# A new thought about IBS



## Guest (Jan 6, 2001)

This is posted for information and in the hope of getting some information. I do not have IBS but have been reading these BB's to collect information. I work for a board certified gastroenterologist who is in solo practice. I run the office front, back and in between. We don't have time for traditional research and are hoping someone will take our info and run with it. First let me say that my boss does not feel IBS exists. Please keep reading. He has said for years that IBS is the diagnosis doctors give patients when they can't find anything else. His approach is to keep looking.Recently Recently he had several patients with severe narcotizing enterocolitis that presented with symptoms consistent with Clostridium difficile colitis. Many of these patients were negative for the toxin but based on endoscopic findings he treated them anyway. Surprise they all got better, although many had relapses. Many of these patients had other complaints that did not have to do with the GI system but were all similar.He then started asking very specific questions of our regular patients (in order to stay in solo practice he also practices Internal Medicine and we have many patients that are not seeing him for GI problems), and found that they had very simular symptoms. These patients had never complained about GI symptoms but when questioned specifically about number of BM's daily, soft formed liquid etc. (it amazing that they consider these normal for them)I would like to post a list of the recurring symptoms he has identified and find out if any of you are having any of them. The usual ones:diarrhea 3 or more daily of any type (soft, formed or liquid), constipation, alternating between D & C, mucous like stools, foul smelling stools or gas, bloody stools, excessive gas, bloating, abdominal pain (dull ache, sharp gas pain like lasting for several hours or days then going away), right upper quadrant pain at about the waist line radiating around to the back, nausea, vomiting. I'm sure these old had for you guys. Now lets get bizarre. Joint or muscle pains that may move from one area to another and can't be associated with some form of injury, headache, stiff neck or muscle pain in the neck area, photophobia (sensitive to light), swollen tender glands in the neck and throat, difficulty swallowing, feeling like you can't swallow a big pill, flushing generally in one specific area like 1 ear half the face, an arm (this is described as the skin feeling hot to the touch like with a fever and the skin burns and you can't seem to cool it off although the rest of your body is not to hot),lethargy (a general feeling like you just don't have the energy to move around) difficulty concentrating, gait disturbance (possibly walking to one side or feeling unsteady or staggering), night sweats, chronic infections having had repeat courses of antibiotics, been on long term acid suppression, Have been treated for Heliocbacter pylori in the past, muscle weakness.I am sure there are more but I am working off the top of my head right now. I know all this sounds crazy but my boss feels these all may be related to c. diff or a similar organism that is toxin producing. We have several patients that had been diagnosed with IBS and a few with Fibromyalgia that are responding well to treatment. This is not a generally accepted theory but we would like to see someone do a study.I would be interested to know how many people have any of these extra GI symptoms. This is just in the theory stage but I am having difficulty finding any information in the traditional medical litrature. We are looking at C. diff but there could very well be another organism involved. We have had some luck with Saccharomyces Boulardii but only after treating for the infection.Thank you all for letting me bust in on your bulletin board. One more thing we feel that there may be a connection between, IBS, CFS, Fibromyalgia and Gulf War Syndrome. I know you will all have lots of information for us and thank you in advance for your help.We DO NOT have a cure for this we are just collecting data. Please discuss all this with your personal physician. God Bless


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## the doc (Feb 8, 2005)

the thing that struck me about your description is the problem with swallowing large vitamins. this just seems to have started happening with me and i have just began to suffer from IBS symptoms over the last six weeks. i believe that it was from a bacteria i picked up at the end of Novemeber that is now residing in my small intestines and i am embarking on a program to erradicate it naturally.


