correspondance with my GI

[Lesley]

My note:
I have been taking the carafate qid, with the nexium bid since you prescribed it. It worked until a couple of days ago, when suddenly the old troubles came back big time. Pain when swallowing, burning in the back of my throat, terrible attacks of burn and nausea when I take my meds, especially at night. I take the meds (very little)an hour after I take the last dose of carafate, and about an hour later the pain hits.
I have to take softeners to get my bowel going, and when it does I can see considerable mucous present, often pencil thin stools, lots of weird stuff.

The exhaustion is really bad lately. My back has been really bad, but I don't want to take pain pills because of the MC, so I am completely worn out with trying to deal with it.

Any ideas for me? I am truly struggling.

His reply:
REgarding your bowel movements And colon: The diameter Of the stool is Determined by the amount of fiber , hydration And anal sphincter pressure . Rarely does it represent a sign of rectal cancer. Your last colonoscopy was just 2 years ago . Would recommend fiber supplement every day such as flax seed or Citrucel Or Fiber con. A stool softener May be used daily without adversely effecting the colon.
The Carafate And nexium may be Controlling The acid reflux But Maybe your Having Non acid reflux As well. For this I recommend that my patient use lemon lozenges Throughout The day To increase bicarbonate and fluid production from the salivary gland . An alternative reason for recurrence of symptoms may be the development of a hypersensitive esophagus Which I believe we discussed some time ago . The tricyclic class of medication can be used as Analgesics as well as antidepressants, but For analgesia the dose Is far less.

Comments?
I use citrucel daily.
I didn't mention colon cancer, nor did I even think of it. I don't know why he came up with it. I have NO desire to have yet another colonoscopy.

Non acid reflux? What is that?

What are lemon lozenges? Lemon candies? I chew gum, and/or suck on rock candy to stimulate saliva production and to avoid all the chemicals in typical lemon cough drops or candy .
Tricyclics? I am taking nortryptiline already. He knows that! I am certainly not adding anything having weaned myself off most of my meds.
Hypersensitive esophagus - translation (according to him) leaky esophagus. I know I have it. It;s not Barrett's. We know that.

Anyone have any ideas?

[tex]

Hi Lesley,

OK, everyone here should be well aware by now that I'm not a medical professional, but I'll add this disclaimer for any newbies or non-members who might be reading this. IOW, this is strictly my unprofessional opinion, and it should be regarded as such.

IMO, non acid reflux is caused by the use of PPIs. Basically, non acid reflux just means that the reflux is made up of non-acidic stomach contents. Actually, when you think about it, this has to happen, by default, because the PPIs suppress the development of acid, so if they're working correctly, then anything that comes up has to be non-acidic.

Some experts believe acid reflux medication may be at the root of other reflux symptoms for some patients, though there may be other causes and contributing factors as well. Many patients take medicine to control the acid in their stomachs and prevent it from being pushed up from the stomach into the esophagus. Acid reflux medication often works well for neutralizing the acid, but a patient may develop symptoms anyway. This may happen because the medication does the job of neutralizing stomach acids but cannot stop the contents of the stomach from being pushed up. As a result, the patient experiences the reflux of neutralized stomach contents.

http://www.wisegeek.org/what-is-non-acid-reflux.htm

The bottom line is that PPIs do not prevent reflux, they only neutralize the acid, so that patients are not as likely to realize that they're still having reflux. PPIs are a cruel hoax perpetrated on patients by pharmaceutical companies, in cahoots with the doctors who prescribe them. If that's not a conspiracy, I don't understand the definition of "conspiracy".

I seriously doubt that your esophagus is "hypersensitive" — it's just flooded with reflux, because the PPIs have pretty much destroyed any remaining clenching strength (muscle tone) that your lower esophageal sphincter might have had at one time.

There is a good chance that dehydration (not due to D, but due to inadequate hydration) is the primary reason why you are unable to produce normal amounts of saliva. Inadequate hydration concentrates the acid in your stomach (less dilution), and inadequate hydration in the colon results in C. Even mild dehydration causes major symptoms that some people don't even associate with it, such as fatigue and mood swings.

http://www.huffingtonpost.co.uk/2012/02 ... 88964.html

And the symptoms can only get worse, as the dehydration becomes more severe. IOW, dehydration is very likely a significant part of the reason why you feel exhausted, and why your muscles tend to be weaker than they should be.

