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Discussion Starter · #1 ·
Hello, I’ve been lurking here reading the stories for the last couple years after being diagnosed with PI-IBS 3 ½ years ago. I was very healthy- then at 35 during a stressful period I got a severe stomach flu about 4 years ago-sick in bed for a week and a half, vomiting up everything even water. Went to the hospital during in the sickness, told it was stomach flu so I should just let it run its course. About a week later, feeling better but diarrhea continued though I was having no pain whatsoever. After a couple months of consistent D, I went to see another doctor who told me I had mild IBS and that it should clear up in a couple months. Sure enough things seemed to clear for a few weeks then later that fall the d returned and continued regularly. Did the usual- after the Dia first thing in the morning took a couple immodium then was locked up for the rest of the day and often the next, then the cycle would continue. After 6 months decided my job stress might be causing the problems so I quit and got a very mellow and fun job. During this time I saw a new doctor who prescribed Florastor probiotic. The day after taking it I had a semi formed movement for the first time in months. I continued on with the Floristor and Immodium for a year or so with more predictable (though unsatisfying) movements. The doctor also prescribed Lorazepam at this time which helped during stressful periods. I was managing but would have these uncomfortable urges or sensations in the bowel from time to time though nothing was there and occasionally huge amounts of dia for no apparent reason. Had a consult with a Gastro doc who gave me a colonoscopy which apart from one small polyp was all clear. Felt great after the cleanout prior to the colonoscopy, but that didn’t last. About a 6 months later I got really sick again, this time with prostatitis. I was given Cipro for this and it cleared up quickly. I also noticed my bowel movements seemed better until a few months later when I had another hugely stressful financial crisis when things got worse. Had a stool test for C-diff but came back negative. At this point I retooled my career and started working from home. I worked on removing stress from my life, listened to the IBS Audio 100 program, eventually went to a hypnotherapist and worked on talking therapy. Things leveled off but were still annoying and interfering with my day to day activities. I noticed during this time that after a bowel movement the gut and bowel started to feel sore and uneasy and I was getting the occasional twinge in the urethra often after urinating. Also, the feeling of incomplete evacuation an hour or so after a movement. Saw a new Osteopathic/Naturopathic doctor who listened very carefully to my history and then concluded I had some sort of underlying infection or dysbiosis in the gut. I started taking Nystatin for a Candida infection for 4 months during which time I laid off the Immodium and eliminated carbs or anything else that could feed the yeast. At the 3 month mark I was still having very soft loose stools and for the first time, a really upset stomach. I went back to the doc who stopped the Nystatin, then prescribed Xifaxan for bacterial infection. No changes. Then Low Dose Naltrexone for inflammation. During the first week I had bouts of very sore stomach and once was woken up with huge stabbing pain in the abdomen behind the belly button. -Later that morning, really bad Diarrhea. After this the doctor was convinced there is still some underlying infection so he prescribed Flagyl which seemed to do nothing. I have kept a log of my diet, bm’s and any symptoms/sensations for the last 8 months. The doctor feels there is no food intolerance and my symptoms truly seem to be random. (though it is true that acute stress makes the symptoms worse). It seems to be a cycle of one day bad Dia, then a reasonably good day, then 2 or 3 days of progressively worse bm’s and the cycle starts all over again. I apologize for the huge post, or if I posted in the wrong spot and I realize that so many people here have much worse symptoms than me and I truly sympathize . It’s so crazy that there isn’t more research being done to get to the bottom of this. Any thoughts anyone may have would be greatly appreciated.
 

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Discussion Starter · #2 ·
Nudge...Does any one have any advice? (see history above)Last few days, formed stool/ragged and sickly right after getting up, then tight or irritated gut or bowel all day.Sorry to push, but any advice greatly appreciated!
 

