Symptoms never end

[Shewolf36]

I was diagnosed with colitis 10+ years ago, and my 2nd flare-up started 13 months ago, but it won't end!  I'm still with gas, bloating, blood & lots of mucous (sometimes nothing but mucous & blood), frequent loose stools, sometimes explosive and hard to hold, abdominal pain, fatigue and lots of joint pain.  
I tried sulfasalazine & got pancreatitis (but I don't drink), prednisone (and dealt with the numerous nasty side effects), Colozol did nothing, neither did Asacol, 6-mercaptopurine is another immunosuppressant, but it isn't working and Cortenemas and Rowasa only work for a few weeks.
This is making me crazy!  Does anyone have a suggestion that is not surgically oriented?  I'm not ready for that yet!  I'm 41 and used to be physically fit and very healthy until this hit me and laid me flat.  Any ideas, suggestions?  Thank you!

[Concerned lady]

This has got to be so frustrating for you! But here are some ideas that may give you a different direction to go in, toward regaining your health:

1)Look for better docs,

2)Investigate possible food sensitivities, like Celiac Disease (gluten intolerance), Milk allergy, Lactose (milk-sugar) intolerance, etc.

3)Use probiotics, (to repopulate the beneficial bacteria needed in the large intestine, but destroyed by various medications), such as Bifidus infantum (related to Acidophilus).

I'm going to post some (holistic, drug-free) GASTRIC REFLUX TIPS, which include many ideas & a book reference that you may find helpful:

Some GASTRIC REFLUX TIPS (without acid blockers): These include ideas about more than just reflux:

Please check with your doctor, first, before trying these tips to be sure they are safe, in your particular situation.

GER=Gastro-Esophageal Reflux. (Gastro=stomach. Esophagus=food tube.)

LPR= Laryngeal-Pharyngeal Reflux. (Larynx=voice box, containing the 2 vocal cords. Pharynx=throat, above the larynx. The larynx is above the trachea/windpipe.)

Reflux=acidic or alkaline stomach material that backs up into the esophagus (food tube), causing any of these problems (at least): VCD/Vocal Cord Dysfunction/Laryngospasm attacks, cough, voice problems, asthma, globus (feeling of lump in throat), constant need to clear throat, much extra throat mucus, worsening of sinus condition, sore throat, laryngitis, voice problems, pre-cancerous conditions of throat &/or esophagus, etc.

SOME GER/LPR CONTROL THINGS WE DO, that we learned from the excellent book: STOMACH AILMENTS AND DIGESTIVE DISTURBANCES, by Michael T. Murray, N.D. See page 9, References, in my website: http://cantbreathesuspectvcd.com   and, also see GER/LPR info on page 5, and on LINKS page.

PLEASE READ THIS GREAT BOOK. It may possibly be bought on-line, from Michael T. Murray’s website.

Some of the following we learned from people &/or other books, &/or other good websites about voice, GER, etc.

(1) DGL (De-Glycyrrhizinated Licorice) is one of our main methods of controlling the GER/LPR. We use Enzymatic Therapy brand DGL, shortly (about 20 minutes) before ALL meals (breakfast, lunch, supper, and snacks). The DGL does NOT cause high blood pressure, and does NOT cause fluid retention/edema, because a bad (steroidal) part of whole/crude licorice has been removed, leaving the DGL. Chewable DGL tablets are available at most health food stores, and at good pharmacies. DGL capsules are said to not be effective:
  
The DGL tablet(s) must be chewed, to mix with saliva, to be effective. If a DGL tablet is too dry (which could cause a cough), one could put a few drops of water on the tablet, and then chew it up. Chew DGL tablet(s) just for a few seconds, to mix with saliva, shortly before (about 20 minutes before) EVERY meal, and if necessary, between meals (Read label directions). Chewing the DGL tablets for TOO long a time, may cause a burning sensation on the tongue & in the mouth. (I do not know if this is from the DGL, or another ingredient).
  
The DGL seems to not only promote healing of throat, esophagus and stomach, but also seems to help prevent OUR reflux.(resulting in no more globus/lump in throat sensation, no more constant throat clearing, excess mucous, excess phlegm, no more NIGHT-TIME VCD/Vocal Cord Dysfunction/Laryngospams attacks, no more laryngitis, etc. for us)

We like the taste of the plain, fructose-free, DGL CHEWABLE tablets, but for those who hate the taste, try mixing a crushed DGL tablet with a tiny bit of mashed organic banana, and then chew, to mix with saliva. Avoid any DGL that contains mint. (Mint—in all forms, can cause gastric reflux episodes. AVOID MINT!!).

