It's been at least three years that I've been suffering with this. Like so many stories here, I've been running to every gas station, store restroom, etc. Yesterday I went to lunch with my friends and for the first time didn't have to run right home to the bathroom.
I went to a new doctor who really listened to what I had to say. I had seen a medical show about this woman who had all my symptoms. It turns out she was very low on Vitamin B-12. So I went in for some testing and while I too was low on B-12, the doctor also prescribed Welchol (a cholesterol-lowering drug) to stop the diarrhea. The dose is three pills twice a day. It's only been a few days but it's working! I've only had to
take three pills a day so far but you can add fewer or up to six daily if need be.
I got to go shopping right after lunch yesterday without all the stomach churning and feeling of having to find a bathroom fast. I couldn't believe it. So I wanted to share this with your readers to see if maybe this will work for them. Thanks for your website. It's so good to know others go through this too.
The tale of...Sarah (30 June 2008)
I suffered from severe cramps and sudden onset beginning in my early 20s. Working full time was miserable. I ordered a book about IBS and read it cover to cover. From that book I took one snippet of information that has changed my life. Take fiber. I began by taking three or four fiber pills a day. Now I have increased fiber in my diet with my meals and I only take two or three fiber pills a day. I am now 31 years old and go about my day in confidence and in control.
I consider today to be my official diagnosis day. I've always had a sensitive stomach, and I used to think I had IBS-A when I would get my
period...so I went on the continual pill and stopped getting my period and things were amazingly good for many, many years. Then I got food poisoning (so bad I had blood in my stool for the first time ever). The next day I went to Mexico for a week. In Mexico my stomach first got better, then worse. By the time I returned to Canada I had constant daily diarrhea.
Two months later I was still having diarrhea almost every day (maybe one or two days a week without it). No alternating this time. My doctor did some tests for parasites and some blood tests to see if I was having an allergic reaction or an autoimmune reaction, and everything came back fine. I got a referral to a GI, but that took a few months since he put in his referral letter (and also told me in a very apologetic way) that he thought I had IBS.
While waiting for my appointment (after I finally realized that this wasn't going to go away easily) I started reading peer-reviewed journal
articles and medical textbooks. Man is there a lot that isn't known. Regardless, there are a number of GI specialists out there who don't believe
that diarrhea-only IBS is actually a form of IBS (I don't get constipation at all, unless I accidentally overdo the Imodium).
I held on to that belief for a long time. I didn't want to have IBS. Like so many of you I wanted something they could name and fix (fix being the important part). But over the months, while I waited for the appointment, I came to a realization. At this stage the name doesn't matter any more. If they call it IBS or idiopathic chronic diarrhea or some other name, it all means the same thing. There may be some underlying cause/parasite/bacteria/allergy, but at this point it's not something that they can easily test for and treat (considering all of the tests I've had). And so the practical reality is the same, regardless of the name. I need to manage the symptoms myself.
And so I've taken the calcium carbonate and Benefiber. I've cut out all artificial sweeteners and almost all pop (I have the very rare glass). I've limited my alcohol intake (maybe a couple of glasses of wine every month, and definitely not all at once. I don't drink coffee or caffeinated tea, and I've cut out dairy. I've started relaxation training, and I have worked on prioritizing my life and decreasing my worries (not that I've seen a strong link with stress in my case, but it's a good idea regardless).
With all of that I'm down to about two days of diarrhea a week, although I'm still getting a lot of stomach rumbles - the fiber is pretty new, and I think my gut is just getting used to that, and getting used to have solid bowel movements again. Today I had a flexible sigmoidoscopy, and while the doctor took a few biopsy samples, it looked perfectly fine except for a few small hemorrhoids which were causing the bleeding I've been having the last few months.
So as of today it's OK. I'm not going to hide from it and I'm working on not being ashamed of it. I have IBS (or something that's close enough that it doesn't matter - funny how I still need that disclaimer). I don't like it, but I'm grateful that at this point it's become so controllable. I'll keep looking for things that will help, but at this point I'm just grateful for the stage things are at now.
