# New Member frustrated



## Oceangirl (Apr 6, 2014)

I have ibs with severe abdominal cramping and diarrhea. It's been going on for almost a year now. I am having trouble going places and enjoying my life. I feel like I am forgetting what it is like to feel well. I know there are medications to treat ibs. My dad had ibs as an adult and he said he took a medication that really helped him. I have asked my doctor twice now to give me medication for ibs but he tells me to see my psychiatrist and go to therapy. I have panic disorder but my anxiety isn't that bad. It's been much worse in the past. I have been to counseling on and off my entire life. I will feel completely fine then eat the wrong thing I can't even guess and then I'm in agonizing pain. I don't know much about these medications but is there a reason a doctor would not want to prescribe ibs meds? I feel he doesn't take me seriously when I have medical issues and blames everything on my anxiety. I didn't even have this bad of diarrhea when I had full blown panic attacks years ago and there was an obvious connection I could feel the stress affection my digestion. I felt panicked. I wonder sometimes if I am that out of touch with my body now that I'm having anxiety and not even aware of it because my doctor always says my anxiety causes ibs and sometimes I stop breathing at night and wake up or have bad cramps and he says it's all from my anxiety but I feel calm most of the time and am on medication. He makes me feel like I'm crazy I don't know what to do.


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## atilla (Apr 6, 2014)

I had the same problem a long time ago. Have You had any tests done or have you seen a GI doctor?


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## Oceangirl (Apr 6, 2014)

I had some blood work and stool samples done. I haven't seen a GI specialist.


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## atilla (Apr 6, 2014)

I would suggest making that your next step, Find a good GI doc or have your PC doc suggest one. Most PC docs don't know enough about IBS to feel comfortable about prescribing meds for it other than imodium.


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## Oceangirl (Apr 6, 2014)

I could ask to see a GI doctor. You used to have it? Did your symptoms go away? Did you do anything?


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## atilla (Apr 6, 2014)

I still have it. I have been to all kinds of docs and stayed a week in the hospital getting every test they could think of and nobody can tell me what the cause of my problem is. So, now I see a PM doc and it helps the IBS, but opens up another set of problems. The GI doc is going to start you on Imodium or something like it, I assume you've tried that already... right? And then something stronger and hopefully that will help you.


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## Oceangirl (Apr 6, 2014)

Yeah he told me to take Ammodium and see a therapist. I just can't live like this, Ammodium takes to long to work and I still have cramps and my stomach is sore all the time but he won't give me any kind of prescription.


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## Oceangirl (Apr 6, 2014)

My main doctor I mean. I should try to ask to see a GI specialist. I'm thinking of changing doctors.


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## atilla (Apr 6, 2014)

A new doc sounds like a step in the right direction. They told me to go see a therapist too, and that annoyed me - like I'm making this problem up for attention or something. Try a new PC or find a GI doc and see what happens.


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## atilla (Apr 6, 2014)

Oh Yeah - Start keeping a journal of what you eat everyday and what happens when you eat it - It makes it easier for the GI doc. Everyone is different in what causes their problems and what works for them but the GI doc may see something wrong with what you're eating. The more info you can provide the GI doc, the better off you'll be.


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## Oceangirl (Apr 6, 2014)

Yeah I know chocolate was a huge trigger but then I ate a large seafood meal the other day and I was done for.


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## atilla (Apr 6, 2014)

Does the Amitrityline do anything for you? My PM doc started me on it a couple of weeks ago, I'm taking 30mg every night. The only thing it does is keep me awake all night.


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## Oceangirl (Apr 6, 2014)

I take 10mg but I've taken it for many years now before all these problems. It's not really doing anything for me as far as my ibs goes. I hope someday they figure out a real cure for this. It's like when they said ulcers were caused by stress but they discovered it's caused by a parasite. I think someday they will figure out ibs. People have it who don't have anxiety problems. I wish they wouldn't say everything they don't know the answer for was caused by stress. There's something wrong and I know there is a real reason for it. I don't think I can make myself go to the bathroom 15x a day and have severe cramping AFTER I eat something just by mentally being under stress. It would happen all the time but it's always an hour after I eat.


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## atilla (Apr 6, 2014)

I think the doctors telling everyone to go to a therapist is something they have to do to cover themselves. The docs blame IBS on stress, poor diet, being dehydrated, smoking, drinking, and a list of other things. I think it's just an excuse for them to get rid of us. I have been to so many doctors and when they have tried everything they know and nothing works, they tell me to go see a specialist. hopefully someday they will figure it out. I'm on morphine and oxycodone now, opiates relax the smooth muscle in the digestive system, and it slows everything down.


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## Oceangirl (Apr 6, 2014)

So sorry you're going through this to. Every time they don't know what causes something since the beginning of medicine they say it's stress or you're making it up in your mind. It's funny because everyone is stressed out so of course you can say that it is the cause of anything. I sense to my doctor is tired of me complaining and is almost like talk to the therapist not me kinda attitude. I've read some of it being possibly caused by to much yeast or a bacterial problem or a problem with serotonin. I saw they have digestive advantage for ibs was thinking of trying it. The internet is full of all kinds of cure all pills I wouldn't even know what to try or what could even work. I can't take probiotics it makes my symptoms 10x worse. I wonder if you could take Ammodium before you eat sometimes. I carry malox around with me in my purse everywhere I go sucks. :/


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## atilla (Apr 6, 2014)

Take it a half hour before you eat.