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If the GI symptoms got better after Cipro (if I skimmed your history correctly) you might consider going back to a GI doc (may need to go to a major medical center like a teaching hospital) and get a breath test for SIBO.That will clear up after antibiotics (and Cipro is one has historically been used for this even if they now use ones that tend to stay in the gut) and tends to come back after awhile.This is when normal bacteria from the colon get established where they don't belong (in the small intestine so that is why it is Small Intestinal Bacterial Overgrowth).The guy that linked SIBO to IBS (although most people don't think as many people with IBS have SIBO as he does) has a book. Click on the book link above and it is listed.A New IBS SolutionMark Pimentel, MD, Health Point Press, January 2006
 

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Discussion Starter · #4 ·
Thanks Kathleen.I had discussed the improvement after the cipro with my regular Doc (who is very understanding and interested in helping) but he felt the Flagyl and Xifaxan would be the first choices. Is Cipro considered more effective?I still feel that getting prostatitis out of the blue while suffering from IBS indicates some sort of infection that may have spread from the gut.Going to ask about getting a SIBO test. Thought if I could get to a state of better symptoms, then repopulate gut with a good probioticthere may be some better long term results. Thanks again
 

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Hi there,Just wanted to send a note of support - it seems like you are on the right track. I'm sorry I don't have any advice, but I am glad to see you are pursuing this... (mine also practically started overnight, and I also had a lot of improvement - albiet temporarily - after taking prednisone and Levaquin - an antibiotic). Although, I am back to square-one now.Will you let us know if you and your doctor come up with a solution?
 

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Discussion Starter · #7 ·
Thanks so much itsme! Sorry you're improvements didn't continue.I just did some new blood tests and stool samples, much more thorough tests than done before, so while I have to say I'm not super-optimistic something will be identified, we'll seewhat happens with those. Also going to ask about a SIBO test, though not sure if my doc puts much faith in that test.I've noticed over the last couple weeks, the more the stool is formed and less urgent, the more irritated and incomplete things feel after. When the stool is looser and urgent (not getting much full on d, just couple times a month- knock on wood) I tend to feel emptied out and complete after. Weird.Carminative Tea seems to help with the discomfort. Thinking about trying Align starting next week in combination with whatever the doc suggests.I will post what happens since any improvement means a potential one for others as well.....
 

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Hi Martin21, I think it will be worthwhile to investigate the SIBO. Do you suffer from any other illnesses? Insomnia or apnea? Do you take any other meds? I assume you have a good diet and excercise routine?It seems that you have identified stress as a factor that influences your IBS symptoms. You might want to evaluate how you respond to stressors? Do you get outwardly angry or anxious? Do you internalize your stress? When do you not have the IBS symptoms?
 

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I have no other illnesses, not overweight. No meds other than buscopan, immodium and occasionally Lorazepam if I am really stressed out about my gut (having a bad day and need to get on with stuff) Have a decent diet and though I should be getting more exercise, I find the ibs gets in the way. There was a stretch where I did go to the gym everyday for about a year but it seemed that didn't make a difference. I do walk pretty much everywhere I go since I got rid of my car (city living). I do get heartburn at night occasionally (maybe once every month or two) but I can't see any pattern that relates to my IBS symptoms. After the usual uneasy bm in the morning I do tend to burp alot and sometimes feel a bit gassy higher up in the chest. (?)Stress definitely can worsen my symptoms but I can have bad symptoms even when I am at my most relaxed. No matter how I feel, haven't had a normal bm in practically 4 years. I would say I can be a a bit obsessive compulsive and a worrier but I certainly don't internalize my stress. The thing is, like everyone I have stress from time to time, but before the "heralding event" which started this whole IBS thing, stress never effected me in this way- (I had a digestive system that ran like a finely tuned machine all on its own no matter how stressed or relaxed). I also use hypnotherapy which does ease the symptoms a bit when I'm stressed, but they are still ever present. It's the classic chicken and the egg, but really I have no stress other than the wacky bowels and even then I work to maintain that stress.My doc does seem to feel it is related to an ongoing infection and believes getting rid of that will clear things up. But, he has never really mentioned SIBO and instead talks more about a dysbiosis in the gut.I feel like we are hovering around the solution but still can't pinpoint it. Thanks for the post and for all those interested, I will check in with updates.
 

