I can't stand this.
#312351 - 07/31/07 07:19 PM
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Fuzzle
Reged: 07/19/07
Posts: 6
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I've changed my life completely.
I tried eating only bread and drink only water and the Fiber all day...I woke up with diarrhea. Every day this week I have felt awful, and have had bowl issues, and this is the week that I gave up all of the irritants from the book. I'm trying to live off of white rice and bread, I can't stomach white rice, so I will put soy sauce on it, which while its still gross, I can atleast eat some of it. I wrote down a list of everything the book said was okay to eat, and I ate them...Now I'm worse off then I was before. I have a big thing coming up, a fantasy faire in which I have to camp there. And for some reason, the more I try to to better for my body, the worse it gets. I've been taking the fiber every day, I'm pretty sure peppermint only makes things worse, theres absolutely nothing I can do. I'm stressed, I'm panicked, I feel sick, I'm doing absolutely horrible, every day.
I've tried everything. All the tips, hints, pills, directions...and all I see is my condition worsening. I read on this site that if you need to just get your body back into regularity, just eat bread for 3 days and drink water. The day I tried it, I woke up with diarrhea the next morning. This trip is coming up, and I'm terrified of being in a car. This trip has a 15 minute road with no stops. If anything happens in that amount of time...What could I do? Nothing. I read every day about people getting better and how they can deal with this issue, find a way to live with it. I can't. The more I try, the worse I get...Its ironic and twisted that tests and treatment for this problem requires me to do exactly what my problem is...Going long distances in a vehicle, away from all bathrooms.
First I get that cramping feeling in my stomach, I get a cold body sweat, and tons of pressure in the lower area.
I'm even considering that fiber is bad for me, because all I can remember being on it is still being worse. I don't know what to do, I'm afraid, I'm suffering, I can't leave my house (ever), and I'm completely and devastatingly sick of this life. What can I do?
::EDIT:: I went to the faire...First weekend, stayed up till 7, felt like garbage, went all the way up there, 40 minute trip, I cut each road section into a designated number of minutes. I got there, Someone took our camping spit, We had to move everything and set it up in the worst camping spot ever, I felt like more crap, I set my tent up, I layed down, it was the hottest freaking thing I've ever been in, so I opened the tent door, slept for a little while longer, woke up, felt like more crap, got up, went into the big tent thing, drank water, felt worse, got my costume on, felt like ridiculous trash, went back, felt like throwing up, layed down, fell asleep, woke up, fell asleep, woke up sun burning me, felt like horrible trash, ate raisins after a lecture about my mom admitting me to a hospital if I don't start eating, felt like throwing up, mom made me eat chicken, we didn't have propane to cook the chicken, decided to have me go buy something for me to eat, I decided to just go home, I went home, the trip home was rough, I felt sick, I ate stuff at home, felt like throwing up, was kind of worried something bad might happen to me, and now, after that long explanation with terrible grammar and a million commas...I'm sitting here typing this up, I'm depressed, I absolutely hate my life, and all that time spent making my costume was for nothing. There is two more weekends of this, I really don't want to go, but after my mom helped me build my costume for such a long time, theres no way I can just not go.
Edited by Fuzzle (08/04/07 10:25 PM)
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Well you are not alone at all. I know what your going through. I have been like this for 7 long years.
It want get better there is know cure for this. But how ever it can be controlled to a point. I can't have fiber either. Okay now if you have trouble going to the bath room at ant point you can try this herbal called cascra sagrata you can find it at any herbal storeor at walmart. 2nd I started out eating buritto bread. You can put fat free turkey on it or any of the fat free meats. 3rd you can also buy morning star chicken patties or the nuggets and they also have the bacon all of there foods are very good for you. I have been on the ibs diet for 6 weeks. I started off very slow like with the wraps then work your way up to the morning star foods. It does take a few days to tell a difference but you will be able to tell in time. A big no, no to fatty foods. Also you can snsck on the 100 calorie packs there so great also rice cakes any kind. If you have cramping I found that elm tree bark tea oreven the capsules are so great. Personally I take the capsule th tea tastes awful you can only find the Elm Trea Bark at an herbal store. If you have any more questions or comments I'll try to help in any way i can. Because I know what your are going through Its so hard going through your day but it helps when you know theres others out there that are going through the same thing. hope i helped some. Get to feeling better soon. 