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## Mike NoLomotil (Jun 6, 2000)

JUDYKAYE;Your boss is right...IBS does not exist as a disease entity. The immunologists I work with beleive that it can and has been demonstrated that It is just a name given to a group of specific symptoms sets, some of which overlap, for digestive dysfunctions whose etiologies lie elsewhere...multicausal and mult-mechanisms...than where many investigators are looking. So they are labelled unknown, whereas it is merely indeterminate as of yet from that particular perspective.As the indpendent work continues to progress, eventually findings from here and Europe will come together as people start to look beyond their present field of vision. Each time they do another specific etiology will be identified for a symptom set and thus it becomes Not IBS but whatever it actually is (post inflammatory, infection, disruption of flora, immunologic reactivity non-allergy, etc).Another whose work demonstrates the truth in this statement would be to look at the in vivo work of Bengtsson (Son of Bengt) and his associates in Sweden, identifying and differentiating the small bowel centered aberrant immunologic responses to foods which produce specific symptoms associated in this country with "IBS". MNL______________ www.leapallergy.com


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## Guest (Jan 23, 2001)

Judy - I have quite a few of the non GI symptoms you listed (as well as the GI), but have been tested for C.diff and found to be negative.


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## SteveE (Jan 7, 1999)

I have several of those non-GI symptoms as well--although I think I've licked the fatigue by avoiding products containing high fructose corn syrup.Incidentally, I don't have much faith in the value of the Great Smokies Comprehensive Stool Diagnostic (see bacterial threads), but many of us have had this test and often times citrobacter overgrowth is a frequent result among IBSers. In my case, the test showed both citrobacter freundii and bacteroides fragillis.


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## stinky too (May 21, 1999)

You mentioned *foul smelling stools or gas, ..... & excessive gas,*That is me, all the Doctors I have seen say " learn to live with it." Well I can, but nobody can live with me.







So what is the cause and is there a cure. A lot of us on this board have this problem.------------------Prayer doesn't change God , it changes the one who prays..C type, with G


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## Guest (Feb 8, 2001)

Hi Judykaye,I have been diganosed with crohns for over 35 years, 3 resections, and gallbladder removal, now have been diagnosed with sjogrens syndrome, sort of like fibromylagia, I would be most interested to know more about your research, but I live in Australia. however I would appreciate any news, you can email me at starwoman###primus.com.authanks, Carmen------------------


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## Mike NoLomotil (Jun 6, 2000)

JOYCE:Just the quickest of off the cuff questions or suggestions...do you eat potatos and potatoe products..have you tried eliminating them and substituting rice? If so apologize, if not, I suggest it as a simple experiment as potato is one of the gas-makers people forget about. They get rid of the sulfurous veggies but eat potatoes still.Just an easy thing to try to see if it elps a littleMNL__________ www.leapallergy.com


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## moldie (Sep 25, 1999)