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## Oceangirl (Apr 6, 2014)

Ok thanks I will try that!


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## lebreck31 (Mar 19, 2014)

Yep take the immodium 1/2 hour before you eat. It is the only thing i have ever tried that somewhat works. If you have a Sam's club near you it is really cheap you get 400 pills for $6. It is generic (loperamide hydrochloride 2mg) but it works exactly the same!


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## Oceangirl (Apr 6, 2014)

Thanks will definitely try that is it ok to take everyday?


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## Colt (May 5, 2011)

Oceangirl said:


> Thanks will definitely try that is it ok to take everyday?


Imodium is safe to be taken daily.....some people take up to ten or more. Many people build up tolerance to it, I am one of those people. I suggest you try taking a couple of days a week and take something else. Also, you can start off small, with a 1/3 or a 1/2 pill and work from there. Tweak the times you take it too. Some people take it with meals, some take it in the morning or night. Whatever works. I take one each morning, and on really bad days, take one before bed. I find the one before bed blocks you up a lot, because your system is already slowed down from sleep.


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## happymommmy (Jan 28, 2014)

The diarsoothe worked for standard "ibs-d" and it worked for food poisoning from eggs.


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## Sugatree87 (Sep 21, 2011)

I agree with atilla; definately see a GI doctor. I was given a colonoscopy, and that's when they could see my colon was twitching, therefore there was something actually physically wrong with me. It only took three doctor visits to figure it out. Now everytime I see a doctor and tell them I have IBS, I tell them I've actually had a colonoscopy and it ends there. No doubts about whether or not its in my head. Stress/anxiety as well as other emotions do effect IBS, so for some people if they are having real mental issues, they do seek psychiatric help. That may not be the case for you; only you would know that for sure. When I was first diagnosed, the doctor gave me a chewable pill that eased the systems imediately, which helped a lot while I was still figuring out all my trigger foods. I hope you find a great GI doctor, and good luck.


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## goodmorning111 (Feb 20, 2014)

I know, ibs hell. take the diarsoothe for it, and don't drink o.j. or coffee. liquor will kick you in the rear, too. don't get depressed, this will turn around.


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## Oceangirl (Apr 6, 2014)

I haven't heard of diarsoothe I will try it. My doctor wrote me back and said there is a medicine that starts with a C that affects your digestive salts and will slow things down but he wants me to try Ammodium first. Of course I have been but was using it after I already has problems since that's what the bottle had said.


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## Colt (May 5, 2011)

Oceangirl said:


> I haven't heard of diarsoothe I will try it. My doctor wrote me back and said there is a medicine that starts with a C that affects your digestive salts and will slow things down but he wants me to try Ammodium first. Of course I have been but was using it after I already has problems since that's what the bottle had said.


Your doctor is referring to Cholestyramine (Questran, Questran Light, Cholybar, Olestyr) and it helps many people. It is totally harmless but you need to ease into it and tweak your dosage....and yes, try Imodium!!

Oh, and read my thread about this BS Diarsoothe....this forum has some phony posters who are pumping this product.


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## atilla (Apr 6, 2014)

My IBS wasn't as bad years ago and the cholestramine worked for me for a while. The GI doc I had that prescribed it for me told me it was a horrible tasting liquid that I was to mix with juice and drink - He said it was an old GI doctor trick that used cholesteral medication that had constipation as a strong side effect. When I went to pick up the prescription they gave me an orange flavored powder. I called the doctor back (thinking I got the wrong medication) and the nurse on the phone told me that the horrible tasting liquid hadn't been used in years... That made me question my doctors knowledge, and then I moved on to another. Anyways... Did they tell you to take it with the imodium or by itself? I would try it by itself and see if it helps. Did you try taking the imodium before meals and did it help at all?


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## Colt (May 5, 2011)

atilla said:


> My IBS wasn't as bad years ago and the cholestramine worked for me for a while. The GI doc I had that prescribed it for me told me it was a horrible tasting liquid that I was to mix with juice and drink - He said it was an old GI doctor trick that used cholesteral medication that had constipation as a strong side effect. When I went to pick up the prescription they gave me an orange flavored powder. I called the doctor back (thinking I got the wrong medication) and the nurse on the phone told me that the horrible tasting liquid hadn't been used in years... That made me question my doctors knowledge, and then I moved on to another. Anyways... Did they tell you to take it with the imodium or by itself? I would try it by itself and see if it helps. Did you try taking the imodium before meals and did it help at all?


Cholestyramine is and orange liquid, but it does not taste too bad. One must be careful to not get the "sugar-free" as it contains sorbitol, or some other fruit alcohol that is not oft well-tolerated.

For me it was a savior, but alas - it too faded in effect. I do use it as a part of my 'days off Imodium" strategy.


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## Oceangirl (Apr 6, 2014)

Yeah my doctor hasn't given it to me yet. I haven't had a chance to get to the store to get Ammodium or anything else yet. I wish I had I was walking to fast in high heat and started getting stomach cramps and way to hot and I think it triggered my ibs. Have stopped at the bathroom 4 times on the way back from this park. Ugh just miserable, going to get some of your suggestions soon and take them beforehand ASAP.


