

The coated tongue and persistent sour taste began after experimenting for a couple of months last year, in July and August, taking all sorts of different brands, in order to try and restore a good balance. I tried SANDOZ, I tried PAR, I tried QUESTRAN LIGHT.... and after two months of this back and forth stuff, I developed this everlasting bitter taste and tongue problem (since September of last year). I've been to two GI docs, a couple of ENT specialists, and 2 family doctors.

The probiotic I was on was "Flora-Q", and I took it all through April and May, with no noticeable benefit. So when it ran out and it was time to buy more, I never bothered. I've also tried dramatically changing my diet, getting off a lot of sugar and caffeine, and eating more healthy. I've been drinking only water for several months now. I am also overweight by at least 50 pounds, and have been trying to lose.

My belief is that ever since resorting to different brands of Cholestyramine, Colestid and now Welchol , they have greatly upset my stomach with gas and acid reflux (which is a side effect) and that's the reason for the coated tongue and bad taste all day long. But I am facing a terrible dielmma because I HAVE to take something to control the bile diarrhea, but at the same time everything makes me feel lousy. I just can't live like that and I need to find some form of light at the end of this tunnel I'm stuck in.

Thanks for your feedback.. it helps to keep me going.
Posted 6/3/2008 3:10 PM (GMT 0)
Have you tried any sort of OTC stomach medicine for sour stomach?  I think Pepto Bismol will help treat sour stomach.  The sour taste in your mouth may be caused by food souring on your stomach.  That may in turn be caused by your stomach not emptying fast enough.  Welchol and the other medicines should not interfere with the working of your stomach at all.  However, as I am fond of saying, nothing says you can't have more than one thing wrong with you at once.  My mother has had her gall bladder removed and has a slow-emptying stomach.  She had a cousin who had to had to have her stomach removed in a pretty dramatic gastic bypass because her stomach quit working all together.  It's also on that same side of the family where we have a history of bad gall bladders, even a case of very rare gall bladder cancer.  So no doubt both are genetic (even though one didn't necessarily cause the other). 

In any case, you might see a doctor about checking your stomach to see if it's emptying properly.  If not, there are medicines like Reglan (that's an older medicine; I think they have something new out that has less side effects, although taking it on occasion has never bothered me) that can empty your stomach for you.  Mind you, it can speed up your entire digestive tract, so you might find you need even more Welchol to keep from having worse diarrhea.  Depending on how much better your stomach feels versus how much more diarrhea it may cause (although it may not), you will have to decide which is the lesser of two evils. 

Posted 6/4/2008 10:59 AM (GMT 0)
I had an endoscopy back in October, and everything was fine. I'm not sure I understand the "emptying" thing; I have regular daily bowel movements, sometimes 2 or 3 times daily, so would that rule out the "slow-emptying" problem?

I have to disagree about these meds not interfering with your stomach, though. From the very first day when I switched my brands of Cholestyramine (and remember that I had no problems for 5 years with my original brand - that's something like 2000 good mornings of taking it!) my stomach immeditaely became gassy, bloated, upset, etc... The very first day!

I think that indigestion, and other stomach discomforts are certainly listed potential side effects of bile sequestrants (meaning Cholestyramine, Colestid, and Welchol). I just cannot understand why only that one original brand of EON LABS Cholestyramine did not affect me all through 2002 - 2007.

In fact, if you look at those years I've just listed above, back in 2003 I had switched to a new brand of Cholestyramine for 3 days, and my stomach got screwed up then, too! So I went right back on EON LABS, and my bad side effects disappeared again and I went back to normal. I then continued EON exclusively from 2003 -2007, til they were bought out. There's just something about the new formula by SANDOZ (who bought EON out) and all the other brands that is NOT the same with me.  

Post Edited (Joe9) : 6/4/2008 5:03:50 AM (GMT-6)

Posted 6/4/2008 3:11 PM (GMT 0)
Your intestines can work fine, but your stomach may not empty food out of it as quickly as it should. My mother doesn't suffer from constipation, even though her stomach is slow to empty. When it's slow to empty, it can cause food to sour on your stomach (dairy is especially bad to do this). It can also cause you to belch (the old "tasting what I ate hours ago" thing). It can also make you feel sort of queasy to have food sitting in there too long. Bile sequestrants should not have any effect on how fast your stomach empties out. That's what I meant. I know from people complaining about Questran that they can cause excess gas and gas cramps. But that's a separate thing. An endoscopy only looks for damage to the esophagus and the stomach. There is a different test to check to see if your stomach empties out. It works the same as the HIDA scan for the gall bladder. You eat something radioactive--frequently scrambled eggs--and then you lay under a camera and it follows the progress of the radioactive marker to see if it is emptying out of the stomach on time.

While your medicine can certainly be causing you some problems, it's also possible that something unrelated to the medicine is ALSO causing you problems.
Posted 6/5/2008 9:13 PM (GMT 0)
Thanks for the suggestion. I'll keep it in mind when I go to the next GI doc and I'll mention it to him. I've looked up a lot of info on this and the symptoms don't sound too much like mine (it's called Dislepsia). But what the heck.