Oh, and a bit of warning for people with chronic diarrhea...if you take Citromag as a colon cleanser before a procedure like a sigmoidoscopy, don't be surprised if the effects just don't stop. I'm allowed to eat again, but the food is going straight through me (like it did when I first took the Citromag), and it's 24 hours later. I've kept the food simple, and I have taken some Imodium, so it's a bit better now...
I think it'll take a few more doses to get this under control. So just drink plenty of liquids and don't get too surprised. I didn't find this as a
side effect listed anywhere, but I should have guessed! I mean, it's the reason I was having the procedure in the first place.
I first started having symptoms of IBS when I was around 10 years old. I can see myself banging on the bathroom door in my old house begging whoever was in there to hurry up. I had cramping and diarrhea almost every day for 15 years. I can't ever remember having a solid bowel movement during that time.
I never went to the doctor; I just assumed that being sick all of the time was part of who I was. Whenever I left the house, it was pretty much a given that I would need to run to the bathroom at some point. My friends and family knew this and factored it into plans. Sometimes they laughed about it, other times people would get annoyed, and one time my brother accused me of bringing it upon myself. That really hurt my feelings.
I have endless tales of my experiences of IBS, such as going to the bathroom in the woods during the winter when I was 14 and having to wipe myself with a pillowcase when I car camped with my boyfriend. In addition to all of these wonderful memories, I've had the unfortunate experience of using some of the most disgusting bathrooms in the United States.
One day several years ago I was puttering around in my kitchen and realized that I couldn't remember the last time I had diarrhea. I was so
excited! For months I'd been having solid bowel movements and I had not realized how monumental that actually was. The reason I wasn't getting sick anymore was because I changed the kind of food I was buying. I stopped getting processed foods and bought fresh and organic foods. Instead of buying frozen meals in a bag, I cooked my meals. When it comes to packaged foods, if they have ingredients I can't pronounce, I don't buy them.
This strategy has worked for me for almost four years. I still get sick on occasion, but it usually happens when I eat out. My experiences lead me to believe that there is some sort of chemical or preservative in processed foods that was making me sick.
I am 21 years old and although I have had stomach problems since I can remember, my IBS (diarrhea) really started at age 10. I have been through all the doctors, tests, diets, embarrassing moments, heartache and all that you have mentioned. My four years of high school were excruciating and I still cringe remembering that time of my life. Now I am a senior in college, and although I am nowhere near being cured, and I still have a lot of social anxiety that comes along with this, I have found some things that help.
First, Mizpee: IBS heaven! We have all been there - out and about desperately looking for a bathroom. Well some angel created this website (google the name 'Mizpee' to find the site). Basically, you text your location, and this website texts you back the closest bathroom, and even rates it! The only problem is that currently it is only in the US, and only big cities. However, you can 'add a toilet'. So if all of us IBS sufferers come together and post our local toilet spots, it'll be like 'pay it forward' and hopefully the amount of toilet spots will increase.
Also, acupuncture. Before I left for my freshmen year of college I went to an acupuncturist as a last resort, and it worked! For about six months I had minimal cramping, only two stools a day, my anxiety had lessened, and I was able to eat crappy college cafeteria food, fruit, and salad - gasp! And even better I no longer had to take six pills of Imodium and four Gas-X each day. Instead I only took each medication a couple of times a week!
I must say though that after those six months my symptoms did return. I have gone back to the acupuncturist but have not had the same results (my acupuncturist says my whole body is out of whack so I need more treatments, and unfortunately money is tight and when I am in school I live too far from him). Nevertheless, my stomach is still better than it has ever been, but those first six months were really heaven! If any of you try acupuncture I would suggest that you find a therapist who specializes in IBS. Also don't be disheartened if it does not work right away. I went to the acupuncturist four times a week for about 12 sessions. At first my symptoms got worse, but by the eighth or tenth session my symptoms had improved.
Hope this helps all of you out there! One thing I am still working on is dealing with my social anxiety with having IBS. I am coping, but I still
feel like I miss out on a lot. If any of you have advice on how to deal with friends, going out to social events, even dates and telling guys about this, please email me. I would greatly appreciate it! Hope the above helps. If any of you have success with this let me know.