[hiimsuzzie]

I've had D predominant IBS for the past three years, and it's been getting worse. I was finally diagnosed a year ago. I just found this website yesterday - it's good to know I'm not alone.My doctor put me on nortriptline 25mg per day, which really worked and changed my life. It was possible to eat a small bowl of oatmeal in the morning without being doubled over with painful cramps for a half hour! Then I started having side effects - chest pain, rapid heart rate, nausea, and ringing in the ears, so she told me to stop taking it. We're trying dicylomine now, but it doesn't seem to do anything for me. I'm taking some immodium with it - it can plug me up, but I still get extremely bloated and crampy. A very small amount of food or water will cause cramping and D, so I'm hungry a lot but can't eat more than a bite or a sip, and I'm losing weight (not good since I'm already quite thin). I snack every hour durning the day, and I wake up twice at night to snack as well, which seems to help a little (if I go without eating anything for more than three hours during the day, the next thing I eat will trigger a painful marathon 3 hour IBS bout).I wish I could go back to the nortriptyline. Has anyone else had these side effects? Would taking it with a meal instead of right before bed reduce the side effects?Also, does anyone else get really hot during an IBS bout and then get cold and shaky afterward?Has anyone tried alternative stuff? I've never been a big believer, but I'm willing to try anthing that might work. I've started doing yoga, but it hasn't seemed to help.And another question for those of you who have had IBS for a long time - how do you deal with it? The pain is the worst part - I keep ibuprofen by the toilet so I can take a bunch whenever I start to have a bad attack, but the pain can still be horrible. My doctor is so positive and confident every time I talk to her, but I'm really starting to wonder if I'll ever find a way to "manage" IBS and live my life. So does everyone pretty much try one medication after another until hopefully one works? The whole IBS thing is really difficult for me and my fiance, and any suggestions would be appreciated.Thanks!

 

[RMCCLOWRY]

SuzieQ--I'm sure everyone on this board has been on trials of all sorts of medications--from antispasmodic drugs (Levsin, lomotil, immodium, librax, etc.) to antidepressants that sometimes help the IBS condition, to anxiety meds (like Xanax, Valium), to some of the new drugs, like Lotronex.I went thru all sorts of different meds till I found some that helped, without causing intolerable side effects.A big part is controlling your diet so you don't eat things that trigger a flare-up (which normally are your favorite foods, rich in fat and grease.) When I go to a restaurant, I have trouble finding things that I can eat. I often have to ask questions about how the food is cooked, such as, "Is the chicken broiled or fried on a grill", or "are there any onions in that soup or salad".Hopefully, assuming you have a doctor that will work with your and try various medicines, you'll find a reduction in the symptoms. In spite of my severe symptoms, I am able to work full-time. I do have to restrict social activities and travel.But the current anti-D medicine I now use seems to control diarrhea very quickly and lasts at least 12 hours, as long as I don't eat the wrong foods. That at least allows me to go out of the house and drive to work with confidence that I won't have a D-attack on the way to work, or at work.It's a long struggle to find things that help. Just be persistent with your doctor, and don't settle for answers like "you'll just have to learn to live with this". My GI doctor, who's well over 65, said I had the worst case of IBS he'd ever seen. But he was determined to get me relief, and finally did. In my case, the medications involve very low doses of narcotic medications, as nothing else was working. Some people can't tolerate narcotic medications. For me, they really help.Rich

 

[nmwinter]

SuzieQSorry to hear the medication that helped so much causes too many problems. Have you looked into calcium for your IBS D? Until I came to this board, I'd never heard anoything about it, but a lot of people have success using it. Added bonus is that as a woman you probably need it anyway. It helepd me a great deal although I had to add magnesium in since it stopped me up too much (I alternate between D and C). The other alternative approach I use is hypnotherapy. Again, many people have found this works well.You can go to the CBT and Hypno forum and look for information and success stories. There are a number of people who have IBS D and tried many medications and other routes but finally found success with this route. I admit to being a bit skeptical at first myself (I'm an engineer so very analytical), but found it's a great help to me.take carenancy

 

[overitnow]

