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I'm sorry you're suffering so much! In the past ten years, I've had two times where I was in so much pain and discomfort, becoming obsessed with what I ate and afraid to leave the house, that I thought, "Is this my life from now on?" I worried what people thought of me, I cried about what I was missing out on as a young woman. But there's hope! I know you've heard it before, but it does take time and experimenting with different foods and meds. Everyday you just have to grasp onto something good, even if it seems insignificant.
One thing you might ask your doctor is if you could have a parasite; sometimes they get missed in a stool sample or are in your small intestine (I don't think a colonoscopy would detect this then), like giardia, and they could be causing you to lose weight, the nausea, etc. You might have another stool sample done or talk to your doctor about whether there was a possibility you were exposed.
Something that might encourage your body to "normalize" is to eat at the same time everyday. For a year, I experimented with food and meds. The meds I was on, antidepressant + antispasmodic + antidiarrheal, just seemed to make me feel worse. I'd go from D to seriously C for a couple of weeks and then back to horrible, burning D. I decided to quit the antidepressant, since I wasn't feeling better anyway, and started using the antispasmodic and antidiarrheal only as needed. This was a personal choice, you should always talk to your doctor before changing or stopping meds.
But it wasn't until I started eating on a schedule, following the IBS diet, that good changes started happening. I ate breakfast, lunch, and dinner and snacks around the same time everyday. I didn't eat after 7 pm or have drinks with meals. I also took a fiber supplement (about twice a day between meals) and peppermint or chamomile tea with a couple of drops of anise oil after meals (for gas or colic and cramps). What this did was regulate my bm's, so even though they were still painful and loose, at least I knew when they were coming. I also made sure to get plenty of sleep or at least be in bed early, relaxing and reading or watching TV. And light yoga or walking, as the others mentioned, is great for stress relief. I think just getting outside makes you feel a little better. After a while (about three months), I stopped having the diarrhea and when I did it was when I strayed from the schedule/diet or due to an increase in stress.
I still have times when I'm not doing so well. I was really sick this past fall and, lately, I've been dealing with anxiety, which is why I finally joined this board after reading it for months. It's good to have people you can talk to, who understand, and who aren't grossed out by stool talk. 
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You sound as frustrated and controlled by your symptoms as I feel. Yes, I cannot remember a day in years when I wasn't focused on some sort of GI symptom: gas, bloat, cramps, pain, constipation, or even diarrhea. My life is ruled and dictated by my GI pain and symptoms. I do not go out because I'm usually at home with a heating pad on my tummy in my PJ's. I feel like my life is going by and I just want to cry, and often do, because I have no life! My friends have disappeared. I can't sit through a movie, I can't go to restaurant, or family barbecues and parties because I never know how my bowels are going to behave. Or, because I just feel so crappy I don't feel like being out and hurting. I hate this life.
Like you, I feel like I am doing everything I should be doing to feel better. I followed the diet, never ever cheating, I took the SFS, yet no relief at all from the pain and the constipation seems worse.
I also get worse as the day goes on. I try to eat lunch as late as possible at work, because I know the symptoms will be getting worse and this way, the time before I go home is shorter. I tried eating a little throughout the day, but I am not allowed to snack at my desk, so I can only have breakfast, lunch, snack, and dinner.
The bloating, gas, pain are outrageous. I would suggest stopping the peppermint tea and capsules for a few days or a week, as I find that increases my pain! Some people can't handle mints. I don't know if the fennel is doing anything for me, but I drink it just in case it is. Heather says that it "untraps" the gas. So while you may be passing more gas while drinking it, at least the gas isn't trapped causing more pain. Like I said, I still don't know if it helps me, but I figure it isn't hurting.
Unfortunately, this may not stop and we may have to live like this forever. I know you may not like hearing that, but for some of us, I think maybe we never can be as stable as others. We are doing the same thing as them, so it might be our bodies are going to just be like this. It depresses the heck out of me. It scares me and oftem makes me cry.