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Martin21, IBS is a learned illness. Your mind body has learned to respond in a certain way to given various triggers. The trigger initiates a cycle of bowel activation or inhibition which affects a mental response which further affects the bowel. There are three rules which will end thisRule one- Ignore your bowel (and bm's) take your mind off it completely. do not worry about your bowel. just let it be. you stress about the bowel so take it away. you can do this. You know focus on something else, maybe your nose or your toes or whatever just get your mind off your bowel completely all day and night long.Rule two- Treat both the mind and the body. Eat healthy, live healthy. so many people just want to treat the bowel or treat the mind. You got to treat both.Rule three- You have to want to end the IBS (remember that this is learned) and believe that you have ended it. You must have confidence that you have ended this. visualize confident thoughts that you are in control and believe it. There is more to this. your emotions affect your bowel. You know that anxiety and stress make the ibs worse. Controlled Confidence is the opposite of an anxious state.try it. this will work if you have just ibs.
 

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Thanks Skoshland for the kind words of encouragement,I agree with everything you said. Obsessing about things (specifically ibs) definitely can make it worse as I have experienced first hand. However, with me, this is not alwaysthe case as I have gone through very stressful events with no flare ups, then there have been times when it's business as usual, zero stress and I have kinda forgotten about ibs, then all of a sudden I will have a really aweful bm for no apparent reason. Another weird thing was, I spent a few months really restricting my diet eating only healthyfoods, lots of salad and fresh fish, chicken etc, no sugar, no junk food at all - I had zero improvement in my symptoms-maybe some change but no improvement. But I eat a hot dog (only occasionally) and nothing happens. Alot of the hypnotherapy I have done over the last year focuses on positive, confident thinking - some improvement but still getting seemingly random flareups.An example of all this is I had a great last 3-4 days (though I had been taking immodium for a the first 2), I was feeling that confidence you mentioned and even had what could almost be classified as a great bm this morning, then 1 hour later, I'm working, relaxed and enjoying myself and all of a sudden a huge attack with exceptionally bad D and huge amounts of gasfrom high up in the colon. I even have pain in the legs and soreness in the rectum while urinating (?) I don't get it. Still waiting for tests to get back. Sorry if I'm too graphic and thanks again for the response.
 

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Hi,Sounds like you are having a really bad time of it. Have you had a scan on your gallbladder to see if you have any stones. Although you are not getting any pain, prior to my gallstones I used to get very gassy and burpy higher up, and the Dr said that I had probably had a gallbladder that wasnt working property for a very long time as the stones built up!Can I also recommend Forever Livings Aloe Vera GEL (Not a juice which is lower in actual pure aloe). This has natura anti-inflammatory, anti-spasmodic and immuno regulator properties. It is also a pre-biotic, providing pro-biotics with the best environment to flourish.It is also full of vitamins and minerals together with 8 of the 9 essential amino acids. Please contact me if you would like more information on this. You can use my name as a website, where you can email me directly or use the forum for direct discussion on this particular problem. On the site you will see that you can buy the drinks in different flavours, but they do a berry nectar flavour which has cranberry in it to support bladder health.Aloe is not a miracle cure, but it does help to relieve symptoms to a greater or lesser degree per person (some get complete relief). However, I would always recommend getting personal advice as to the dosage to take, how to build it up and what to expect from taking it.Hope this helps.
 

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In Post #1, Martin21 does not appear to claim that Cipro cleared his IBS. Rather, I thought he is saying that it cleared the prostatitis. So, neither Cipro nor Flagyl have improved the IBS. He still might have SIBO, but this makes it less likely.Is my interpretation of your post correct Martin21?
 