Hi Suz,I've had great success with a flavonoid supplement. Have not had a problem with my D/GERD for 4-5 years. Calcium has helped a number of others. There's non-medical stuff out there if you want to give them a try.Mark

 

[silvergirl]

hi!I'm new to all this, and haven't started any medications yet, (just starting testing) but I wanted to say that I also get very hot during an "episode". I'll feel really sick, like it'll be D or vomit...once it passes, I will get a bit of a chill, then it's back to "normal" until the next attack. You're not alone!!~a

 

[wlwoodma]

SuzieQ -My doctor put me on 10 mg nortriptiline. It has stopped the D but I was still in a lot of pain. I thought about going off of it, since the D isn't as bad as the pain. Anyway I started trying stuff myself and here are the "alternative" things that have sort of cured me; metamucil (takes at least a week of taking it until it helps), eating for IBS diet (heather van vorous), and possibly a tea called sleeptime extra with valerin. I didn't start using the tea for the IBS, mostly because I had a lot of anxiety and couldn't sleep at night but I noticed that since I started drinking it (just one cup nightly) I am pretty much symptom free. Also, ibuprofen is really hard on the gut, if you can find something else when you are in bad pain it would be safer. I usually take enteric coated peppermint oil, they are strong but they really work and the only side affect is I smell like peppermint for the next 48 hours. The brand I use is called pepogest.good luckSG

 

[Ganas]

Try Ensure plus to keep weight up

 

[hiimsuzzie]

Wow - thanks for all the great tips! I'll definitely look into the calcium and peppermint if I get out of the house this weekend - I don't think my doctor knows about them. And it's good to know I'm not alone on the hot/chills thing! Thanks a bunch!!!

 

[maxson]

Suzie, Hi, Like you I recently discovered I haveIBS. After numerous tests and hospital visits. Ihave been house-bound for almost two months now.I am also thin and now lost over 16 pounds. Iam afraid to eat anything because everything givesme D. My doctor has me on Hyoscyamine, which Ionly take once a day and that seems to help. Ialso get hot/chills with it. I thought I was theonly one! I have terrible lower back pain alongwith the ab. pain. I take prescription pain pillswhen it's really bad- Darvicet, but you can getaddicted to it. Peppermint tea, hot or iced is agood thing to drink with your meals, it helps.Also Alprazolam, which is a mild tranq. helpsthe symptoms. I am looking into more naturalmethods to avoid all the pill popping. I willlet you know what I have any luck with andyou do the same ok? Good luck, and remember, youare not alone!

 

[hiimsuzzie]

Yeah, I get the lower back pain too... not fun. I bought Heather Van Vorous' books - the first year and the foods ones. Maybe a diet change will help me out. Sometimes I seem to have "trigger" foods, other times I just get sick no matter what I eat (water, oatmeal, etc.). I'll let you know how it works out!

 

[Apricot]

I'm a 53 year old elementary school teacher who has suffered for a year now with D, cramps, and gas. After many tests the only conclusion has been IBS. Dicyclomine has been prescribed but I do not notice any improvement. Being trapped in a classroom with this condition has been overwhelming. It's good to see there are many possible treatments but intimidating to envision the long road of experimentation ahead of me.

 

[lflower]

This is an old post, but I thought it was so interesting I saved to to my documents. I get all but about 6. Most often I get the dizzyness and the shortness of breath with an attack. In the new UNC digest newletter they list 26 non gi complaints more common in IBS then normals.Part of this may have to do with physcial stress responces on the body.headachedizzinessheart palpitationsback painshortness of breathmuscle achefrequent urinatingdifficulty in urinatingsensitivity to heat and coldconstant tirednessPain during intercourse -sex-trembling handssleep difficutiesbad breath-unpleasant taste in mouthgrinding your teethjaw painflushing of face and neckdry mouthweek or wobbly legsscratchy throattightness or pressure in chestlow sex drivepoor appetiteeye painstiff muscleseye twitchingI have all these but six of them. LoLRemember neurotransmitters are a part of IBS that important.Also when the body is physcially stressed not just mental stress.emotional, physical, social