Mini flare today and then I remembered...

mzh · Post by **mzh** » Thu Jul 26, 2012 6:21 pm

... what I forgot to take today. I was distracted by a contractor in the house and forgot to take my Betaine HCl at lunch as well as my L-glutamine. As I was cooking dinner, the wave of light-headed, semi-nauseous feeling of "Oh, I don't feel well" hit. Off to bathroom for some BMs. I took the Bet HCl with dinner and now and I feel much better. I know my docs think I'm peculiar for taking this stuff but it really makes a difference for me. Just thought I'd share with those who understand.

carol1946 · Post by **carol1946** » Thu Jul 26, 2012 7:58 pm

I'm fairly new to the site and suffer from CC plus more and am curious about your meds. May I ask what each is for and how well they work? My D is out of control right now and I can relate to the sudden attacks. For me they often start after just a bite or two. If not then, an hour or so later. I've run out of my Lomotil and can't fill till my next SS check. I also take Sulfasalazine for my CC. A year and a half ago I had to have a colonectomy (about 7" of the colon removed) with partial ileumectomy due to a bowel obstruction which was caused by scar tissue after 17 years of CC. I've had 7 or 8 falls and several concussions from going beyond light headedness to passing out. I'm also on Lortab, Elevil and Levothyroxin.

Thank you,
Carol

mzh · Post by **mzh** » Thu Jul 26, 2012 8:28 pm

Carol, you've clearly had an awful time. Sorry to read that.

Betaine HCl is basically an acid adder. Everytime I don't take it, my decent bowels (also know as Normans around here) and general well-being go away. The L-Glutamine is a supplement that's known to help heal the bowels. That's over-simplified but if you do a search on both supplements you'll learn lots more about them. That's not a Google search; it's a site search.

Interestingly, I was given sulfasalizine and it made my diarrhea go from bad to worse. So, you'll find that what works great for some is disastrous for others.

carol1946 · Post by **carol1946** » Thu Jul 26, 2012 11:34 pm

Thank you for the reply and info on both meds. I've been wondering myself as to whether the sulfasalizine might be a problem for me, too. After the bowel surgery, I had 3 months when I was able to eat anything and everything with no D. I was enjoying Stir Fry and apples every day.....but I can't remember if I was on the sulfa. Then one night when I ate two apples my world changed again.....so bummed!!! I imagin that I immediately reached for the sulfa. Guess I'll have to gear up for a little self-test.

Thanks again,
Carol

mzh · Post by **mzh** » Fri Jul 27, 2012 9:38 am

I had bowel surgery (a cecal volvulus) and I could barely eat for 3 months after the surgery, so again, everyone is different. LOL

You might want to keep a food diary and record what meds/supps you're taking and how your BMs were each day. Eventually you'll see a pattern of what's working and what isn't as well as what foods agree and which ones don't. That's how I knew the Bet HCl was working. Every time I stopped it things went bad; as soon as I restarted it, things got better. And the GI doc wanted me on omeprazole for 2 years! After 5 weeks of omepraaole my gut was terrible. I had taken PPIs long term before and the same awful stuff happened. Taking more Entocort didn't help either. So I did the exact opposite of what he wanted me to do. I took more acid instead of trying to reduce it. He knows what I'm doing but he said one pill with a meal won't make any difference one way or the other. Well it did. If I hadn't kept records I wouldn't have been to know what helped.

Post by **tex** » Fri Jul 27, 2012 10:28 am

Carol,

Here's some background information regarding the use of Betaine HCL:

As we age (and sometimes following abdominal surgery), our stomach tends to produce less gastric acid (hydrochloric acid). This can cause poor digestion, resulting in what's known as acid indigestion, heartburn, and in some cases acid reflux, or GERD. For some unknown reason (probably because of the fact that doctors these days get most of their training updates from drug company reps, rather than med school training courses), virtually all doctors assume that those symptoms are caused by too much stomach acid, and so without doing any testing, they prescribe antacids, H2 antihistamines, or PPIs, to treat the condition -- exactly the opposite of the treatment needed. Doctors love to write prescriptions. Betain HCL is available OTC, so it's off their radar.

