I've had IBS for several years (10+) and I have found nothing to help with the symptoms.
I went to the dr and was dx w/ it, but dr said their was no meds to help control it. I tried to get in on an experimental med but was turned down b'cause I wasn't bad enough (for them). :angryfire
My aunt takes immodium before she eats anything - but a) I don't want to have to do that, b) too much $, & c) I get sick sporadically.
Sometimes I won't have an attack for a couple of weeks and then wham I get sick 3-4 times in 1 week. Ex. I was sick from 5 am Sunday morning to 10 am Monday morning. Sometimes the pain is soooooo bad that I actually pass out. Still my dr says their is no medicine - only for constipation kind, which I don't have!!!
Does anybody have any ideas???
Also I can eat the same thing 15 times and only once get sick on it. As was the case last week. I love chicken and rice - but when I had it Saturday night it made me soooo sick, all I could do was lay in my bed and grit my teeth till the pain subsided.
Deb--a lot of good suggestions here you can seek out with your doctor or get another opinion. Are you going to a GI doctor? And for me, the Paxil works...might not for others but there are lots of avenues to check out. Although it hasn't bothered me (the way it used to with stomach pain, diarrhea, food literally going right thru me), a stressful situation may/may not set it on again...usually in a delayed reaction. Like after a stressful exam, I might have diarrhea 2 or so days later. When I was first diagnosed, I was told to increase bulk in the diet as well.
Good luck...let us know how you make out and what you decide to do. You're not alone, that's for sure.
I suffered from IBS in my last pg (still do but it was awful during pg). My NP prescribed Bentyl. It worked like a charm. I didn't notice any side effects. Sometimes I think the midlevels do better than the specialists! Highly recommend Bentyl. I wonder if IBS is connected with removal of gallbladder. I never had a problem with it before that. I had my gallbladder removed in 1999 and the IBS started with abandoning the vegetarian diet. But before I went veg I didn't have these problems.
Now I control it with diet.
No meat ever. I was a vegetarian for years (until 2000) and my weight gain, cholesterol problems and IBS started after I started eating meat again. I had a chicken nugget last week for the first time in months and had a flair up again almost immediately. There are lots of healthy subsitutes. I know use potabello mushrooms to make pasta sauce. Deglaze with some red wine and it is yummy.
Drink lots of water. Lay off the coffee (in your dreams but I pay for my coffee every morning. No way in :angryfire I am giving it up) and other caffeine beverages. Yeah right but moderation does help.
Avoid eating out. Everytime I eat out I get symptoms. Every once in a while I do eat out but try to keep it low fat.
Fatty foods is thine enemy.
No dairy. I am having a hard time with this one. I love cheese, cream sauces and creamy dishes. But I limit it as much as possible. I do better with goats cheeses. And I use soy milk for most things.
These are things that worked for me. I think alcoholic beverages affect some people but I don't seem to have a problem with them. I often cook with wine (good wine) as it enhances the flavor of many vegetarian dishes.
I too suffered and was dx with IBS my whole life until last year. My youngest son developed Type I diabetes and subsequently Celiac Disease. After looking at his symptoms and the genetic disposition of the illness, I had myself tested for Celiac...which came back positive. It was recently considered by the NIH as one of the most undiagnosed illnessess...Amercian docs aren't trained to look for it...Europe is...I have eaten gluten free now, along with my son, for nearly a year and never have "ibs" symptoms anymore after having serious symptoms for years and years. Further, i've lost 20 pounds and have never felt better in my whole life on all levels...so it is definitely something to consider. Initial testing is with specific blood tests and the gold standard is a biopsy of lower stomach/upper intestine to indeed show the damage. Note that celiac disease is an autoimmune disease so if you do have the disease and don't follow the diet, you will be doing much damage to your insides beyond the obvious outward symptoms. There is a condition of being gluten sensitive without having the autoimmune illness dx...and you still avoid gluten...your blood work may come back negative for celiac but following the gluten free diet will eliminate all symptoms. This was true for my friend who was very ill with Crohn's, which she had had since she was a teen...and eating gluten free has enabled her to go med free and lose a ton of weight and feel fantastic for the first time in her life. Needless to say, I am pretty opinionated on the topic but that is because I suffered for so long and was medicated to relieve symptoms...but never cured. Gluten free cured me for life...but I do have to stay gluten free 100% or else the autoantibodies will be triggered to do their damage to the villi once again. Hope this provides you with another avenue of thought. :)
to the op...i'm really surprised that your gi dr hasn't recommended you keep a food diary or undergo allergy testing. (i'm saying this based on the dairy comments that have floated around...i'm a huge yogurt advocate, but it legitamately bothers some people...but you should find out).
