Irritable Bowel Syndrome (IBS) Support Group

Irritable bowel syndrome is a common intestinal disorder that is characterized by bloating, abdominal pain, diarrhea, cramping, and constipation. Typically no abnormalities appear during standard medical testing, and so irritable bowel syndrome is identified by the symptoms. Although irritable bowel syndrome can cause serious discomfort, the intestines are not harmed.

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vannillabear 03/07/2012

Ok, so I've been on here a while and I have done TONS of research. Basically what I have found through my research and from different doctors is that IBS is considered an autoimmune desease, but they don't know why we get it and they don't know how to treat it, just like most other autoimmunes. I personally think that we should all be on autoimmune suppresors or anti inflammatory meds, because that is the root of our problem. I would personally like to hear from everyone what has worked for them to soothe the diarrhea and pain. How do your doctors help. I'm hoping soon to be going to an autoimmune specialist to see what options we do have that our doctors aren't telling us. That's right, I have found some things that all of our doctors won't tell us. Like sometimes inflammation in the small intestine could mean a cassein or egg allergy. Also I found out that this Naltrexone drug has had studies and proves that it helps people like us. My doctor did tell me about another IBS drug called lotronex, but it has serious scary side effects, and I for some reason get all the side effects to major drugs like that. Anyway, I think we can all help eachother, and please feel free to tell me if any of you have heard of any of these, I am really determined to find a cure or at least a managment plan to help everyone with this. I wish so badly that I could have a constipation problem, it's soooo much easier to manage vs having to run to the nearest bathroom all the time. Oh which brings me to another theory. I personally feel that what our body is doing is tagging our food as intruders and gets it out as quickly as possible, this is what I have found with my own personal testing. I spent alot of money back in Aug for a food sensativity test and there was some odd ball foods that came up and then there were foods that they claim my body didn't react to, but if I eat them, emmediately I get the runs, so I still don't know how accurate it was, but it looked very fishy and it did say alot about what my body is doing to foods. I hope someone finds hope in any of this.

deleted_user 03/07/2012

Thanks for your post. I have also done tones of research and spent thousands of dollars for nothing it seems. Although I have had several food intolerance tests and apparently right now I am intolerant to alot of foods.....mainly sugars,wheat,dairy,nuts and the list goes on and on. So hard to not eat them but when I eat very clean my IBS slows down and the running to the bathroom stops. At the moment I have been eating anything I like and spending a good part of my night and day in the bathroom! I do think alot of it is liked to foods, and they say fructose is one of the major thing to avoid with IBS which is hard as fructose is in so many foods not just fruits. Hope this helps abit.

zzztop 03/07/2012

I DO NOT BELIEVE IBS IS AN AUTOIMMUNE DISEASE MY DAUGHTER HAD LUPUS WHICH IS A HORRIBLE AUTOIMMUNE DISEASE SHE DIED FROM IT IN 2003. IT IS WHERE BAD CELLS ATTACK GOOD ORGANS IN THE BODY AND DESTROY THEM. WHEN SHE HAD INTESTIONAL BLEEDING BUT IT WAS CAUSED BY ULSER THAT HAD FORMED FROM ALL THE (((STEROIDS))) SHE HAD TO TAKE THAT IS A KILLER DRUG PREGNZONE. I WOULD NEVER WANT TO TAKE THAT. EVERYBODYS IBS IS DIFFERANT SOME MILD TO DISABLING. THE BOWEL IS MORE SENSITIVE AND REACTIVE THEN A REGULAR BOWEL IT CAN GO INTO SPASM AFTER ONLY MILD STIMULATION. LIKE CERTAIN FOODS, OR ((STRESS)) THERE ARE A FEW MEDICATIONS BUT I WOULD,NT WANT TO TAKE THEM (SIDE EFFECTS)) I NHBAVE IBS AND I HATE IT I HAD A FLARE UP THIS WEEK. AND DRS. DO NOTHING AND YOU CAN,T HAVE COLONOSCOPY,S ALL THE TIME THAT IS A VERY INVASIVE TEST UNLESS YOU ARE BLEEDING. IT SUCKS. I JUST LIVE WITH IT. GOOD LUCK ON YOUR RESEARCH. I ALSO HAVE SO MANY BOOKS ON IBS. THEY ALL SAY THE SAME THING. LIVE WITH IT. SAD. ZZZTOP

pford 03/07/2012

I had a doctor today tell me there is a new "infusion" therapy that is working well for IBS. Is this the "transplant of stools" currently being studied in Australia or is there something else out there that I can't seem to locate? Please continue to research for doctors seem to have little information or interest in treating this dreaded chronic illness. I am so with you as far as your theory goes. I also have other chronic conditions (ie fibromyalgia, chronic dry eye disease, etc.), along with a positive ANA on occasion, that lead me to wonder if this is just an autoimmune issue.