Betaine HCL prompts the stomach to produce more hydrochloric acid, which helps to get the digestive process off to a much better start, and it also helps to maintain the proper low pH in the stomach so that most food-borne pathogens cannot survive, thus helping to prevent intestinal bacterial infections.

Betane HCL is taken at the beginning, or slightly before any significant meal, especially meals that contain significant amounts of protein. If you want to try it, it's best to start with one capsule at each meal. It should cause a warm feeling in the stomach after about 15 or 20 minutes. If not, you may need a higher dosage. If it causes a burning sensation, instead of a warm sensation, you are either taking too much, or you don't need any supplemental HCL.

Tex

mzh · Post by **mzh** » Fri Jul 27, 2012 1:29 pm

Tex's explanation is right on (as usual). Here's a slightly different way to tell if you need Betaine HCl. I found it online in several places. I did it; it's a tossup between one and two caps for me. I need to do it again.

Betaine HCL home test
1) Day one: 30 minutes before breakfast - one tab 650 mg capsule Betaine HCl; if burning occurs, you don't need it.
2) Day two: if no discomfort on day one, take two caps. If there is discomfort, the correct dose is one cap with each meal.
3) Day three: if no discomfort with two, take three caps. This will be the dose taken with each meal.

BTW, it's usually packaged as Betaine HCl with Pepsin. One shouldn't take it if there is no protein in the meal.

carol1946 · Post by **carol1946** » Fri Jul 27, 2012 5:05 pm

Honestly, I have learned more about my conditions in 7 days on this site than in 17 years spent doing research on my own!!! I thank you all.

I've been taking omeprazole once a day since 2003, after ER visit, for acid indigestion, heart burn and acid reflux. Wouldn't it be something if even some of my D is being caused by that!!!
So, when testing the Betaine HCL.....do I stop the omeprazole cold turkey?

I did keep a diary for 6 months, noting what I ate and when, how much D and when and the same for medications. At the end I attempted to chart it all it, but, I really couldn't find any patterns except that my D seemed to be at a higher level when I would forget to take my sulfasalazine. I was not on Lomotil at the time. I realize that Lomotil is a med that just delays the inevitable but it does seem to help keep the trips to the bathroom more like 2 - 3 per day instead of 15+ for me. I've been out of it for a week as well as Tramadol so my norm has been abnormal. Yes, I'm a "bucket-mouth".....if it weren't for the heat here in Nevada, I would most likely write more than I do which is already too much.

Back to the room with the fan.......
Carol

mzh · Post by **mzh** » Fri Jul 27, 2012 6:26 pm

carol1946 wrote:I'm fairly new to the site and suffer from CC plus more and am curious about your meds. May I ask what each is for and how well they work? My D is out of control right now and I can relate to the sudden attacks. For me they often start after just a bite or two. If not then, an hour or so later. I've run out of my Lomotil and can't fill till my next SS check. I also take Sulfasalazine for my CC. A year and a half ago I had to have a colonectomy (about 7" of the colon removed) with partial ileumectomy due to a bowel obstruction which was caused by scar tissue after 17 years of CC. I've had 7 or 8 falls and several concussions from going beyond light headedness to passing out. I'm also on Lortab, Elevil and Levothyroxin.

Thank you,
Carol

Carol, I just re-read this post. If you have a problem after one or two bites you probably have a food allergy to whatever was in those two bites! I was that way at breakfast. The only common denominator to me was coffee. As soon as I quit drinking it, the morning runs to the bathroom stopped. It would be interesting if you tried Entocort though. In my case Entocort always worked until last year. When it stopped working, apparently the irritation from coffee over the years had finally kicked in and said STOP! ENOUGH OF THIS STUFF! But coffee doesn't bother all of us, so your mileage may vary.

mzh · Post by **mzh** » Fri Jul 27, 2012 6:40 pm

carol1946 wrote:Honestly, I have learned more about my conditions in 7 days on this site than in 17 years spent doing research on my own!!! I thank you all.

