The IBS Journey - What the Irritable Bowel Syndrome sufferer may go through!
The IBS Journey.
Living with IBS is a long and often difficult journey.
It goes without saying that we are all different, but we have many similarities, too! Take a few minutes to read the ‘IBS Journey’ below, where you are in the journey, and how you might cut your journey short!

Before you knew what IBS was.
You knew there was a problem, usually painful, and you were hoping it would pass. You tried to ignore it, and it didn’t go away, but if it did, it came back again, usually a little worse than it was previously.
People didn’t understand, or you didn’t tell them about the problem you were experiencing, or the worrying thoughts that kept going through your mind. And there were the background thoughts too, those that you tried to push back deep in your mind.
You might have done some basic research and hoped you didn’t have everything you read! You may have got impatient with people who didn’t know what you were going through.
The embarrassment was just... embarrassing!
And it just kept being a problem, and in time - perhaps after a lot of time - you just knew you were going to have to do something about it, because you noticed that your moods were changing too, not only were you having to deal with the physical pain, discomfort, IBS-D, IBS-C or IBS-M or whatever else you were coping with; you were finding your thoughts were changing, and your confidence might be a little less than it was, and also your self-esteem perhaps was waning, your sleep pattern might be affected and lots of other things you noticed too, but weren’t sure if you were imagining it, or if you were just overtired.
After all, you have been coping for quite a while now. You had to go and get it checked. Finally, reluctantly, you listened to that little inner voice that you had been ignoring, hoping the symptoms would go away.

On the day you visited the doctor.
Tense, worried, looking for excuses to cancel the appointment, and perhaps thinking at the same time that you just had to get it sorted, you decided there was no option. You couldn’t bear to think about living like that for the rest of your life.
Get a pill or medicine, and that will be it, you tell yourself. The doctor would have heard it a thousand times before, but you were still anxious, brave and strong, and just wanted to get it sorted.
You were right; the doctor had heard your worries before from the many like-minded sufferers before you.
Perhaps the symptoms vanished that day of the appointment. Should you really go now? Is it starting to get better by itself? Perhaps just a bit more time is needed? But then you remind yourself that lots of time has passed since this started. Perhaps it is even a haze as to when it started. Were you always like this?
Or if you do remember exactly when it started, are you recalling it correctly? There are so many thoughts, but at least the doctor has heard it all before—thank goodness!
Well, not quite! It could be IBS, you hear. It’s a common digestive problem that affects one in five of the population. Irritable Bowel Syndrome—perhaps not quite sure of all you were being told, but you are booked in for some tests to make sure there was nothing to worry about, just to be on the safe side, you're told. Oh well, more worry until you get the results.
On the day you were diagnosed with IBS.

Hospital visits and investigations later, with all the hassle and worry they bring, you are told all the tests come back clear, nothing to worry about, it’s nothing serious, and it was as we suspected, IBS.
Yes, you remember IBS, it's nothing to worry about, or so you were told, and if you asked, you were told “you’re not going to die because of it, just take some exercise, these tablets and watch what you eat, and all should be fine”.
If you had the presence of mind to ask further questions while you were there, well done, but many sufferers might have suppressed the urge to ask more, and want to get out of the door, thankful that you had been spared from the nightmare of IBS – brilliant, exercise, tablets and watch what you eat and all should be fine – those words chiming in your ears.
Had you asked a few more questions, you might not have been so optimistic. However, in time, you will have to find out that there is no medical cure for this condition; in fact, it often gets worse.
No magic pill – no exercise secrets – no quick food avoidance solutions. You will soon discover that the medics, the researchers, and the drug companies don’t even fully understand why IBS starts! Yes, you remember Irritable Bowel Syndrome, those words again, little did you know you would be hearing a lot more about them in the future, and understanding what they mean.
“Take the medication and call me if there are any more problems” are optimistic and hope-filled words from your GP or GI Doc ringing in your ears as you eagerly depart from the doctor's office.
Hopes are high; with a little more time, all will be well—but optimism is not very long-lived for many.
When you have suffered from IBS for 6 months

Back to the doctor again, perhaps several visits are now behind you, new medications, sympathy, knowing nods and acknowledgement that yes, it isn’t easy living with IBS.
And what about your moods, your growing frustration, fear and dread?
What can the doctor do to help with the time from work you are losing due to the IBS (that is a more familiar term now!)? What can he/she do to help you live more confidently and socially?
The world may be getting smaller. The change in diet hasn’t done much for you, and the change in medications makes you feel fuzzy or not quite here.
The exercise hasn’t done anything, and worse of all, perhaps those you love are finding it hard to understand what you are going through.
The kids can’t understand why you’re not having as much fun, why days out are being cancelled, and why your partner is making other demands that you can’t be bothered with.
The doctor is sympathetic and tries to be upbeat. And maybe you hear the answer to the question, "What causes IBS?" and then you hear they don’t know.
But let’s do some more tests, more medical prodding and poking and waiting and worrying, and confirmation, (again) that it is ONLY IBS. That word 'only' might be only to those who don’t have it, but it’s starting to be a real problem to you.
You found it easier to tolerate in the early days because you thought there was a light at the end of the tunnel, and it was something that would pass. But it isn’t, and now you expect it to be there, perhaps always there, and it isn't fair!
Well, you have to remember that, says the doctor, there is nothing really wrong with you! There is no disease to worry about, so that's a good thing.
Remember??
This hasn’t been said before; you would have remembered this. Is there nothing really wrong? So why is it so painful? What's making my life a misery, affecting my work, my family, and my social life, you ask?
The pain, the symptoms, and the lower mood are real enough.
It’s just what IBS is and does, perhaps, is the reply.
‘But the good news is nothing sinister is going on, so that’s something to be grateful for. ’ Sorry, it doesn’t feel that way!
Let me know if it gets worse. The doctor's upbeat, optimistic, hopeful tones are now strained or simply have vanished. The reality is that the doctor often feels helpless for his or her IBS patients. Are you going to become a ‘heart sink’ patient?
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When you have lived with IBS for 12 months

