[Aussie Ann]

Hi there. I joined this group a few weeks ago when I hit a low point and wanted to find others who understood what I'm going through (which I certainly have). I was diagnosed with IBS last year after having various tests (including a colonoscopy). I felt very much abandoned by the doctor - it seemed to be a case of being told, "Well, you've got IBS. There's nothing I can do about it. You're on your own now." I've tried immodium, and I've also tried calcium supplements, but it's reached the point where I just don't know what to do and so I've decided to go back to my GP.Now I notice that most of you here are in the States, and as you'll know, our healthcare system in the UK is quite different to yours. I've also spent part of my life in Australia, where the system is a kind of cross between America and the UK. Apologies to those of you in the UK who may think that the NHS is wonderful, but I have to say that my experience of healthcare in Australia was so much better than here. I know that whereas in Australia, if I'd gone to the doctor about my IBS, they would have spent time with me, here I tend to think that I'll just be fobbed off and told to get on with it. So I guess what I'm asking for now is suggestions for what to ask the doctor.All I know is that I can't carry on like this as it really is getting to the point where I can barely leave the house - I'm sure you all know exactly what I'm talking about. It's even getting to the point where it's difficult for me to talk to people on the phone, especially in the morning - sometimes I've had no choice but to either sit on the toilet with the phone (yes, I know that's disgusting), or just cut the person off and pretend that there's a fault with the line.I'd be especially interested to hear from other UK based people about their experience of GPs here. Thanks.

 

[Diana63]

I live in the UK and i must be honest and say i have been lucky in that my GP has been understanding of my condition.My IBS is of the severe form and at times i feel it is ruining my life,but i never give up and carry on looking for something that hopefully will help.Maybe you could see another GP in the practice if you feel the other one is of no help to you.I would write down all your symptoms and then you will not forget to mention anything when you see GP as sometimes we can or dont want to go on to much but i would say tell them everything and how you are feeling,i dont know what all of your symptoms are or what you have tried but there are a lot of medications out there.I do understand the feeling of not being able to leave the house,that happens to me to.Sometimes you have to try and be as positive as you can when going to see GP and go in and just tell them as it is,i know that,that can be difficult for some people,but it can make them listen more to you.If they dont,you can look for another GP.

 

[SunNsnow]

What are your symptoms?

 

[Aussie Ann]

I'm registered at one of those practices where you never see the same GP twice. The first one I saw who was the one who referred me to a specialist was absolutely wonderful, but she was just a locum and has long since disappeared. As ever, the doctor I'm seeing next week I've never even heard of. Maybe I should try and be positive and assume that she will be helpful.My main problem is diarrhoea with urgency (and sometimes incontinence). In fact, that's my only problem. I'm fortunate in that I don't ever seem to have pain, just this constant diarrhoea. But it's preventing me from being able to function as a normal human being. I'm pretty sure that anxiety is a real problem for me too, although I believe it's caused by my stressing out about needing a toilet, not being able to find a toilet, not making it to the toilet in time, etc, etc. Next week, for example, I'm meant to be having lunch with a friend, and I've already started working myself up into a real state. I know from experience that because I'm getting stressed out, chances are that I will indeed have constant diarrhoea throughout lunch. You know how the story goes...

 

[Diana63]

Have you managed to get along to see a GP and how did you get on?

 

[TimeToGo]

I have a good GP in the UK but one who also directed me to a consultant gastroenterologist for further advice and opinion.I am not happy at all that I have this IBS syndrome but I am happy that the medical support in the UK is both caring and robust .I take prescribed imodium and I mange my diet with care. I receive good advice from other members of this forum which I act on where it makes sense.Apart from this, I continue to live my life productively taking care to be always aware of the absolute need to manage my IBS D.

 

[Aussie Ann]

I'm off to see my GP this Tuesday. I'll keep you posted!

 

[Borrellifan]

Just went back to see my GP last week after 2 years of my time and money being wasted at the specialist. He was shocked that its been this long (he originally referred me to the specialist) and nothing has come from it. Before I even met with him he had ordered most of my tests from the specialist and reviewed them. He immediately spotted that my "IGA Serum" levels were deficient and said that there must be a reason/cause for this. He also ordered a new barium x-ray of the small intestine. Overall I'm quite happy that he's trying to figure out whats causing this in me (since I wasn't born with it) compared to the specialist who just kinda threw his arms up after not being able to find any immediate cause.Good luck.