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## IBS_not_b_good (Apr 7, 2014)

Do not waste your money on diarsoothe! I tried it and it is a waste of money


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## IBS_not_b_good (Apr 7, 2014)

I am gonna try manuka honey and also have an ALCAT food sensitivity test scheduled. If either of these things help me or even if they don't i will let everyone know for sure. I have had diarrhea for over 20 years now so i will try anything once.(even diarsoothe unfortunately)
Right now i take loperamide hcl (generic immodium) 1/2 hour before meals and it definitely helps but i am not satisfied with it


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## Oceangirl (Apr 6, 2014)

Wow that's lame that people post about that just to sell the product. I've read about that honey to. I just took Ammodium this morning as a precaution but oh my stomach muscles are so sore. How do you guys deal with that? I'm gonna take some Motrin again. It's like when it happens my whole day is ruined because I'm in bed with sore muscles it still hurts from my attack yesterday.


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## IBS_not_b_good (Apr 7, 2014)

When i was about 12 i started having the problems and back then i would have such bad stomach pain i would lay in the fetal position on the bathroom floor crying. Now i have mainly the diarrhea and only get the stomach pain once in a while. I don't get a stomach ache from the loperamide hcl at all but if you are getting a bad stomach ache from it maybe it's not for you. If you do end up ordering the manuka honey just make sure you research it. There are many fakes out there which should be illegal but somehow they get away with it! It has to have the "UMF" label which is the only actual certified manuka honey. The higher the UMF the more healing qualities. I will try it when it comes in and let everyone know how it works. If it helps me it will be worth every penny but it is quite pricey. $32/8.8oz on amazon.


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## atilla (Apr 6, 2014)

I would talk to your doctor about the stomach pains from the imodium. Also, this might sound stupid because I told you to take it before you eat - which works for some people... But, maybe you need to take the initial dose with something you eat, not on an empty stomach, or take 2 pills before bed, a few hours after dinner so they have time to get into your system. Sometimes when your body is introduced to something new it reacts weird, giving you pain.

I really believe 75% of the posts I have read on this website are from the heart, real people, really trying to learn and/or help each other out. However, I highly doubt anyone on here is a doctor, and even more, your doctor. Your doctor is really the only person you should be listening to as far as whats going on in your stomach. Always let your doctor know what else you're taking, even if it's only imodium, or honey, or anything else - as it may compromise what he/she is giving you. The ideas you get from all of us that do care, are all from personal expierience and from what helped us. But they may not help you. Take the ideas you like from us and ask your doctor about them, I say that because until you get to a GI doctor, your PC doctor might not be too knowledgable with the digestive system.

I am posting this because some of the info I read on this website is nothing more than uneducated people that have no clue about IBS or what we go through, They assume because they had the runs two days in a row and some magic beans they bought on amazon or ebay worked they feel the need to post fifty times about it and they think they're saving the world. They're far from it, and "US"


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## Oceangirl (Apr 6, 2014)

Having a bad day today. I took the Ammodium this morning and I haven't been able to poop all day but I am still having violent diarrheal cramps. Almost threw up and was trying to on the side of the gas station. The people I was with wanted to take me to the hospital but I said no. I couldn't sit there for hours waiting to be seen I was worried it would be over for me. I knew I needed fluids immediately. It was extremely hot again today I am out of town in hot weather and again think I got severe dehydration with these other problems really was wondering if I was just going to die. Felt like I wanted to scream over and over but held it in. Am drinking pedialyte in the bathtub it is helping a bit. Trying to get my fluids up. Having agonizing stomach cramps. But I'm not as extremely thirsty as I was and a bit less nausea. I wanted to cry but I think cause I was dehydrated I couldn't. Am going to take stool softners to.

Yeah I need to see a GI doctor am worried my doctor will just say no. He thinks it's all anxiety stress related. He's done stool tests and I chickened out of the lower GI test cause I didn't want something up my butt like that long it sounds scary and painful. I actually had a stomach bug for a month and was feeling better when it was time for the test so I canceled. I was ok for two or three months but I've had issues since and sometimes I feel ok for even a month then I'm in hell days on end. It's random. I will maybe just change doctors at this point.


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## IBS_not_b_good (Apr 7, 2014)

Change doctors and make sure you see a GI doctor ASAP. Research GI doctors in your area so you can get a good one. At least they can run some tests to eliminate some possibilities. People on here for the most part are trying to help but a good GI doctor will be the best solution. If the GI doctor can't figure it out then they will usually say it is IBS and at that point you can try different things to see what works best for you but everyone has different things they do that work for them and it may not work for you but your first step should definately be going to a GI doctor. You may have something more serious than IBS and need different prescriptions. And don't be afraid of the colonoscopy you will be out for it and not even realize it happened when you wake up and there is no pain with it. The worst part is drinking the stuff they give you the night before to clean out your system. The upper GI I thought was worse because i was having trouble drinking that Barium without throwing it back up. Good luck with everything!


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## atilla (Apr 6, 2014)

Oceangirl - Any updates for us?


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## Oceangirl (Apr 6, 2014)

Hey, thanks so much for asking. Unfortunately I haven't been doing well. Have been to ER twice now in the last three weeks. I get almost like an attack of severe cramping and horrible diarrhea. It almost seems like I'm getting worse. The cramping is getting worse anyway. I finally got a GI referral and they called me the other day and I'm going to make an appointment. I met with my doctor again and he says he doesn't think they will find anything and this is just stress. Wouldn't that be great if I could just do some soul searching and find a end to going to the bathroom so much I get dehydrated and end up in ER. I know stress can't do something like this to someone. I haven't really gone anywhere in a while. Have been missing work. Now I really am getting a bit depressed and weepy. Scared about getting this colonoscopy. What if they can't find anything and there's no cure for IBS? I've changed my diet, no wheat am cutting out milk now. Have lost weight. Just having a hard time. Did any of you have a colonoscopy? Was it hard to go through?


