# im not living, im only existing with this ibs-d



## elainemcc (Aug 6, 2011)

THE RELIEF I HAD WHEN I FOUND THIS SITE AND REALISED I WASNT GOING OUT OF MY HEAD.I ACTUALLY STARTED CRYING. I HAVE IBS-D FOR BOUT 10 YEARS AND ITS JUST HELL.MY LIFE REVOLVES AROUND A TOILET.IF I HAPPEN TO GO TO TOWN I HAVE TO TRY TO GET PARKING RIGHT BESIDE THE SHOP CAUSE IM AFRAID IF I HAVE TO WALK FAR THAT I MIGHT HAVE AN EPISODE, AND THEN PEOPLE TELL ME IM AS LAZY CAUSE I DONT LIKE WALKING. THE REASON BEING AS WHEN YOU ARE OUT WALKING YOU DONT HAVE TOILETS TO POP INTO WHEN YOU GET THE SUDDEN URGE AND WALKING DOES GET THE BOWELS MOVING,WHICH IN TURN STOPS ME FROM WALKING BECAUSE OF THESE SUDDEN URGES EVERY TIME IM OUT FOR A WALK.MY BOYFRIEND IS GETTING RIGHT SICK OF ME SAYING NO TO HIM ALL THE TIME. WE ARE TOGETHER FOR 2 YEARS AND IM AFRAID ,WELL NOT AFRAID BUT TOTALLY EMBARASSED TO TELL HIM WHY FOR 2 YEARS I WOULD PREFER TO SIT INSIDE IN THE COMFORT OF MY OWN HOME WHERE I KNOW MY TOILETS ARE THAN TO GO OUT FOR NIGHTS OUT, OR A ROMANTIC MEAL OR EVEN HEAD TO THE BEACH FOR A STROLL. NO MATTER WHERE I GO I AM ALWAYS WONDERING WILL THERE BE TOILETS THERE . I AM SO TIRED OF THIS , I CANT LIVE MY LIFE , IF YOU ASK ME ALL IM DOING IS EXISTING. MY FRIENDS ARE GREAT BUT EVEN THEY HAVE STOPPED ASKING AM I COMING OUT FOR A NIGHT OUT , COMING SHOPPING IN TOWN, CINEMA TOTALLY OUT OF THE QUESTION. MY BIGGEST NIGHTMARE EVER IS TO GO ON A BUS. RECENTLY WE WENT TO DUBLIN ZOO BY TRAIN AND ON THE WAY HOME THE TRAIN WAS DELAYED AS SOMEONE HAD COMMITTED SUICIDE ON THE TRACKS AND ALL I COULD DO WAS PANIC ABOUT BEING TRANSFERRED TO A BUS FOR OUR JOURNEY HOME AS THE TRAIN COULDNT GO. THANKFULLY THE TRAIN WAS ALLOWED TO GO AFTER ABOUT A MILLION PRAYERS. I WOULD HAVE STAYED ON THE TRAIN ALL NIGHT BUT AS FOR TRAVELLING ON A BUS ITS TOTALLY OUT OF THE QUESTION..


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## knothappy (Jul 31, 1999)

I am a widow and a lot older than you , but you expressed exactly how i feel not living only existing..i have had this for over 25 yrs and everyone including my only Son is sick of me and my worrying aobut my bowels..i do not know what else to do.. i take at least 6 imodium every day..xanax when needed if get too panicy still the daarn diarreha breaks through..i have misssd all my granddaughters soccer games, dance reciatal plus a host of holidays..friends are disgusted with my turning them down to go shopping, out to dinner..they quit asking me i notice..at my age 67 i feel i might as well just stay home, sit near the toliet and wait to die.


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## Texas grandma (Aug 14, 2011)

I have had IBS d for 7 years. Been on Robinol Forte and it works pretty good but the side affects are dry mouth etc. I read where Aspertame could be the problem and since my D hit after breakfast and two cups of coffee with aspartame I decided to quit the Equal. Sure enough it was the aspartame. I am much better. Have control to make it to the bath. Certain foods make it worse so have to watch the orange juice and a few other triggers. Switched to other sweetener. Not cured but symptoms seem to be better.