deleted_user 03/07/2012

Stool infusions are high risk. I actually worked with both a team of GI's and Infectious Disease doctors before I developed IBS because I had c. diff (an infection in the colon that frequently causes IBS-PI). They didn't make a connection between the autoimmune system in me personally, but I know it is possible in some cases. As are food sensitivities. The one factor I have heard over and over again though is the mind-gut connection. A lot of IBS patients develop anxiety or depression or start with those conditions and develop IBS. Lots of studies are being done in this area in the US at least right now I know. If you want to check out some more research you may want to also check out Duke University, Mayo Clinic and UW-Wisconin. These were the clinics that worked on my case and I gained a lot of understanding from what they were able to provide. There may not be a cure, but understanding how your body is reacting or why sometimes can help make it a little easier to get by. Good luck and best wishes always!

vannillabear 03/15/2012

Thanks everyone. It's just been really hard. I understand food sensativities, I have many from a test I paid for, but I went off all of them for 3 months and I was still on the toilet and in pain. I've had another horrible day today. I didn't start getting depressed until after I started having kids and I want to go do things with them like go to the parks and movies and play dates and vacations and all sorts of fun stuff, but I can't more than half the time. The reason why I truly think it's an autoimmune is I've seen it on many websites calling it that and When I am pregnant I am completely fine, but then it returns emmediately after having the baby, and I've been told by doctors and other people with experience with it tell me that that is normal for an autoimmune, if it wasn't and it was food sensativities or allergies, we would still have the same problems throughout the pregnancy. I'm wondering if it's my Hashimotos that is truly making me this way, because I just had my thyroid levels uped and the first day, I actually woke up constipated for the very first time, but then it came back, so I'm wondering if it's still not high enough or something. I didn't start the IBS-D symptoms till high school, if it were really related to food, then why didn't I have these issues from birth? This is just a thought, and I will be talking to a Rheumatologist for some possible options. I'm really hoping to find some answers, because this is rediculous and my doctors aren't offering anything. I'm even ready to order something online claiming to heal IBS just to see if it works without all the serious side effects. Let me know what you think about this.

deleted_user 03/15/2012

There is a subset of IBSers that have true autoimmune disorders and food sensitivities but the majority of IBSers have motility (neurological) issues. The brain-gut axis is overacting and causing the hyperactivity of the movement through the intestines (IDS-D or the slowing down (IBS_C) of movement. For me there is little in the way of food triggers (Lots of beans, lentils or spinach has been all I could relate to over the last year + then only if I really eat a bunch). Most IBSers have other psyco/neurological issues including chronic anxiety, depression or acturl neurological issues such as degenerative disc disease or spinal issues. It is a very very complex disease but it most often starts in the neurological system I believe. That's not to say for different people different triggers affect the neurological system. There is recent evidence that gut bacteria can have an affect on neurotransmitters that can affect our emotions and worsen IBS especially IBS-D

Haley654 03/15/2012

My Internist put me on Cholostyramine for IBS to bind food together for one consistent bm. However, what has helped me more than anything is California English Walnuts as told by one of Dr. Oz's shows. Nuts are not so good for diverticulosis but I chew very finely a handful of them before swallowing and drink plenty of water afterward. I can actually do most regular things again without fear.

I have other autoimmune diseases like hypothyroidism, so I would believe this is just another one.

vannillabear 03/16/2012

Thanks for explaining all of that, It's hard sometimes because there are so many different theories out there. And I had a really bad day the other day and I am just so dang sick of this. I went in for official food allergy testing and yeah, I wasn't allergic to anything, just sensativities. They are starting me on a allergy injection serum for food allergies, they are hoping this will block the reactions my body has on my foods. If this doesn't work then it is most likely from my autoimmune or something else they haven't found. I also called a Rheumatoid and finally got ahold of someone but they told me they don't treat hashimotos, just arthritis and lupus stuff.
Haley654- when you say your autoimmune is hypothyroid, what exactly do you mean by that? I have Hashimotos- it's an autoimmune from hypothyroid, is this the same thing? or there is Graves disease from hyperthyroid. But I don't think doctors look at plain hypo and hyper as autoimmunes. I'm just trying to clarify what they called it for you.
I just feel sooo alone in my situation. I am on another group here and even they have different stuff going on. I'm just so sick of waiting just to get worse, that is all my doctors are doing, they are just waiting till my thyroid gets worse enough to take out and they are just waiting till I get worse to do anything else. This is getting really hard for me.