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## Oceangirl (Apr 6, 2014)

I'm wondering because for the lower GI colonoscopy I've heard you are awake. Not sure what they're going to do.


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## Oceangirl (Apr 6, 2014)

Oh yeah and I did try the Ammodium, unfortunately it didn't hurt I had the same horrible cramps then I just couldn't go to the bathroom.


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## atilla (Apr 6, 2014)

I hope you get help with the GI doc... Years ago I had a colonoscopy and I was awake for it, that was the worst - the camera thing that they put in you pumps air into your intestines to expand them so the thing can go in and I felt like a balloon that was ready to pop. I felt like I was going to explode. The second and third times I have been knocked out and didn't feel or remember a thing. You most likely won't be awake for it. When I was on the stetcher they wheeled me into the room and they told me to count from 1 to 10 and inhale the mask and by the time I got to maybe 4 or 5 I was sound asleep. When I woke up after I didn't feel any pain from the procedure and didn't remember anything except the countdown. After I had it done they didn't find anything wrong and to me it was a let down. I was hoping they would find something that was easy to fix, but that wasn't the case. If they don't find anything wrong inside you they will most likely start you on medication and hopefully that will work for you.


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## atilla (Apr 6, 2014)

I'm checking up on you... any updates?


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## Oceangirl (Apr 6, 2014)

How kind of you to check up on me. I have a colonoscopy scheduled for June 1st. I wish I didn't have to wait so long. The GI doctor said I could have post infectious ibs or maybe the Motrin I have taken for years wore away the lining of my small intestine but she can't rule out chrons or anything else till I do the colonoscopy.

I have hardly gone anywhere now in a month. I went out with some friends yesterday and ate out and had an attack and my anxiety has been horrible lately because of my pain so ended up having to leave. Really felt embarrassed.

I was reading that book a new ibs solution and so far he makes a very compelling case that ibs is caused by an overgrowth of bacteria in the small intestine and recommends to ask your doctor to give you this specific 10 day antibiotic treatment. His hospital has done tests but I guess it's controversial or there haven't been enough follow up studies. If I get diagnosed with ibs I really feel like I want to try it. My GI doctor says it's just treating the symptoms and that you can have more diarrhea and problems later from taking antibiotics. I don't know Has anyone heard of the SIBO thing or tried it or read this book?

Also even though I have bad cramping and go to the bathroom say an hour after I eat when I go poop I mean I call it diarrhea cause I'm going a lot but my stool isn't watery like diarrhea and is a fully formed stool. Even if have bad spasm and go 3 times in 30 minutes or something. It doesn't look like diarrhea. I was just wondering if this was normal of ibs.


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## Kathleen M. (Nov 16, 1999)

We've been talking about the SIBO thing since Pimentel first published the first paper on it.

The main problem is that you may clear the bacteria out for a bit, but usually it comes back and sometimes the antibiotics are less effective later on.

That over-reactive gastro colic reflex is pretty common in IBS (colon gets more active after meals). I might try an antispasmodic before meals before trying the antibiotics. If the doc will prescribe one there are a couple of ones they use. The OTC one most people use is peppermint (either a tea or I use Altoids, some people like the capsules) and usually these things help if you take them 20-30 minutes before a meal so they blunt that eat - then move the colon reflex a bit.


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## Oceangirl (Apr 6, 2014)

Yeah I have been looking into taking peppermint. The dicyclomine gives me bad leg cramps. The GI doctor has never heard of this before but I tried it again. I get super sleepy and after a few hours I get bad leg cramps. I'm very sensitive to medicine though. I keep trying to cut out different foods. I haven't had dairy for 4 days now and it's made a big difference. I don't want to get my hopes up but I haven't had cramping to bad or diarrhea since I stopped all dairy. I even managed to leave my house for an hour or so. I guess a lot of people have relapses on SIBO. I have no more sick time and am worried about losing my job. I can't support myself of disability. I don't know what to do. I read also about that vivonex diet? Am thinking of trying it.


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## IBS_not_b_good (Apr 7, 2014)

Look into a food sensitivity test. I had the ALCAT one done a few weeks ago and so far it has been unbelieveable! They came right to my house and did a blood draw and then they send it next day air to florida. Within a week you get your results back and when I read the list of foods i had a bad reaction to it blew my mind. Basically everything I was eating or drinking was on the list of foods to avoid which was very frustrating at first because I had to cut out a lot of things. I started the new diet 12 days ago and have not had any pain/diarrhea at all in the last 8 days which is definately a record for me in the last 20 years. I just hope it keeps working because I feel amazing! This may be something to consider for you. Research it and see if you think it is a good option. If you have any questions about it at all I would be happy to answer them.