Several more visits to the doctor have passed. Now you may be greeted with a resigned look of understanding, and you realize that the medical arsenal for IBS is drying up. You have visited the doctor more in the last 12 months than in the previous 12 years!
How many more Christmas and New Year celebrations will you miss or tolerate? How many more Memorial Weekends, Labor Day, and Independence Day celebrations will you be robbed of? It's been 12 months. You're now in repeat mode, familiar territory, and you begin to look back on this journey with unease.
The moods and faltering confidence are now just accepted. The physical symptoms are being tolerated, you’re coping, but other things are getting away from you.
Social life may now be less than it was. Family is coming to terms with the fact that you have an ongoing problem. They are finding it more difficult to understand, but they are trying. Sometimes, careless words are spoken that are hurtful to you.
Your concentration is not as good as it was; the IBS seems to be draining you physically and mentally. You do your best to remain positive, but it’s not easy.
The doctor might have suggested antidepressants – you don’t feel depressed, not yet! – But the doctor didn’t have time to explain that often antidepressants help to calm the nerves in the stomach. You leave feeling you’re on the slippery emotional slope.
When you have lived with IBS for 5 years

It has been a long five years. You have decided you are on your own. Over the last five years, you have done your research, spent a fortune on all sorts of over-the-counter medicines, online offers and apps, and taken the advice of your friends on other products. Still, none were right for you, and the pricing and monthly payments of products and services are astronomical!
IBS is an unwelcome part of your life. Your quality of life is now much less than it was, yet you have got into new routines. Hopefully, you have not lost your job or changed hours to make it easier for you.
Mornings are definitely the worst for many people, yet you have heard from others that afternoons and evenings are also difficult.
You are well aware of your wardrobe change; the elasticated waistbands help cope with stomach distension. You have spent lots of time and energy trying to find a solution to this problem. You hear of alternative treatment methods, but you decide they are not for you, and your search continues.
There may have been more tests, but nothing different to report. Your hope is well and truly dashed - it’s still ONLY IBS!
There are days better than others, but the overall quality of your life is significantly lower than it was. You feel tired still, resigned to the fact that IBS is with you forever. But then there are other days when you feel a little stronger and more determined to continue the fight. It’s not easy, but no one has told you anything different.
You acknowledge that the fight has to go on. You remain strong and determined, but underneath the stoic veneer, there is a growing sense of the emotional equivalent of treading water. You know a long-term solution is needed, but what?
When you have lived with IBS for 10 years

Lots of money has been spent searching for a solution. People around you acknowledge you have your off days, and you are not happy very often.
Little do they know that the pain and the problems continue! There may have been other tests done again just to be sure.
More ‘helpful’ advice from friends, doctors and acquaintances, and you try them all out of desperation.
How can this be, in this day and age? Why is there still no medical answer to this? The doctors are frustrated as you are. They want to help, but their arsenal of medication is as depleted as their once hopeful tones and assurances. You realise that you are on your own.
Maybe you are just resigned to putting up with it, perhaps there is still some fight in you. There are days when you can cope better than others, but your quality of life is probably a shadow of how it was before the days of IBS. But you keep going, you see adverts for ‘amazing cures for IBS.
‘Cured in days’, new alternative treatments, and you are tempted to try them all, but you have been disappointed many times before. Perhaps this is how it is meant to be, but you know deep down inside, this isn't how it is meant to be; there has to be an answer somewhere.
When you have lived with IBS for 15 years

All those years, all that expense, all that hope, all those disappointments! How time flies, perhaps you now think you’re too old to change, maybe this is your lot, and you just have to get on with it. IBS, that cruel shadow in your life which has affected you so deeply, for so long.
And how you have adjusted your life, the days out you have missed, the work pattern changed, or worse. The socializing circle is much smaller than it was; going out remains problematic, needing great planning by you and understanding by others.
Nothing you can say now that has not been said before, so keep quiet and put up with it. But your thoughts are with you, the hope that there may be just one thing you find that can help, perhaps tomorrow is that day?
When you have lived with IBS for 20+ years
(About the time it took to build the Great Pyramid of Giza!)

You have heard it all, you have tried it all, you have spent a fortune, you have little confidence in the doctors, you’ve had other tests over the years, but all come back as IBS. You know that your life has been affected significantly by the IBS, and yet you can still acknowledge there are days when things are better, it hasn’t all been bad, you tell yourself sometimes more convincingly than others!
There have been easier days and difficult ones, too, but you have survived, and you can be pleased with that.
All those years, you have been looking and searching, pondering, and trying the occasional new treatment or idea. You are still looking forward to that one day when you might stumble across something that just might help, but there again, you have heard it all before.
But have you?
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IBS-D, IBS-M, IBS-C
Since 1998, this program has been helping IBS sufferers. With users in 46 countries, it has proven the test of time.
Of course, there is no panacea, but for many IBS sufferers over the years, even those who used it as a last resort, many wished they had tried it sooner.

It took five years of research and development, with an additional three years of patient piloting, before it was released in 1998.
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See other IBS Blogs
The Day 3 IBS sufferers changed my life, and the IBS world
25 things not to say to an IBS sufferer, and ONE thing to say
Three things that delay IBS Recovery, and what to do about them
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