[Lomaal]

omg hearing all these posts is like someone is going in my head and writing down my thoughts and questions! I was diagnosed with IBS when I was 12 (I am 16 now) and I haven't told anyone. Not even my best friend of 11 years, who I am soooo close to. Or my boyfriend of a year who knows everything else about me. Its so hard because no one understands. Most of my friends think I'm faking being sick, or playing hookie. Everyone always asks me "why are you always sick?!" or says "you never leave your house.. whats wrong with you?" Its soo frustrating! I don't even believe in IBS so I don't choose to tell anyone that I have that. Everyone knows that I have stomach problems, but not that I have "IBS". I don't think people would get so incredibly sick, to where they can't even leave their houses without it being a big deal, for no reason. thats why i think calling it IBS is bull****. I have tried EVERYTHING to make it go away.. nothing has helped.. it got to the point where I was taking up to 20 immodium pills a day, and nothing changed. I just got back from the hospital a few hours ago.. my mom made me go because i was crying so hard because of the pain in my stomach.. they ran tests and found nothing except blood in my urine, which means now they think i have developed kidney stones. I know I am hard headed about the whole IBS diagnoses thing, but I don't want to believe that there is no cure to what I am experiencing. I wish more people diagnosed with IBS wouldn't stop at that.. No one should have to be miserable and scared to leave the house for any extended period of time. Anyway, I hope to hear back from others who don't really believe that IBS is the answer to our problems. Hope everyones feeling OK. -Lindsey

 

[DommieDo]

LindsayI am sorry you are having such a rough time at the moment. I now it must be hard to come to terms with 1) being so ill and 2) not having a well known and well understood disease to explain it. If you find it hard to explain to friends and family why not give them the BB address and let them find out for themselves?In any case you have come to the right place - you will get alot of support and good advice here - see you round.Dom

 

[linnie]

hi from one lindsey to another...i can understand everything that you're saying, and i think most people here can too as we all face similar issues! however, lately i've had some big changes in my life regarding IBS that i think are worth mentioning.personally, i had never told any of my friends or anyone my age about my issues with IBS. they didn't even know i have "stomach problems". this was especially tricky living in a co-ed dorm at university! in the past month or so i've managed to tell both my boyfriend and my best friend. and they've both been amazingly understanding. in fact, it is probably a good thing, because people can misinterpret our IBS symptoms as meaning that we don't want to be around others. whereas i know for me, it's more that i'm afraid of a potentially embarassing situation, but i still want to be around my friends. plus, i've read statistically that anywhere from 12-20% of the population has IBS. if you tell someone about IBS, maybe they'll know of it from a personal experience themselves. my boyfriend knew of it because they thought his mom might have it! and i feel like he doesn't see me as gross or unattractive now that i've told...IBS just makes you human--we're susceptible to these things. also, when i went to talk to an advisor at school about IBS and taking classes, i thought i'd have to give a 15 minute intro lecture about what IBS is and all that. but the second i said the name he nodded and gave a knowing smile, because his mother has it and he's worried he might have it himself! it made me feel so less alone at university, and i was really glad i told. if some idiot does make a big deal about it, what does that say about them as a person?i also faced the issue of wondering how "real" IBS is. for the longest time, i felt like i didn't have IBS and there was just something else the doctors were missing. when i got to school i took a class in mind/body medicine. in it, i even did a semester long project on trying to fix my IBS through cognitive behavioral therapy! doing this project changed my entire perception on IBS. i think in our society we're so used to seeing illness as so black and white, and we want to be quickly diagnosed and treated with a pill. sadly, not all conditions are like that. some, like IBS, don't even have visible (organic) causes. that doesn't mean they're not REAL, nor does that make them less valid medically. doing my report, i read a lot about something called the "mind-gut" connection, in which there is a nervous system that connects those two (the brain and the digestive system). evidence for a mind-gut connection can be seen in anyone--just think of getting butterflies in your stomach. that's a real sensation or feeling influenced by thoughts. this is already getting long and winded, so i'll try and wrap it up. i think the hardest part to IBS is accepting that you have it, and developing a sense or definition of what IBS is. for me, i think of the mind-gut connection and an increased sensitivty in the gut. i ALSO believe you don't have to have it for life. at this point i feel like IBS can go away, if i stop focusing on it. of course that's a trillion billion times easier said than done, and that statement simplifies a huge process--but i think it can be done. if anyone actually made it this far, i guess i'm done. i wanted to reply because in some ways i don't totally agree with you, but in some ways i do--i think we both don't think IBS should make people stay home all the time and ruin their lives. it can be so controlling and people can deal with it in so many ways...but importantly, that's up to the individual..lindsay