All I know for certain is my system changed like day into night the very first day I switched meds, almost one year ago. And I've never been right since.

I've almost considered trying to give up all the bile sequestrants totally and go back to Calcium (Caltrate)... but I gave this two tries during the past 10 months, and sadly I couldn't control the D. 

Welchol and the others DO work well at controlling the D, though.

Posted 6/5/2008 10:41 PM (GMT 0)
When you go the to GI doctor, also ask about getting a breathalyzer test. Gas, stomach upset, bad taste in the mouth and coated tongue can all be signs of a bacterial imbalance too, and if it's bad enough, probiotics alone sometimes aren't enough to help. Sometimes you have to wipe it out with antibiotics, then rebuild with probiotics. Maybe the switching of the meds caused it. I know PPIs (acid reducers) can cause bacterial problems. Seems when you decrease the acid in the stomach, you allow the bacteria to grow more easily and the bad stuff can get out of control.

Also, have you seen a dentist lately? Gum disease can cause similar mouth problems, and, weirdly enough, they are linking it to having all sorts of non-mouth problems. I can't remember which gum disease, but one is actually linked to heart problems! It may be, though, that the gas problems are from your medicine, but the taste in your mouth and coated tongue is from a separate, unrelated problem.
Posted 6/6/2008 10:13 AM (GMT 0)
The reason I think it MAY be related is only because I view it like this:

I take the medicines...
The medicines can cause gas/acid....
Gas/acid then causes reflux/bad taste, coated tongue

Of course, as you say, there can be something completely unrelated going on as well. A couple of doctors diagnosed it as Thrush, but I sucked on lozenges called 'Mycelex' for this, and it didn't work.

I haven't yet begun taking Prilosec or other acid reducers, and truthfully I'm afraid to do so because they're not meant for long-term use, and as you say, they can cause other bacterial problems.

This could be anything -- sinus troubles, allergies, acid reflux, bile reflux, bacterial infection, yeast, ANYTHING. It just drives me crazy and I'm living half a life for the past year. I've stopped bothering seeing doctors, but that's something I really shouldn't stop. I have a tendency to see several different docs until someone hits the right answer, but maybe I should stick with one guy and maintain some sort of continuity.

I haven't been to a dentist yet since I've had this trouble. That's another plan in my radar. I guess I should mention that 2 years ago I bit the inside of my cheek very badly in the back, and I had a resulting piece of scar tissue residing there ever since. This "bump" is right in the back where my molars reside, and ever since April 2006 (when the injury occurred) they've been in the way, and I occasionally keep "catching" the bump now and then. It was a real concern for me, and I went to dentists/ENT's/ and also an Oral Pathologist, and was assured there was nothing serious going on there. I was also cautioned NEVER to have surgery to remove the bump, as it would only cause other complications. Well --- not too long after this, my old brand of Cholestyramine was discontinued and I've had these present stomach/sour taste issues! To me they seem to be different from the "cheek bite" issue, and BOTH of them combined are a horror show to live with.
Posted 6/6/2008 6:05 PM (GMT 0)
<< A couple of doctors diagnosed it as Thrush,>>

Thrush is sometimes related to bad bacteria in the guts. Like I said, try and get a breathalyzer test from your doctor.

<<The medicines can cause gas/acid....>>

I know about the gas, but have not heard that they cause excess acid. After all, they are soaking up bile acid. They can cause gas by upsetting the stomach bacteria which have a tendency to fart when they are displeased, LOL. However, it is possible that some of your bile acid is refluxing up (my mother has this problem), and that these medicines do not absorb the bile when it's in the stomach--only when it's in the intestines. It could be that your old medicine absorbed the bile all the way down and kept you from having this problem before. Lately I have been noticing more heartburn. Been having to reduce my tomato sauce consumption and look to Pepcid. Also noticed a corresponding decrease in my D. So, there it is going up a bit more than it's going down.

Have you tried antiacids of any sort along with the Welchol? Also, you may resconsider the calcium. I take it in addition to my Welchol. One, I don't need quite as much Welchol when I take the calcium, and two, I have found the calcium helps my guts. I had them really irritated once and it was only by starting calcium that I got them straightened back out. Calcium has been linked to clearing up minor intestinal irritations. If you are refluxing acid up, the calcium might help soothe any burning it's causing to your esophagus and stomach, and maybe help soak a bit of it up.
Posted 6/7/2008 11:07 AM (GMT 0)
I tried Nexium for just 2 weeks, which was back around September, I guess. It didn't do much. I have been advised to try OTC Prilosec, but haven't done so yet. I don't know why not -- I guess because I know that acid reducers are not really a good thing to take longterm, and they all advise you NOT to take them for more than two weeks. So I ask myself, "even if they help for now, what happens after the two weeks???" -- I'm not saying I won't ever try them, but I just haven't yet.

I like the idea of taking Calcium along with the bile sequestrants... maybe a more safe and natural way to help the acid and gas, if it works. I have read a lot of online stuff about the health benefits of taking organic Apple Cider Vinegar daily, and for about a month now I've been taking 1 tablespoon each morning. So far, no changes that I can see.

