Question for IBS-C folks: relief w/o fiber or probiotics?
#179793 - 05/18/05 08:40 AM
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I've been dealing with post-infectious IBS since a horrific episode of dysentary and giardia six years ago. I have tried many of the dietary and nutritional strategies on this board, and a million others, with limited or no success.
Last week I went to the Cedars-Sinai GI Motility Clinic in Los Angeles. I had come across research they've done correlating IBS to bacterial overgrowth in the small intestine. They have achieved the most dramatic and successful improvements with their treatments of any published research on IBS treatment.
They tested me and sure enough I was positive. The treatment was 10 days of two antibiotics that are "gut-specific", meaning they don't get absorbed into the bloodstream and are thus less toxic. They then prescribe Zelnorm at 6mg before bedtime following the drugs.
The antibiotics almost completely eliminated the gas, bloating and pain that was so crippling before. Yea! However, the constipation is far, far worse. I have not had a BM without an enema for several days. I am not taking fiber or probiotics, because the clinic's research and anecdotal experience indicates that fiber and probiotics make things WORSE for people with IBS caused by small bowell bacterial overgrowth (SIBO).
I seem to be one of those men that Zelnorm has absolutely no effect on, other than making me feel drugged. Are there any other options for increasing regularity that aren't habit-forming laxatives? Unfortunately the doctor at the clinic is away until May 31 and no one there is able to help.
In desperation I tried some probiotics and fiber for a few days, even though I was told not to. The bloating, gas and cramps came back almost right away. Any ideas?
BDB
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Hi badlydrawnboy,
My GI had heard about the research being done in LA and put me on antibiotics, too (although I was only on one - Xifanin/Xifaxin - what other one were you on?). I believe that I am at least 50% better since then... well, since I finally got rid of all the C that had built up that entire 10 days I was on the antibiotic. The week I was on it and the week afterwards was one of the worst few weeks I've had in a while, but after a huge amount of miralax, I'm feeling GREAT. Not perfect, but do we ever really feel perfect?
I had not heard that probiotics and fiber were bad for SIBO, and they seem to help me, actually. I will ask my GI about it when I go back in 2 weeks.
As for the C, there are a few things I've been doing that really help me:
1) Eating a lot of vegetables at night, right before I go to bed. Like a big salad, vegetable soup, etc. I do get somewhat bloated, but I'm just going to sleep and it's gone by the next morning... and I'm able to "go" almost every morning like clockwork. Something to think about.
2) Magnesium supplements. Our bodies don't absorb magnesium very well, which is why it acts as a "safe" stool softener. I either take 1500-2000mg or Miralax (my doctor believes it is not habit-forming) daily and I'm doing great.
3) Psyllium husks right before bed (but I guess that doesn't apply to you since you aren't doing fiber).
HTH!
--------------------
Elizabeth
all those years it wasn't IBS - it was celiac!
send me an email: liz@dopple.net
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Welcome back, although I'm sorry it's for such an unfortunate reason.
Here's a post of mine referencing a green apple juice treatment. I've dragged this out several times over the last few weeks (you'd think I was getting royalties for recommending it) and no one has reported anything about it: trying it, problems, success, zip, zilch, nada. So I'd say take a careful look at the old posts on it that I'm sending you to (by a somewhat circuitous route) and if it looks like something that might help, approach cautiously.
I'm glad the targeted antibiotic treatment helped with some of your symptoms. I'm sure it must be frustrating to have another worsen as an apparent result. I hope this helps and good luck. Keep us posted - so to speak. 
--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
Edited by Sand (05/18/05 09:17 AM)
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Hello Elizabeth,
I was on Xifanin (Rifaximin) and Neomycin. The doc said that this combo has a 90-95% effective rate in their research. But it's my understanding that Xifanin is the more important of the two.
I just started Natural Calm (magnesium fomula) this morning. I pulled it out of my-cupboard-of-remedies-that-haven't-worked-in-the-past-but-I-still-have. We'll see how it works this time around.
Perhaps I will try fiber again, but I want to check with my doc first. In the past everything except flax seed meal has caused intolerable bloating and gas, and sometimes made the constipaton worse (yes, this includes Acacia). But perhaps now, post-antibiotics, things will be different.
I've been at Zelnorm 6mg 2x day and it has done NOTHING.
The green apple juice is interesting. Time consuming though. I'll give it a try if these other things don't work.
