Always reading everyone's posts although haven't responded or posted for a while. I know I don't need to go into great explanation for this as you all know what happens to us preventing us being able to do the easiest of tasks. I wonder if anyone, is in the know of a private consultant that I can go to somewhere in the UK to check my symptoms. I have had enough NHS tests (repeated again and again for what purpose I don't know, all negative) and an attitude which seems always reverting to you are 'swinging the lead'. 3 years of this and unable to work I am really at my wits end. Tried it all, diets, exercise, taking up voluntary work (which I often am unable to attend), medication etc. all to no avail. I just don't believe the NHS reasons anymore and need to find someone who will listen to me properly and do other tests. Is there anyone who knows of another professional I can contact, in the private sector?
I have had a long history of abdominal problems from birth and was in and out of Great Ormond Street for 7 years. I have never been right but just coped with it. NHS say its not relevant, but then I would quiz them about other reasons it could be - again to do with my history........ but its always "no it won't be that, it's IBS" yet they don't test me to dismiss these theories..... and of course it's always to do with Mental problems. Folks I am sinking, I am getting worse, despite what I try, not better and I really feel unless I can get someone to listen to me properly I might not be around for too much longer. Sorry for the dramatic!!
I will be so grateful for any help.
xx
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dipsy14
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Wanted to leave a comment but I am sorry I haven't an answer for you.......I went to a private practitioner last Christmas like you years of symptoms that take over your life..... But if I am honest she couldn't help either ....had a set way of dealing with symptoms.....but it didn't work for me.....and once this happened and I asked for more support she stopped replying to emails.....I am going grain free from today to see if it helps...good luck hope you find an answer
I would advise you to go to the website of your nearest private hospital and find a gastroenterology consultant who practises there, then ask your GP to send him/her a referral letter. I also have little faith in the way the NHS operates and testament to this is the TV series 'Embarrassing Bodies' which features patients with longstanding problems who have suffered for years under the NHS and only get satisfaction after referral to a private consultant.
Agree with DTH123 . I researched my local private hospitals consultants Cv s and found a gastro with a research interest in IBS /Diverticulitis and got referred by my GP .I could have seen the same consultant through the NHS after a wait . However a private consultation meant over an hour of mapping my history ,ordering tests I had not been offered before ,in depth discussion and explanations of what may or may not be going on and the organisation of a consistent plan of treatment .Mainly I was listened to carefully and felt that someone actually cared about my condition .now a year later I feel I am now getting on top of this IBS curse and can now manage it with diet and minimal meds .know It will always be with me but now very much in the background ,with occasional flair ups that I now feel I can deal with .
My experience of the NHS ,as far as IBS is concerned has not been a happy one .
Hi Dipsy,I feel great empathy with your comments and my heart goes out to you.
Re.NHS tests, I don't doubt they are done with the best of intentions but I understand where you're coming from. I've had a colonoscopy, an upper endoscopy and a barium follow- through this year to see why my Calprotectin levels are raised..my G.P.says the Specialist is looking for a small patch of Crohns but it must be miniscule!!
Next step is a capsule Endoscopy. I've been in tears over the after-effects of these procedures on my already sensitive gut though my G.P."can't see" why they would have any impact!!!??!!!Fortunately I have a gem of a Husband and lovely(grown-up)kids.
It's not "in your head", the physical and mental are interconnected and sure, some IBS sufferers find that a change of lifestyle makes all the difference but I think it's more subtle than that. I find that IBS causes depression because I can't honour commitments or do a lot of the things I used to. I too tried voluntary work but couldn't keep it up. I would do as DTH123 suggests. I don't know where you live but Spire hospitals are very good if you have them in your area.
Also,you sound very depressed which I can understand and I think you need to speak to someone with no axe to grind, there are some very good charities with Helplines if you feel at the end of your tether for whatever reason.(e.g.Sane,Mind..)I'm not suggesting you have a mental health problem, you're just run down with battling against IBS. I often sit on the loo and wonder how I am going to cope for the rest of my life with IBS symptoms. We all say "I can't go on" at some stage but if you feel deep down you really you can't please seek help for this as well as your IBS.I hope this makes sense!
I agree with DTH123. I too went via nhs for years. Luckily I had private health insurance and went to a gastroenterologist and a colorectal consultant. They were excellent. Did so many tests that had not been done before and identified the problem I had. Your nhs doctor should be able to refer you to a gastro consultant on the nhs and you should insist. Going privately is expensive if you have no insurance. I do not believe in going to practitioners that are not medical doctors. I have done that as well to no avail. I hope this helps.
Local nhs services do not always have enough resources to give decent diagnosis and treatment. My local specialist gastroenterology service recommended colostomy which fortunately I declined and which made me fight for second opinion and after more comprehensive tests in a London hospital I was told that colostomy would not have helped anyway. Linda Ternent at Castle Street Clinic, Guildford, (01483 300400, see website) is a very knowledgeable nutritionist who has been of tremendous help to me and has also pointed out to me the people I needed to see -through the NHS. GP then has to fight to get permission for out of area referrals and of course after that there is another wait for referral. If you can afford to go private then Dr Anthony Hobson at the Functional Gut Clinic might be able to help -see website. Good luck.
Hi run the Devon Allergy Clinic . Am a RGN with a post graduate diploma in allergy. I am also a home parental nutritional nurse. Check out my web site and give me a call to see if I can help. Under no obligation
Just be careful that you don't end up paying to see the same consultant privately that you have already seen on the NHS, or at least one of their colleagues. I saw someone privately after years of being fobbed off and all he said was "oh, if you have seen my colleague then there is nothing more I can say/do" and "just be thankful you aren't dying of cancer" which was lazy and useless and a total waste of money (and, actually, if I did have cancer there would be treatment, options, support of all kinds rather than nothing at all!)!! Do you research and go to someone that isn't too local (although I can appreciate travel can be very hard). I feel exactly the same way about being at your wits end, not working, penniless, constantly in pain etc. Good luck to you. Hopefully you will find some relief and get some answers that enable you to live some sort of life. X
I am so sorry I haven't responded to your posts before now, because, believe me, they have been so welcome. I have been a very bad place of late and now have a miserable cold as well. The only comfort I have really had coping with living in this hell hole, has been from being on this site. You know you get those times, through it all when you are determined to "stand up and get on with it" and then there are those times - you just CAN'T - for all the best will in the world. I will be seeing what I can achieve from the suggestions you have all made to me. So thank you, thank you. Shame on the Medical profession though.
Of course I just feel like I don't want to eat ever again, shut my door, block everyone and everything in my life out. I have just said to my boyfriend, who has been so understanding and tries to help, (although he says he feels there is nothing he can do that truly helps), that after Christmas, once the pre-arranged social meals are all concluded that I will not be going out to dinner anymore. It is such a pointless exercise for me and everyone. The only problem there is, I become more isolated, but at least I won't annoy and let people down constantly. I know you all have the same problems and similarly my heart goes out to all of you!!
Hope you have a pain free, peaceful Christmas my lovely, lovely folks.
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