I should mention that I don't have any "pain", or "burn" at all. So I wonder if it's "acid" at all, though the stuff in my mouth could be reflux of some sort. For awhile I figured maybe I wasn't taking ENOUGH of the medicines to soak it all up; this problem with the sour taste began, curiously enough, last September when I tried reducing the amount of Cholestyramine I had been taking. I went to 1/2 a packet instead of the usual full pack. Then it went to only 2 grams a day of Colestid, and now only 2 pills of Welchol (the prescribed amount is 6).  But the reason I won't use too much of the meds is because I don't want constipation, and I don't need too much to control the diarrhea.

While I have no heartburn or pain, sometimes my stomach feels gassy or bloated, or there's a slight "pressure"... but it's not constant at this point, and was more prominent way back last June when I first switched my good old medication. What lingers now is just that persistent sour taste/coated tongue.

I'm probably going to pay a visit to my dentist. Then another GI.

Post Edited (Joe9) : 6/7/2008 5:10:28 AM (GMT-6)

Posted 6/15/2008 11:29 AM (GMT 0)
I wanted to tell about another experiment I went through recently in trying to get off my medications and trying out Calcium again. I was using the Caltrate (pink bottle):

I stopped the Welchol, and for 4 days tried just the calcium. During those 4 days I did notice that the ever-persistent sour taste in my mouth lessened, and may have even disappeared, or was well on its way to vanishing. I still had the coated white tongue, but I figured that wasn't something which was going to disappear in only a few days. My stomach started feeling better, no belching or gas discomforts.

The first two or three days I was optimistic, because the calcium seemed to hold. I took three full tablets each day, one with every meal, spaced at least 5 or so hours apart. But what I found was that I constantly had this feeling of WANTING to move my bowels, all day long... even though I refused to give in to the urge, I still felt like I could go to the bathroom anywhere, any time. It was not "urgent diarrhea", but still I felt the sensation that I could go any time. I do not get this weird sensation whenever I am on a bile sequestrant like Welchol, Cholestyramine, or Colestid.

During the first two days I was off from work. I went around town doing all sorts of errands, and every now and then I felt like I was getting a stronger urge to "go". It was always in the back of my mind and I suppose that to some extent it's psychological. There were a couple of times where I was able to take my mind off going to the bathroom, but yet it was always present in the back of my mind. During my errands I passed by a few bathrooms in department stores and so forth, where it would have been easy to just relieve my fears... but I resisted them. I was trying NOT to give in, and to train myself instead to not rely on going. It was just so strange that this constant "sensation" in my anus (I don't know how else to word this) was always around though. One day I finally got back home at around 1:30 pm, and THEN I let loose in my own bathroom. I had been able to wait, but I would still have preferred that I did not have any urge to go.

After the first 2 days I had to return to work. I should mention that I have the worst possible job to have such a condition -- I work outdoors most of the day, and therefore not only am I nowhere near a bathroom, but I have to physically move around a lot, which can stimulate the desire to go. I don't spend the entire day outdoors though; the first couple of hours are spent inside the office organizing things, and then I'm outside for a few hours until lunchtime, where I return to the office for a little while to eat (and usually use the bathroom), and then I'm back outside for another few hours.

Well, the first day at work on the calcium (Day 3) wasn't too bad, though that ever-present fear and physical sensation of wanting to go was there. And then by the 4th day, I had two urgent trips to the bathroom, which deflated my confidence. I just told myself "I can't chance this", and the very next morning (Day 5) I had to go back to the Welchol. No sooner did I go back to the medicine when I got gas and belching and the ususal stomach upset!!! And the sour taste in my mouth kicked in again!!

So it has been since June 30th 2007, when my dependable brand of Cholestyramine was bought out by another company. I haven't been right ever since, and the 1 year "anniversary" of this tragedy is right around the corner. I just feel so much more in control of my D when on the bile sequestrant meds, even though they definitely seem to upset my system in the bargain. I have avoided going to more doctors because I've seen so many in the past year and what can they advise me? They just guess, and all they'll do is suggest Prilosec or something as a supplement along with the bile meds. But even if that works, you cannot take Prilosec every day of your life forever, and I'd need it every day to counteract the side effects as long as I take my daily Welchol!