Hi JudyKaye, (Too bad I didn't have such an innovative doctor at bat for me when I was going through my problems). I am a former LPN who had some serious GI problems develop recently after being on antibiotic therapy (amoxicillin) for over a year for adult-oncet acne. I was diagnosed with IBS 20yrs prior to this when I was on birth control pills for about 3 yrs. I would become constipated - sometimes could not go for 5 days, and then I would do a fleets - and eventually stool softeners as I didn't want to be dependent on laxatives. I also had some lower left abdominal discomfort - slightly lower and left of the navel. (I think I may have had this pain as a child, and would note it often after a spaghetti meal). The constipation finally came under control when I finally went off the pill to start a family, and with the addition of fiber to my diet, but I would still experience the dull abd. ache at times.A couple of years after my second child was born, I went to the doctor complaining of fatigue, but he blamed it on my working and having children. A few years after this I would wake up at times with unexplained achilles heel tendonitis. Shortly after this I began having neck and shoulder pain (acute bouts after shaking a can of paint, and one after washing my hair under the faucet). I also had a virus one year around this time with a cough that lasted for 8wks in which I would cough up sputum every hr. - day and night (chest x-ray had a suscpicous area so a lung scan was done, but showed nothing). A couple of years later, I got a flu vaccine and got the aches and pains flu five times that year. It wasn't long after that I was diagnosed with fibromyalgia (this would be 10 yrs. ago). I went in because I had pain in my hands and feet every time I woke up. My fingers would be swollen, and I couldn't make a fist. I still have this today, but fortunately it works itself out with movement.Anyway, my bowel symptoms after antibiotic therapy five years ago mirror much of what you have written about. I eventually had to quit my job. It started out with abdominal bloating/swelling and pain especially after the stress of standing on my feet for too long. Then I got a vaginal infection, a urinary infection, and then my bowels started a cycle of cramping and frequent soft-stooling (at least 6 times in a six hour period), every 2-3 days. This was accompanied by deep burning/gnawing rectal pain after stooling that would last for a few hours beyond the stooling. Soon my abdomen was bloating and swelling after any eating or drinking. I was miserable. I had told my dermatologist that I was having problems but didn't know if it was the antibiotic or my IBS. I went to see my GP, who was at a total loss. He sent me to my GI. She tested me for occult blood and it was positive so she did a colonoscopy. Apparently, I was in so much pain when she was doing it, that she didn't go all the way (I was drugged, so I didn't know that). They had to give me oxygen after they gave me the Demoral. I told her that this drug makes me pukey (found this out after my tubal), but she gave it to me anyway, and I began throwing up before I left. I almost became dehydrated at home, but fortunately my husband came in the room so I could get him to get me some water. (I was too weak to walk anywhere without passing out at the time).On the follow-up visit, the GI told me nothing showed on the colonoscopy, so she put me on an antispasmotic (levsin sl), and sent me home. I came back again telling her I was continuing to have these problems, she again found blood in my stool, put me on levsinex time spans., and sent me to a Gyno doc. Nothing showed on the pelvic ultrasound, except perhaps a few small cysts/follicules, so she agreed to give me a laporoscopy to check for endometriosis, as I told her I had painful periods all my life. They tried to give me another type pain med this time, but since it is a same day surgery, they take the IV out and insist you take an oral pill before you go. I began puking and dry heaving again, so they put the IV back in and kept me over-night. She had cauterized the mild to moderate endo found, and wanted to put me on Depro Provera shots or something like that, but the side-effects were the same as my fibro. Therefore, I went to another Gyno for a second opinion. He agreed to do a vag hyst and remove the ovary that was affected (he wanted to remove both of them, but I told him to leave the good one in so I wouldn't have to rely on hormones after). Just prior to my surgery, I had been trying probiotics and digestive enzymes a friend was selling through one of those pyramid schemes. After my surgery, things subsided a little, but within a few months, it came back with a vengence. On my post-surgical hyst exam, my gyno found yeast caked to the sides of my vaginal wall. I felt I was a little sore down there, but there was no odor or