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I'm sorry you're feeling so bad! It is frustrating, trying to learn how to manage your IBS, especially because it can take a lot of trial and error and time. Since you have IBS-D, you should try taking Imodium until you get stable. A lot of us have used it as a preventive, taking it before an attack. For example, I would take half a dose (1 caplet) in the evenings OR in the morning. If I had an attack, then I'd take another caplet.
You mention this: "I read on this site that if you need to just get your body back into regularity, just eat bread for 3 days and drink water." That's INCORRECT. Actually, that's not Heather's recommendation at all. Breaking the Cycle (aka What to Eat When You Can't Eat Anything) recommends eating soluble fiber foods -- not just bread -- for a few days. So, you could be eating mashed potatoes, sweet potatoes, carrots, bananas, and (there's a list of soluble fiber foods under IBS Diet FAQs, link is to the left). Chicken broth or chicken breast is also a safe way to get protein during this time. You'll just want to make sure your meals are small and maybe have five small meals a day. For me, when I was starting out, a good meal to have was chicken breast w/ white rice and some cooked carrots. It's not the most flavorful dish, but it was a very soothing, easy to digest meal, especially for someone with IBS-D.
Have you looked at the information on the main site or checked out Heather's The First Year: IBS? These are much better ways to understand the IBS Diet. The boards can be helpful too, but I really feel it's more important to understand IBS and the diet by following one set of guidelines or one "guru" (as some people call her) -- for me, that's Heather.
In the meantime, what kind of fiber are you taking? How were you diagnosed with IBS? If the peppermint tea is not working for you, then just stop taking it. Maybe you can try it later (it really does help with cramping) or a different kind of tea. If you're not using Imodium right now, you should get some. Many GI doctors have recommended that we IBSers use Imodium as a maintenance drug to help control our D symptoms. You don't have to take it forever, but having it and taking it will give you some more confidence to get out or try new foods.
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The camping trip is in 2 days. Right now and for the past few days I've got gas, urge to go to the bathroom, and I either do or don't go. I'm eating everything I'm supposed to under the IBS diet regulation, and It just gets worse. I'm afraid to try anything new as I have a very short amount of time till I have to go on the trip, and if it gets worse...Thats it for me.
And it is not a fun thing to have Diarrhea in porta potties, with hundreds of people. Those things aren't exactly sound proof. My true fear is just getting there. I have to make a 40 minute or longer trip without going to the bathroom. That may sound easy, but if you are aware you have no escape, and you know that if anything happens your in serious trouble...Your body is just going to do what your afraid it might do. I take Immodium, and even Lomotil all the time, but that doesn't address why I'm getting worse, or why I'm doing so badly right now. And this time of all times...
My family doesn't understand in even the least. All they ever ever ever say is "They have bathrooms there".
I'm like GAH I DON'T CARE. They are public bathrooms for one, you have an attack of severe diarrhea with cramping and tell me how much you like being in a public bathroom. and second, its the trip up there. I'm trapped in a stupid car for like an hour constantly watching the time and trying to prevent my body from going to the bathroom. I get up like 6 hours early to get read for things, but now that they are actually going to leave for this thing around 6, I'm going to have to stay up all night. I'm afraid of this drive because a few weeks ago I went that way to my brothers wedding, I loaded up on all kinds of anti diarrheal pills, and when coming home, I had a very un-easy feeling in my stomach, the whole time. We ended up getting lost at one point, having to stop and 3 places, and that stretch of road was like 15 minutes long without anywhere to stop. If I feel like I feel right now on that road, I'm done for. I mean what would I do? Go on the side of the street? There is not one decent choice. I'm seriously terrified. I get no comfort from anyone, I'm completely alone with this, I'm so sick of the tests, and all these days leading up to this trip have been horrible. I really do hate my life.
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First of all, all this incredible stress and anxiety is probably sending your IBS into overdrive. I know how scary it is to travel. I know how terrifying it is to have an attack and have no where to go. I also know how embarassing it is when you're taking up the only bathroom or people can hear you. Take some major deep breaths. Calm down.