People tell me "maybe the doctors will come up with another idea", but after 1 year of studying these types of message boards, what else can they whip up? There is nothing else to try -- there is Welchol, Colestid, Cholestyramine, and sometimes Linda's Calcium idea. That's all. It's why I see no light at the end of this dark tunnel.
Posted 6/16/2008 2:25 AM (GMT 0)
Joe, Don't give up hope.  There really has to be an answer somewhere out there.... Maybe not now, but eventually.  We're all waiting and we're all hoping.  At least here, we can do it together. \0/ \0/ \0/ \0/ \0/ \0/  
Posted 6/17/2008 3:25 PM (GMT 0)
So, here's an idea. Can your pharmacy, or a compounding pharmacy, put an enteric coating on your Welchol pills? It may be that your stomach is digesting them too early and that's the problem; a coating would make them mostly dissolve outside the stomach, which is where you need it anyways. Someone on here a long while back mentioned taking a name-brand pill with great success for a while, then switched to a generic pill and started having a lot of problems. She asked her pharmacist why the difference since all the ingredients were the same and he said no, not all of the ingredients--only the active ingredients were the same. He said the inactive ingredients, which include filler, the gluey substance that holds a pill together, and any coating on the outside, could be radically different. He suggested that the coating on her generic pill was making the pill dissolve in the wrong spot in her digestive tract--I seem to recall she had gas and indigestion from this new pill. She switched back to the name-brand and was fine again.
Posted 6/18/2008 12:12 AM (GMT 0)
7Lil - Thanks so much for your uplifting words. It means a lot to me, just to hear it.

Keriamon - thanks for all your suggestions. I appreciate this more than you could know, but I always feel guilty if I always come back with a "BUT---" any time someone tries to help me. And you have come up with some good ideas. Someone once mentioned to me that I should try a compound pharamacy, and your idea is worth a try too, But what do you think of this:

First, when this problem with these other meds hit me last June, they began by my taking the POWDER form of Cholestyramine, made by Sandoz. After this gave me trouble, I tried the powder form of Questran Light, followed by another powdered brand of Cholestyramine manufactured by PAR. I even tried the powdered form of Colestid! So do you think this makes any difference in your theory, considering that I mostly used powdered forms (and not tablets)? I DID use the tablets form of Colestid for awhile too, as well as this new Welchol in pill form. I've tried everything.

Here's something interesting I observed about the "good" brand of Cholestyramine powder (EON LABS) which I took for 5 great years.... I always noticed that this "good" brand had a tendency of leaving a hard residue on my spoon and my glass. If I did not scrub the spoon and glass very well (or the sink), it would get hard and "cake up" on me fairly soon (say by the next day). However, with all these other "bad" powder Cholestyramines I've tried, they all rinsed away very clean with water, no residue, no buildup or scrubbing required! It was as though the consistency was different, or that the "good" brand may have had some kind of coating or something. This is just another futile and desperate guess on my part.

I keep hoping that someone will pop in to say they've experienced the same bizarre changes since SANDOZ bought out EON LABS, but so far, nobody. I've even tried to give SANDOZ the benefit of the doubt and figure I was imagining things and it's all in my mind, so I did return to the Sandoz brand a couple of times to give it another chance; but it upset my system every time, even though I want it to be the same exact formula.
Posted 6/19/2008 7:20 PM (GMT 0)
Well, by your own observations at dissolving this stuff, you know that the medicine that worked had a different reaction to water than the ones that don't work. So it makes me think even more than you are suffering from a digesting-in-the-wrong-spot problem. The stuff that gives you problems dissolves very easily, you see, which would imply that it starts working in your gut pretty fast. That's why BC makes powders instead of pills; to make it work faster. The old stuff doesn't seem to have dissolved as well in water; that's why it came out of solution to cake onto your cup and spoon. It may have taken it longer to dissolve in your guts as well, meaning it dissolved in your intestines instead of your stomach.

I don't know if coating the Welchol will help any or not, but it seems like it's worth a try, if you can find someone to coat it. I think I already mentioned having your stomach transit time tested. If your stomach empties slowly, that can effect how medicine works; it could be that you are not getting it out of your stomach as fast as you should, and that's causing the problems (can also cause food to sour on your stomach).
Posted 6/30/2008 10:09 AM (GMT 0)
Well, today is a dark day for me. It's ONE YEAR AGO TODAY that I first had to take a new brand of Cholestyramine after my old faithful version of 5 YEARS was bought out by another company. I have never been the same ever since, and I have been trying to get my health on track for the past 365 days.

I have tried changing the dosage, I have tried going on to other different manufacturers, I have tried eliminating Cholestyramine completely and trying Colestid and now Welchol, powders and pills, all sorts of differing doses. Any of these different medications HAVE helped to keep controlling my post-gallbladder removal diarrhea, but have apparently played much havoc with my system in the bargain. I have also tried a few times to abandon ALL bile sequestrants and try relying on calcium as per Linda's method... but I do not have D control that way. I've also tried some natural remedies or supplements. Probiotics.... Raw Apple Cider Vinegar... Metamucil.... Plain Yogurt for its active cultures... eliminating white sugar and other junk food from my diet... I am also trying to lose weight, as I am about 50 -60 pounds overweight and have already lost some pounds...

I've been to doctors. They're useless. It just so happens I have an appointment today with an ENT (to check out my persistent sour taste and coated tongue, plus a new problem with pain in the throat -- is it the start of esophagus troubles due to a year of possible acid reflux??) and I have another GI appointment a week from today. I already know it'll be a waste of time, and I know what they'll suggest --- PPI ACID REDUCERS -- and those are harmful if taken for a long period of time, even if they work (which I doubt they will). And besides, is the problem TOO MUCH acid or NOT ENOUGH acid?? Is it conceivable that the bile sequestrants deplete me of the acids I need to properly digest??
Or maybe this is not an "acid" issue at all?? It's all a guess, a mystery.

