Anyone here with severe IBS?
#60874 - 04/13/04 05:24 PM
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till
Reged: 02/11/03
Posts: 712
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I was wondering if anywhere here has IBS because I haven't talked to anyone that has severe IBS like me. Mine is so severe I can't work so I have to be on disability. That's how bad it is. I have many severe symtoms. I am doing so many things to get stable but nothing helps alot. I'm drinking strong peppermint tea, eating beano, eating crystallized ginger, taking Dicetel, eating Altoids, working out, etc. Everything it says to do on this site. Everything I do only helps a little and I'm going crazy. It's so horrible and I have no idea what to do. It's so bad I'd rather be dead. I can hardly eat so I'm hardly getting any calories each day since I can only eat a very small amount of food only because my water retention and gas is so severe. So I'm not getting enough vitamins and minerals. I'm so bloated and full constantly. It's so painful. Anyone have any suggestions on what I can do? Is there anything left to do even? Thanks. I can really use the help. I'm miserable.
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Hang in there Angel!
There is a section on this website about what to eat when nothing else is working. Try eating those items exclusively for a few days to get under control.
I will pray for you,
Leigh
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hi angel,
i'm sorry you are having a hard time:( i used to have C, but now i have D. D is tougher for me to have bcos i could control C. its difficult for me to do things too bcos of the symptoms (i have more now with D). like the suggestion: try stablizing your body with the diet and "what to eat when you can't eat." have you tried emailing heather about this? can you see a GI doc or nutritionist? i know it can be really tough but just take it one moment or day at a time. try the list of what to eat, and bananas and mangoes and oatmeal help me. apple sauce and bagels are good too. have you gotten the book? i am trying to follow that. i have good hours and tough hours in the day. if you are having specifc symptoms and want advice for it: post the symptoms and maybe others can offer advice. keep us updated & hope you have a good day and feel better.
*lilybear
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Oh Angel...I'm so sorry to hear that you're feeling so bad!! I know what it feels like to have tried everything and nothing seems to work...
It sounds like you're on the right track though...it just may take a little patience and persistence before you see some improvement.
How long have you been on Dicetel?? I took it for about a month and it did nothing to help me. I've just started another antispasmodic called Modulon (and I'm crossing my fingers hoping that it'll work)...I've been on it for 2 days now and this morning my stomach was a little grumbly and after I took it...no more grumble...so maybe that's a good sign that it might be working!!
Hang in there....even though it seems impossible right now...this too shall pass....
Have you thought about getting the hypno tapes?? I hear they're really awesome and have helped lots of people.
Keep us posted on how you're doing... 
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Try adding fennel to your peppermint tea to help control the bloating. Also, don't work-out too hard - you don't want to stress your body out even more. Be gentle on yourself. Maybe switch to yoga? Remember that IBS meds are very personal - if something's not working for you, try something else. It takes a while to work out what works for YOUR body.
Good luck. We're here for you.
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Hi,
Welcome to the boards. I am so sorry that you are feeling so poorly! I know what it feels like to get into the mindset that you'd do anything to not have to deal with the pain of IBS anymore. It sounds like are doing all the right things, and finding this website might really help. I agree with the others, your body might be taking a while to stabalize if you have just started.
I just wanted to send you my sympathies, and wish you good luck. I hope you find some good information here and you get some relief.
--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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OK, here's my advice, for what it's worth.
first, in case you were wondering, yes, i had severe IBS. i was out of work a lot last year and my doctor said he had never seen anyone with such a severe case. note that i said i had severe IBS... this diet helped me stabilize and i have only minor minor little blips in the program now!