Here’s how to pronounce "De-Glycyrrhizinated" Licorice: "dee gl eye sir rise in eh ted" licorice.

(2) We use Thayers brand of SLIPPERY ELM Throat Lozenges when we feel the need. (Soothing, coating, healing, nourishing). Slippery Elm (inner bark from a tree) also comes in teabag form, or in bulk, etc. as an herbal supplement.

(3) We drink the occasional small glass of CARROT JUICE (organic, fresh) which soothes, coats, heals the digestive tract, is nourishing, and stimulates the immune system, with beta-carotene, soothing and coating PECTIN (a type of fiber), and other good nutrients. Carrot soup, cooked carrots are also good. Beta-carotene is heat resistant. Beta-carotene later is turned into Vitamin A inside us. Do not overdo on carrot juice. If your skin turns orange, drink less carrot juice. Avoid beta-carotene pills -- too potent (can harm the liver, if one has liver problems).

(4) We tried elevating the head of the bed a few inches, by putting 6 inch to 8 inch BLOCKS, ON THE FLOOR, under the head end of the bed. This creates a slant (tilt), where the head is 6 to 8 inches higher than the feet. This helps some people, but not all people. (Check with a pediatric Gastro-enterologist, about raising the head end of a bed of a child, or a crib of an infant). Also, see (16) about a special GERD PILLOW, for adults.

(5) We try NOT TO BEND OVER too often, and we try to AVOID STRAINING (Valsalva maneuver). We AVOID LIFTING HEAVY objects. (No weight lifting!) (at least until after no more reflux symptoms for 3 months). Sit without any pressure on the abdomen or stomach (knees lower than hips). Avoid running (shakes up the stomach). Avoid gymnastics, etc. Walking is best, until fully recovered.

(a) If CONSTIPATION is causing any straining, see Ref.15,18,23,24,25 on page 9 for ideas about gently treating constipation, including eating whole grains, not white (de-natured ones), etc.  For us, exercise, increased water intake, acidophilus/bifidus, digestive enzymes, avoiding junk food, improved diet, chewing slowly (takes will power!), eating when not under stress or angry, etc., all are helpful.

(6) NO MORE TIGHT pants, belt, corset,--AVOID TIGHT CLOTHING, avoid tight elastic around waist, etc.

(7) We try to not eat too much junk food. Some people avoid acidic  food, while others need to eat acidic food, if their stomach is not producing any (or enough) acid. (It is good to avoid acid, if one has an ulcer.) These gastric reflux tips methods often can help to heal ulcers. Some people need betaine hydrochloride supplements, which becomes HCl/hydrochloric acid, or, some use vinegar (acetic acid) in salads, or mixed with water, while others need to avoid eating excess acid. Each person is unique. We avoid all artificial sweeteners. Anyone with diabetes can read the excellent book Reversing Diabetes, by Dr. Julian Whittaker, M.D..

Diet soda pop contains the harmful artificial sweetener Aspartame (Equal/Nutrasweet), which can cause WEIGHT GAIN, HEADACHES, UPSET STOMACH, BLURRED VISION, BLINDNESS, TWITCHING, SEIZURES, BRAIN TUMORS, HYPERACTIVITY, MOOD SWINGS, ETC. Also, soda pop often has strong acids, plus other harmful artificial ingredients. Plain water, gentle herb teas, certain fruit juices (diluted with water, to prevent dehydration), brown-rice-milk, etc. are healthier substitutes for soda pops.

We try to avoid artificial ingredients, including fake fats (like Olean, Olestra, etc.), because these can greatly hurt the digestive system, and prevent absorption of vital nutrients, such as fat-soluble vitamins (A, D, E, K) from foods. These fake fats also prevent digestion and absorption of needed fats & oils, used to repair myelin nerve cell sheaths (made of fatty material, mostly cholesterol). Hormones are also made of mostly cholesterol.

Avoid no-fat, or extremely low fat diets. Fats & oils (organic olive oil, organic sesame oil, organic butter in small amounts, organic nuts, etc.) are needed to produce hormones, and to produce myelin sheaths for certain nerve cells. Diets too low in fats & oils, can cause neurological (nerve) damage, and hormonal imbalances.

(8)  We try to drink more water, to prevent chronic dehydration. We like hard (nicely mineralized) well or spring water.
We do not drink distilled water (soft water, no minerals), because it can leach minerals out of our bones, possibly contributing  to osteoporosis. (See Ref.18,23, on page 9.) We avoid water softeners (chemicals) because they can be toxic, and because good minerals help keep us healthy. People with KIDNEY PROBLEMS &/or GLAUCOMA, etc. should ask their docs how much water is safe to drink, since too much water can be dangerous for them! (But, dehydration can cause problems also.)