My wife has really become fed up with all my talk and obsessing over this, and she's not very supportive. The idea of having to take these bile medications because without them I am a victim of severe diarrhea, while at the same time facing all sorts of (what appear to be) adverse reactions to these meds.... this is what I consider to be a dilemma that's unheard of.

Well, I still put my postings here because you never know. I also am a believer in God and I pray for guidance and help fairly regularly. You never know where it may come from, or how. I know God helps because 20 years ago I suffered with a similar situation where I had a bad illness for 5 years, and when I finally believed in the power of prayer and trusted in God, I soon found the right "answers" after 5 years of suffering. I don't know why I'm not having as much success this time however.

While I have ZERO faith in doctors, I have to see more of them. Have to keep going and going until I hit on something.

Thanks for reading... I just have to let it out sometimes.

***

Joe -
I edited your post because I think it is very necessary for you to consider seeking help regarding your thoughts of self-harm. I am leaving the rest because I do think you will benefit from, and deserve, the support of our members but I do need to dole out the "tough love" and make sure you have someone in real-time to talk to about your situation.

Post Edited By Moderator (Sarita) : 6/30/2008 4:45:08 AM (GMT-6)

Posted 6/30/2008 10:47 AM (GMT 0)
P.S. Joe, I'm a doc-in-training and I hope you do reconsider your position about "us" as a profession. Remember that all of us are individuals, even your doctors, and deserve to be treated respectfully, just as you would expect your doctors to treat you. As far as ideas on how to approach your doctors...maybe it's time to seek some different care. Modern allopathic medicine doesn't work for everyone. What kinds of alternative treatments have you tried? Any success? It sounds like you got through a really rough time 20 years ago...would love to hear more about how you overcame that. Thank you for sharing your story.
Posted 6/30/2008 9:05 PM (GMT 0)
Well, to make a long story short, 20 years ago I had a 5 year period of severe illness. Went to all sorts of doctors, and nobody knew what was wrong. My life was in a shambles, and I could barely function. It turned out that one day I found a wholistic doctor who suggested a 5-hour Glucose Tolerance Test, and it turned out I had Low Blood Sugar (hypoglycemia). A simple change in diet, and it saved my life at the time. I bought all books on the subject and I recognized my case in all the pages of the books.  But I lost 5 years of my life with those doctors, not one of whom ever asked, "What do you eat? What do you put into your body?".

Even with this present condition, I went to one GI doc who looked at my white coated tongue and said, "That's from taking Maalox". Well -- ummmm..... I've never taken Maalox, nor did I mention anything about Maalox to him.  This same guy yawned several times as I told him my medical problems.  

I'm also in this mess because a GI doctor told me I needed to have my gallbladder removed in the first place. When he first suggested it and I told him I'd already done research and have heard that people may experience chronic diarrhea for life as a result of this surgery, he blatantly assured me: "That won't happen to you. And even if it does, there's stuff you can take for it".

Well:

#1 -- Wrong. It DID happen to me.

#2 - Yeah, there's stuff I can take for it, all right -- but it's given me unbearable side effects, and that's where I'm at here.    

This is why you have to understand why I doubt regular doctors and am bitter about them. I have good reason. 20 years back with the hypoglycemia, not a single one of them ever asked about what foods I ate, none of them ever scratched that surface. All they thought of were drugs and even psycotherapy, all of which - of course - made things WORSE. You live and you learn, and that's what that experience taught me about doctors. And for the past 1 year to this date with my recent mess, it only verifies it further, unfortunately. This is my opinion. I have read similar things from people about their doctors regularly on many "health" related boards, so I know I am not the only one out there who loses faith in them at times. Especially when it's a condition that's been going on for a very long time and they get nowhere. 

I hope you understand. I appreciate that you edited some things out of my old post there, but I wish you would have refrained from later referring to that subject matter in your own response! Sort of negates taking it out in the first place.

In short, when we all get right down to it, it's all about Quality Of Life.  And I will accept nothing less.

Post Edited (Joe9) : 6/30/2008 3:29:22 PM (GMT-6)

Posted 7/2/2008 3:07 PM (GMT 0)
Oh I understand alright. Surgeons and Gastro docs just don't get it. First off surgeons are often times - cut happy. They're lousy at post-op. Great at finding a solution for you (surgery) but don't want to deal with the aftermath. Gastro docs are infamous for not getting to the root cause but rather treating the end result (pain, D) with meds. Just pop a pill - you'll feel better. Wrong, wrong.

I am in the camp now - you are what you eat.

I am also in the camp - maintain what I have (90% sigmoid gone, 15 inches less colon, no GB, due to rectal cancer, 1999), don't surgically changes things.

I have multiple bm's each day, not always D but definitely a putty stage that is very hard to turn around. My favorite stool stage is formed, easily passed (meaning in and out of the bathroom, each time, no mess, picture rabbit droppings, since my sigmoid is just about gone, my output is minimal each time).