i have also been recently diagnosed with ibs as well...and like you, i have the non-constipating kind (to put it mildly). my dr has advised me that if my symptoms don't get better soon, or worsen, he's going to try domperidone (motillium) which is an gi motility modifier. what's worked for me so far is not eating huge meals 3x per day. i try to eat smaller meals more frequently (low fat, healthy, soy stuff, high protien)...between that and my weight training, i've lost about 10 lbs since feb. lots of fibre is good too, if you can't get enough in meals...they now have metamucil in capsule form (yayyyy!)
I too suffered and was dx with IBS my whole life until last year. My youngest son developed Type I diabetes and subsequently Celiac Disease. After looking at his symptoms and the genetic disposition of the illness, I had myself tested for Celiac...which came back positive. It was recently considered by the NIH as one of the most undiagnosed illnessess...Amercian docs aren't trained to look for it...Europe is...I have eaten gluten free now, along with my son, for nearly a year and never have "ibs" symptoms anymore after having serious symptoms for years and years. Further, i've lost 20 pounds and have never felt better in my whole life on all levels...so it is definitely something to consider. Initial testing is with specific blood tests and the gold standard is a biopsy of lower stomach/upper intestine to indeed show the damage. Note that celiac disease is an autoimmune disease so if you do have the disease and don't follow the diet, you will be doing much damage to your insides beyond the obvious outward symptoms. There is a condition of being gluten sensitive without having the autoimmune illness dx...and you still avoid gluten...your blood work may come back negative for celiac but following the gluten free diet will eliminate all symptoms. This was true for my friend who was very ill with Crohn's, which she had had since she was a teen...and eating gluten free has enabled her to go med free and lose a ton of weight and feel fantastic for the first time in her life. Needless to say, I am pretty opinionated on the topic but that is because I suffered for so long and was medicated to relieve symptoms...but never cured. Gluten free cured me for life...but I do have to stay gluten free 100% or else the autoantibodies will be triggered to do their damage to the villi once again. Hope this provides you with another avenue of thought. :)
Interesting. I first developed IBS during pg, which is common with celiac disease. Maybe I should get tested for it.
My IBS is extremely sporatic. I NEVER know when or what will make me sick and for how long. (Maybe this is why my dr won't put me on any drugs??) For example - the chicken fried rice I had this past Saturday evening. I've had it probably at least once a week for the past 6 months. It's cheap (tyson makes it), easy, and I can make it for dinner and have some for lunch the next day. Well...anyways after having it probably 20 or so times, last Saturday was the 1st time that it made me sick. Geez...for 30 hours - on and off. *I gotta say I love my b/f, he's totally understanding - doesn't make me feel weird or anything about it!* So, since my symptoms are sooooo sporatic I really don't want to take immodium every time I eat something, since I never know when I'll need it. (Also my dr said it wouldn't help the bloating/gassy feeling)
I've heard that peppermint and/or tea can help - so if I'm out and get sick I'll suck on a peppermint or drink some tea.
Also, sometimes it's like I get sick and haven't eaten something in a while. Some mornings I just end up feeling sick and then eventually do get sick.
My dr did do some blood test (I don't know what all he tested for) and I had a colonoscopy (actually it was the one that they go all the way up through the large intestines - can't remember what that one is called) and everything looked fine. (Talk about being freaked out!!!)
I don't even have specific foods that I can watch out for. Ex. my mom can't eat grilled onion, mushrooms, garlic, popcorn, etc. But for me it's never the same. I got sick on garlic bread a couple of times in a row - but then had it several times since and nothing happened???
Presently I don't have insurance, however when/if I get married (fingers and toes crossed) I'll have insurance and will definately try another doctor.
Has anybody had pain so bad you've passed out??? I've passed out several times (once in the shower) and this past Sunday I felt like I had to so bad, but wouldn't let myself.
Yes, I know just the pain you're talking about. I have come close quite a few times. I now have practical knowledge about stimulation of the vagus nerve during the valsalva manuever. Another doctor may be able to give you samples if you can swing the office visit financially. Most of them get Paxil from the reps all the time. If you could even get the Bentyl that may help. At least it's PRN. That's good since your flare ups seem to be sporadic. I don't know. You're in Dayton, right? My nephew goes to UD and participates in a lot of their service projects. He may know of somewhere you can go for a discounted rate or even free. I'll email him today or tomorrow and see what he can find out. I'll be thinking of you. (Every time I go No. 2, just kidding;) )
Thanks a bunch NurseBaby, I'd appreciate it. I've thought about calling up my dr and asking him about these meds, just to see what he'd say.