OK... you mentioned the things you're doing to get it under control, but i don't see where you say which soluble fiber supplement you're taking?? if you've been on one for a while and you're still miserable, switch it. as i've said a million times on the boards (some people are probably sick of hearing me say it!), i didn't get any relief 'til i tried the acacia. it's not terribly expensive and Heather ships it out fast... if you're as sick as you sound, you've got nothing to lose!
second tip: until you're stable, you need to stick to what to eat when you can't eat anything. i was on it for a while... i would try to add other foods in, have a backslide, go back to the what to eat's, repeat....
tip #3: try hypnosis.
tip #4: try the yoga poses that help alleviate the symptoms you're experiencing.
tip #5: see if you can get your hands on some loose fennel. take about 1 TBSP and put it in a tea strainer. poor boiling water over it. swirl in some honey or some stevia or toss in some cardamom if you have any. see if that helps the bloating. i think it will. if you like it, order some, bulk, from Heather.
it wasn't 'til i integrated all of these suggestions that i got relief. and now i consider myself an IBS survivor! like alcoholics in recovery believe they will always be alcoholics 'til they die, i believe i will always be susceptible to IBS, but by following my rules (Heather's guidelines), i have gone into recovery.
good luck!
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congratulations jen that you have gone into recovery!! and thanks for keeping on posting your experiences and advice, it really helps us newbies. with the diet thing, i've just started. i had a few good days with the "what to eat..." and then the symptoms came back. so i just need to repeat everything until i find a natural groove? i hope to become a survivor one day too! you said you had a doctor visit the other day that you brought lots of info. to-- how'd it go? hope all is well:)
*lilybear
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Hi Angel, I'm so sorry to hear that you are having such a rough time. I am pretty new to these boards and like you are having quite a difficult time getting my symptoms under control and am completely unable to go to work currently. I went crazy from being so tired and feeling sick because I tried to eat as little food as possible for a while because it seemed the best idea. It wasn't until I started eating the proper foods(ok so I'm still trying to eat more...) in small amounts frequently. Me and french bread arelikethis now
I'm learning more and more what everyone has already said, fiber supplements are key. I bought the fennel tea and it really is helpful with bloating. The hypno cds seem to be great. I just started two days ago and found myself asleep half way through it last night!!! My entire body is usually one big stress ball now which makes my ibs so much worse. That was big for me to find something that gave me a release like that. I hope you find a solution soon.
-Megs
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I drink lots of fennel tea and I am listening to the hyp. tapes for the second time now. I do my best to not get stressed but it's really hard since most things don't work out for me.
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Hi
I am actually not new to the boards or IBS. I have had IBS since 17 and I'm 21. I have been on this board since um I think 2002.
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I do yoga, pilates, t'ai chi. I drink lots of fennel and peppermint tea. I take Dicetel and it helps but not a lot. There is no other medicine for me.
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I have the hyp. tapes and I'm listening to it for the second time. I tried Modulon but it made my severe fatique even worse and so I had to stop. I could barely keep my eyes opened. I've been taking Dicetel since I was 19 and I'm 21 now. It helped the first day I took it which I'm so grateful since that day I have a severe attack and just recently found out I had IBS. That was when I didn't know anything about IBS so I'm glad Dicetel worked since the attack was so severe I was screaming it hurt so bad. Just like someone was tearing out my insides. I'm surprised I didn't pass out. I thought I was going to die. I actually got IBS when I was 17 but the stupid docs I went to didn't know anything so I didn't find out sooner. They were so rude and cruel. It's sickening.
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Angel,
I hate to hear that you are feeling so bad. I wish that I could make you feel better.
Daisy
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Daisy
"Sometimes you are the Windshield, sometimes you are the bug".
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I noticed you said you're taking Dicetel and that it's not working too well but there is no other medication for you.
Have you tried Modulon or Buscopan?? Those are both antispasmodics like Dicetel (they just contain different components) and they are both available in Canada.
I tried Dicetel and it didn't work for me at all. I just started taking Modulon a couple of days ago and it seems like it may be working so far...I haven't really had too much stomach pain so far (keep your fingers crossed for me).
There are lots of medications out there that you can try so don't get discouraged and give up!! 