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Hello Martin, I am understanding that you seemed better for a while on probotics and after the Cipro ("more normal BMs"). Your condition is classic for IBS-D with SIBO. Most individuals have a culprit episode similar to your "flu". After that, they are never the same. I am IBS-D with SIBO. The unfortunate thing about SIBO is there really is no clear-cut test. The breath test will give both false negatives and positives. After reading your posts, my guess would be bacterial overgrowth. You will NOT bump some panel on a blood test for an infection because you are overloaded with some natural bacteria found in the body. I would bet if you go to an ND and do a live blood analysis, they will find your blood loaded with bacteria - leaky gut. (Yes, it is real!)Here is a little of what I know and feel free to hunt my posts and read some of my journey through these dark woods. WHAT MAKES MY DIARRHEA WORSE:Dairy food and any casin or cassinate (although some people have gotten better drinking Kilfur), coffee, alcohol, too much sugar, white flour, fatty foods, rich foods, pastry, ice cream. Also, ant-acids and PPi's, stress, allergies, genetically altered grains and veges (I do all organic), meats fed grain/hormones/ABs, corn, popcorn, certain herbs (too many to list and too variable). Junk foods. Hormone fluctuations, anger, lack of sleep, laying around too much. WHAT HAS HELPED ME:Tetracycline for six months 1000 mg daily with a period here and there of a week off. Floragen probotic and Bubbies sauerkraut (from Whole Foods), A Blendtec and eating six to eight servings of fresh fruit/veges made into smoothies instead of a meal with walnuts and flax and glutamine powder. Xifaxan when I cannot take Tetracycline. Imodium when I know I have a meeting or have to drive/fly. Renew LIfe organic fiber bars. Calcium and Vit D supplements. Peppermint tabs (frozen). Lysine and certain IBS formulations. Fish oil, zinc, mineral supplements. Detox teas and colon cleanses now and then. Exercise and stress relief or meditation. Valium, Zyprexa, other antidepressants. Marinol tabs to increase my appetite and settle my stomach. Keeping my stomach acid level up! (Yes!) Small meals. Candex too. I am sure to have left stuff off the lists but you get the idea. In the end, if you have SIBO and Diarrhea, you most likely need an AB of some type. Clinical literature suggests longer therapy than what may seem logical, some say as long as three months. Some experts say do not take probotics while you are on the AB others disagree. I did/do not. I alternate. Your small bowel should be bacteria free. A loss of the housekeeper wave, damage to motility can impact how bacteria is swept from the SB. Stomach acid burns out all bad bacteria. Hence, some thought leaders think "we" suffer from a lack of stomach acid or something is keeping it from cleaning the entire SB. The colon is our compost pile. It should be loaded with good bacteria. When "undigested" food hits the colon it will cause problems even if you have all the right bacteria. So you could say we suffer from a combination of motility, acid and bacteria imbalance. It could also be an enzyme problem of not breaking up the food properly for digestion. In some cases, it is because a drug cleaned out too much of the good bacteria. In other cases, it is because a "bug" upset this delicate balance and changed our bowel lining. Some people have Habba Syndrome while others have enzyme or organ abnormalties. My understanding is the bad bacteria can grow into the lining of the SB and get "stuck" there. That is why this is so hard to get rid of and why many with SIBO lose weight and get weak. You will have to find what works for you. Do not give up and keep reading!!!!
 

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Good news from Germany.I just read from an female IBS sick person who had join a study: Researcher picked 20 IBS patients, and took special biopsies. They found higher Mastcell count in 19 of 20 patients!!!!!!!! I repeat... 19 of 20 were postive for Mastocytosis. That`s incredible.So they treated her and all other sick persons with antihistamines.And after the some time they all got better, some cured. No more diarrhea, no spasm, no more pain etc. That`s really exciting.Researcher told her, that Mastocytosis is probably more common in post infectious IBS, but of course accumulate in other types of IBS. I mean 19 of 20 had it. That ` s massiv.Other researcher in germany working on Trpv1(which also connected to inflammation) biopsy test for sick patients. So a lot of IBS research is going on in germany, especially on immune side, where this disease is at home.
 

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I wonder how many IBS sufferers are in Japan or Australia or even France and Italy? The UK and US use the genetically altered grains/produce and same type of Rx products in their livestock, although less since the last Mad Cow breakout. This German research regarding a change in the lining of our guts might go along with some of the theories around our consumption of genetically altered produce/grain/meat. . . very interesting and exciting.
 