(9) We use ACIDOPHILUS/BIFIDUS ( edible beneficial bacteria which keep bad YEASTS away, such as Candida Albicans, formerly called Monilia). ACIDOPHILUS/BIFIDUS also can eat or control some bad bacteria, and some viruses. The acidophilus/bifidus are also called PRO-BIOTICS and are beneficial intestinal flora (mainly for the large intestine). We keep the jars refrigerated, but not too cold. These are available at health food stores & pharmacies. (See Ref.14,15,23,24,25, on page 9).

Acidophilus/bifidus can re-populate the large intestine, with good bacteria, after antibiotics &/or steroids, etc. have killed off these good bacteria! Some of us have to continue eating the acidophilus/bifidus (daily, or from time to time), but the results seem worth the effort to us.

Yogurt and buttermilk contain similar beneficial bacteria, but are milk products, so see (11) below about milk products.

(10) We use DIGESTIVE ENZYMES. My husband likes Acid-Ease by Prevail, which contains Slippery Elm (inner bark), Marshmallow Root, Gamma-Oryzanol (from Rice Bran Oil), and the plant enzymes Amylase (digests starch), Lipase II (digests fat), and Cellulase I (digests cellulose from plant cell walls). The Acid-Ease does not contain Protease, which can be very irritating to ulcer/GER folks.

The Acid-Ease is NOT an acid blocker. It is not an antacid. It soothes, coats, nourishes, and promotes healing. Its enzymes help with leaky gut syndrome.

   I use Total Enzymes (which does have Protease, a protein digesting enzyme) by Nutri-West, a company that sells only to health practitioners (Chiropracters, Physicians, and others), who can order, at cost, by calling 1-307-358-5066.

   Digestive enzymes are NOT FOR EVERYBODY, but are helpful for MANY people.

(11)  My husband has found that AVOIDING MILK PRODUCTS helps him feel less congested, with less mucus in throat. Milk and milk products can cause gastric reflux episodes. Brown-Rice Milk (look for gluten-free) can substitute for milk (but not for babies!).

Gluten is in wheat (includes spelt & kamut), rye, oats, barley, & buckwheat. Read labels to avoid hidden gluten, in some soy sauces, gravies, grain alcohols, beer (barley malt), etc. People with Celiac Disease need to avoid all foods containing gluten. BROWN RICE (organic) is gluten-free. Corn is gluten free, but is very allergenic (allergy causing), so avoid corn. Avoid millet, at first, because there is disagreement about whether millet is safe or not, for Celiac patients.

MILK MAY CAUSE MORE ACID to be produced, IN THE STOMACH!

I occasionally eat milk products, like yogurt, cheese, whipped cream, or my ACIDOPHILUS/BIFIDUS, which is mixed with goat milk powder. So, at these times, I take LACTASE ENZYMES, to digest (break down into easily absorbed small molecules) the milk-sugar called LACTOSE. Many people (due to heredity &/or disease) have Lactose intolerance, where the small intestine does not secrete the lactase enzyme. Result is that the milk-sugar (lactose) travels further down the small intestine than it should. Then, bad bacteria eat the lactose, giving off lots of gas (the gases are by-products of the bad bacteria’s own digestion process), and this causes folks to get bloated, gassy, have diarrhea, and cramping. I use Lactaid brand lactase enzymes, and it works for me. Ordering direct from them can save money.

(12) Using the above methods has almost completely freed my husband of needing to use Tums, and seems to be nicely controlling his and my GER/LPR. We have never used acid blockers.

ACID BLOCKERS CAN HAVE DANGEROUS SIDE EFFECTS: Some examples are:

Acid must be present in the stomach, in order for the stomach to make a substance called Intrinsic Factor. Intrinsic factor must be present with Vitamin B 12, in the stomach, for absorption of Vitamin B 12 to happen, in the ileum (last part of the small intestine), I believe.

Acid blockers therefore prevent absorption of Vitamin B 12. Malabsorption (lack of absorption) of Vitamin B 12, causes NERVE DAMAGE (pain, numbness, pins & needles sensation, etc.) in the peripheral nerves (outside the brain & spinal cord). This is called PERIPHERAL NEUROPATHY. For details about this problem, see the Peripheral Neuropathy forum at http://www.braintalk.org

If Vitamin B 12 continues to NOT be absorbed, eventually there can be NERVE DAMAGE to the Central nervous system (brain & spinal cord).

ALSO, the minerals calcium, iron, zinc, other minerals, and important trace minerals, etc. cannot be properly absorbed, when there is no acid in the stomach (due to acid blockers, etc.).