I'm sure I haven't lifted your spirits any. I am just being honest about my own thoughts on my situation. You may find that another SFS works for you better than the citrucel. Have you tried any others? A lot of people have found that they must keeping trying different SFS until they find one their body likes. Some find that not taking an SFS is best for them. Some, like me, have tried 6 different SFS and find no relief yet from any of them. I think the only one I haven't tried is acacia and metamucil and Konysol. (the latter two are known to increase bloat and gas, so that scares me off of them). But others have reported that psyllium in those two products is the only thing that pushes the BM out.
Also, the Levsin may be constipating you most likely, especially if you are taking a lot, because it slows down the gut. Many IBS-C folks steer clear of anti-spasmodics because of that reason despite having pain.
Have you thought about an anti-depressant? You sound very depressed, and who wouldn't be. There are a lot of us on AD's! Just make sure you don't get one that increases the C!
GL and keep posting. I'm right here with you!
Oh, I've tried zelnorm but didn't get much relief so I stopped that. But it might be an option for you?
Also, many people take 2 to 4 stool softeners every day (colace, for example) and say it helps keep the stool soft and easier to go. My doc says it won't help produce a BM, but it will keep things soft so the BM passes more smoothly.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hi Adriane,
I used to be like you then after reading so much on IBS I learned that one should not drink water immediately after a meal. Wait for an hour then drink water, avoid soft drinks, eat slowly and keep away from chillies for at least a month. Try eating little at a time and drink plenty of water. Have your fruit before your meals. I bought a whol lot of fennel seeds roasted this and I chew this many times a day. Hope you feel better after this.
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I know how you feel too. I've suffered on and off my whole life from stomach cramps, but in the last couple of years it has become pretty much a constant. I'm not a very ladylike girl, but I still feel like it's one thing for my dad to be farty, and another for me to- it's so embarrassing and vile 
I've been trying what felt like everything, and not managing to get stablized. But last week I ate nothing but rice with banana, and a little unsweetened soy milk, in tiny portions eating every two hours and my tummy completely settled down. I cannot describe how wonderful it was to not be bloated up and uncomfortable. Seriously, seriously wonderful.
I have also started making sure to be active after every meal, not drinking at all during meals and chewing everything very thoroughly- I reckon all these things help (apologise if you're already doing them). Can you try splitting your sandwich in half and eating half of it at lunch and half later? I am going to do that myself to see if it helps.
Of course today I am back to having hideous cramps, but they are period cramps, not IBS ones, so hopefully this will pass. 
I know the feeling of utter despair and not being able to go on because of this.
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"This is truly the age of bacteria: as it was in the beginning, is now and ever shall be."
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Can I ask which AD you stopped? And which SFS are you currently taking that is helping you? And how much?
It sounds like you are primarily a D?
Thanks for your input.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Heather says to eat fruit at the end of a meal. That this is the safest way to incorporate fruit into diets.
You have better luck eating them alone, without a SF to help cusion the tummy?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I'm confused. I know Heather recommends eating fruit at the end of a meal that has SF as a base.
How can you eat it alone? And does the eating no starch with protein really help you? Again, I didn't think Heather's diet was about food combining. In her book her sample menus at the end of Eating for IBS always combine a starch and a protein together, along with a veggie or a fruit.
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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Hello! Yes, I'm primarily D and it usually hits me when I'm really anxious or stressed. I just start Buspar (anti-anxiety) on Sunday, but it takes two weeks to work. Unfortunately, yesterday I had a crazy anxiety attack that lasted 6 hours, my doc told me to go to ER. Got some Lorazapam until the Buspar starts kicking in. Sigh. Sorry for the digression...
When I took AD (9 years ago) my doctor at the university put me on:
1. desiprimine, very low dose, I think it was 25mg a day; later I switched to imiprimine
2. donnatal (before meals)
3. lomotil (as needed)
4. peptobismol for nausea
5. Tagamet for heartburn
6. 4 pills of ibuprofen every 4-6 hours during my period
But I was never told to change my diet! And as someone with IBS I shouldn't have been told to take so much ibuprofen! And you're not supposed to mix desipramine with donnatol: severe sedative effects. As a result, I remember very little from this time--I slept a lot and or I was on the toilet. So I became very constipated and bloated and only had a bm every two weeks which would end up being severe D. It was as though my colon had just become a big holding tank and wasn't doing it's job. I still get emotional thinking about this time-period. I got really depressed--I have no idea how I made it, other than just letting myself get angry, stubborn, and using the university research library to find more out about gastrointestinal disorders. (Oh, and my dr didn't want me to see a GI!)