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Wow, thanks everyone. All very interesting information- lots to digest! (pun intended)Moises- After recently going through my health records I realize I was actually given Levofloxacin (Not Cipro) for my prostatitis. It did clear up my prostatitis but also improved my bowel movements to the point where I actually began to forget I had problems. This lasted about 3 or 4 months.Hester - I do think antibiotics may be the answer as I seem to have urinary symptoms that coincide or alternate with the bowel symptoms as well . I have noticed that what I eat has little to no effect on my symptoms. I might get d occasionally if I eat say a hot dog (rarely) but the next time I have a hot dog - no symptoms. Then, I may have problems after I eat a piece of lean, baked, dry, organic chicken breast.When I have cut out Dairy, alcohol, sugar, white flour etc I have had no improvement. Then if I go out on a Friday night and have a bunch of drinks (beer, gin or vodka) the next day, my stool consistency is great! My symptoms seem completely unconnected to foods. That said, if I am having a bad spell, I stay away from the traditional problem foods, much like when a non-IBSer has the D.Update- After finishing some blood and stool tests a couple weeks ago, I started on the Align probiotic (1 a day). No D in a couple weeks and I have noticed that the urgency has subsided greatly and stool consistency has improved greatly. Still some not so good days but no real aweful ones and even had a great day yesterday. (1 movement, later in the day like I used to have and feeling really complete after). I understand that many people improve with Align but it's not long lasting. Who knows but I am grateful for any sort of positive.There is still some discomfort after the bm and alot of pain in the perineum, lower legs and still feeling flu-like with dry eyes and throat.Yesterday, I got the test results back from the doctor- blood and stool all normal except my Vitamin D metabolites. My 25 OH Vitamin D is low at 35 (from what I have read should be min. 50)and I guess this is unusual in someone with a normal diet and can indicate a chronic infection. The 1,25 OH D is usually high in this situation but mine came back normal so my doc is having medo it again since the first test was sent away and he feels this may have messed up the test. Going to redo this week at a lab that does the test on site immediately.We will see what happens, my fingers are crossed since any sort of actual measured deficiency could lead to an actual solution. Thanks to everyone for their responses and I will keep you all up to date.
 

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Discussion Starter · #19 ·
Hello All- been a while and I thought I would give you an update.In August, things were going pretty well with the bowel- very little D, but still alot of urgency and discomfort/irritation after a bowel movement. The softer the bm, the more the irritation after.I was having more symptoms of irritation in the prostate, usually in the evenings, but my doc figured it was the inflammation which was causing the bowel problems which seemed to be in the last 6 inches of my lower bowel.He prescribe Levofloxacin for what he thought was a chronic prostate infection. I was to "pulse" my dosage, taking 1 a day for 7 days, then take 10 days off, then take it for 5 days then take 2 weeks off..... working my way down to stopping. I started taking it in August for a week - and things went pretty well- had milder prostate symptoms and the bowel seemed to be runningpretty well.Then I did my 2nd round in the start of September for 6 days. On the 6th day I got a sudden severe cramp in the gut and then had nasty diarrhea. This cleared up and I felt a little "off" after thatbut then felt great for a few days- then the following week, I came down with the flu- mainly a head cold. This lasted a week and just as things were clearing up, I again had a sudden nasty crampin the gut late at night. The next morning- diarrhea with a vengeance! This last for 5 days before clearing up.At this point, I swore off the antibiotics and my doc suggested we get a comprehensive stool test done at a naturopath's office. (He is open to natural meds as well) Got the results back and everythingwas clear except it said that no Lactobacillus or Enterococcus was found- or couldn't be cultured. The naturopath recommended that I go on an anti-inflammatory regiment ( soluble fiber, probiotic,a powder called Ultra InflamX, and the flavanoid Quercetin) and I go on a diet excluding all gluten, dairy, sugar, red meat, pork and certain fats. I was to do this for 4 weeks.Well,3 weeks in, the bowel movements have been pretty consistent, but still rushed in the morning. Often, before my eyes even open in the morning, I can feel what I think is the bottom of my small intestine, rightat the bottom tighten and the irritation begins. Then usually about 30 min after eating my first meal, I have an uncomfortable urge in the rectum. Stool is often rushed coming out- large and formed, but ragged at the end as if the last stuff didn't have long enough in the oven
Then after, varying irritation in the lower bowel and tingling in the face and sinuses. Some days things calm down and I'm prettygood the rest of the day, other days I get further "urges" in the lower bowel near the rectum that are often just gas or gas mixed with small pieces of stool and/or mucous. Then on some days I just have a tight feeling across my gut and burp alot or have rumbling gas moving up my chest.My doc seems to think that my root problem is an over active immune system and thinks we need to down regulate my cytokines (?)Anyway, thanks for reading and any opinions are welcome and greatly appreciated.M
 
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