Also I forgot to mention, when I went in to get my school immunizations I saw the nurse practitioner (?sp?) and I asked her if there were any new meds. She said that there were not! I don't know what is up with this dr's office????? :angryfire
Deb...you know some of my story and I decided to post here instead of emailing you back. I'm a pretty open book. I have had pain for months and months (actually started with my last pregnancy). It can get so bad that I feel like I am going to pass out but I don't actually do it (unlike you). My pain is pretty much constant. It just goes in waves as far as intensity. It can go from just below my ribs all the way down to my pelvis, but it is usually in the pelvic area.
I have had a CT scan, sigmoidoscopy, laproscopy, hysteroscopy, fecal tests, bloodwork, etc. They cannot find a darn thing wrong with me. The other morning, I was in such pain and so miserable that I spent half the morning in the bathroom not sure whether I was going to throw up or lose everything out the other end.
They are sending me for a colonoscopy (cancer runs in my family, as well as polyps) and doing tests for celiac disease. In the meantime, I am on Zoloft to help to reduce the stress in my life and the pain along with it (hopefully). They gave me Bentyl, which I was told only to take when absolutely miserable (I don't want to take it at all if I don't have to). For this moment, they are going with a diagnosis of IBS until I have the colonoscopy and other test results come back.
I hope this helped you some. I have been reading and talking to my dr. and researching, but IBS seems to be so different for everyone and is such a hard diagnosis.........
If you need anything else or just want to commiserate, PM or email me!
just wanted to say that if you decide to be tested for celiac disease...do not go gluten free before the blood tests or the biopsy...it can drastically alter the results and give you a false negative result. I also wanted to say that I had random occurances with severe pain as well...much worse than my childbirth pains sometimes. It was hard to nail down what foods triggered it because sometimes a food did and then the next time it didn't. With celiac, it was explained to me that it is all about how much your intestines can stand before pooping out (ha!) so sometimes the reaction was immediate and sometimes there was none. There are actually a lot of people that are asymptomatic which would be much worse to me because being pain free is the only thing that makes the diet so doable. A good link to look at if you have IBS and cannot find a remedy is http://www.cnn.com/2004/HEALTH/conditions/07/01/celiac.disease.ap/index.html
I have IBS and have suffered without meds because it is so sporadic...an attack once a month or so. But the pain is unbearable. Antispasmodics are available for certain IBS patients for pain. Zelnorm is now available, but I think it is only for the constipation kind. My sister went on it a few weeks ago, and I am considering going to my doc to ask for it.
I get constipated for a week or two, then eat something to trigger me, get severe (10+ level pain) pain on the left side which is relieved by defecating, but usually cannot have BM for two hours or so after pain starts. I've started doing enemas as soon as the pain starts, but sometimes gives me diarrhea for a day or two! No win situation!
Immodium tends to be ineffective for IBS patients. I just try to avoid trigger foods (high fat, fried, or dairy for me). If the pain hits, and I am unable to relieve it, a moist hot towel on the abdomen sometimes relaxes the abdominal muscles enough to allow a BM to occur.
bad that I actually pass out. Still my dr says their is no medicine - only for constipation kind, which I don't have!!!
Another doctor may be able to give you samples if you can swing the office visit financially. Most of them get Paxil from the reps all the time. If you could even get the Bentyl that may help. At least it's PRN. That's good since your flare ups seem to be sporadic. I don't know. You're in Dayton, right? My nephew goes to UD and participates in a lot of their service projects. He may know of somewhere you can go for a discounted rate or even free. I'll email him today or tomorrow and see what he can find out. I'll be thinking of you. (Every time I go No. 2, just kidding;) )
suzy253, RN
3,815 Posts
Deb--a lot of good suggestions here you can seek out with your doctor or get another opinion. Are you going to a GI doctor? And for me, the Paxil works...might not for others but there are lots of avenues to check out. Although it hasn't bothered me (the way it used to with stomach pain, diarrhea, food literally going right thru me), a stressful situation may/may not set it on again...usually in a delayed reaction. Like after a stressful exam, I might have diarrhea 2 or so days later. When I was first diagnosed, I was told to increase bulk in the diet as well.
Good luck...let us know how you make out and what you decide to do. You're not alone, that's for sure.