Someone mentioned DGL (deglycyrrhizinated licorice) can help constipation. Anyone have experience with this?
Chris
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Forgot to mention a few things that may be relevant.
One, the kind of constipation I've got going is incomplete, infrequent BMs. Stools are thin and kind of pasty. Never dry, unless it's been a REALLY long time. Stool softeners like aloe are not effective. I need something that stimulates peristalsis.
Two, the reason this clinic doesn't think probiotics are good for those with SIBO is that there is already a tendency for overgrowth of bacteria, so introducing large amounts of bacteria (whether good or bad) can make that worse. I'm not totally clear on why they don't recommend fiber.
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This is my very first post. Please bear with me. I am trying to find the best message board for IBS w/chronic constipation. Can someone help me?
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There isn't a specific message board here for those with constipation. But if you post a question on this board and put IBS-C in the title of the post many folks out there will respond.
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only work for people who got IBS from some type of infection or dysentary or something like that and not fom unknown cause?
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This surprises me as probiotics are really recommended for IBS. Research says how good this friendly bacteria is for IBS. I would think good bacteria would definately help with IBS from dysentary. But, what do I know.
I'm just sort of worried now to take my probiotic. I'm so confused about what is helping and what is hurting me. 
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I too cannot take a Soluble fiber supplement either and would really be interested in responses to this fiber dilemma.
How much flax do you take everyday? Does it still work without the bloating and gas? I may need to try this because I am in need of some constipation relief. 
I would recommend taking the magnesium. It's worth a try. I am trying it now, but not sure it is doing anything for me. I am still in pain and constipated, but I can have a BM once in a while. Better than never.
Zelnorm did NOTHING for me either.  Very disappointing.
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In the past I took something called FiberSmart, made by Renew Life. A blend of flax and borage seed, probiotics, and gut soothing herbs. Very good product, the only fiber supplement I could take without bloating, gas.
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This is just one theory, but it's been well-researched. They believe many cases of IBS started with some kind of infection or "insult" to the gut, whether the person was aware of it or not. Bacterial overgrowth can also happen when the gut's natural cleaning mechanism (peristalsis) doesn't work well and things get stagnant. Perhaps you should discuss it with your doctor? Many people here find success using the strategies recommended by Heather. I didn't, so I looked into other options.
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I take Omega 3:6:9 by NOW brand, 2 pills, 2x a day. It's a blend of flax seed oil, borage oil, evening primrose oil, etc. and helps to give you your much needed Omega fatty acids since those of us on such a low-fat diet need them. I think it helps me "go" too.
--------------------
Elizabeth
all those years it wasn't IBS - it was celiac!
send me an email: liz@dopple.net
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because bacterial overgrowth would be of the "bad" bacteria type, and having enough "good" bacteria in your gut (like probiotics) will keep the bad bacteria in check. I'd really like to know some details about this. There are a growing number of studies showing that probiotics help IBS (and IBD, which is even more impressive), and that they're especially helpful when people have been through dysentery, food poisoning, antibiotic-triggered IBS, etc.
Hmmm.....
- H
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Quote:
because bacterial overgrowth would be of the "bad" bacteria type, and having enough "good" bacteria in your gut (like probiotics) will keep the bad bacteria in check. I'd really like to know some details about this. There are a growing number of studies showing that probiotics help IBS (and IBD, which is even more impressive), and that they're especially helpful when people have been through dysentery, food poisoning, antibiotic-triggered IBS, etc.
Hmmm.....
- H
Heather,
Quite honestly, it doesn't make complete sense to me either. And it contradicts just about everything I've learned in the past regarding probiotics and their role in intestinal health.
When I speak to the doc again, I'll try to get more details. Also, I'd like to know if they have research on this subject or if they're going purely from anecdotal experience.
The reason I am at least open to the possibility is that I've NEVER had any positive results with probiotics in the past, in spite of trying just about every available brand and going as far as making kefir and other cultured foods at home. In all cases they make my constipation worse. This really confused me when everyone was telling me probiotics should help a lot in a case like mine.
I'll let you all know what I learn. In the meantime - does anyone have any ideas for stimulating peristalsis that aren't probiotics, fiber or laxatives?
Green apples coming up, I guess.
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Small Intestine Bacterial Overgrowth (SIBO)
See earlier posts in this thread for more info.
See "http://www.cedars-sinai.edu/2645.html" for a more thorough description.