Tex

[carolm]

Lesley, Obviously I'm not the resident expert here but my initial thoughts are that you still have inflammation as evidenced by the pencil thin stools and the presence of mucus. I was also prescribed a regime of fiber and stool softeners but it was to deal with the last of my symptoms such as my sluggish motility. At the time I was no longer having mucus or signs of inflammation. If you would like I can find the regime I was given and send it to you. I was told to start with 1/2 teaspoon of Citrucel every day for a week and increase it by 1/2 teaspoon every week until I found the minimum dose that was effective. My GI was very clear that the fiber would be in much smaller doses than is listed on the container. We were truly individualizing. As a matter of fact I got up to 1 and 1/2 teaspoons and it proved to be too much. Now I use 1 teaspoon of Citrucel per day, and I've been able to stop the stool softeners because I am eating more fruits and vegetables. I will say that between this and the Amitriptyline 10 mg my gut motility is near normal now, as long as I stay diligent on my diet.

As far as the reflux my experience with that is limited. I had gastritis and erosion when i was scoped and I had horrid nausea. I take Dexilant and that and diet changes have helped me heal, but I'm sure I did not have reflux to the degree you do. I'm just sorry you are still dealing with such consistent and severe reflux.

If I have any bright ideas I'll send them your way. take care,
Carol

[carolm]

Tex, we must have been typing about the same time. I appreciate your post above. There's lots of 'food for thought' in what you said. I also worry about being on Dexilant but the two times I've tried to stop it the nausea would return with a vengeance. Maybe I tried to stop too soon.... I still have hopes of being able to get off of it.

It's been 20 months since I was hit with the first big flare and I am now to the point I am getting some stamina back. I can get tired and not have to stop immediately. I do not get dizzy or nauseated when I become fatigued. Last week I started working out and I really felt like celebrating. Since I seem to be getting better all the time, maybe eventually I'll be able to ditch the Dexilant before I lose too much function from the esophageal sphincter. I've thought about taking it every other day and seeing how I do. I'll give that some serious consideration.

thanks
Carol

[Lesley]

Tex, thanks for the link and the explanation. I know PPIs are horrible, but when I try to get off them, slowly as I can, the pain and nausea come roaring back. I don't know how to get rid of the bloody things! Even a small reduction causes such a rebound reaction that I need more to control it. I was doing more or less OK with one nexium a day. Then I tried to get off it, and the rebound has been terrible. I now need 2 a day, and the carafate or I am in agony. Literally. And horribly nauseated.

Although I can't drink a lot of "free" water because of my hyponatremia I know I am not dehydrated because it's been checked many times, even as recently as last week, when I had tests by a urogynacologist. (Whole 'nuther story. Leaking in spite of surgery.)

I forgot to mention to mention to Susan - I also have recurrent UTIs, caused, I am sure, by the splash back when I have a BM - not D, but not Norman by any means. Cipro is usually the antibiotic of choice, so that's not the cause of the inflammation.

Carol, you and I seem to have similar reactions to this disease. I am using Citrucel, but it is not always enough. I supplement with Dr. Schulze's intestinal formula 1. I am taking a teaspoon of Citrucel am and pm. If it doesn't work I take a capsule. Sometimes it can take 3 or 4 days to work, but I don't stop because I get so constipated.

Yes, please send me your routine. I would happily try ANYTHING.

Oh, and you and I are on the same drug. (amtryptiline = nortriptyline) I am not even trying to get off it. I had a hell of a time ditching effexor, and the hydrocodone. I don't think I could deal with it right now.

[tex]

Hi Carol,

Congratulations. It sounds as though you've made a lot of progress.

From what I've read, it's much easier to wean off PPIs very slowly, (much like successfully weaning off budesonide, without prompting a relapse of symptoms). Presumably a very slow tapered withdrawal allows more time for the lower esophageal sphincter to regain it's clinching strength.

And, of course, the biggest risk of discontinuing a PPI (as Lesley has pointed out) is the rebound effect. It's very real, and it causes symptoms worse than the symptoms that are the usual reasons why it is prescribed in the first place. The paradox of PPIs, is that they cause the very symptoms that they are prescribed to prevent.

Based on the experiences of various members who have been able to successfully discontinue using budesonide, it appears that the most critical phase of the regimen is the final stages, when the doses become very low. I have a hunch that same approach may be critical to the successful withdrawal of many of the drugs that tend to cause a dependency by the body.

You're very welcome,
Tex

[Lesley]

Tex,
Since coming on this board I have weaned off prednisone, hydrocodone and effexor. Also hormones and a couple of others that didn't cause me grief.
They were all really awful, but none as bad as the nexium. I was nearly off it when the rebound kicked in. Trust me when I say that it was among the worst I have ever felt. about 2 hours of terrible pain + nausea getting worse and worse all the time. The worst wore off, but the pain remained all the time. The attacks just kept getting worse.
Now, if I even try to cut it down a LITTLE, the pain and nausea kick back in.

