No Help.

Hi all,I've just been watching the IBS network convention. I've suffered this dam problem and pain for nigh on 15yrs. I think in that time you can imagine what I've been through for help,it would take all night to write it down.

Now although what I've just been watching,is really just saying "IBS" is accepted now,I'm sorry but,no way do I accept it,it's a syndrome so how can a syndrome have a name.(IBS) if suffering the pain I've suffered over the years is IBS,why can't it be cured.

Because syndrome means multitude of things,measles are measles,Emphesema is Emphesema,ect ect,so tell me someone PLEASE how can a syndrome have a name.

I've suffered this pain daily now for the past 8yrs,gradually getting worse,and from what I learned from what I've been watching is,PAY for a functional medicine dr,and that after all I've been through,now telling us the NHS is struggling,so Google and try and help yourself,I've done all that,and I'm still no further on. I'm not a Gastrologist or a doctor,if I was I would be sitting the other side of the desk. Is this what it's coming to,after me and my hubby have put into this system all our lives. Sorry for the rant it just really annoys me. We want answeres not excuses.

[STC789]

I completely agree. If I ever have to mention to anyone that I have IBS, it's always 'oh my friend/sister/wife etc has that'. It completely gets overlooked and the majority of people do not understand how much it affects us. i think it is a very complex problem and doctors don't know how to deal with it so just prescribe laxatives and the usual. After my 8th or 9th trip to the doctors in about a year, I finally got a referral for the hospital and I'm not even convinced how much that will do.

I'm really losing my patience with it, I'm having to take time off work and my social life is pretty much non existent. I feel bad for my friends, my family and my fiancé for having to put up with me being ill all the time.

I'm sorry for the rant but having to face this every day and knowing there is no real cure is just too much sometimes.

[BettyA in reply to STC789]

Hi my friend,

Just want to say that you put all of that VERY well!!!! Thank you for that. Some people have to put up with the inconvenience of not being able to go here or there which is bad enough... but YOU should absolutely NOT have to suffer that PAIN~! They SHOULD be able to come up with some answer to that and find the source and CURE it not just cover it up with pain pills... Well, don't give up the ship. Sometime you WILL find your answer! Yes, you will...hard as that is to sometimes believe! Big hug!!

Betty

[Hidden in reply to BettyA]

Big Hug back Betty,all this is driving me mad. Telling us to keep googling to find our own answers,what next?

[Hidden in reply to STC789]

Thank you STC789 ,I think it's time people realised there's no such thing as "IBS" if we're in pain ,one person got diaharea ,one constipated,another pain occasionally others daily,some pain on right side,or pelvic area or some me included feel better standing,or like me mu colon never keeps stil, how can you have such a varied difference in people,I know just put it under the umbrella "IBS". It's a joke. More people need to watch that conference,no one really seems to have an answer. Just keep suffering,my god I'm so bitter,at this I've lost 15yrs of my life from, well I'm not even going to say it.

Good luck in your journey.

[STC789 in reply to Hidden]

I completely agree with you. It needs more attention from everyone, there are millions of us suffering. I can't even begin to imagine how you feel after 15 years, I've been suffering now for about 18 months and I'm sick of IBS and the unpleasant experiences that come with it (fissures, piles)! Good luck Gemini71, I hope you find some relief xx

[Hidden in reply to STC789]

Oh STC789 I could write a book on what I've been through,and still I've got no piece,that's why I'm so bitter whenever I here the words IBS. When my problems first began I had a great GP,he said I'll send you to see a Gastroentrologist who is a good friend of mine,and good at his job. After he had done some tests on me,he sends me off with you've got IBS,I tells my GP,he first words to me was,no such thing as IBS,he just can't find what's wrong.

And that was a mate of his. But my GP retired so I'm at a loss now.

[MinaFox]

What things have you tried to help you IBS? And have you been tested for Crohns - people keep asking me this and its upsetting me, as i don't want to have it! But i am going to a see a specialist and find out as I am having awful IBS at the moment - or so i think it is! I had months and months of IBS about 5 years ago but i managed to get it under control by eating rice, crackers and taking fybogel and buscopan and trying to calm the anxiety and also exercise! I am not sure these things are helping much at the moment - and i imagine you know them already! but just in case you haven't tried them its worth me mentioning it!

[MinaFox]

I didn't see all the above posts! But i understand as well...my social life sucks and i feel like people think its a bit of an excuse to not do things when it really can be so awful! I want to believe we can all get through it even though its hard and it doesn't feel that way sometimes!

[Hidden]

Well,firstly MinaFox,I don't believe everything in the saying "IBS" as I said in my post.

Crohns ,Diverticlitis,Colitis ect ect,are all a genuine disease so you can,get help for what is known,plus meds. But syndrome as I keep repeating means " could be anything but I don't know what" Now if you've got time to read this I'll tell you what I've had over 15yrs. Colonoscopy,Colonography,MRI scans,CT scans,Barium Ennenama,X-ray with dye injections,Diets,I can't even remember all the precedeurs ,then I've had about 4 Gastroentrologist from one end of the country to the other.Endless amounts of medications,2 have left me dependent on,and yet they don't stop the pain. I've done what they said in that conference googled then took a trip to the GPs and Pain clinic nurse,endless times,my life is Google but I'm no doctor,that's not my job.It seems to me they want us to do there job for them now.

In my General practitioners ,GPs just come and go,they say there busy, and you can't get an appointment,but when I get there the waiting rooms empty. Not that they can do anything for me. Maybe I need someone who looks at all my health problems then join up the dots.But if I want that I will have to pay. It's wrong. Right I'll get off my soap box now and give someone else a chance.

Just listen to that convention,then see if there's any help out there for us.NO.

[linedance]

I completely understand the frustration. I have suffered with IBS for nearly 30 years now. It seems to have got worse since I have retired: you would have thought I would be less stressed but I suppose it gives me time to dwell on things, added to the fact that I now have severe diverticular disease. Going away and eating out are two things I really used to enjoy doing but now I worry for weeks beforehand and can't relax when there. Retirement was supposed to be a time to do things we hadn't had time to do before. For my family's sake I try to put a brave face on it But I am always on edge. It really is time that this syndrome was better understood so that we can all enjoy the life that we live only once.

[Hidden in reply to linedance]

Hi linedance,That would be fun,if only we could linedance.

I feel your pain,but Diverticlitis is a name and if you google,you will find lots of ways to control it,my friend has it so I do understand your frustration.

Years ago when I was first diagnosed with IBS as they call it,I was told anything wrong in the digestive system,if not rectified would most certainly turn into something else,I came out of his office crying. 15yrs on and I'm now suffering quite badly. I don't call it IBS I call it No answers disease.

Try google there is help for Diverticlitis .

[Hidden]

I agree with you Gemini71 whole heartedly. My words exactly. It's disgusting x

[Hidden]

Ijust wish more people would voice an opinion,then we may get somewhere. Thanks Sparkydoo.

[cassie17]

Totally agree with Gemini71 and linedance,i,m exactly the same x