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I've had these in my fridge, but have been afraid to take them. But I just read an article in First magazine talking about 4 reasons for Digestive Problems, and one of the suggestions was lack of Seratonin and it suggested taking Omega Capsules to help!
I am gonna to try them. Heck, I've tried so much other "crap" and spent so much money already on herbs and soluble fiber supplements that don't work. And I'm still constipated and in great pain. Not much to lose here, hey! 
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...in fact if I were you I'd be taking a low-dose probiotic right now! Read my other post to you about having two things together!
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No problem, dear. I saw a huge improvement when I first started taking them, so I hope they help you! Good luck!
--------------------
Elizabeth
all those years it wasn't IBS - it was celiac!
send me an email: liz@dopple.net
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I don't really expect to go the day after an enema. But the second or third day, things start to get really uncomfortable. Energy drops, malaise sets in, appetite plummets, can't concentrate... I know the signs by now.
I left a rather strong message on the GI clinic voicemail at Cedars-Sinai today. Still no return call. Sigh.
I'm eating "mush" only, strong peppermint tea, and I decided to do small doses of probiotics and fiber. I'll try the Natural Calm (magnesium) and, if necessary, Miralax. I've also ordered the "Fruit-eze" and will start that this weekend.
Thanks again to everyone.
Chris
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that the green apple juice didn't work. I'm sorry to hear that. I hope one of the other suggestions people have made here - or one of the other items from your cabinet of retired treatments - will help.
I also hope you'll consider seriously Linz' suggestion that you may have had both SIBO and IBS and that curing the SIBO has still left you with IBS. It sounds logical to me.
One question, if I may. What tests did Cedar-Sinai use to diagnose you with SIBO?
Take care.
--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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I haven't tried the green apple juice yet. Had to borrow a juicer from a friend. Admittedly I'm a bit skeptical when more "extreme" measures, like strong senna tea, huge doses of magnesium and stool softeners have failed. But I suppose it's worth a try.
Tomorrow I receive the "Fruit-Eze" product which I'll try as well.
Cedars uses a hydrogen breath test to determine the presence of bacterial overgrowth. You can learn more about it at: "http://www.cedars-sinai.edu/2636.html"
Chris
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Fruit-eze
#180298 - 05/20/05 08:26 AM
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Cyndy
Reged: 03/05/05
Posts: 1301
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That stuff looks wicked! Prunes, raisins, dates, prune juice! Yikes, tummy ache. Let us know if it helps. Maybe I'm just assuming this would be "painful" on the bowels.
Please let us know how it "goes down" will you?
Also, senna, aloe, and cascara cause permanent cathartic colon. so, if you've been taking these for a while, it could have caused you some of the lazy colon syndrome your experiencing now.
Check out the research library. web page and web page
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For me, dates, raisins and prunes don't cause any problems. So I'm optimistic about this formula.
I don't take senna or any of the cathartic laxatives regularly. Only when things get really stuck. Which, before this antibiotic treatment, wasn't all that often as long as I was doing my regular daily routine.
The aloe product I've been on for quite a while is called Atri-aloe. There seems to be some disagreement amongst my various docs and health care practitioners and this board as to whether it is habit-forming and damaging to the colon. Perhaps my recent experience is the proof that it is. Or maybe it's just that my colon is "paralyzed" after such an intense drug treatment. Who knows.
I had to do antother enema yesterday. It's always a trade-off, because allthough it alleviates the constipation, my gut is always super traumatized for at least a day or two afterwards. Lots of bloating, cramps, gas and pain.
Sheesh, it's a lose-lose battle right now. Hoping for a change. I'll keep you all posted on the Fruit-Eze and if I can ever reach my doctors again at Cedars.
Chris
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I know how awful chronic constipation is on our quality of life. I haven't gone all week and I am so desperate for relief.
And very discouraged and confused over all the differing answers/opinions on what is safe and what is not. One internal med doc told me Aloe was okay, another 2 told me it was not. And Heather's health reports in the Library go against aloe too.
So many differing views. How are we non-medical people suppose to know if what we are doing to our bodies is causing irreversible damage. We are talking serious consequences for our bodies and the future functioning ability of our organs. This is serious stuff not to be taken lightly or screwed around with. Certainly worth being taken seriously.
What is wrong with doctors. Their oath says to first do no harm. So how can they be doing us harm so nonchalantly? And if it were them in this pain and agony, you bet they'd be working harder to find some relief and some answers so that the quality of their life was bearably.