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## Oceangirl (Apr 6, 2014)

I'll give it a try. I doubt my doctor or GI doctor will order it though. :/



IBS_not_b_good said:


> Look into a food sensitivity test. I had the ALCAT one done a few weeks ago and so far it has been unbelieveable! They came right to my house and did a blood draw and then they send it next day air to florida. Within a week you get your results back and when I read the list of foods i had a bad reaction to it blew my mind. Basically everything I was eating or drinking was on the list of foods to avoid which was very frustrating at first because I had to cut out a lot of things. I started the new diet 12 days ago and have not had any pain/diarrhea at all in the last 8 days which is definately a record for me in the last 20 years. I just hope it keeps working because I feel amazing! This may be something to consider for you. Research it and see if you think it is a good option. If you have any questions about it at all I would be happy to answer them.


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## IBS_not_b_good (Apr 7, 2014)

You can order it online if they won't. Nutritiongeeks is about the cheapest I found.


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## atilla (Apr 6, 2014)

Any Good News?


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## kat_hy (Mar 25, 2014)

I am very curious as to updates too. Please let us know how you are doing


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## Bobby Chang (Jun 12, 2014)

Oceangirl - Can you pl. let me know what kind of water you have been drinking ? Tap . Filtered or bottled - Also - have you been drinking fountain soda or coffee at office ?

your reply will help me suggest you some thing very simple.


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## Oceangirl (Apr 6, 2014)

Hey guys, thanks for checking up on me. Well I had my colonoscopy. They told me I would be sedated and not have anithesia. I was sedated years ago and remember being a little drugged up but awake. I don't know what they gave me but I really freaked out and got super dizzy and started yelling over and over I'm dizzy, I'm dizzy, I'm scared, I'm dizzy. Then I remember the nurse saying something and I woke up in another room where I had slept for five hours and they were already done. The doctor said my colon was completely normal and I had some mild hemeriods. I hadn't been sick for a couple weeks before I got it done. I've been trying to cut out all kinds of different foods and nothing helped but when I stopped drinking milk and milk products I have had a huge improvement. Sometimes this goes away so I can't be sure but I haven't been sick for almost a month now since I stopped having milk. I hope I am maybe lactose intolerant. I don't know for sure though.


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## Oceangirl (Apr 6, 2014)

Hey bobby, I usually drink filtered or spring water.


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## Bobby Chang (Jun 12, 2014)

What is the source of this filter water ? If it is tap water - stop using it and go full bottled water of reputed brand from store for all your cooking and drinking needs. Tea , Coffee everything should be made out of this water. No fountain soda or any


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## Oceangirl (Apr 6, 2014)

Hey everyone, well I was feeling ok for a couple months cutting out milk but I've been sick twice now when I are something with a lot of sugar both times. Does this happen to any of you? Is it because of the sibo idea of the bacteria being fed with sugar? How can I find a doctor who will give me antibiotics. GI and general at kaiser won't.


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## Oceangirl (Apr 6, 2014)

Sorry meant to say ate.


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## Oceangirl (Apr 6, 2014)

Hello everyone, well it's been a long road for me. I changed doctors and he is great. I just tested positive for SIBO. I convinced my doctor to give me Xifaxan. I have 550mg 3x a day for 14 days. Anyone have success with this? What symptoms should I expect on these pills?


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## Bobby Chang (Jun 12, 2014)

But it says here it will cause you more D

http://www.xifaxan550.com/?gclid=Cj0KEQjw1NufBRCx8ayaqY2t6KkBEiQA2nLWm9C4sK1HZbLOVS9aDYkBnJ6oZv6SA9-s1FjCv_qdrWgaArAn8P8HAQ


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## cocaui (Aug 19, 2009)

I had exactly the same story, one year it was ridiculous bad, having accidents almost 3 times a month, it was a nightmare and my GI doctor wasnt of help... Because later I lost my insurance I had to figure something. I dont know if this might help but I cook my own food, and is almost plain chicken, turkey and pork (pork is actually super efective to me), rice and plain veggies (but not too much or is even worst). Now I am very controlled, I havent use Immodium in months and when I have a relapse, I can control it until I get home. Nothing as bad as before. I never use oil or spices. I use once in a while Calcium that helps me while traveling.

What I can tell you is that this forum has helped me enormously, without these site and all the members, I can not imagine, what would have been my fate.


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## legbuh (Jan 9, 2005)

I'm glad I read your thread.

Ask your doctor about fecal transplants. Maybe you'll get lucky and find a doc that will help. I know it would help me. My sister who is younger and had IBS-D was "lucky" enough to find a doctor that would do it for her and she's so much better it's not even funny.

Our flora is messed up from the junk we eat, the Anitbiotics, severe illness, etc. We're slowly killing ourselves with all these darn drugs and antibiotics.


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## Oceangirl (Apr 6, 2014)

I will check that out. Thank you guys for your advice. I don't know if it will help and I'll let you know if it does but I'm seeing a integrative medicine doctor. He's the one who did the SIBO test. I'm going to start the Xifaxan this Monday. He said a week after I begin taking them to start taking VSL#3 it's some probiotic with specific strains for people with ibs and colitis, etc, To prevent my SIBO from coming back he gave me Bentaine with Pepsin. It increases stomach acid which some SIBO suffers may be low on. Having more acid is supposed to help kill unwanted bacteria. I also am going to continue to take Glutamine which helps repair the intestines and is super safe.

I also take enteric peppermint daily for pain and bowel movements etc, sometimes my stomach hurts to so I bite into a capsule and swallow it as well as just take them normally. It really helps my stomach pain. Unfortunately when I have a hellish attack not much in the world helps I feel so much pain I want to pass out, and nothing stops me from going to the bathroom either, I just try and hold onto my sanity, but oddly enough I had some zofran for nausea I got from my last ER visit and it helps with some of the pain when nothing else does, but when I have bad pain I really want to puke sometimes so that's probably why.

