Feeling better again now. Honestly, is like being half a normal healthy person and half a completely decrepit person whose intestines refuse to conform.
I suppose the key to sanity is to enjoy the good parts and accept the bad parts - but not too much. I worry when I still hear IBS sufferers are told to "just learn to live with it". Of course, in a way that's exactly what we have to do, but that shouldn't be the FIRST thing we are told to do - it shouldn't be the doctor's first response.
We should receive advice about diet, about medications, about fiber supplements, about support groups, about clinical studies, about supplements, about hypnotherapy.
And then, maybe, if none of that works, then we should be told to learn to live with it. But only then. Otherwise it's just giving up before we've even started.
Sophie,
I just happened upon your site for the first time, and reading some of what you've gone through was like reading chapters out of my own biography.
I developed IBS at 21. My primary symptoms were a combination of infrequent constipation, very frequent diarrhea (sometimes 6-7 times in one morning) and the accompanying, severe cramps, nausea, etc. My gastroenterologist checked me for everything: ulcerative colitis, crohn's disease, the usual illnesses, but could never find more than spasming and inflammation in my bowels.
I've gone through the psychological turmoil associated with IBS as well - the depression from illness, the fear of the pain, and the embarrassment from the inevitable accidents.
I tried every remedy known - changing my diet, prednisone for the inflammation, to teas, to Questran, etc. Nothing ever seemed to work.
I'm writing though to tell you there's hope. My IBS came on very suddenly. And as quickly as it came on, one summer, when I was 26, all of my symptoms disappeared.
I still have the occasional flare-up, but the severity of the symptoms have lesson one hundred fold.
All I can do is encourage you to hang in there. My greatest asset was finding people similar to me, who understood what it was like. In fact, one of my ex-girlfriends had colitis. In a strange way, it had a calming effect on me - I knew that when I was sick, she could relate, and that she'd been in the same situations as I had before (with the accidents, the pain, and the depression).
I know it's not worth much, but keep your chin up.
John.
Everyone seems to share what they have tried, so I thought I would add to the list:
I have basically cut out cheese, yoghurt (but not milk as this has no effect...go figure), yeast, wheat and coffee (but not caffeine as decaf has the same effect on me) and I generally now do not get the aches and tiredness that I used to get. Avoiding the above is very difficult as they are in foods you would not think, but am now always careful to read every lable (anything that goes in my mouth...drugs...toothpaste *anything*). This has cleared up the tiredness and aches and pains and nausea that I used to get. Eating spicey food also gives me an upset stomach but I like spicey food so I normally put up with it for a day because I know it will pass.
Unfortunately this has left me with this random stomach pain that refuses to go no matter what I eat. The pain is so intense I can do nothing except curl up in a ball and go to sleep and wait for it to pass. I am currently trying seven seasons probiotic tablets and intend to also try wheat free soluble fibre supplements. However, I have also discovered prune juice that seems to help my stomach get rid off whatever is causing the pain (though this does mean running to the toilet continually for the next hour, but it does seem to get rid of the pain and reset my stomach). I am also considering giving up alcohol (only drink smirnoff vodka (triple distilled...ten times filtered, i.e. no wheat) as believe this may be making my symptoms worse.
If anyone has any more ideas then let me know (re: doctor - personally I think they should all be put against the wall and shot as they have all been useless and unhelpful).
BTW I have had quite about of time off work. Does anyone know if IBS is covered by the Disability Discrimination Act?
Ive Had (diagnosed) IBS for about a year now it probably went undiagnosed for a couple too,
my symptoms mainly were diarrhea, constipation, alternating from day to day and usually some spasmy pain to go with it, until last night when I had a sharp throbbing PAIN in the bottom right hand corner of my intestine, its possibly the worst pain I have ever felt and i ended up going to the local hospital because my GP thought it was appendicitis. anyway after an Xray and some reassurance from the surgeon i found out it was just severe constipation which has all but gone now. I just stumbled accross ur site lookin up some stuff on IBS and as(John) put it, it was like reading my auto biography
Hi All,
I've just found this blog whilst searching to confirm whether IBS is covered under the Disabilibity Discrimination Act, I don't know for sure, but I have an idea that it might be possible to argue in some circumstances that it is. There was a case recently where a receptionist claimed that a change in working conditions was discriminatory to her due to her IBS as she was required to only take certain toilet breaks after the changes. But this is more a case of a change in working conditions which the employee could not meet due to a physical problem. There has also been a recent employment tribunal case where the court said "a sufferer from irritable bowel syndrome who was not incontinent did not have a disability" - so i don't think that it is considered a disability as such, unless a person has regular continence problems, but that it can be something which should be considered when an employer requires something new from an employee and that employers should make reasonable adjustments to accommodate a person with such physical problems. Hope this helps... things might have changed recently of course as these cases were probably not heard under the 2005 Act. Perhaps the CAB could give advice?
Hi...after having time off work with irritable bowel i was asked to see someone from occupational health. After doing so a report was sent to Human Resources on which i have a copy. For the people who are wondering if this illness is covered by the Disabilty Discrimination act..it is. The following quote is on the report "Dawn was diagnosed some years ago with the debilitating condition of Irritable Bowel Syndrome (IBS) which is permanent and chronic which meets the criteria of the Disability Discrimination Act." It goes on to say it will result in periodic absence..the need to sit down at times, go home and lie down etc..hope this helps.
Just found this site and am having a wonderful time reading the blog from the beginning.
5 Yrs with IBS for me.
This particular entry - "Learn to Live With It" earns a response. In it you said it shouldn't be a Doctor's first response. Here was the conversation I had with my Dr. after all the wonderful tests they put me through ... I still remember the start fo the conversation as if it happened yesterday, owing entirely to how bizarre and un-Doctor like it sounded ...
Dr: "We've tested for Crone's Colitis, Celiac, etc... and everything looks OK. It would seem you have Irritable Bowel Syndrome."
Me: "OK ... What's that?"
Dr: "It's hard to define. It would be better if you looked it up on the Internet."
Me: (slightly stunned by the previous answer)"Is there a treatment?"
Dr: "Diet Management. You have to learn to live with it. Try eating things that don't bother you."
It went on from there for another 15 minutes, but the rest is all kind of fuzzy in my memory. If there was more than 1 Doctor in my town, I would have changed Doctors that very day.
Hi Guy's
I've been living with IBS for... well... it must be about 7 years now... but it was only diagnosed last year.
It’s been hard for friends and family to understand for all this time without having a good understanding of what’s happening to me. I'm glad to say that I have some really good friends around me.
Unfortunately I now have to face a disciplinary in work due to my sickness over the last 9 months, as my bosses feel that I’m not "dealing" or "handling" this condition to the best of my abilities to benefit them by having me to answer their stupid calls... (I work in a call centre) I’ve found that cutting certain foods out of my diet can help... I live an almost dairy - free life... which really blows in the summer.
I was hoping that someone could tell me if the DDA 2005 does actually help me in the situation as I’m at my wits end of how I’m going to be able to stop myself from being unfairly treated
My disciplinary is on Monday 19/11/07 wish me luck
Hi Vicki - sorry to hear about your situation. I would contact your local Citizens' Advice Bureau, I'm sure they can help with issues like this. Also, the Gut Trust can offer support on IBS issues and perhaps give you a statement to say that IBS is a "proper" illness!
And if that doesn't work, get them to contact me - I'll be sure to let them know exactly what IBS involves!