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Ah, well, in the unlikely event you do try the green apple juice, I'd like to hear your results: good, bad, or indifferent. Sheer curiosity on my part.
Good luck with the "Fruit-Eze".
Thanks for the info on the breath test.
Take care.
--------------------
[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Cyndy,
I was really moved reading your post because I can relate to all of it so deeply. It is incredibly frustrating and confusing when there's so much disagreement out there about what is and isn't good for us. And when we're talking about something as fundamental as our health and well-being, it can be truly discouraging.
It's so hard to know who to trust and who to believe about all of this. In the past my own intuition has been my guide. But after six years of following "my gut" (sorry, just came out this way!) and not getting anywhere, I'm not so sure anymore.
I'm lucky in that I've had extremely caring doctors (except the most recent Cedars clinic), many of whom have been through some kind of chronic illness. But even then, they're only human and they do the best they can based on their experience and knowledge.
Ultimately I guess it just comes down to the fact that we know very little about the gut and why it gets sick and what to do about it. It seems like the more we learn, the more we have to learn. It is, after all, a second brain and therefore has all of the complexity and mystery that comes along with that.
The other issue seems to be that what works for one person doesn't work for another. That is abundantly clear to me anytime I visit a message board like this one. This creates a lot of confusion as well.
I wish the medical community had more accurate and sophisticated methods of diagnosing "IBS". I really believe that IBS is actually several different conditions that haven't been named or discovered yet, and that is why there is no single treatment that works for everyone. In the meantime, people like you and me suffer a lot because we just have to stumble around and try everything. We're the guinea pigs in a really painful experiment.
I really hope you are able to find something that works for you Cyndy. I'll continue to share my experiences in the hopes that anything I learn may be of value to you, and others here.
Chris
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This stuff is amazing, especially if you suffer from constipation! IT DOES have fiber... but you should check this site and click on product, then ORGANIC CLEANSER. I do not sell this product (so I'm not pulling a fast one)... I just use it with good results.. plus it's all natural.
http://www.greenlineorganic.com
Good luck!
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Some of the ingredients in it are known to cause gas, cramping & pain in people with IBS. One of the cautions is also: Quote:
Do not use this product if there is abdominal pain, nausea, vomiting, rectal bleeding, or if one is pregnant or nursing an infant.
Who with IBS does NOT have abdominal pain or nausea??
It doesn't look like a safe product to me.
--------------------
Shelli - Wife & stay at home mom to 1 son, 1 dog & 2 parrots! IBS-A, usually C.
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Me neither!
#180569 - 05/22/05 03:06 AM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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Anyone with IBS should be wary of any product name containing the word "cleanse". All GI cleanses tend to be too harsh for IBS bods and can trigger off a major attack spell.
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I am a chronic Cer, so I know what you are going through, believe me. I don't think D folks can relate to how badly we feel inside with all this "crap" inside us all the time. (No offense to all D folks! I know you have your own problems ) I worry about the waste causing a toxic environment in our bodies over time. I mean, it is filled with toxins and "waste" from our bodies and remains in our bodies for weeks. Who knows what damage the toxic environment is creating inside of us. It can't be good or healthy to have so much waste sitting in us becoming more toxic and growing creating an even unhealthier environment.
Having said all that, I am still too chicken to do one yet for fear of any trauma it may cause to our abnormal GI systems.
I hope if anyone out there has had one, they will share their experiences.
I have read different sights and see many testimonials from satisfied IBSers who have had this done. Just don't know how trustworthy they are...they could be fake testimonials from the company itself. It's a shame to be so cynical, but I don't want to cause even more pain to my already pained body.
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Cyndy,
I'm not a big fan of any cleanses, and I think they're ultimately more damaging than helpful for IBS folks. However, that sometimes has to be weighed against the risks (that you wondered about) and sheer discomfort of impacted bowels. Occasionally, I give myself an enema to get some relief and clear things out... even though it often causes a lot of cramping, pain and gas afterwards. Six of one, half dozen of the other, right? Anyhow, I think enemas are generally safer than the "cleanse" products on the market. Tip: if you do an enema, make sure to take a couple of peppermint capsules about an hour before and have lots of really strong peppermint tea to drink directly afterwards, as well as a heating pad or hot water botttle to put on your belly.