So trying the antibiotic, probiotic, and Bentaine with Pepsin coming up soon and I will let you guys know how it's working for me.


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## Bobby Chang (Jun 12, 2014)

Oceangirl - Can you pl. change your water to 100% bottled for everything cooking, drinking and tea etc for 2-3 days and see if you feel better. You need to change water + Add Probiotic Yogurt from Whole foods - 2 times a day ( 1 cup x 2 ) Unsweetened and have 1 Banana in the morning. There is nothing wrong with you. GUt Flora is messed up as legbuh said. It needs to be brought back up and protected with clean water. Unfortunately Tap water is not clean. Filtering and Boiling does not help. So go bottled for a few days. You'll be a changed person.


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## Oceangirl (Apr 6, 2014)

Hello, I don't drink tap water at all. I always drink bottled water. It hasn't helped me. I guess I do use tap water to brush my teeth though.


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## Bobby Chang (Jun 12, 2014)

Well in that case you need to focus on Probiotics and some fiber. Banana is great fiber source. and Unsweetened yogurt with active culture is what you need.

Did you by any chance took antibiotics prior to this condition ? Antibiotics and some other medicines also play a role in kiiling gut flora.


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## Oceangirl (Apr 6, 2014)

I have taken antibiotics. I have post infectious IBS. I had some kind of virus or food poisoning and I was sick for an entire month straight with diarrhea every single day, it went away after a month but I got sick again and I've never been the same since.


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## Oceangirl (Apr 6, 2014)

Well I will give you an update. Have been on Xifaxan for 7 days now. The first couple of days my stomach was enormous. It wasn't gas it was filled with water. The third day was the worst. Bad bad cramps and went to the bathroom more than I have ever gone in my life. I lost 9 pounds in a week and a half. I also had increased urination. It could have been just an ibs attack but my stomach hurt so bad and I had some of the worst cramping I've ever had. I wanted to just stop the pills so many times but I forced myself to keep taking them. Finally on day 4 some of the pain stopped. Days 5-7 and have had moderate cramping and diarrhea. Not nearly as bad as before so I hope I am getting used to the medication since I have 7 more days to go. Either that or I just had an attack the same time I started the pills and it's going away. I had extreme exhaustion, due to the pain going away or the pills I can't say but I felt drugged like I couldn't keep my eyes open and my eyelids felt like they were 50 pounds. My stomach isn't as bloated with water anymore and not urinating as frequently. Will update you as I continue the pills and the rest of the treatment. I'm going to be mad if this doesn't make me feel better in the long run because this sucks lol. I read there's usually not to many bad side effects but I'm taking 3, 550mg tablets a day and I tend to be sensitive to medication.


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## Colt (May 5, 2011)

Oceangirl said:


> Well I will give you an update. Have been on Xifaxan for 7 days now. The first couple of days my stomach was enormous. It wasn't gas it was filled with water. The third day was the worst. Bad bad cramps and went to the bathroom more than I have ever gone in my life. I lost 9 pounds in a week and a half. I also had increased urination. It could have been just an ibs attack but my stomach hurt so bad and I had some of the worst cramping I've ever had. I wanted to just stop the pills so many times but I forced myself to keep taking them. Finally on day 4 some of the pain stopped. Days 5-7 and have had moderate cramping and diarrhea. Not nearly as bad as before so I hope I am getting used to the medication since I have 7 more days to go. Either that or I just had an attack the same time I started the pills and it's going away. I had extreme exhaustion, due to the pain going away or the pills I can't say but I felt drugged like I couldn't keep my eyes open and my eyelids felt like they were 50 pounds. My stomach isn't as bloated with water anymore and not urinating as frequently. Will update you as I continue the pills and the rest of the treatment. I'm going to be mad if this doesn't make me feel better in the long run because this sucks lol. I read there's usually not to many bad side effects but I'm taking 3, 550mg tablets a day and I tend to be sensitive to medication.


Thanks for the update...Xifaxan is next on my list too.


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## Joana (Sep 8, 2014)

Hi!

Pills just made me worst.... There is a connection between gut problems and serotonin deficiency... Anxiety and bad sleeping can come from the gut, as serotonin is lacking in your body... There are new findings that indicate that the gut is our second brain, with more nervous terminals than the actual brain. Problem is we cannot control it. IBS is therefore very hard to control. I found that low FODMAP diet and exercise (yoga is quite good) help me a lot!

Good luck!

Joana


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## sunshinelover (Jul 24, 2013)

I started suffering from symptoms about a year and a half ago. It took 6 months, all kinds of GI tests and trial and error with food eliminations to get myself as close as back to normal as possible. My PC didn't feel comfortable prescribing any medication other then SSRI meds for anxiety and also blammed my issues on that. Finally my GI gave me an RX for Bentyl which is an anti spasmodic that helps with the cramping and pain. I also take 25mg of Nortriptalyine each night which helps with the serotonin levels in the GI system. Those meds made it more tolerable for me but changing my eating is was really helped get me back to normal. Research the LOWFODMAP diet. Foods, even healthy ones, are made with ingredients hard to digest. I also went gluten free and that made a huge difference. I take a 1/2 of an Imodium and the Bentyl first thing in the AM and I am usually fine all day. If I'm going through something extra stressful I will have a flare up but by being strict on my diet I can end the flare up quickly. It is VERY frustrating but you are not the only one! I was on the verge of depression and woke up and cried everyday bc I felt like my doctor didn't want to help me. Also check out the thread on this message board on Linda's Calcium Info, seems to work for a lot of people.