I know you're about to leave. Tomorrow, I would call your doctor and ask for a prescription strength anti-D. I was on one for years and it helped me when immodium stopped helping. Fortunately (or unfortunately) I became A last year and immodium is enough when I'm having a bad day.
I don't usually recommend this, but given your stress level, I would suggest that you don't eat the night before or that morning. Once your system has emptied out, you're usually OK. Yes, there can still be awful cramping and the feeling that you need to go, but at some point it has to just be that feeling and you really don't need to go.
Give this diet some time. Try posting in the Eating for IBS message board as I think more people post in there. I have been living with IBS for about 25 years. I have had stable times and horrible times. The last year has been unbearable. Then I found this site. I've changed my diet, am working on stress reduction and trying to look at things more positively. The problems haven't stopped, but they've gotten better and I've learned better ways of coping when there is a problem.
Hang in there. IBS D is usually the easier one to get control of and I'm sure you can do it. Everyone here will help.
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Hang In There
#312432 - 08/02/07 12:19 AM
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Stephie
Reged: 03/10/04
Posts: 2696
Loc: Vancouver, Canada
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Hi Fuzzle! I am so sorry to hear that you are going through such a rough time right now. I think a lot of us have been there or are there now, so I really hope that you find some suggestions that DO help you in your trial and error getting a stable, happier tummy. Note: You might want to post this on the IBS Diet board if you haven't already, as this is the Fitness board and you might not get many responses on here. 
I have a few questions for you that come to mind after reading your post:
1 - What tests have you had done? You want to make sure that you have ruled out many other conditions that mimick IBS and, you may already know this, but many of those would definitely not be made better by days upon days of eating white bread. Is it possible that wheat/gluten is a problem for you? Have you been tested for celiac or tried removing all wheat products from your diet? If you have an intolerance to wheat, it is common to get very bad D and have it go untreated because you don't know that's what is triggering your stomach reactions. Quote:
I've changed my life completely.
I tried eating only bread and drink only water and the Fiber all day...I woke up with diarrhea. Every day this week I have felt awful, and have had bowl issues, and this is the week that I gave up all of the irritants from the book. I'm trying to live off of white rice and bread, I can't stomach white rice, so I will put soy sauce on it, which while its still gross, I can atleast eat some of it. I wrote down a list of everything the book said was okay to eat, and I ate them...Now I'm worse off then I was before.
Aside for eliminating other physiological problems, there are other things that could be problematic here. Even if you are able to tolerate white bread, etc if I were to just start taking doses of fiber every day and only eating bread and that's it - I would be sick as a dog too. Are you adding the fiber into your daily routine really, really slowly? If I don't do it bit by bit, I get a really bad reaction. I have a big thing coming up, a fantasy faire in which I have to camp there. And for some reason, the more I try to to better for my body, the worse it gets. I've been taking the fiber every day, I'm pretty sure peppermint only makes things worse, theres absolutely nothing I can do. I'm stressed, I'm panicked, I feel sick, I'm doing absolutely horrible, every day.
I know where you are coming from and unfortunately us IBS sufferers seem to perpetuate a cycle of IBS stressing us out and stress making the IBS worse. I found that a while back I was totally fixated on my stomach and had never felt worse - even though I was fixated on making it better! Sometimes I think it's important to try and just take a deep breath and a step back and give yourself a break from the stress of worrying about the IBS. Yes, it is a really terrible thing to live with BUT obsessing about it definitely can make it worse, so what can you do to try and help yourself get through this?
1 - Stress Management. You said you are feeling stressed and panicked, which is totally understandable. Let's assume that if you can get that under control, you can calm your stomach down. What do you do to manage your stress? Are you exercising regularly? Have you considered some kind of hypnotherapy or breathing/meditation exercises? If it is severe, have you talked to your doctor about the possibility of prescription medications to combat these feelings?
In my opinion, IBS is something that you have to take in stride and come at from all angles. It's not as simple as "I have a sensitive stomach, so I can't have cheese" and that means making lifestyle adjustments to cope with all the triggers in your life that can set it off, and stress is a HUGE trigger and one of the hardest things to get a handle on.