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I spoke with one of the doctors at Cedars-Sinai today, and asked again about probiotics and fiber. Her response was that in their clinical experience, patients with IBS caused by SIBO already have a predisposition to bacterial overgrowth. Introduction of large amounts of bacteria, even if it is healthy bacteria in the case of probiotics, can easily contribute to overgrowth in these patients. She said that most of their patients who take probiotics report that it makes their symptoms worse, not better.
It's a similar story with fiber, though she believes it's not as potentially harmful for SIBO patients. If the fiber actually helps move stool through the intestines, then it is effective of course. But in many cases she's observed, the fiber does not increase motility and provides bacteria with a perfect source of food... leading to bacterial overgrowth and symptoms associated with fermentation (gas, bloating, etc.)
So that's their point of view. Based on the ineffectiveness of the treatment I just went through (antibiotics followed by Zelnorm, which works in 90% of their researched trials), her diagnosis is that although SIBO may have been contributing to my problems, it probably wasn't the cause.
She wants me to come back down there and have more tests: endoscopy with biopsy to rule out possible GI pathogens and infections, colonic motility/scintigraphic test (to determine if constipation is caused by nerve problem or muscle weakness), antroduodenal manometry (measure pressures in stomach and small intestine before and after eating) and a colonoscopy.
I still haven't been able to have a BM without an enema or HUGE doses of magnesium and vitamin C - both of which cause incredible amounts of pain, cramping, gas and bloating for the next 24-36 hours. I get to choose between the extreme discomfort and malaise that comes with constipation, or, the excruciating pain and discomfort that come with the use of harsh laxatives. So fun!!!
The doctor recommended MOM and castor oil as the least harmful laxatives. Perhaps I'll try these.
Chris
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...and life in general? Any improvements? Are you still trying the fiber or probiotics at all? I hope they are all helping you.
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Hi Cyndy,
This will be only my fourth day on the Fruit-Eze, so it's probably too soon to tell. I've noticed a lot more gas and bloating again over the past couple days... hard to say whether that's due to the Fruit-Eze, the high doses of magnesium and vitamin C I've been taking, or just being severely constipated for so many weeks now. I have had a couple of BMs after starting the Fruit-Eze but they were very incomplete (hardly anything comes out).
I've also started the Acacia fiber at a very low dose, 1/2 tsp. 2x/day. This is only the third day on that. As for probiotics, I was taking them for about ten days and saw no improvement. Since they've always made the constipation worse, and caused a lot of gas and bloating along with that, I'm hesitant to keep taking them. Have you noticed a similar thing with probiotics Cyndy? Or do they help you?
Thanks for checking in. I'm pretty freaked out that I caused some kind of irreversible damage with those antibiotics. As I know you understand, it's beyond frustrating that my body can't do one of its most basic and necessary functions - elimination - on its own.
Chris
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Chris,
I wouldn't worry so much about causing irreversible damage with the antibiotics. It took me a few weeks to get all the C out of my system that had built up, but after that, I've been doing wonderful - much better than I was prior to starting the antibiotics. In fact, I will probably do another round of them (with copious amounts of miralax during the 10 days, of course) when I go back to see my GI next month.
Sometimes it just takes a while to get our guts straightened back out after a lot of C. Be patient, I'm sure it will work out soon.
Elizabeth
--------------------
Elizabeth
all those years it wasn't IBS - it was celiac!
send me an email: liz@dopple.net
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Elizabeth,
Thanks for your encouraging words. I'm definitely feeling DIScouraged. It's been two and a half weeks now and things really haven't gotten much better. The only way I can have a BM is with HUGE doses of Vit. C and magesium, or another laxative. Even then, it's really watery and not much comes out. And of course, taking those things often increases the gas and bloating that had improved so much.
Maybe I really should try Miralax. Is it your plan to wean off of that or are you comfortable being on it? And sorry to be graphic, but are your stools well formed on that product or is it more like diarrhea? (You don't have to answer that if you don't want to!)
Chris
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I'm a veteran of constipation but am new to this post-infection IBS. 1. I highly recommend doing kegel exercises to get peristalsis working. (long story involving bladder/rectal prolapse after 2 kids,PT, & mesh implant)2. I've currently had diarrhea for 3 weeks non-stop. sudden onset after a pork chop at a restaurant. 2 different doctors, 2 blood tests, 2 differing stool samples later. they say the flora is normal. please tell me what to do. I am basically diagnosing myself since nobody can help. I doubt 1 meal made me suddenly celiac after a lifetime of eating anything. need a clue please. thanks for any advice.
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