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## Oceangirl (Apr 6, 2014)

Hello everyone. I tried the Bentyl but it gave me bad leg cramps. I finished my antibiotic a few days ago. I gave up on day 11. Couldn't take it anymore. My stomach was so swelled with water and I kept peeing like crazy. The last three days I have had watery diarrhea. Usually my stool is normal I just go a lot. My doctor said I will have to wait a bit until the side effects go away to see if I'm better. I don't feel very good. My mom told me today I had dark circles and looked like I lost more weight. I feel weak. I think I am malnourished from all the diarrhea. I poop out everything I eat. Today was just 3 times in the morning so hoping I'm getting better. I started taking LSP 3x a day and I think it's helping me to not have agonizing stomach cramps. I still have diarrhea but it's weird my stomach isn't cramping like usual. I am just going to wait and see. Taking VS3 to and everything else I mentioned before. I feel so depressed. I don't see my friends anymore or go anywhere. I wonder if I'm never going to get better. I worry about losing my job if I don't get better. Things just suck. I'm hoping once these side effects go away maybe things will get better.


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## Bobby Chang (Jun 12, 2014)

Oceangirl said:


> Hello everyone. I tried the Bentyl but it gave me bad leg cramps. I finished my antibiotic a few days ago. I gave up on day 11. Couldn't take it anymore. My stomach was so swelled with water and I kept peeing like crazy. The last three days I have had watery diarrhea. Usually my stool is normal I just go a lot. My doctor said I will have to wait a bit until the side effects go away to see if I'm better. I don't feel very good. My mom told me today I had dark circles and looked like I lost more weight. I feel weak. I think I am malnourished from all the diarrhea. I poop out everything I eat. Today was just 3 times in the morning so hoping I'm getting better. I started taking LSP 3x a day and I think it's helping me to not have agonizing stomach cramps. I still have diarrhea but it's weird my stomach isn't cramping like usual. I am just going to wait and see. Taking VS3 to and everything else I mentioned before. I feel so depressed. I don't see my friends anymore or go anywhere. I wonder if I'm never going to get better. I worry about losing my job if I don't get better. Things just suck. I'm hoping once these side effects go away maybe things will get better.


Oceangirl : You need to change water to Bottled for all your needs not just drinking. Secondly - Have Banana twice a day to stop D. and third - Get some ACTIVIA Yogurt from store and start having it 2-3 times a day. Your D will stop and you 'll feel better. 100%


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## Oceangirl (Apr 6, 2014)

Well another update. I finished the antibiotic and started having really watery diarrhea. For a few days pain began radiating to my stomach, bladder and pelvic area and really just wanted to die. I think it's been almost 3 weeks of me feeling awful every single day since I finished the antibiotic. I think it would have been better to take the Xifaxan 2 times a day instead of 3.

Now the last 5 days I've noticed I have only gone to the bathroom one time a day. One day I didn't even go at all but I wasn't constipated. I have no pain at all as of this writing. I'm able to eat and not poop out everything. It's really incredible. I really began to notice a difference when I started taking this new probiotic my doctor recommended. It's a yeast actually. It helps to restore beneficial flora and keeps away bad bacteria. After a couple of days on it my diarrhea wasn't watery anymore. It's called saccharomyces boulardii. I'm also taking half a tablet of VSL-3 but was taking it before the saccharomyces boulardii and didn't notice anything different. I stopped the peppermint pills. I still am taking my GI caps but I really believe that probiotic helped me and maybe finally I am getting over the after effects of the antibiotic and maybe they worked. It's only been a few days so far but I'm feeling normal again. I also got cystoprotek and took that today but I know it can't work that fast. Well I will give it more time and see if this continues. Everyone is different but trying to let you guys know if anything is working for me in case it might help you to. You can't take the yeast if you have certain illnesses or a really bad immune system since it might cause a fungal infection but I'm paranoid about everything I take and it's helped a lot. It also helps to get rid of candida yeast and C.Diff infections.

So as of now I am taking

saccharomyces boulardii
VSL-3
GI encaps 
Cystoprotek

Just kind of gave up on everything else. The cystoprotek I got for my bladder pain I was having but it seems like it might help my ibs to. I took it years ago when I had bladder problems and they completely went away. I'll let you guys know if I stay well!


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## AnitaG (Sep 8, 2014)

I take liquid Immodium...that way I can control the dose. I also take liquid Simethicone to help with gas. lets face it,when you have liquid innards the last thing you want is gas! so I put a spoon full of the Immodium in a cup of water that has a dropper full of Simethicone in it.. mix the two and drink it down. If you take too much Immodium you will poo granite so it takes trial and error to see what works. Also Tums (calcium carbonate) helps a lot. I take a dose of all three during the day.. also the eating of peppemint helps. I eat Life saver peppermints.. and then watch your diet as much as you can. it all helps, but nothing makes it go away. The doctors just don't take it serious yet.