I still laugh at the advice I received after my temp ostomy takedown - "eat anything you want, but in 4 to 6 meals a day, not 3". The doc had the small meal suggestion correct, however the anything I wanted was out. I have to follow a low residue diet now - even 9 years later. Also he said to "enjoy life, take Imodium".....sure that works well too - not!

I also have a chuckle over my current colon surgeon's suggestion - "why don't you get an inverted colostomy, as low as possible, irrigate it once a day, wear a bandaid and get on with your life!"

Well, thank goodness I found an ostomy board, for irrigators. They have nothing BUT trouble! They have to irrigate (fancy way of saying what we all often do, give ourselves enemas) for hours, some 2 to 4, some 5 to 7 a day. A DAY! The bandaid is really a large bandaid, she had that correct. It's a bandaid for ostomates - called an Am Patch. Also the equipment to irrigate doesn't come cheap and we have lousy med insurance right now. I just don't believe I could go back to eating anything I wanted, choose my time (morning or evening) to irrigate and I could "get on with my life". Sure, I buy this - not on your life baby do I buy that this is so easy to do either!

For now, I'm taking her irrigation suggestion but going back to my own trusty ways - plain diet, keep stress level low, doing a Fleet's enema once a week (which actually gives me 2 or 3 great days afterwards) and definitely avoiding foods that irritate my GI tract.

I think we all have to take doctor's advice with a grain of salt. If they have walked a day in our shoes, then they really have no idea how much we struggle.

Surgery and medication are not always the answers. Root causes are, IMHO (food, etc.).

Mary
Posted 7/3/2008 12:04 AM (GMT 0)
Thanks for replying, Mary. Wow - it seems like you're really having a difficult time. I can only say I wish you the best, and at least we can relate to the rigors of having such troubles and dealing with the doctors.

Just today I went to my regular doctor, whom I haven't seen in 3 months for this particular problem. He smiled mockingly when I told him I was now using raw apple cider vinegar as a natural remedy to help combat stomach acid issues (and it's even helped a little!). When I mentioned that some people were getting help with their diarrhea from using Calcium, he pretty much said that it wouldn't do any good. When I told him I am positive that the bile sequestrant drugs I must take are making me suffer like this on the side, he doubted they had anything to do with this. When I told him I'd read about PPI drugs (like Prilosec) causing intestinal cancer, he told me this was just untrue, and that there have been NO CASES of people getting cancer from those drugs. He thought he was proving something to me when he said the PPI drugs have been around a long time without any such negative reports -- until he said that the "long time" he was referring to was a mere 20 YEARS!! Good God --- does he really think 20 YEARS is a long enough time to gauge what could happen with longterm usage??

Look -- despite how it sounded here, this doctor is really a nice guy. But he's a pill-pusher, and not really big on "alternatives" or "natural remedies". He prescribed a new drug for me to try (to combat this chronic sour taste and reflux/acid issues), but he is aware that I go on the internet regularly to learn all about medicines first, so he told me not to even try taking it unless I was comfortable after reading about it. I'd rather not mention the name of the drug right now, only because I don't want to be scared away from it just yet!

But I generally don't believe in drugs of any kind. And what scares me more than anything about doctors is that everything changes from one individual to the next! All those things I just related above might be scoffed at by ANOTHER doctor! So just because this guy says PPI's don;t cause cancer, the next guy might say HE'S crazy and that they do cause cancer. Just because this guy says he thinks I'm dealing with a reflux issue, that doesn't mean the next guy will arrive at the same diagnosis!!

The way I see it, there should be only ONE accurate answer to medical problems, and the specifics should not alter between different doctors. If you see FIVE doctors, you'll get FIVE different diagnosis' and treatments! They can't all be right. Meanwhile, we the patients are the guinea pigs!!

I have another appointment July 7th with a different GI doctor (ha ha). I laugh because, just as Mary said above, I know EXACTLY what to expect out of this futile exercise. Actually -- I saw this particular doctor back in 1999 for slight stomach troubles (back when I still had my gallbladder). The place is run like a small factory -- with endoscopys and colonoscopys done right there on the premises, like clockwork. He'll just try to get me in for an endoscopy and/or colonoscopy... and when all is said and done, he'll prescribe Prilosec or Prevacid, just to treat the symptoms instead of the root cause.... he'll scoff at my insistence that the bile sequestrant drugs I HAVE to take are the things which make me suffer reactions like I've been experiencing for the past 1 year and 2 days.

But we're stuck, so we go anyway. And I find that doctors don't give me enough time to accurately describe all of the symptoms I'm experiencing and I always feel rushed. Inevitably, I leave and realize I forgot to tell him this or that... or maybe I should have described this or that symptom differently... I never manage to remember or get everything in there 100%.

Just an update:

1) Right now I am taking a teaspoon of Metamucil in 8 ounces of water in the AM, as well as 2 tsps of Raw Apple Cider Vinegar in 8oz water ....

2) ...an hour later I take 2 tablets of Welchol in the AM, along with 1 Calcium tablet (Caltrate), just in case it aids with helping the acid.