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lilybear
#61351 - 04/15/04 07:25 AM
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jenX
Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA
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well, i'm glad i can be of some encouragement! i still am sooo careful about what i eat, 'cause i'm not going back to all that D! no way, no how! 
as for my doctor's appt, it was ok... long story short: i got a referral to a rhumatologist so they can check me for fibromyalgia, and the doc gave me some meds to help me get the deep sleep i haven't been getting. that seems to be helping! whew!
as for the diet, when you go off the "What to Eat..." stuff and back to regular food, make sure you're adding only safe foods and only a little at a time 'til you are sure you can handle it. keep following the rules (low fat, no fried  , small amounts, etc...). are you on a fiber supplement? i swear it helps! i felt like such an old lady "takin' my fiber" but it helps so now i don't care. i'll tell the whole world: YES, I TAKE FIBER LIKE AN OLD LADY, SO WHAT!?
another hint, one that my friend Bev always suggests, is keeping a food diary. i didn't do that, but i bet it would have helped me figure stuff out faster. if you notice symptoms after certain foods or any kind of pattern (remember, you may react today to food you ate yesterday!), then you know what to watch/eliminate. for example, i know i used to get D after eating too much. that was instant. but i also got a lot of D from not sleeping well the night before (that would be later in the day after, say, a safe snack or something... it wasn't the snack, it was the crappy night's sleep!).
good luck! let me know how you're doing!
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I took Modulon b4 but had to stop it made my severe fatique even worse. I never heard of Buscopan but if it has any side effects I will have to pass on it since I'm way to sick and I don't want to get sicker that's for sure. I'll look up Buscopan on the net and check for side effects. Thanks for telling me. I appreciate it. I'll keep my fingers crossed for u!
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HI
I have both of Heather's books and I'm following the diet everyday and it helps but my IBS is still so severe. I'm doing everything I can to get it stable but it's so hard.
I wish bagels were sold here that are dairy free but none are. The only bread I can get here is pitas. There's no safe sourdough, tortillias, etc. It's crazy. There are so many things here that I need but aren't sold here. It's like living in the middle of no where.
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Thank you. I wish I was feeling better too but that's not going to happen any time soon sadly.
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Quote:
second tip: until you're stable, you need to stick to what to eat when you can't eat anything. i was on it for a while... i would try to add other foods in, have a backslide, go back to the what to eat's, repeat....
I'm wondering how long you were on this most bland diet before you were able to add back in other foods without backsliding. Because in Heather's directions about this she says to be on it a few days to stabilize. I've been on it for 5 days now. Yesterday I had a fruit smoothie and at dinner added in some cooked carrot and small amount of white fish into my rice for dinner. Last night I had meatless spaghetti and did okay. Since being on the diet I haven't been attack-free but my attacks have been way less severe and have been shorter in duration. My biggest problem has been a big increase in gas and bloating. I didn't have any gas/bloating issues before increasing my fibercon and starting this diet. But I had major attacks every other day. Now the attacks are improving....like i said less painful, but the gas is almost as painful.
Anyway, being on this for 5 days and handling the carrots, smoothie, etc okay, I thought I'd have a tuna sandwich for lunch. I did put in a tiny bit of mayo. Within 1 1/2 hours after eating I was hurting bad! Major attack. On the heating pad, then vomiting. Don't know if it was the tuna or the mayo or both.
Anyway, my point is now I am scared to eat anything! But I feel like eating nothing but soluble fiber is what is causing the gas pains/bloating. I don't know what to do!!
How long did you do this bland diet? I know everybody is different. I think I"m going to try Zelnorm. I wanted to try to do it without meds because I'm breastfeeding my son and don't want to wean him. But it is awfully hard to take care of 3 small children when I"m having attacks every other day.
Anyway, thanks for listening. I needed to vent. I'm so frustrated. I've been IBS free for the most part for 12 years and then all of a sudden it is back with a vengeance. It doesn't make sense!!! I hate this!
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hi angel....MY NAME IS STACEY...I LIVE IN HOLLYWOOD FLORIDA...I HAVE TERRIBLE IBS ,I HAVE TO SAY I HAVENT HAD A BOUGHT UNTIL RECENTLY THE LAST ONE WAS IN 99...THIS TIME ITS BAD LIKE LAST TIME....I DONT KNOW HOW IT WENT AWAY LAST TIME ,BUT I FELT JUST LIKE U DO KNOW,I WANTED TO DIE TO...I PRAYED ALOT AND WENT TO CHURCH,I DONT KNOW I FOUND SOME KIND OF COMFORT THERE AND EVENTUALLY GOD SAW FIT FOR ME TO GET WELL...I WAS ACTUALLY LOSSING IT...YOU WILL MAKE IT THROUGH THE SAME WAY I WILL TO THIS TIME...JUST TRY TO EAT AS BLAD AS POSSIBLE THATS WHAT I HAVE TO DO AT FIRST..IF U WANT TO CHAT PLEASE FEEL FREE TO E-MAIL ME ...I COULD USE A FRIEND GOING THROUGH THE SAME THING AS ME.