 

[Aussie Ann]

I really hope that the GP I see on Tuesday is that thorough and attentive. I saw a brilliant locum who originally referred me to the specialist, but of course she's long gone. Looking back, I feel as though the moment the specialist had diagnosed IBS, it was very much a case of "well, you're on your own now." No advice about medication or how to cope with the illness on a daily basis. I guess that's why I'm feeling a bit negative about the healthcare system here. Here's hoping for a really good GP visit...

 

[cherrypie09]

Hello AussieAnneI live in the Uk too, I suffer with Ibs-D severely every day, Ive had lots of tests and seen a gastro specialist twice, both of them and my doctor say there is nothing wrong with you, its ibs-d get on with your life. I have pain,bloating,wind and very urgent D on a daily basis, I have had it for 11 years but the last 14 months so bad, I cant work and I suffer from anxiety and depression brought on by having the ibs-d, and yes the anxiety does make it worse, I have yet to find anything that really helps with any of my symptoms, I am waiting to go and see another gastro specialist in may, I think I know what he will say before I get there.Good luck with your doctors appointment.

 

[jmc09]

I dont think its fair to blame the NHS for your poor treatment,its individual doctors and specialists who are the problem.We have to trust our health to certain people,doctors and you get some very good,some very bad and most are somewhere in between.I truly feel sorry for you because without imodium/loperamide my symptoms would be exactly the same as yours so I know how you feel.Just keep badgering the doctors and hopefully something will happen.Did you say you've tried imodium? I'm up to 2 doses of 4 each day,its ok to take imodium in large doses you know. Maybe take 2 before and 2 after your planned meal next week but try that out at home first.Good luck

 

[Aussie Ann]

I do take Immodium from time to time but feel as though I don't really know what I'm doing. Rather than taking it regularly, I tend to take it when the d gets really bad. Sometimes it works, but at other times it doesn't seem to make any difference. I guess that's one of the reasons I'm going back to see the GP - because I want to gain more control but currently feel as though I'm just stumbling around in the dark.

 

[jmc09]

Try taking imodium before you really need it and more regularly too,you will be surprised at how effective it can be.Many years ago before I was diagnosed imodium made absolutely no difference to me but I've been taking it regularly for the past couple of years with good effect at managing my symptoms and I wish I'd read this forum years ago as it would certainly have helped me use imodium more effectively years ago.

 

[Aussie Ann]

Do you get it on prescription? It's just it's SO expensive...

 

[Diana63]

Have you checked out the big supermarkets?they do some medicines cheaper than the pharmacy's,maybe worth a look.

 

[cherrypie09]

Aussie AnnI take Imodium Plus Caplets, they are the best ones, My doctor gives me them on prescription, 48 at a time. I live in the Uk. Ask your doctor. And take them before you get the D try one in the morning first thing and one before lunch to see if that helps, you can always break the imodium in half if whole ones are too much.

 

[Aussie Ann]

Thanks Cherrypie, I will definitely ask my doctor about that tomorrow. At present I'm buying Immodium in packets of 6 at the supermarket, and you can imagine how expensive that's working out.

 

[Kathleen M.]

Don't you have a pharmacy anywhere near you that sells the larger amounts. Usually those are cheaper (and if you have discount stores with a pharmacy section they may have the bigger boxes). You might check to see if anyplace has a store brand. Usually that drops the price quite a bit as well.

 

[jmc09]

I get loperamide/imodium on prescription from my doctor.I get about a months supply each time.I use 8 a day so I get 28 days x 8 tablets worth on each prescription.

 

[Borrellifan]

So, I'm scheduled for my barium x-ray on wednesday. I know I've already had this test so its not a big deal but I am worried about the outcome. This GP said he wants this done to check for inflammation of the Ileum (Crohn's) but I have had this test along with everything else (all done by specialist) and no inflammation was found anywhere. I'm pretty much positive the Colonoscopy reached the Illeum and small intestine. The only test I haven't had is a straight-up endoscopy (had the capsule endoscopy). What is the likelihood that he will find something that wasn't found on the prior barium, colonoscopy, capsule endoscopy, stool tests etc?I've never had any bloody stools, strictures, never been woken during sleep, no fever's nothing like that. I just get a bit nervous anytime someone mention's Crohn's.