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## merrig (Sep 9, 2014)

I'm new here, I've had IBS-D for many years. Sometimes it is worse than other times. Right now been going through a rough patch last three months or so. Immodium works for me but it does take a while to kick in. My grandmother had ulcerated colitis and my dad had colon cancer, so I guess this sort of thing runs in my family. I also have diviticulitis and anxiety attacks. Docotors really don't get it at all, very frustrating. I feel I have at least found a place where people understand what I'm experiencing.

Finding a doc who really listens and understands how debilitating this disease can be is key to getting the help we are all seeking. Not happy with the doctors where I live now, but I guess I'll have to sort it out. It's very frustrating to feel sick everyday.

I've always been a little concerned about taking the Imodium every day but sometimes I don't have a choice.


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## Oceangirl (Apr 6, 2014)

That totally sucks. I had to change doctors and GI doctors and pay to see my own doctor so at least they're trying to help. I can't take Imodium because then it feels like I have to go so bad but I can't so my innards almost felt like they were twisting inside. It hurt even worse. I take pepto sometimes and the peppermint. I'm going to the bathroom 0-2 times a day but am still sore from 3 months straight of diarrhea. I'm going to give it more time and see. I read about mast cells and inflammation and your nerves can sometimes get so irritated they send pain signals when they're not supposed to. I'm staying on the cystoprotek. Even though it's for your bladder it's supposed to block mast cells but takes 2-3 months to work. Who knows if it will help but just going to try everything.


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## Oceangirl (Apr 6, 2014)

I also have terrible anxiety. I would also check and see if you have SIBO. I tested positive for it and the symptoms are exactly the same as IBS. Doctors say SIBO is unlikely in IBS so they don't test for it and just have you suffer for years in case they missed it but even the lowest studies have shown 7 percent of IBS suffered have SIBO. Many studies put it as high as 70 percent so I would insist on ruling this out. Antibiotics can help if you have SIBO.


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## AIRPLANE (Mar 15, 2004)

Some good info on SIBO here:

http://www.cortjohnson.org/blog/2014/06/25/cheaper-safer-better-herbal-approach-small-intestinal-bacterial-overgrowth/


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## Oceangirl (Apr 6, 2014)

AIRPLANE said:


> Some good info on SIBO here:
> 
> http://www.cortjohnson.org/blog/2014/06/25/cheaper-safer-better-herbal-approach-small-intestinal-bacterial-overgrowth/


My neuropathic doctor said he's tried to treat SIBO with herbs with many patients and they didn't work.


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## Oceangirl (Apr 6, 2014)

Well I am doing a bit better. Still having some pain and soreness and cramping but it's been over a week and I'm still going to the bathroom 0-2 times a day. I'm thinking something must have worked. Maybe the antibiotics. What's weird is my stomach seems to hurt. When I take capsules especially it's like I feel them just sitting in my stomach and want to puke. I take some of the bentaine hcl now to increase stomach acid and I think it helps with that. I'm far from healed yet but I'm having moments where I am not in constant pain. Stopping taking the yeast for now still on the cystoprotek and take the VSL-3 sometimes.

I was so sick going to the bathroom 10-15 times a day everyday for almost 3 months with the worst cramping imaginable so this is a big improvement. I still get a weird cramping feeling sometimes. It almost is like the capsules are having a hard time breaking down. I dunno. It feels localized to one side a while after I take my pills. I think the dehydration made everything worse to. I'm nervous still waiting for an attack to happen but things have been better so far. I can even have a tiny bit of something with milk but if I have to much I feel that cramping again to. It doesn't make me go to the bathroom though.

Going to wait a couple more weeks and see. Cystoprotek is supposed to stop inflammation and mast cells that make you have pain and has stuff to coat your bladder. I used to have interstitial cycitus to and was having pelvic/bladder pain again a week or so ago so I started them again but I'm wondering if it would help with my intestines and inflammation there to. It's the only thing I'm taking consistently now but it takes 2-3 months to work. Probably a silly idea but just going to see what happens. If I get sick again like before I'm just going to look into getting a fecal implant. My SIBO/IBS is so bad I'm on a modified work release form so I'm not going to give up.


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## Oceangirl (Apr 6, 2014)

I wanted to give you guys an update. I have now been going to the bathroom 0-2 times a day for over a month and am symptom free. I have had ibs/sibo for over a year extremely bad. I am hoping this lasts! I know I tried a lot of different things but what I think helped the most was:

1. Xifaxan antibiotic treatment 3x a day for 14 days. I only made it to day 11 since it was extremely hard.

2. After treatment I took saccharomyces boulardii
for a month and my stool became solid and I think it helped restore my helpful bacteria and got rid of some of the bad stuff.

3. Cystoprotek - it's marketed for repairing your bladder but it blocks mast cells that cause inflammation and contains compounds that rebuild the lining of your bladder and I think it helped with my intestines and inflammation. It takes time to work.

4. I drank Aloe Vera to help with stomach pain and to soothe my GI tract.

5. Licorice tea which contained ginger, cinnamon, and some other herbs for taste completely cured my stomach pain and muscle pain. Drink only one cup a day since to much licorice is not good. Cannot be taken on certain medications but this worked really well for me and quickly.

6. Slippery Elm lozenges provided some inflamation relief. I also took VSL-3 off and on but don't think it did much. I didn't notice anything different on glutamine. The Bentaine started giving me acid reflux so I stopped that.

Everyone is different but those things are what I did and I am finally not in pain or suffering anymore and my ibs is gone.


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## Oceangirl (Apr 6, 2014)

Oh and I also took vitamin E.


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