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talkhealth forums • Crippling IBS
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Crippling IBS

Posted: Thu Jul 11, 2013 8:05 pm
by whiteladder42
I am a 28 year old female that has been ill since June 2008 (best guess IBS started post gastroenteritis) and have continually got worse since then, especially this year. Symptoms in order of severity include lower left side abdominal pain, dizziness (leading to infrequent loss of consciousness for 20-30seconds), feeling like I'm overheating and can't control my own body temperature, alternating diarrhoea and constipation. I have had numerous blood tests and the only finding is slightly raised CRF level continuously. I have tried the following drugs without relief: paracetamol, ibuprofen, mebeverine, buscopan, co-codamol, tramadol, amytriptyline, imipramine, gabapentin, pre-gabalin. I currently take 20-30mg of Oramorph PRN (up to 70mg in 24hours). I take no other medication for anything. I have had ultra sound scans, X-rays, colonoscopy, gastroscopy, barium meal. None of these showed anything abnormal. I have never found any triggers (except a few foods it is easy to avoid). Getting and keeping a job is impossible due to the fact I am ill 5/6 days out of 7. I have been hospitalised on several occasions this past year due to the unmanageable pain.  I have never been given any explanation to why my symptoms occur or if there is one symptom that triggers another. I get ill any time, any where without warning and the pain goes from zero to ten in less than a minute. I can also be left with a severe nagging pain. When the pain is at it's worst it is almost indescribable, like someone is tearing out my insides. Because of the unpredictability of my condition, I find no way to manage my life-what is left of it. I would very much appreciate some help/advice on my condition, and if anyone has any suggestions on how to find help on day to day living would be gratefully received.

Re: Crippling IBS

Posted: Thu Jul 11, 2013 8:09 pm
by whiteladder42
I forgot to add I also suffer from bloating and wind and have gained nearly 4 stone in weight since my symptoms began. I drink only water (2l a day) and eat 2 small meals a day. The only things I eat are potatoes, sweet potatoes, lean meat and fish. Everything I eat is prepared at home using no additives/preservatives. Neither do I ever eat reheated food. Sometimes even a few sips of water appear to trigger my pain. Thank you again in advance.

Re: Crippling IBS

Posted: Thu Jul 11, 2013 8:36 pm
by Julie Thompson
Have you had a diagnosis of IBS? I am hoping that some of the doctors advising on the clinic will also reply. I am somewhat concerned about your very restricted dietary intake, potato, sweet potato, lean meat and fish does not provide adequate nutrients to meet your requirements. I hope you don't mind me suggesting, changing your diet does not appear to have reduced your symptoms, as you do continue to experience severe pain. If you have in fact been diagnosed with IBS then I would recommend trying a Low FODMAP diet. This diet is very useful to try for symptoms of bloating and a good majority of people have symptom improvement. I would also recommend asking your doctor for a referral to a state registered dietitian, who can help you to achieve a better balanced diet, whilst also considering your symptoms. Try not to be tempted to try this diet on your own. I have people who have acquired a more varied diet by following even the exclusion phase of this diet and this has helped their symptoms.

Check the following

http://www.theibsnetwork.org/the-self-c ... erant-gut/

Re: Crippling IBS

Posted: Thu Jul 11, 2013 8:41 pm
by whiteladder42
Hi Julie, thanks so much for your quick reply! I have been on the low FODMAP diet for several months now under the care of a dietician at my local hospital. I have tried introducing "safe" foods including veg into my diet but seems to make things even worse (if thats possible). You are the first professional to express concern at how little I am eating of a restricted diet-I am not losing any weight just for info, still verging on obese with BMI of 29.9. I am extremely concerned but medical staff do not seem bothered!!

Re: Crippling IBS

Posted: Thu Jul 11, 2013 8:52 pm
by Julie Thompson
Hi - on the exclusion phase of the diet were your symptoms improved? If you still had symptoms on the exclusion phase after 8 weeks then the diet has not worked and you should contact to your dietitian who might then try another type of diet, possibly. I am also wondering by CRF do you mean CRP (C-reactive protein?) I wouldn't wish to worry you, and I hope that the doctors will give you advice, but raised CRP could indicate inflammation of your digestive system - it can also indicate other things too, so you would need to go back and ask your doctor about the results.

Re: Crippling IBS

Posted: Thu Jul 11, 2013 9:15 pm
by whiteladder42
I have never found anything that makes any difference but I feel that by eating low FODMAP foods I am trying my best. I do not think food is really responsible for triggering symptoms other than things like fizzy drinks and alcohol which I have avoided like the plague for a long time. I asked my dietician about probiotics on prescription but was told there aren't any-I have since found this not to be true and that VSL3 (think that's right) is listed in the BNF. I realise there is not a great deal of research on the usefulness or otherwise of pre/probiotics and there is a risk they could make someone worse or no different as well as help.

Re: Crippling IBS

Posted: Thu Jul 11, 2013 9:31 pm
by Julie Thompson
Please look at the response post above - I have modified it. Whilst #VSL 3 is listed in the BNF some CCG's will not prescribe it, it depends on the local protocol on probiotic prescription in your area - an example of postcode lottery perhaps. We would recommend general advice for probiotics is you should try them for 1 month as the manufacturers advise and see if they improve your symptoms, this is advice for IBS though. Always check probiotics for inclusion of FODMAPs. To explain about you comment about your weight you are probably getting enough energy in your diet but this doesn't necessarily mean that you are getting all the micronutrients you need.

Re: Crippling IBS

Posted: Thu Jul 11, 2013 10:05 pm
by whiteladder42
Yes I did mean slightly raised CRP levels. I have asked what this could indicate and was told it was too vague and it could point to so many things it couldn't be explained. I had 16 biopsies taken from a colonoscopy none of which showed anything nor was any inflammation seen in the bowel (or anything found in gastroscopy). From my own research I can see there are so many types of probiotics at a wide range of prices and it could take years and a lot of money to try each one for a month. Seems crazy that for the price of a months trial of #vsl3 that may help prevent repeated 999 calls/emergency admissions it may not be available and may cost the NHS far far more. Since I am unable to work I struggle even to afford prescriptions (hence my original post asking if anyone had any advice on day to day living or any charities that offer help and support in getting back into employment with a disability that isn't the DWP since I do not qualify for any benefits of any kind).

Re: Crippling IBS

Posted: Sat Jul 13, 2013 6:23 pm
by Julie Thompson
Hi the first port of call would be http://www.theibsnetwork.org who are the national charity for IBS we also have information about what other conditions might be causing symptoms. Have a good look at the treatments on the self care plan, it helps with living with functional bowel problems. Unfortunately for functional bowel symptoms it can take some time to find what works as everyones symptoms are different and I appreciate your point about the probiotics. You might want to check out this page http://www.theibsnetwork.org/equality-act/