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Hi, Shelli...
I ended up on the What to Eat... for quite a while... not the few short days that Heather "promised."  I think that's because I was not taking enough of the fiber, or the right kind of fiber... not sure. I kept doing what you're doing--- take the fiber, stay on What to Eat... for a few days, add things, have an attack, retrest to What to Eat... REPEAT.
When I gave up on fiber all together, I got much worse, but eventually decided to give the Acacia a try. Glad I did... so much better (for me, but everyone's different. try various fibers and doses 'til you find the right fit.) When I finally got the Acacia onboard and was on it for about 3 days, I was able to start adding many more things into my diet quite quickly (all "safe" foods, of course!)
As for the Fibercon itself-- how much are you taking? How quickly did you add it? I've found that I need to add it QUITE slowly. I took one tsp a day for over a week, then added another tsp for a few weeks, then added a third, etc... Sometimes people say they aren't adding enough fiber, and when they get to a higher does everything clicks into place! We're all different. See if you can back it down or jack it up.... experiment and see what works for you.
I use fennel tea to get through the bloaties when I'm adjusting doses. (Others use peppermint tea) Would that help you???
It could have been the mayo that triggered the attack, but keep in mind that attacks can sometimes be a cummulative thing... if you're not sleeping enough (hullo? new baby!?) and you added in the smoothie (without soluble fiber? you didn't say...) and then had some mayo, the mayo may have been the straw that broke the camel's back!
Another thought on the smoothies... did you add something soy in it? milk? yogurt? Because if you're not used to soy, or have drastically upped the amount you're eating, that can cause some bloating and pain! Remember, soy is a bean... if you're not used to it, it can give you that great ole bean result: gas.  I did that when i first started the diet and had to quit the soy for a week or so and then gradually add it back in. Now I can eat tons of soy with no problemo, senora.
To ensure that my smoothies are tolerable, I personally use bananas as a base and toss in my acacia. It's a nice balance. SOME people can't tolerate bananas, tho! How do you feel if you just have a banana??
Last thought: are you on any new meds or supplements now that you're breastfeeding? Have you changed anything in that regards in the time that the bloating surfaced? Just a thought...
Let me know how you're doing. And when do we get to see a pic of the baby (and other kids!)!?!?!?
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Thanks, JenX
#62347 - 04/18/04 04:14 PM
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Shelli
Reged: 04/13/04
Posts: 20
Loc: Glendale, Arizona
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I was taking fibercon before I started Heather's diet. I was taking only 2 daily. So I upped it to 2 twice daily. THat still isn't very much. So I think the gas increase/bloating has been from a combination of increase in Fibercon, soy, and eating all these starchy foods which actually cause gas from what I've read. I've eaten soy before but not as much.
Yes, having a new baby means you're sleep-deprived. The odd thing is that when my IBS recurred I was starting to get more sleep. You'd think it would have recurred when I was waking up every 2 hours. But I was fine then. It started when I was getting more sleep. I only get woke up once a night now!
No new meds or anything. I don't have any obvious souces of stress in my life. I was more stressed the first two months after my son was born than I am now. Maybe it takes time for the IBS to recur after being stressed out...maybe it isn't immediate.
I'm waiting for my Acacia to arrive. Hopefully it works well for me. If not, I"m going to go back to psyllium husk. I know Heather says it's her last choice for fiber supplement. But it it was I took when I first was diagnosed 14 years ago and finally started getting better. I was IBS free for 12 years until recently.
Yep, I put a whole banana in my smoothie. I seemed to handle it just fine. Now i'm scared to death to eat. All I've had today was 1/2 bagel for breakfast and plain rice for lunch and peppermint tea. So exciting I can't hardly stand it. It's especially hard since I have to prepare food for my kids and it looks so good and I can't have it!