 

[eric]

IBS is very real and can cause exactly what is being said here. Although the condition is very complex.From someone who is 41 and had this since I was ten, I highly recommend you read this website.It is the most accurate website on IBS and the top research center in the US on IBS. http://www.med.unc.edu/medicine/fgidc/ Hope this helps in the start to understand it and treat it.On a side not this is one of the best things to explain it to people, there is also Molly's brochure in the links on this site. Keeping it hidden and not talking about it and suffering alone is not benefical.IBS Companion"All to often, we forget that IBS not only affects the sufferer, it can have a detrimental effect onthe lives of those around the sufferer. Holidays and days out might often be cancelled orrestricted. It is not easy having IBS, it is not easy supporting an IBS sufferer either. This shortrecording is easy to understand explaining the symptoms, common fears, and the explorative teststhat IBS sufferers have to go through to be diagnosed as having IBS. For those around thesufferer, it will provide insight into this most troublesome condition. For the IBS sufferer it canbe a good source of explaining IBS when you have tried or you are tired of explaining it toothers. With gentle soothing background music this recording adds to seeing both sides of theIBS equation. Recorded by Michael Mahoney, known by many sufferers for his gentle, patientapproach and for his support in helping IBS sufferers and partners too. " http://www.ibsaudioprogram.com/newibstitles.htm

 

[Nikki]

I know exactly what you mean because i was the same way. I never told anyone about my IBS until recently. The first person i told out of my friends was my boyfriend of the time and that was after i had been going out with him for 3 months.I tell a select few of my friends now. Actually, i told 2 of them tonight. THey have known me since my school days. It was only fair that i told them! My friends sister has been very ill recently with Ulcerative Colitis and has been in and out of hospital a lot at the moment. I only told her so that i could try an offer some support to her. It turned out that her friend also has IBS. Also, this friend of mine has the same problems with her Dad that i have with mine. Her poor sister. It can't help her much at all. Oh well.I hope you do learn to accept your IBS. Because as soon as you do it will be a lot easier for you to start trying to control it. By telling your friends, or a few of them you will feel like a great weight has been lifted. At least, that is what i felt.I have gone on a bit now. I hope this was helpful.Spliff

 

[JennyBean]

I think the best thing you can do is tell the people close to you what you are going through. If they love and care about you, then they will be understanding. If they don't know what's wrong with you, then they will wonder what your problem is and why you don't "want" to go out with them instead of understanding why you can't always do everything they can. It is very frustrating being stuck at home and having to miss fun or important events because you are sick all the time. I think all of us here know how that feels. I have missed so many classes this semester, but I talked to my teachers about why I have been missing their classes so they know that I am not just a flake who doesn't care about my education. Ya know what?! One of my teachers has the same problem! And all of them have been very supportive. If you tell people about what you are dealing with and explain what it does to you, most people will be understanding, and if they aren't, then that's their problem. I couldn't imagine holding all of this inside and pretending there's nothing wrong with me.Some people think it's gross to discuss things that have to do with your digestive system and pooh, and I think that makes it all the more fun!It takes awhile to be able to cope with this situation, and believe me, I am not even close to fully coping with it. I wish there was something out there that could cure this, but in the meantime, I am trying to get more positive about my situation and not dwell on feeling bad. I take one day at a time, and I just try to deal with the bad days as much as possible.Good luck and just know that there are people that will be supportive of your sickness. The people close to you will probably wonder why you didn't tell them sooner and will care about you just the same if not more than they do now.

 

[Nikki]

You will find that if you tell people, mostl ikely people will be extremely supportive! One of them might even have the same problem! Its actually very common! 1 in 5 i believe.Sometimes its good to tell people. Last year i told a friend of mine before we went on a trip because i just wanted someone to know incase something happened. Her actual words to mewere 'Don't worry mate, my mum has it too!'