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## overitnow (Nov 25, 2001)

I have been posting for years and years about the relief I have gotten from flavonoid supplementation. since the beginning of 2000 my D has been controlled with a simple grape seed and skin based capsule that seems to have significant anti-inflammatory GI effects--and at the same time also addresses the deposit of cholesterol. basically, it is problematic because it was developed by a customer marketed company, the NHS will not pay for it, your doctor either has never heard of it or doesn't believe in supplementation, or you really need instant relief. I have just finished another trip with the slightest of problems. If you would like to talk about it, send me a PM. If not, don't. Some people would rather vent about the problem than try a variety of treatments. Others want some kind of guarantee. I can't help with either of those caveats. It is up to you.Mark


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## Louby (Aug 14, 2011)

Hi Elainemcc I feel exactly how you describe the way you feel only I have no choice but to do a 25 min walk every morning then a 50 min tram ride every day to get to work which terrifies me.I was diagnosed about 7 years ago but have had no support from my gp at all. I have been with my partner 3 years and as understanding as he is I still get comments like it's all in you head, how can going to the toilet every day like you have an upset stomache that then leaves you drained be in my head. My ibs seem to calm down a few years ago but has flared up with vengeance the last year I use to love going walking for miles now I feel I can't do that which is making me low in mood I'm so fed up feeling bloated buying clothes that look nice one day and the next day I look pregnant in feeling drained and tired I did go back to gp about six months ago and all I got was stress the ibs is my stress im 30 years old and like you I feel like I'm not living just exhisting on the up side it's nice to know I'm not alone


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## BlueBerry Hill (Jul 19, 2009)

For around 16 years I was in the same position as you. Not being able to leave the house basically, or when I did having a plan on where all the bath rooms were located. I became quite the planner. Having relationships was pretty much impossible also. No one understands what it is like. But then when not looking for relationships, people questioned that! It was a damned if you do, damned if you don't. Very frustrating and socially isolating disease. Best of luck. hope you find some relief in the future. I know for me what helped greatly was eating a low carb/ evolutionary diet. basically I stopped eating grains and dairy, and the symptoms lessoned greatly. I remember well when i was able to take walks around the neighborhood with out much worry. I'm still ill, but seem to be getting better all the time. Looking forward to when I break out of this prison completely. A few physician web sights on the diet that helped me that I enjoy reading and learning from. Thought it might be of help. Good luck! http://www.dietdoctor.com/new


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## Thai (Aug 22, 2007)

Elaine,What have you tried to control your symptoms?


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## BayRat (Mar 28, 2011)

overitnow said:


> ...your doctor either has never heard of it or doesn't believe in supplementation...


imho, that's a real nasty blind side that too many medical professionals have: Nutrition & SupplementsI've been fortunate to find a GP who takes nutritional effects on health and conditions quite seriously. He has nutritional degrees, and keeps up with the times. Awareness is a big part of his diagnostic thinking process. Oh sure, they all know about Vitamin B, or Iron, or Fiber, but that barely scratches the surface of what herbs/supplements have to offer. Really, how many might be even remotely aware of this supplement you speak of and it's potential medicinal properties - One in a hundred? Their ignorance does us all a grave disservice.


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## elainemcc (Aug 6, 2011)

Thai said:


> Elaine,What have you tried to control your symptoms?


Hi Thai, I HAVE BEEN TAKING IMMODIUM FOR YEARS BUT ONLY IF I WAS GOING SOMEWHERE OR ELSE OUT FOR A NIGHT, WHICH I DONT DO OFTEN. BUT IT WORKS IN THE SHORT TIME BUT THEN I JUST FIND IT CONSTIPATES YA FOR A COUPLE DAYS AND THEN YOU GET YOUR IBS-D BACK WITH A VENGANCE...WHICH IN TURN AINT NICE EITHER. WHAT HAVE YOU BEEN TAKING. I SAY SOME SITE WHERE ALL THESE PEOPLE WERE TAKING CODINE...AND SAID IT WORKS WONDERS BUT I DONT WANT TO GO DOWN THAT ROAD ....