Side effects from the desipramine and imipramine were bizarre: my jaw would lock whenever I yawned (how freaky is it to be unable of closing your mouth), when I had to urinate I couldn't (I'd have to sit on the toilet for half an hour waiting to pee even though I FELT THE NEED!), I would sleep for 16 hrs at a time (this might be because I took it in combo with Donnatol).
After 6-months of dealing with the side-effects of the meds, I just stopped taking the AD and donnatol (which never helped with the cramps anyway). I dumped all the pills into trash and switched from Lomotil to the much gentler Immodium. I started drinking peppermint tea with anise essence drops. I also went on the pill which helped with the D attacks I got before and during menstruation. I went on Metamucil (following dosage procedures on packaging), started to eat more well-rounded, fat-free, fiber-rich meals, and continued this throughout college. Over time my D attacks only ocurred every six months, during a particulary stressful period or after eating something I shouldn't (my weakness--Hershey's Milk Chocholate Almond Bar).
Currently, I'm managing the IBS with Heather's Diet (I wish I had know about this in college! And people like you to talk to--I had a friend who continously teased me about having a parasite) and Benefiber, which I like a lot better than Metamucil. No gas, no weird taste. I started slowly 1/4 tsp in the morning, then after a week or two, upped it to 1/4 tsp twice a day. This seems to be helping. Right now I have this debilitating anxiety, which I know is playing a role in why my digestive system seems to be acting up again.
Sorry to go on and on.  I have a tendency to talk to much, but I hope this helps. Please feel free to ask me any questions. 
Edited by Maria!Maria! (04/06/08 08:35 PM)
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Thanks
#155333 - 03/01/05 11:33 AM
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Augie
Reged: 10/27/04
Posts: 5807
Loc: Illinois
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I have also tried both those drugs and hated them both. I do take Donnatol at night only like once a month. I don't like anti-spasmodic side effects, but I like Donnatol at night. Plus, I am (BS-C, so these drugs made no sense for me as they make constipation worse.
I couldn't handle benefiber and I am thinking of stopping or replacing my citrucel.
Can I ask where you get your anise oil? Does it contain grain alcohol or is it pure anise?
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~ Beth
Constipation, pain prodominent,cramps, spasms and bloat!
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I just started the IBS diet about a week ago, but I have done a lot of reading about all sorts of intestinal problems through the years. I'm trying the IBS diet out of desperation, because I just can't go on with my symptoms the way things have been lately. But, if it doesn't help significantly in a reasonable amount of time, I will look for other answers. I believe this is Heather's advice on the site too.
In response to the posts of people who have done everything right on the diet, but aren't getting any better, you probably have IBS, but there may be another problem too. IBS is sometimes caused by other conditions, in fact. (For instance, candida overgrowth, severe dysbiosis, or SIBO.) SIBO is a condition where bacteria from the colon has migrated to the small intestine, where it's not supposed to be. It's often caused by carbs fermenting in the small intestine from slow motility. SIBO can cause IBS and always causes a lot of gas, as usually does candida overgrowth.
Unfortunately, the foods that are stressed on the IBS diet, are also the foods that feed candida, bacteria and parasites in the intestines.
I hesitated to post this, because it's not 100% pro IBS diet, but I really feel that, at a certain point, if the diet is not working, other options should be considered.
So far, for me, I suspect this diet is going to help, (it's early, but I think things are calming down), but if it doesn't, I will try some other things. Or, I may take natural antifungals and extra probiotics with the diet, because I've had candida overgrowth in the past, so it could be a possibility again. I just think there have to be answers, and if something isn't working, other things should be tried.
Carol
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