drainage. He said the antibiotic had masked the symptoms. I took myself off the antibiotic at this point, but unfortunately he only ordered douching and a local vag supp. and cream. This took care of the vag infection, but the bowel problems continued.At this point, I was so discouraged that I went to a quack touting integrative medicine that would help just about any condition, and fibromyalgia was one of them. He did testing, told me what allergies and toxins were found, as well as candida. His treatment consisted mainly doing IV Chelation therapy, which I looked into but but since it cost $3,000, wasn't covered by insurance, and I found no good evidence that it would cure my bowel problem, I decided against it. (I later found out that this doc was originally a psychiatrist who lost a son from health problems, so he changed geers). Then after some time, I finally went to see another allergist someone told me about at a fibro meeting. Since I knew I seemed to react to eating, and he seemed like an established and respected allergist, I decided to drive across the state to see him. Best thing that ever happened to me! He did the double-blinded provocative sublingual testing plus other intradermal and blood testing and was able to reproduce the symptoms I had felt after eating/drinking (abdominal pain and bloating). Antigen drops given after made the symptoms subside. He also diagnosed sensitivity to many molds including candida, and after considering my medical history, put me on Diflucan and a low sugar/no fermented/aged food diet, as well as staying away from the food additives that I was found sensitive to: citric and benzoic acid. Within a few months, my symptoms subsided. The antigen drops, I am not sure about. They are supposed to gradually build up my resistence. I still have to watch my diet closely after 2 1/2yrs. I had been doing a lot of juice drinks when I was ill, and that was the exact wrong thing for me since they contained both citric acid and a lot of sugar. Tomato sauces and soda pop are also no-no's along with others. You really have to read labels when you do the avoidence method. My Diflucan dosage is one-100mg tab twice wkly, which I try to get down to once a week as I am afraid of liver problems. (At this small of a dosage, my allergists thinks it is not a problem, but I still worry because I have been on it for over 2yrs). This seems to be working, but sometimes I wish they had actually have done a tissue biopsy when they performed my colonoscopy so that they really would have identified the species more specifically. As an added note, I also found that I have mitral and bicuspid valve insufficiency from an echocardiogarm done prior to my surgery. I had complaints of dizzyness on arising (especially from a squat postion) ever since I was pregnant with my first child, and more recently heart racing in heat, with some occas. periods of irregularity. I wondered if I had valve prolapse as my aunt did. I did have fainting spells in church (perhaps associated with going from sitting to kneeling to standing?) while I was going through puberty. Also, I have sensitivity to light and noise primarily at the end of the day when my body has just had enough stimuli, and am fatigued. However, the first thing in the morning, I seem to seek light and open up all the shades to get myself going. There are, of course, an increasing number of intestinal infections or over-growths following med therapies on the rise as you and your GI doc are aware of. I have found serveral interesting sites on the web as well as topics that include them and are discussed on the IBS boards. Here are some that I am aware of: http://shn.webmd.com/content/dmk/dmk_article_3961471 http://pc.pdr.net/pc/content/journals/p/da...1b99fungal.html http://www.malinowski.com/faq.htm http://shn.webmd.som/printing/asset/adam_d...otizing_colitis http://www.niehs.nih.gov/oc/news/autoim.htm http://www.britannica.com/bcom/eb/article/...1106180,00.html http://www.ibsgroup.org/ubb/Forum1/HTML/006452.html http://www.parkviewpub.com/bulletinboard/F...TML/003140.html (the above has moved their files to this board, so you may have to do the search here under the poster "Charlie" and the subject "ibs, gut fermentation, gastro candidiasis, info for you," It was apparently taken from the John Hopkins site: http://www.intelihealth.com/IH/ihtIH?=WSCHN000 also: http://www.rxlist.com/cgi/generic/amox_wcp.htm http://www.afpafitness.com/LEAKGUT3.HTM (the above may be a little on the alternative side, but may have some merit)Hope this helps. Good luck with your search and your GI docs success with treatment. Please come back and post your results for us. It should be interesting.M. [This message has been edited by moldie (edited 02-14-2001).][This message has been edited by moldie (edited 02-15-2001).][This message has been edited by moldie (edited 02-15-2001).]