I've tried everything. All the tips, hints, pills, directions...and all I see is my condition worsening. I read on this site that if you need to just get your body back into regularity, just eat bread for 3 days and drink water. The day I tried it, I woke up with diarrhea the next morning. This trip is coming up, and I'm terrified of being in a car. This trip has a 15 minute road with no stops. If anything happens in that amount of time...What could I do? Nothing. I read every day about people getting better and how they can deal with this issue, find a way to live with it. I can't. The more I try, the worse I get...Its ironic and twisted that tests and treatment for this problem requires me to do exactly what my problem is...Going long distances in a vehicle, away from all bathrooms.
First I get that cramping feeling in my stomach, I get a cold body sweat, and tons of pressure in the lower area.
I'm even considering that fiber is bad for me, because all I can remember being on it is still being worse. I don't know what to do, I'm afraid, I'm suffering, I can't leave my house (ever), and I'm completely and devastatingly sick of this life. What can I do?
Okay, I hear the stress in your post and I really feel for you. I know the anxiety that goes along with IBS is hard to deal with, and I really would advise you to take a serious look at coming up with some coping mechanisms and strategies to get the anxiety under control.
About your upcoming trip: My opinion is, if you are at a point where you feel like you are so unstable that the stress of the trip is making you feel sick daily, is it worth it? I'm not saying that the IBS should control your life, but sometimes you have to take a "time out" and give yourself a chance to feel better. If you spend all the days leading up to leaving stressing and worrying and getting sick, will the trip even be fun for you? I think you have to weigh the good vrs the bad for your longer term health.
If you do decide to go (which I'm not suggesting is the wrong choice!), try to really rationalize your anxious thoughts. If you think, "The road is too long without a stopping place", try reminding yourself all the other periods of 15 minutes that you go WITHOUT having to run for the bathroom. Remind yourself that Yes, you feel nervous right now and it's unpleasant BUT you have gotten through this before and you will get through it again.
In my opinion, you are in a really rough spot right now of being completely overwhelmed by the IBS and trying a million different things to make it better and only feeling worse. I think that you need to try and take a deep breath and then make a decision to take an organized and careful "plan of action" for what you will do, and to do the best you can at those things and remind yourself that sometimes you have to just "let it go" so you don't end wasting every second thinking through your stomach. My suggestions for your "action plan" are as follows:
- Get yourself to your doctor and make sure that every test to rule out IBD, celiac, bacteria overgrowth, etc have all been done and you aren't missing that huge puzzle peice. While you're there, talk to him/her about how you are feeling emotionally and get some feedback about medications, etc to help you cope with the anxiety.
- Get yourself a diary or notebook and start recording what you are eating, drinking and how your body reacts. Record both your stomach symptoms and your anxiety symptoms. If there are extra stresses or anything else, write them down. Look back once a week to see if you can pinpoint any triggers, emotional or nutritional. Note: A good exercise for anxiety is to write down the statements you make to yourself when you are feeling anxious ("I am too nervous to go in the car", etc) and then write yourself a response to talk yourself down from those anxious feelings. For example, I always remind myself that I have gotten through so many of these situations before that I will get through this one too.
- Food: If I were you, I would try elimiating wheat. If only eating white bread is making you sick, don't eat it. Maybe try something more natural - a baked potato or baked sweet potato, something easy to digest but that isn't wheat or filled with artificial junk. Sip on water throughout the day to make sure you stay hydrated and keep any fiber you do take in happy. If peppermint doesn't work for you, try fennel tea and again, just sip at it if large amounts of liquids ever cause you problems.
- Try one thing (other than medication, if you go that route) to actively combat your anxiety: Get a yoga DVD for relaxation, get guided imagery meditation CDs, try the IBS-Hypnotherapy CDs, learn some anxiety-effective breathing techniques, do at least 30 minutes of good (effort-requiring) cardio at least 3 times a week to change the brain chemicals that fuel those anxious thoughts.
- Talk to someone. It's okay to say: "I know you don't understand what I am going through, and that's okay. What I want you to know is I am having a hard time, I am doing my best and there are certain things I am not going to be able to do right now. It's okay with me that maybe you won't 'get' a lot of it, but please respect the choices that I am making to get healthier and happier".
- Fiber: If you are taking fiber, cut back to a really really minimal dose and see how you react. Then so so so gradually you can increase it if you're okay. If not, try another fiber. Or don't. Fiber isn't the cure for IBS for a lot of people.