I've been taking omeprazole once a day since 2003, after ER visit, for acid indigestion, heart burn and acid reflux. Wouldn't it be something if even some of my D is being caused by that!!!
So, when testing the Betaine HCL.....do I stop the omeprazole cold turkey?

The recommendations are to not stop omeprazole cold turkey; it may make your acid production go into overdrive. You may have to wean yourself off it. If you get the tablet form you can split pills but I have no idea how you should do this; hopefully your doc can tell you how. On the other hand if you're very low acid actually getting more acid may give you a lot of relief!

Is there any specific reason you've been on it for so long? I know it plays havoc with my system. When I was on Aciphex for a few months my bowels turned to dark mud. I really felt like I was dying. I did stop that cold turkey and I felt so much better in a few days. In my case I needed the acid rebound b/c apparently I had little to none in my system. But taking it since 2003 is so much longer than I did it but it may indeed be causing some of your diarrhea. If your proton pumps are totally inhibited you may have no acid in there and you'll have trouble digesting anything. Try the betaine test; that will give you a quick idea if you're low acid or not. The technical term for low acid is hypochlorhydria. No acid is called achlorhydria. Ask your GI doctor what he or she thinks about these conditions. Let us know if the doc ever heard of these terms - or not.

Post by **tex** » Fri Jul 27, 2012 7:10 pm

Carol,

PPIs tend to cause a severe dependency after long-term use, and they can definitely cause major physical alterations to the lining of your stomach. If you don't have permanent damage, just stopping the use of a PPI may restore your acid production, and preempt any need for Betaine HCL. The primary action of a PPI is to suppress gastric acid production. As Marcia pointed out, though, it may be difficult to wean yourself off the drug, because the rebound effects can include GERD.

Tex

carol1946 · Post by **carol1946** » Fri Jul 27, 2012 7:20 pm

In answer to "why so long" on the omeprazole.....When I run out I immediate develope painful stomach cramps that go away as soon as I start taking it again. My biggest problem is that I can't afford a GI or even a second colonoscopy.....I can only financially handle the Medicare copays for one doc. Fortunately, I've found a super PC doc who is very understanding and does her best to handle all my conditions. She is also open-minded when I ask for a med that might help my CC. I don't see her very often, money issues, but I'm scheduled for a MRI of my back and will need to see her for the results. I will certainly have some questions in regards to what I'm learning from the group. In the meantime........what are PPIs, SSRIs and I think Tex used IOW???

THX again!!!
Carol

Post by **tex** » Fri Jul 27, 2012 8:24 pm

Carol wrote:what are PPIs, SSRIs and I think Tex used IOW???

PPIs are proton pump inhibitors (such as omeprazole). SSRIs are selective serotonin reuptake inhibitors. SNRIs are serotonin-norepinephrine reuptake inhibitors. IOW means in other words. Here are some other abbreviations often used on the board:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=845

Tex

carol1946 · Post by **carol1946** » Fri Jul 27, 2012 9:30 pm

Thank you, Tex.....Seems like I can always count on you for answers.....it really means a lot. The SNRIs, particulary Zoloft (which I was on at the time of my CC onset), Paxil, Prozac, and Welbutrin have all intensified my D, thus, I don't use them. More recently my PC prescibed gabpentin for nueropathy.....big mistake. The D tripled but I stupidly stayed on the med for 3 or 4 weeks, at which time I proceeded to black out after a visit to the toilet. My body spun arournd causing me to hit the doorknob on my closet door which did some damage to my upper back to the left of my spine and then a good blow to the left side of my cervical spine. Thus the upcoming MRI. I already know that I have several degenerated discs, spinal stenosis and curvature of the spine. Thanks again for the help!!!

Carol

Lesley · Post by **Lesley** » Fri Jul 27, 2012 11:04 pm

This place saved my life. Literally! Don't hesitate to ask questions. You never know who has an answer for you.

"The recommendations are to not stop omeprazole cold turkey; it may make your acid production go into overdrive."

Happened to me. Horrible. I had to go back on nexium, but I am trying, again, to wean off it.

I am trying to up the acid with apple cider vinegar. It's not easy, but it does help - sometimes.