deleted_user 03/17/2012

Hang in there. For one, you are not alone. Look at all the responses. And two, eventually, they do find the answers. I know it can take a long time and it is wearing until you get there, but it is worth the fight to keep trying. Many hugs and know we are all here for you any time.

deleted_user 03/18/2012

I wanted to clarify what may be misunderstood in the post by ristzcracker. By neurological, she/he does not mean, I believe (correct me if I'm wrong Ritz)the we are nuts, it means the control our neurological system has on bodily function.
I have Mobility issues, and even though I have RA, I do not think my IBS is anything but mobility. If your believe this is your problem, study the structure of the intestines online or in the library. Basically, the intestines have squeazing muscles that grind the food and long musles that propel the food along. these muscles must work in co-ordination or the results are "undesirable" I don't know if anyone i interested in the muscular function of the colon, but I borrowed my sisters nursing books and read up on it...quite facinating

Also, be careful buying "remedies", desperate people are easy targets.

Best of luck to all in this continual problem.

vannillabear 03/18/2012

Thanks so much for the kind words. I have never really thought about reading or researching the functions of the bowels, I do know that the colon is where the water is supposed to be sucked out, but for us it's not doing it properly or it moves through to quickly, not sure why we have the issues we do. Thinking about the Neuroligical impact on it, kind of makes me want to get a scan of my brain to see if it's working properly, though I can't afford that. You are right about people preying on desperate people. I am trying very hard not to fall for some gimmicks claiming they help. I'm trying to stay with doctors that kind of deal with this sort of thing, so that it stays on the medical side. I have so many family members that have gone to naturalpathics and chinese medicines and even something else that I can't remember the name, but they keep trying to tell me that it's my subconeince and I need to deal with some sort of drama impact I ever had when all this started, when I didn't ever experience anything like that. I was a normal student going to high school and then all of a sudden I start feeling sick and start having to run to the lou to make several bowel movements (you know what I mean) I kept telling my mom that something was wrong but she kept telling me it was my nerves and in my head. So I know this is not emotional issues at all. Something is wrong, something isn't working right with my body. I just wish they would figure it out.

deleted_user 03/19/2012

On some lever, your mom could be right. (Never thought I would be old enough to say that one!). Nerves do have an impact on our GI function. However, in most cases, there is an explanation for what is causing it- be it IBS or the beginnings of a IBD. It be something as simple as an intestinal imbalance in flora (fancy speak for bacteria). All in all, keep fighting for yourself. Consider getting looked at for anxiety. It is surprisingly simple to talk to a doctor about, honestly. And a lot of people have it. Plus there are a lot of really great ways to help keep it in check, without ever having to take medicine if you choose that route (I did not. I take the medicine). Most of all though, have faith that if you don't feel right, then you need to keep fighting until you figure out a way to make it work with your life. And no, it is never just all in your head.

deleted_user 03/19/2012

P.S. If it helps, my mom tried to protect me too when I got ill to the point that it almost pushed me over the edge. Only after everything happened did we discuss what was really going on and her motives. It turned out she was just trying really hard to keep me safe. The motives may not always be clear of those around us, but they do tend to come from a good place. Still, you know you better than anyone. Remember that first and foremost, always.

vannillabear 03/25/2012

It's new, but I got official allergy testing done, again they found that I'm not allergic to any specific food, but lots of sensativity. So they are trying me on food allergy drops. He is very confident that it will work (that's if it is realted to food at all) I will let you know how it goes. He said it could take 3-6 months to really notice anything and up to 12 months to have a full effect. They are just like the allergy serums you take for allergies, but it's for food instead of pollen and stuff. He said it's been very effective. I'm keeping my fingers crossed. I am nervous on some level that it might make the stomach issues worse, we'll see. My husband thinks it won't work because it is due to something being wrong vs allergy, so we'll see on that one too. Just thought I'd give everyone some sort of option if you are thinking about this area.

deleted_user 03/26/2012

There is a thin line between food allergies and IBS. For me, I have both and yes, avoiding certain things like soy for sure makes a different. I can also tell within less than an hour if I ate something bad for my body- no matter the cause. If the drops help, good for you. If not, keep your strength up and your focus forward. It is okay to be what and who we are- no matter if we are each a little medically different. More important though is that no matter who we are or what we have, we each try to live every day to the fullest. Even on bad days when we don't always succeed. Good luck and may the world be yours!

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