- Try to remind yourself to take things one day, one step at a time. In your notebook/diary, try journalling the way you are feeling when you start to get overwhelmed and then just put it away. Be proud of yourself for being proactive in getting healthier.
I hope this helps, I may have rambled on a little but I really do feel for you.
I'll check back tomorrow or soon after to see how you are doing, or my eMail is in my profile.
Cheers, Steph 
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~~I'm not crazy, I'm just a little unwell-I know right now you can't tell~~Matchbox 20
IBS-D,pain.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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Thank you Stephie.
But you know, I've done all of that. Right now I'm just eating Chicken and Rice. Yesterday I was doing just fine, everything going good, had a little trip to walmart, watched Hot Fuzz at night. I also ate chicken and rice for dinner. And of course, the day I'm supposed to go to the faire, I have problems. And its a different kind of problem. I haven't gone to the bathroom one time today. But every single second I feel like I need to, and that any moment I'm going to seriously need to. I'm so afraid to get in that car. I have no choice, I have to go. I have medicine from the doctors, and I'm taking Immodium. I'm already loaded up on it, and I have to stay up all night to leave. If I go to sleep, I will wake up with some hefty problems. I still can't go to the bathroom, but I know that the moment I get into that car, I'm going to have to. You said that thing about remembering all the 15 minutes I've gone without having to go. Yes, I've done that so many times, expecially today. I mean if I get an attack really early in the trip, there will be no stops for me. Ugh! why couldn't I have just gone yesterday, or even earlier today? But no, everything seems to conspire to make my life worse and worse and worse.
And what is wrong with groceries?! I went to every health food section in that store, every single one of them, EVER SINGLE ONE! had wheat, milk, and or nuts.
So you know what I got? Grapes, and plain chicken...MMM MMM! I don't even think I can have grapes. I lost 50 pounds in one year.
last year at this exact same time, I weighed 220 pounds, now at this very moment, I weigh 163. That came from not eating, and eating like I have to now. by the way I stopped eating bread. I've been taking fiber every day now, the one from this website. I believe it helps but...who knows. It hurts so much every time I see someone just up and go and have fun, they can just go out and have a great time, they can leave at any moment, wake up and just go, they can do whatever they want at any time. Every...single...freaking thing Is hell for me. Any fun activity is just a terrible trap for me, full of suffering, anger, depression, fear. Hey you want to go to my lan party? NO, I can't go, because my life sucks. Anyone can tell me to just "not worry" but thats impossible, you can't just not worry, expecially when the reason your worrying is because you are actually having the problem right at the moment. There is no way around it.
I've had a colonoscpy, endoscopy, that ridiculously long 5 hour x-ray, blood tests, stool tests, THEY EVEN WANT ME TO REDO MY X-RAY BECAUSE THEY LOST MY RECORDS! I've gone in for countless little assessments, and pointless talks. Its stupid that I had to go through hell just for them to tell me what they want to do to me some other time.
I don't believe in Hypnotherapy, I don't believe yoga would do a thing, and I'm pretty sure I've made just about any adjustment to my life that I can. You know I'm atleast 2 years behind in High school because I had to drop out of regular high school to do this computer program...even then I still have to go in to a school building atleast once a week. Everyone my age has long graduated and I'm still in it...Any and all foods I love have wheat in it...I swear its like some sadistic freak is up their making sure I have the worst time possible. And have you ever ate a plain potato or plain white rice? I can't stomach it, its gross. It needs something in it. Seriously, after this whole faire thing is over, I don't even care, I'm eating a whole freaking ton of Chinese food...and I'll just live in my room and play harvest moon.
What I planned on doing to make this trip easier is after the 8 minute drive to the fork in the road that starts the 15 minute road leading to the 10 minute road to the gas station 5-10 minutes away from the faire grounds, is to take a movie (the grinch) and play it at the moment we go down that road so hopefully time will pass by very quickly. The reason I'm so afraid of this road is because of my brothers wedding. On my trip back, it was terrible, and it seemed like the longest road ever.
Hurmpf...I have no idea what to do.