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## elainemcc (Aug 6, 2011)

knothappy said:


> I am a widow and a lot older than you , but you expressed exactly how i feel not living only existing..i have had this for over 25 yrs and everyone including my only Son is sick of me and my worrying aobut my bowels..i do not know what else to do.. i take at least 6 imodium every day..xanax when needed if get too panicy still the daarn diarreha breaks through..i have misssd all my granddaughters soccer games, dance reciatal plus a host of holidays..friends are disgusted with my turning them down to go shopping, out to dinner..they quit asking me i notice..at my age 67 i feel i might as well just stay home, sit near the toliet and wait to die.


iTS SO HARD, ESPECIALLY WHEN TO EVERY BODY ELSE IT LOOKS LIKE YA JUST COULDNT BE BOTHERED BUT INFACT YOU ARE DYING TO GO BUT ARE SO STRESSED OUT ABOUT THE CONSEQUENCES IF YOU DO.. BUT WHAT I CANT UNDERSTAND IS HOW YOU ARE TAKING 6 IMMODIUM EVERY DAY. IF YOU ASK ME THEY ARE GOOD FOR AN OCCASION LIKE YOU MENTIONED ABOVE. I TOOK IMMODIUM THE OTHER NIGHT WHEN MY HAND WAS FINALLY TWISTED TO GO OUT AND THEN IT IN TURN MADE ME CONSTIPATED FOR 2 DAYS AND THEN WHEN MY USUAL RHYTHM RETURNED IT CAME BACK WITH A VENGENCE.


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## elainemcc (Aug 6, 2011)

BlueBerry Hill said:


> For around 16 years I was in the same position as you. Not being able to leave the house basically, or when I did having a plan on where all the bath rooms were located. I became quite the planner. Having relationships was pretty much impossible also. No one understands what it is like. But then when not looking for relationships, people questioned that! It was a damned if you do, damned if you don't. Very frustrating and socially isolating disease. Best of luck. hope you find some relief in the future. I know for me what helped greatly was eating a low carb/ evolutionary diet. basically I stopped eating grains and dairy, and the symptoms lessoned greatly. I remember well when i was able to take walks around the neighborhood with out much worry. I'm still ill, but seem to be getting better all the time. Looking forward to when I break out of this prison completely. A few physician web sights on the diet that helped me that I enjoy reading and learning from. Thought it might be of help. Good luck! http://www.dietdoctor.com/new


READING YOUR COMMENT IS LIKE LISTENING TO MYSELF TALK.. I KNOW ITS NOT NICE BUT IM GLAD I AINT THE ONLY ONE, CAUS I REALLY FEL LIKE I WAS MAD AND IT WA ALL IN MY HEAD. TRIED THE LOW DIETS DONT SEEM TO WORK...


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## knothappy (Jul 31, 1999)

elainemcc said:


> iTS SO HARD, ESPECIALLY WHEN TO EVERY BODY ELSE IT LOOKS LIKE YA JUST COULDNT BE BOTHERED BUT INFACT YOU ARE DYING TO GO BUT ARE SO STRESSED OUT ABOUT THE CONSEQUENCES IF YOU DO.. BUT WHAT I CANT UNDERSTAND IS HOW YOU ARE TAKING 6 IMMODIUM EVERY DAY. IF YOU ASK ME THEY ArE GOOD FOR AN OCCASION LIKE YOU MENTIONED ABOVE. I TOOK IMMODIUM THE OTHER NIGHT WHEN MY HAND WAS FINALLY TWISTED TO GO OUT AND THEN IT IN TURN MADE ME CONSTIPATED FOR 2 DAYS AND THEN WHEN MY USUAL RHYTHM RETURNED IT CAME BACK WITH A VENGENCE.


 6 imodium at times does nothing for me!!! even with lomotil added ( and drs and pharm freak out filling them both at one time)...i have read where some people take 10 -12 a day..every one is different with different reactions to meds.