I would love to find a way to get off it, but I don't know how.

[tex]

Lesley,

I hear you. Too many people can't find a way to get away from them. That's what makes them so dangerous. The FDA says they shouldn't be used for more than 2 weeks, more than 3 times a year, and yet millions of people end up taking them virtually forever. They're huge money-makers for the drug industry, and they bring lots of repeat business for doctors who prescribe them, because of the additional health problems that they cause. It's a perfect example of iatrogenicity gone viral.

The only time I ever had a chronic reflux problem was after I was given a PPI for 3 days in a row while I was in the hospital, recovering from surgery. After I was discharged, the problem began. It took several months of "treatment" to get rid of the problem. I had to avoid eating for at least several hours before bedtime, and carefully avoid lying on my right side. Eventually, my lower esophageal sphincter (LES) regained it's normal clenching strength, and I was able to eat before going to bed, and sleep in any position, without any reflux problems. But it took a couple of years before my LES was strong enough that I could lie on my right side without feeling any heartburn or reflux symptoms. PPIs are about as evil as soy, IMO.

Tex

[Lesley]

So Tex, a person like me who HAS been on them for years, and, by trying to get off them caused a rebound so awful that I need double to control it, how do I get off them? Lying on my left side - done. Not eating before bed - tried, but the only thing that does help is some potato. Vitamin D? Taking.
I have a high pain threshold, but I cannot take the pain and nausea it causes me.
Any ideas?

[tex]

Considering how severely they affected me, after taking them for only 3 days, escaping from them may be a gargantuan task, for someone who has taken them for years.

You might ask your doctor about trying to phase in the use of one or more H2 antihistamines (H2 blockers) in an effort to replace the PPI with an H2 antihistamine. Whenever we begin to eat (or even when we anticipate eating, by smelling or seeing food), the body prepares for digestion by signaling to the parietal cells in the stomach to produce more acid for the food that will soon be on the way. It does this by releasing histamine, which is intended to activate the H2 histamine receptors in the stomach. An H2 blocker will prevent the histamine from attaching to the H2 receptors, and this will prevent the parietal cells from producing additional acid. Of course, an H2 blocker would have to be taken before every meal, since they are only effective for a short while (whereas a PPI virtually locks out acid production for up to 3 days after taking it, by chemically altering the parietal cells). H2 blockers are available over the counter, but stronger formulations are available by prescription. As you are probably well aware, some examples of H2 antihistamines are Zantac (ranitidine), Pepcid (famotidine), Tagamet (cimetidine), and Axid (nizatidine).

Whatever approach you take, the treatment will take a long time, and I'm sure it will be difficult to stick with it, because PPIs, (like many drugs) are designed to create a dependency, in order to ensure that patients will become hooked on them (to maximize drug company profits. Anyway, you might see if your doctor has an opinion on whether or not this might work, or whether he has a better idea. Of course, most doctors think that PPIs are the greatest thing since sliced wheat bread, so he may not be helpful.

Tex

[Lesley]

most doctors think that PPIs are the greatest thing since sliced wheat bread, so he may not be helpful.

Which is why I would try it on my own. I did for a while, but it didn't help. Maybe I need to do it for a longer period of time while trying to decrease the PPIs simultaneously.
Don't I need to take both an H1 and an H2 blocker? That's what I was doing, taking zyrtec and ranitidine.
I will have to get some H2 when I next go out, gird my loins (no idea how to do it) and give it another try.

What about the carafate?

[TXBrenda]

This is what I take instead of Prilosec,

http://www.drfitt.com/Robynzyme_p_77.html

A local pharmacy sells this so I do not have to order online.

[tex]

Sometimes adding an H1 antihistmine can help to suppress inflammation. I'm not sure that it will help to replace a PPI, but it shouldn't hurt, so it should be safe to try, at least.

Carafate is for healing ulcers in the stomach and duodenum. I have no idea if it might help to heal ulcers in the esophagus. If you continue to take it, be sure to take it at least 2 hours before or after any other medications, because it prevents most other medications from being absorbed properly.

Since certain antacids can interfere with the carafate, it's possible that it might not work well with an H2 antihistamine, but I really don't know — for all I know, they might work together just fine.

Robynzyme appears to be a blend of acid and digestive enzymes. It's sort of the opposite of a PPI. A PPI reduces digestive ability, whereas Robynzyme boosts digestive ability.

Tex

[TXBrenda]

Tex, thanks for the explanation. Good news is I don't have heartburn as long as I take it regularly. Also I take 3 before meals.

[wmonique2]

Lesley,

I take 4,000 IU of D3 three times a day at meals. I was having acid and when I started taking D3 it stopped immediately. I am sure you tried everything already...

Monique