I'm going to try Zelnorm. Have you used it or any other prescription drug?
Again, thanks for everything
Oh, you probably won't be seeing a picture of my kids until i'm feeling much better. BUt thanks for asking!
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no problem!
#62351 - 04/18/04 04:36 PM
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jenX
Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA
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i haven't tried any prescription meds (aside from my hycosamine) because i am IBS-A. you're not supposed to use Zelnorm if you get diarrhea...
which starchy foods allegedly cause gas??? i haven't heard that. i know i don't eat bread, so maybe that's why i'm not experiencing a problem...? i do eat all of the rest of the things on this diet, though--- well, anything i that doesn't have wheat! i eat rice, white potatoes, sweet potatoes, rice.... um, what else? there's rice! (i don't eat oatmeal, tho, 'cause that's always made me bloaty! that happens to some people with gluten "issues.")
you know, what you said about the IBS symptoms flaring up after you started to get some sleep... that makes some weird sense to me. i know sometimes my body does whatever it can to get me through a stressful time, then collapses once it's all over... wonder if that's what you were experiencing?
my belief is that you know your body better than anyone. if you don't feel the starches are working for you, than maybe it's not a good idea for your body. same goes with the psyllium. i've noticed that there are no 100% scenarios in life. there are always exceptions to the rule!
hopefully the acacia will help. grab some tea and try to ride it out! and add it sloooooowly at first. hopefully you'll noticed some insta-results! if not, though, hopefully you can get through a few rocky days and then notice an improvement....
hang in there! and keep me updated, will you? good luck!
(and maybe dial back the soy a while, see if that helps?)
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Hi
I eat very carefully and I pray alot too. I'm sorry your feeling really sick.I'll e-mail you since I need a friend too that knows what I'm going through since I sure don't get a lot of support from people here in Wpg. Most people here act like it's no problem having severe IBS!!
Take care.
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I forgot 2 mention you can e-mail me anytime too.
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I eat the list of foods that are on that list but not all since not all of of those foods are sold here. It's hard to find alot of foods here.
Thanks for praying. I appreciate it. God Bless.
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Hi Angel,
I hope you're feeling better. I know how difficult it is when the pain comes. When I get attacks I just pray that it'll be over soon.
What has helped me is that I've been taking Heather's peppermint caps. They help me more than when I was drinking the peppermint tea. Now I take the caps everyday.
Also, you may want to try the yoga poses that are on the yoga board. They really helped when I was bloating and was in pain.
Hope this helps you! Keep us updated!
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to JenX
#62596 - 04/19/04 11:46 AM
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Shelli
Reged: 04/13/04
Posts: 20
Loc: Glendale, Arizona
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Here's a quote from some medical magazine about soluble fiber I found:
"Soluble fiber is readily fermented; beneficial bacteria in the colon break down carbohydrates. A byproduct is gas that can stimulate colonic muscles and help soften stool. However, in some people this can cause discomfort. Adding fiber gradually and slowly over time may eliminate the discomfort."
So I think that my increase in gas is due to taking soluber fiber supplements AND eating nothing but soluble fiber foods. It's been a bit better yesterday and today...still bloated and gassy but not so painful.
Anyway, thanks for all your input and help!
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thanks for sharing that with me...
yeah, i can see why, if one was sensitive to it like this says, adding it dietwise and supplementwise would be a compounded pain/gas event!
hang in there, it'll get better, i promise!
*j
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Hi
My IBS is so severe it's like having a severe attack everyday. I do the poses that are on this site. Only the ones I can though. I take Altoids which is exactly like the peppermint caps but way way cheaper and you don't have to swallow them. I also pray everyday.
Thanks. God Bless.
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I haven't been to a nutritionist since I'm housebound and I already know what to eat from Heather's books. I can't find a GI doc since most docs here are rude and cruel. I've been to so many. Even if I do find one, he or she wouldn't be able to help much since I'm doing all the right things.
Thanks.
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Angel how does the dicetel work exactly? I know you've tried lots of meds...does that include Zelnorm? I do know how expensive it is but just wondering if you have tried it. Also, have you tried antidepressants?
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