This particular combo has improved things A LITTLE in the last several days. My tongue is still sour, but not AS sour... and the coating is nowhere hear as intense as it's been for the last year. So this is a start...

Post Edited (Joe9) : 7/2/2008 6:17:52 PM (GMT-6)

Posted 7/3/2008 1:46 AM (GMT 0)
Joe - just the other day I read a local article in my daily paper (Cincinnati), about an elderly man who is very healthy. He swore by having a glass of tap water with 1 tablespoon of apple cider vinegar and 1 tablespoon of honey, each evening. He isn't on any daily medications, as many of his friends are (high blood pressure, cholesterol, etc.). He has done this for over 30 years. So maybe you have something there. He was trim and fit, wasn't overweight but I got the impression he ate healthy and exercised daily too. But he touted the vinegar as his tonic. I hope it does work for you.

I agree about if you see 5 doctors, you will receive 5 different opinions.

After my rectal tumor was found (1 inch, barely inside), I was referred to a top notch colon surgeon. I didn't know much about colon resections, etc. I just trusted him. He did save my life and did an excellent job on my resection (or so my Gastro doc would say, during flex-sigs, etc. "Look Mary, look at how well your surgery turned out...." I did not want to look, was he crazy? LOL). So anyway, my surgeon took out 90% of my sigmoid, then 15 inches of my colon, hooked up my remaining colon to my new 1/10th sigmoid, gave me a temp colostomy, etc. He did say - this will turn your world upside down. I thought he meant the post-op pain (which was worse than labor and delivery!).....long story short, he did my takedown surgery but moved out of town. His partner took over my care. As time went on and I described how often I was in the bathroom, he admitted he would have given me a J-pouch and a temporary illeostomy. That would have been his approach. My current colon doc was referred to me since she's good at bowel retraining and exercises (they didn't do squat, but she has an excellent reputation, should I ever need emerg. colon surgery, that's the only way they're cutting on me again!)......she listened to me cry after one of my exams with her. She just sighed and admitted outloud - "sometimes I wonder if we should even be doing these surgeries....." Meaning, in the old days you were just given a permanent colostomy and that was it. You dealt with it and life went on. I could tell though, that she didn't agree with my initial surgeon's approach. But we're here now and let's just make sure my cancer doesn't ever return.

So there's 3 different opinions. I'm not sure what she would recommend to another patient like me. I do know she's on the cutting edge of these inverted colostomies. That's probably what she would suggest.

I'm just not buying it's an easier way to deal with my situation. For now, I'm putting up with my body, the way it is. Unless I have a perf or blockage, or God forbid, cancer again, I am steering clear of surgical rooms!

I wish you my best Joe......it's just not an easy road we travel on. Especially when so many people around us (family, friends, coworkers, neighbors, etc.) have "normal" colons, GI tracts, etc. I certainly don't want anyone's sympathy but I'd rather people just trust me when I say I am anything but normal. And have to deal with my situation the best way I know how.

The only sure fire way I've determined to help me the most is fasting (short periods). Yes, I do skip meals sometimes. I have to! Otherwise I wouldn't go on trips with my family or attend special events such as weddings or formal functions.

Well, I've written a book here......hang in there. Hope the vinegar helps you. I truly do.
Mary/Marsky

Post Edited (Marsky) : 7/2/2008 7:50:14 PM (GMT-6)

Posted 7/3/2008 10:16 AM (GMT 0)
I'm hanging in, Mary... and you do the same! You're so right too when you explain about "other people being normal"... it drives me crazy, actually. Nobody can understand, everyone thinks it's all in your mind or that you're a hypochondriac.

Meanwhile, this morning I got up nice and early and googled a lot of information on the drug that my doctor suggested I try out. I am horrified and devastated by the side effects i've read about this medication. Well, there's no point in hiding the name anymore - it is REGLAN!!!!

Keriamon will be interested to know that this is a drug that deals with "slow stomach emptying", and even though my doctor is not a GI person, I guess this was where his mind was heading too, with my complaint of constant sour mouth taste for a year. WELL, MY DOCTOR IS A QUACK. I can't believe that after all the concerns I have about medications, he actually has the audacity to recommend something so horrific! Just get a look at these side effects:

tremors, or restless muscle movements in your eyes, tongue, jaw, or neck;

mask-like appearance of the face;

fever, stiff muscles, confusion, sweating, fast or uneven heartbeats, rapid breathing;

depressed mood, thoughts of suicide or hurting yourself;

hallucinations, anxiety, agitation, jittery feeling, trouble staying still;

swelling, fluid retention;

jaundice (yellowing of your skin or eyes); or

seizure (convulsions).


---- FORGET IT!!!!!
Jeez ... I'd rather live with the chronic sour taste!!!!
So this is the breakthrough my doctor comes up with!?!??
And what if I DON'T have "slow stomach emptying"??
Is this really something worth even trying??

So now I'm even more hopeless and miserable.