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## LNAPE (Feb 9, 1999)

Here is my story:At age 24 I had my second child who weighed 9 lbs and 6 oz. After that I started with the stomach pain nausea vomiting diarrhea with mucus bright yellow and watery, and pain in the back under the shoulder blade. I was tested and found my gall bladder was not functioning and so in 1976 had it removed I was then 26. After that I began having urget explosive diarrhea attacks. Gas Bloating cramping pain is the left side just under the rib cage like a knife was stuck there.Went through test to see if anything could be found and remember this was 1976 but nothing. So had the usual run of drugs but not any help.At age 48 started taking calcium to help prevent bone loss and taking nothing else at the time got relief from all the symptoms. I must take 3 tablets a day of calcium carbonate with vitamin d and minerals (Caltrate 600 Plus with vitamin D and Minerals in the purple and white box.) As long as I take this daily with food I no longer have any diarrhea trouble. The binding effect of the calcium I assume is what has helped and I am so grateful for that.Thanks for your efforts in finding the cause for this life altering condition.Linda


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## stinky too (May 21, 1999)

Mike,Since I cut out most of the carbs. I do not have large amounts of gas, (like I use to)But the bad odor keep coming from my body anyhow. often think I am , but everyone else is letting me know that I smell bad.







Sure is hard to have a social like this way.------------------Prayer doesn't change God , it changes the one who prays..C type, with G


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## moldie (Sep 25, 1999)

Here are some more links I have found or others have led me to: http://www.niaid.nih.gov/dmid/mycology97/immuno.htm http://www.gicare.com/pated/ecdgs28.htm .../article.asp?PageID=157&Article_Name=medi101999%2Fcfs%5Finfo%2Findex%2Ehtml&A(The above was taken from a site called "Medicine For The Public - CFS" which states that was taken from the National Institutes of Health and attributes the contribution was made by Saul Rosen Ph.D.,M.D. Acting Director Warren Grant Magnuson Clinical Center National Institues of Health http://qurlyjoe.bu.edu/cducibs/colcolfaq.html Some more alternative ones that might have merit: http://www.healthtruth.com/Articles/Candida/Candida1a.htm http://members:aol.com/docdarren/med/candida.htmlI must say that sometimes because of the blurred print, I may have trouble distinguishing the no. 1, the lower case letter l, and the capital letter I when the http is printed at the bottom of the pages I run off. (Note: this may have something to do with font differences, i.e., believe it or not, when I went to correct the mistake of the capital letter I, it appears as a capital letter in my edit page, but not when I go back to look at it on the original post page - go figure! - the captial letter I comes out like a stick on the post page with no horizontal line across the top or bottom. On the post page the lower case l and the capital letter I look the same - but not on my edit page. The lower case l and the number 1 on my edit page look much the same except they are distinguished by the number 1 having a curve at the top.) Also, some of the sites may have changed their pages so you might have to do a search on that particular site (i.e., in their archives perhaps) to get to it. [This message has been edited by moldie (edited 02-15-2001).][This message has been edited by moldie (edited 02-15-2001).][This message has been edited by moldie (edited 02-15-2001).][This message has been edited by moldie (edited 02-15-2001).]


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## NickT (Oct 3, 2000)

*diarrhea 3 or more daily of any type:* No. Usually 1 movement, shortly after waking. Movement is usually soft, oval in diameter, appears as brown swiss cheese. *constipation* Not now, but in my youth. Normal movement was about once every three days.*alternating between D & C* No. Pretty consistant now.*mucous like stools* Occassional mucous on stool, not usually a big issue. Did have mucous (or mences) like discharge frequently on underwear.Cleared it up with 2,000mg vitamin C. once daily.*foul smelling stools or gas* Oh yeah. Strong methane or sulfur smell.*bloody stools* Not usually, occassional bright red blood, but rare.*excessive gas, bloating,* Had these problems, but not lately.*abdominal pain* Occassional gas pains, but not often.*nausea, vomiting* Very rare.*Joint or muscle pains that may move* Doesn't move around.Strange right ankle sensitivity that feels like a sprained ankle. Seems to always get worse when I go on vacation. Fish oil seems to stop it.*headache* 3 to 5 days/week.Feels like inflamation.*stiff neck or muscle pain in the neck area* Occurred when DHEA, or Cod Liver Oil were used.Very sensitive to sleeping with good support for my neck. *photophobia* Just started happening within last 2 years.*swollen tender glands in the neck and throat* Very rare, feels like a mild sore throat.*difficulty swallowing* Occassionally*flushing generally in one specific area* No.*lethargy* Happens frequently*difficulty concentrating* True*gait disturbance* True*night sweats* True*chronic infections* Bladder and Yeast*repeat courses of antibiotics* average, no more than usual.*been on long term acid suppression* Usual antacids.Not really a problem. *treated for Heliocbacter pylori in the past* Treated for an ulcer with prescription strength Tagamet.Before pylori was id'ed as culprit.*muscle weakness* True*Other comments:* Respondant is male, mid 40's, symptoms 12-13 years.Weight gain at onset.


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