AND, protein does not start to get properly digested (broken down--eventually into amino acids), in the stomach, when there is no acid in the stomach.

Doctors and pharmacists can advise about VERY gradual(slow) tapering down (weaning) schedules (when and if safe) for the acid blockers. Some acid blockers, when stopped too quickly, can cause rebound acid secretion in the stomach, resulting in excess hydrochloric acid secretion. The REBOUND ACID SECRETION often causes worse GERD symptoms!

ALSO, SOME FORMS OF REFLUX ARE NOT ACID REFLUX, but are ALKALINE REFLUX, (bile is alkaline). Besides refluxed stomach acid (HCl/hydrochloric acid), Pepsin (an acidic proteolytic/protein digesting, enzyme) & bile (alkaline) can irritate & damage: the esophagus, throat, vocal cords, & lungs. Acid blockers do nothing to stop alkaline reflux!!

(13) Do not drink ICY COLD DRINKS, and AVOID VERY HOT DRINKS. Use room temperature drinks, or slightly cool, or warm, but not ultra-hot. Extremely cold or hot liquids can irritate the stomach, which is bad for ulcers &/or gastric reflux.

(14) Ask physical therapists, chiropractors, osteopaths, etc. if they know any safe adjustments that might lessen GER/LPR, if you wish.

(15) Read (by Dr. James A. Koufman) PATIENT INFORMATION SHEET ON REFLUX by Center for Voice Disorders of Wake Forest University. Here’s a link:  http://www.bgsm.edu/voice/pt_info.html  Dr. Koufman was a pioneer in showing the connection between stomach reflux (can be acid reflux OR alkaline reflux) and breathing problems!

(16) Some have found a special (large) GERD pillow helpful for preventing GERD episodes while sleeping and while lying down. Here is a link to the Prop up pillow website:  http://www.propuppillow.com

(17) Avoid harmful chemical air pollution, which can aggravate gastric reflux. See page 5 of VCD website for more about this.

(18) Using the above methods, in addition to the SINUS SURVIVAL tips, has helped us to prevent VCD attacks, in us.

(19) Please check with your doctor, in advance, to be sure that it is OK for you to try these tips, in your particular case. Also, please get monitored by your doctor, to be sure that no more damage to the throat, esophagus, stomach, vocal cords, lungs, etc. is happening, from possible SILENT gastric reflux.

Pregnant or nursing ladies should check with their doctors, before trying any of these tips.

Avoid any herbs, foods, etc. that you may be allergic to.

Check with your doctor and pharmacist, to be sure that there would be no harmful interactions between any of your medications, diet that you may be on, and any herbs, foods, etc. mentioned in these tips.

Check with your doctor, to be sure that these tips would not interact badly with any medical condition you may have.

These tips help my husband and me (adults). Some of these tips may be OK for children, and others may not be OK for children. Check with your doctor! Babies with gastric reflux need DIFFERENT treatments, not these tips (except for raising the head end of the crib, if your doctor says it is OK to do this, etc.). Check with your doctor!

I hope that some of the ideas in here may be helpful to you. Good luck to you! Don't give up! People here are very supportive.

Sincerely, Concerned lady

[tata]

you say: "acid blockers do nothing to stop alkaline reflux". From what I know - that is not trew . my doc told me that: 1. it is very rear that reflux comes from alkaline 2. even if so – the treatment is the same as usual - with PPI and H2’s.

Other things you wrote were good advise!
Tata.

[M. A.]

Oh my God! My husband had this and alot of bowel removed in his 20's and if only we knew now what we know then.

We went to a nutritional whole foods consultant last year and he is off his medicine and I have lost 20#! I can't remember her name but go to natural epicurian / Casa de Luz on the web. They are out of Austin and ask the name and number of the woman who does chrohn's disease counseling, she is out of Nashville and worked with someone from Chrystal Gayles family and has cooked for them. Even if you can follow this diet for 3-6 months you will find it very helpful. There is a great recipe for Vega Tea that is soothing and healing.  

The info on the GER seems like it would apply to you.

Also if you have some diagnostic test indicating you have pockets of puss or some other type of infection or tissue break down. Get the surgery. My husband intially refused, waited a year, and he had much more bowel removed than if he had just intially done the draining/cleaning out and having the parts of colon sewen back together. Now he is doing so much better. Mostly because of diet.

[debb]

An excellent web site is Crohn's Colitis Foundation of America ~ please check it out. Wonder why the colitis meds aren't working for you this time around, perhaps you have a bacterial (C. Difficile) infection??? Probiotics (yogurt with live culture) may be worth a try. Good luck.