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## Chase Corin (Aug 31, 2011)

I know Exactly how you feel, the pain, cramps, fatigue all of it make you isolated you cut yourself off you don't want to go out with friends because you feel like #### so your social life suffers and so does you work when your running to the bathroom once or twice an hour.I am living like that.On top of that I am not the sickest person in my household. My Father has ALS and is going downhill rapidly. Tyring to keep up with taking care of myself and making sure he gets everything he needs is a full time job and I already have one of those.It would work for me if I worked one day had the next day off to recover. That might make it bareable but as it is I feel like I am burning the candle at both ends. So know that your not alone. I am sure a lot of us feel the same.


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## cthesweetie (Sep 3, 2011)

I am so greatful to have found this site. I hate there there are so many of us suffering through this, but it's such a relief to know there are people out there who understand. It seems there are a lot of people on here who have been coping for many years. I am absolutely terrified. I am only at the beginning of this awful journey. I'm still in the process of going through the tests that will eliminate everything else. My nurse practitioner has pretty much come to the conclustion I have IBS, however, I've still get to look forward to the sigmoidoscopy. I just turned 29 last week. I work at a call center where everything is timed (these frequent bathroom breaks may cost me my job), and I have only just started telling a few friends about what I've been dealing with, and why I haven't been able to go out with them as much. I am terrified to leave the house. I went to a concert at a casino with my parents (which I have not discussed things with yet), and had to leave twice to use the facilities... not to mention the anxiety about the 1.5 hr ride each way to get there. My fiance has been great so far, but I'm not sure he's realized how much this could impact our future, and worry he may not be up for the potential changes to come (more planning to where we are going, duration of trips ect). I am in constant fear about my friends, family, and workplace tolerating this problem.


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## jacques125 (Sep 12, 2011)

Twenty five years ago when doctors could only guess what the problem was when I had terrible D after every meal, I received the best advise of my life; when the intestines are damaged from diarrhea, let them heal by themselves being advised never to take any medication that got in the way our natural healing power. I gradually got control of my panic disorder realizing that my D was simply an offshoot of the same disorder (anticipatory anxiety) and I stopped taking medication to control my symptoms allowing my body to gradually heal. It took awhile but I eventually got my diarrhea got under control.I'm 63 now and I've been dealing with IBS and especially chronic functional abdominal pain (CFAP) for over 25 years and still have diarrhea often however, it's never out of control therefore I've regained my life. I guess I'm writing this to tell all of you that your problem can get better if you and try get a hold of your anxiety issues and at the same time try not to over-medicate the problem. All I can tell you is that it worked for me. My advise is to let the body and mind heal itself without medication whenever possible.


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## rhonalomey (Aug 15, 2005)

Nobody mentions antispasmodics, it isnt only food or anxiety that causes problems, mebeverine every day or buscopan, also fibre such as psyllium is very good. Taking medication that helps makes life easier, taking nothing and suffering doesnt help at all. Intestines do not get damaged by diarrohea, IBS sufferes have normal intestines and colon they just dont function properly, no one knows exactly why but it seems to be a neurotransmitter not working properly from the brain to the digestive system.


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## Trudyg (Aug 16, 2002)

My go-to site is <naturalnews.com> This site has a wealth of articles about every known supplement, herb, food, etc. Do so research on inflammatory response. I have had such relief since I got on omega 3's, brewer's yeast, raw vinegar, coconut oil and cat's claw. Do some research, you may find the answer--I'm not 100% but as close as I've been in 50 years!


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## SarahLund (Aug 16, 2010)

I find it offensive when friends or family members get angry at us, just cos we have I.B.S. I think you're symptoms should come first, before anything else. Even if it sounds selfish. If it's always on your mind, then it obviously IS that important. Don't let anyone tell you how you should feel. They don't have your body, so therefore they can't know


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## Illusions (Jun 5, 2011)

I remember years ago when my ignorant mum talked about this woman she didn't like and mocked her for having IBS saying she was a sad case and had no life. I remember thinking if only you knew the struggle I go through!! Ive told them now. I told my fiancé for the first time yesterday and I got 'oh you're probably just stressed it's not IBS' everyone gets an upset stomach once in a while. I know he will be supportive but like you say, people don't seem to care because I don't think it will ever be as real to them as it is to us. For the first time in my life I'm not embarrassed about my IBS and I dont think anyone should be, we are only human.