I was a normal person who had his old brand of cholestyramine discontinued 1 year ago, and ever since then no matter what other brand of cholestyramine or bile sequestrant I try, I get all sorts of stomach discomforts and a sour taste in my mouth. What's so  hard to understand, and why is this so hard for them to believe?

Post Edited (Joe9) : 7/3/2008 4:21:20 AM (GMT-6)

Posted 7/3/2008 2:19 PM (GMT 0)
Joe, I have taken Reglan before and it's never done anything to me, except empty my stomach.  My mother's been on and off of it for years.  Mind you, I've not needed to take it daily, like she often has to, but it's a lifesaver for me when I get something sitting on my stomach that just will not go anywhere.  You know, wake up in the middle of the night, belching pizza.  I keep some on hand for just such problems and it takes care of it just fine.  I wake up in the morning starving--but that's because the pizza (or sour milk or what-have-you) is gone.

Reglan has been on the market for at least two decades, so it's not something they've just thrown out on the public without goodly amounts of testing (I know, I tend to distrust new drugs myself).  If you have those side effects, then by all means, stop taking it immediately.  I know there are people on here who cannot take it.  But you may be like me and my mother and it doesn't bother you.  And it may help.   

Posted 7/4/2008 10:49 AM (GMT 0)
Keriamon, I have a GI appointment Monday, and I'll swing the "slow stomach emptying" thing by him. The idea that my regular Family Practice doctor prescribed Reglan without even doing a stomach emptying test is just not kosher with me. If I get the test done to determine for a fact that I have this issue, I may then be SLIGHTLY more inclined to try the medication. But then I have to laugh, because it says it is a "short term" medication. If my troubles are adverse reactions to the bile sequestrants (and I believe they ARE), and I have to take the bile sequestrants every day to stop my bile diarrhea, then what good are "short term" supplements like Reglan, Prilosec, or Carafte (I should mention that I saw another GI back in March and he prescribed Carafate -- for ulcers -- which I haven't taken either).

I spoke to my sister yesterday, who has been ill with all sorts of back problems and female issues over the last several years. She told me that she took Reglan for awhile, and it didn't harm her (though she's on so many different meds that she often looks 'out of it'). But the reason her doctor prescribed Reglan for her was that she had an opposite problem -- she was unable to go to the bathroom at all, with no bowel movements for days! Now, THIS makes more sense to me.  If anything, I am having digestion that's TOO FAST, not too slow. Unless, in some ways, it is the Welchol, Colestid, and Cholestyramine which are slowing my system down..

I have to say that my throat has been hurting me for 11 days now.... a new symptom. I am praying that this is just some type of "regular" sore throat, but in the back of my mind I keep getting worried that this may be the first signs of the dreaded "Barrett's Esophagus" , perhaps wearing away the lining because I may have been suffering from reflux for the past year. Which is why I may ask my GI guy to prepare another endoscopy, just to check that out. I wouldn't be so concerned about this throat thing except it's unusual in that it stops and starts again, stops and starts again. Sometimes I think it's finished, then it feels irritated again...

Thanks for the input, all.

Post Edited (Joe9) : 7/4/2008 4:54:48 AM (GMT-6)

Posted 7/12/2008 12:11 PM (GMT 0)
Just an update, for what it's worth...

Several days ago I went to a GI doctor that I kind of like. At least when I told him the history of my year-long problem he ordered some blood tests, which is more than I could say for other docs I've been to. I asked him about the possibility of "slow stomach emptying", and mentioned that my regular FP doctor had suggested Reglan, and he laughed about the idea. He said that might be an issue if I was constipated, but since that's not my trouble there's no need to find more things to worry about by "speeding up my stomach emptying". This is pretty much what I fiigured.

Of course, despite how much I tried to impress upon him the importance that I had great health for 5 years until the very moment I began taking a different brand of Cholestyramine, he just went and told me to try finally taking acid reducers, which I had been avoiding up til now. I don't believe in drugs, and I really think these PPI's are dangerous... but I'm so desperate at this point that I have no choice but to play along for awhile and see what happens. He told me to take Nexium once each day for 10 days (he gave me free samples) and then to take Prilosec OTC twice a day after that for 2 more weeks ... and then come back and see him.

Well, it's been 5 days on the Nexium already and I don't notice any big difference in that I still have a sour taste in my mouth and coated tongue. But I have to see this through... it's time to try some things out. Also very scary is that I still have this sore throat... it's been going on for almost 3 weeks now, and what's weird about it is that it comes and goes; sometimes I'll think it's gone, then it comes back, and it feels a little "tight" at times to swallow saliva. Sometimes I'll have a half day or one whole day where I think it's completely vanished, but it returns! I did some research and found that the WELCHOL I've been taking for 6 weeks now has given some patients a sore throat, and in some listings, "sore throat" is among the possible side effects. So just as a precaution I tried discontinuing the Welchol yesterday and I returned to my old COLESTID powder for my bile diarrhea. I still have a sore throat though, so if the Welchol had anything to do with this, maybe it takes a few days.

Post Edited (Joe9) : 7/12/2008 6:14:49 AM (GMT-6)

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