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I have had many of the same problems you have had with my crohns. (It has many of the bathroom/stomach problems as IBS has.) It has been 10 years now. I know how scary and upseting it can be to be no where near a bathroom. I always feel better when I come with supplies. I ALWAYS bring a change of clothes with me and baby wipes in a plastic bag(to put everything in if it go soiled). (At one time in my life I was using adult undergarments because everything was so bad.) It is sad to think that something might happen, but if it does you can know that you have a clean change of cloths. You have taken CONTROL of the situation, not it of you.
My parent also didn't understand. Before I was diganosed with crohns I was very, very skinny form malabsortion of my food, the doctors told my parents that I was doing this to myself. I felt very alone. But I wasn't and your not either. I take lomitol a prescription anti-D. which helps, also symax duo tabs. They are an anti spasmatic for my bowels. There is also a symax you can dislove under your tongue for help with cramping right away. Maybe you should ask your G.I. about that.
There were times when I wanted to lay in bed and do nothing, and I did. Because of doing that I rested and started to feel better. Stress can be a terriable thing. Yoga is a wonderful way to strech and relax your body and mind. Or maybe something else that makes you happy. I enjoy bird watching, which I can do on the days I feel really bad(and laying in bed.) You are not alone. People understand. I have found that people understand more than I thought. Just yesterday I was at a resturant. As we got up to pay the bill my clip on my ielostomy came undone and the contents of my bag emptied all over my shorts, leg, shoes, and the carpet of the dining area. I ran off to the bathroom and took off my pants. I washed them under the sink. I took off my shoe and washed it. I cleaned up my leg and foot. I also cleaned up anything that fell onto the ground of the bathroom. I walked out of the bathroom and up to the waitress and told her what had happened and that I was truly sorry. (Not that any of that could have been helped.) She said that she didn't know what an ielostomy was and didn't understand. (An ielostomy is when you get part of your ielum-small intestine put through your stomach. Then your body empties its waste through there. You have to wear a bag on your stomach to catch the waste. You have no control when you go to the bathroom and it goes almost all the time.) I gave her a little more info. She looked very sorry and said it was ok. She put her arm around me. I left with my head held high. I got to the car and changed my clothes. I made it through ok. (I haven't always had an ielostomy. I had one for a year and a half in 1999-2000. It was taken down and I was hooked back up as everybody else is. Then in April of this year I had to have one put back in. I hope to have it removed soon.) Stay strong. You'll feel better soon.
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Crohns, lactose intolerant
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Re: Hang In There
#312596 - 08/05/07 11:39 AM
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Sand
Reged: 12/13/04
Posts: 4490
Loc: West Orange, NJ (IBS-D)
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From what you've said, my guess is that you're not eating enough and you're not eating often enough. I also think you're eliminating too many safe food options which makes it much harder to get enough to eat while following Heather's guidelines. If you'd like to pursue Heather's approach further, I'd be interested in knowing exactly what you ate, how much you ate, and when during the day you ate it while you were following her guidelines. People on the Board might be able to look at that and make suggestions that would help.
However, it sounds like you're already convinced that Heather's approach won't make any difference. In that case, my advice is:
- Make sure you don't have any of the conditions that can mimic IBS. I know you say you've had all kinds of tests done but you need to look at the list of conditions Heather says to rule out and make explicitly sure those conditions have been considered, tested for, and eliminated. As Stephie says, celiac is one - with an endoscopy your doctor should have examined your villi. Make sure he did and that they looked normal. As MelanieR says, Crohn's is another - make sure your doctors have explicitly considered that and ruled it out. And so on down the list of other conditions. (Actually you should do this even if you decide to continue following Heather's guidelines.)
- If you're not happy with your doctors, dig through this thread and see if there's a good GI doc near you. If not, you can try posting your location and see if anyone can make a recommendation in your area. It's best to do this in the Diet Board - it gets much more traffic than the Fitness Board. (Again you should do this even if you decide to continue following Heather's guidelines.)
- There are a couple of medications you can try. Talk to your doctor about an anti-depressant. Elavil, for example, can be helpful. I took it before I found this Website. I hated the side effects but it did shut down my diarrhea at least for a while. You can also ask about Lotronex. This is a big-time drug for IBS-D. It has some dangerous side effects but if you're desperate it may be the right choice for you. It can only be prescribed by GIs who are willing to abide by the FDA-established precautions.
I hope this helps.
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[Research tells us fourteen out of any ten individuals likes chocolate. - Sandra Boynton]
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