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## 2princesses (Oct 6, 2011)

elainemcc said:


> THE RELIEF I HAD WHEN I FOUND THIS SITE AND REALISED I WASNT GOING OUT OF MY HEAD.I ACTUALLY STARTED CRYING. I HAVE IBS-D FOR BOUT 10 YEARS AND ITS JUST HELL.MY LIFE REVOLVES AROUND A TOILET.IF I HAPPEN TO GO TO TOWN I HAVE TO TRY TO GET PARKING RIGHT BESIDE THE SHOP CAUSE IM AFRAID IF I HAVE TO WALK FAR THAT I MIGHT HAVE AN EPISODE, AND THEN PEOPLE TELL ME IM AS LAZY CAUSE I DONT LIKE WALKING. THE REASON BEING AS WHEN YOU ARE OUT WALKING YOU DONT HAVE TOILETS TO POP INTO WHEN YOU GET THE SUDDEN URGE AND WALKING DOES GET THE BOWELS MOVING,WHICH IN TURN STOPS ME FROM WALKING BECAUSE OF THESE SUDDEN URGES EVERY TIME IM OUT FOR A WALK.MY BOYFRIEND IS GETTING RIGHT SICK OF ME SAYING NO TO HIM ALL THE TIME. WE ARE TOGETHER FOR 2 YEARS AND IM AFRAID ,WELL NOT AFRAID BUT TOTALLY EMBARASSED TO TELL HIM WHY FOR 2 YEARS I WOULD PREFER TO SIT INSIDE IN THE COMFORT OF MY OWN HOME WHERE I KNOW MY TOILETS ARE THAN TO GO OUT FOR NIGHTS OUT, OR A ROMANTIC MEAL OR EVEN HEAD TO THE BEACH FOR A STROLL. NO MATTER WHERE I GO I AM ALWAYS WONDERING WILL THERE BE TOILETS THERE . I AM SO TIRED OF THIS , I CANT LIVE MY LIFE , IF YOU ASK ME ALL IM DOING IS EXISTING. MY FRIENDS ARE GREAT BUT EVEN THEY HAVE STOPPED ASKING AM I COMING OUT FOR A NIGHT OUT , COMING SHOPPING IN TOWN, CINEMA TOTALLY OUT OF THE QUESTION. MY BIGGEST NIGHTMARE EVER IS TO GO ON A BUS. RECENTLY WE WENT TO DUBLIN ZOO BY TRAIN AND ON THE WAY HOME THE TRAIN WAS DELAYED AS SOMEONE HAD COMMITTED SUICIDE ON THE TRACKS AND ALL I COULD DO WAS PANIC ABOUT BEING TRANSFERRED TO A BUS FOR OUR JOURNEY HOME AS THE TRAIN COULDNT GO. THANKFULLY THE TRAIN WAS ALLOWED TO GO AFTER ABOUT A MILLION PRAYERS. I WOULD HAVE STAYED ON THE TRAIN ALL NIGHT BUT AS FOR TRAVELLING ON A BUS ITS TOTALLY OUT OF THE QUESTION..


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## 2princesses (Oct 6, 2011)

Hi i have just joined the forum i have actualy cried so much reading your post. Its me!!! I am at my wits end i have 2 young children & a realy bad case of IBS caused mainly by myself, i talk myself into having D constantly its totaly taken over my life for the last 6 years. I must admit it has got alot better as i have learnt that if i am going any where i take imodium at least an hour before i go so in my mind i know i cant go for a BM so it trigers something in me to calm down. I cant travel to far, i cant go to new places, i cant go for random walks, I CANT, I CANT, I CANT. GOD I HATE THIS SO MUCH! I feel like a total prisoner.The doctor is apsolutly no help so i dont even bother going anymore. I have booked myself in for Hypnotherapy, have you thought of doing this?? Ive done alot of reserch & it seems to be a good for anxiety IBS which it sounds like you have like me. Your so busy talking yourself out of things & getting stressed & anxious about it that its just easier to just stay at home. I have taken a stand & said enough is enough, my husband also tries to suport me but think he gets tired of me talking about my constant bowel movemants i know i am!! I hope hypnotherapy works as i want my life back now, although i will need imodium before goin so i dont have an episode of D!


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