# Prof Whorwell



## jmc09

I've just been given an appointment to see Prof Whorwell next week and I can't wait.It's the first time I will get to be treated by a world renown expert on IBS and Gastro disease.I hope things go well and I'm interested to discuss SIBO with him.


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## Fiona 123

HiI see Prof on wednesday the 9th of June. I cant wait. I have been told now I have gastritis and possible bile reflux. hopefully he will sort us both out.Have you been on Nortripyline? they put me on this.. didnt help at all,now weened myself off it. Horrible withdrawal effects.Fiona


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## jmc09

Fiona,I have just seen him today,monday 7th June.He is the nicest doctor I've ever seen and fantastically helpful.I asked to be tested for SIBO,for which he will and if SIBO is not diagnosed then I will be allowed to join a trial group for a drug called Ondansetron, http://en.wikipedia.org/wiki/OndansetronHe also told me that he did studies for both Lotronex and a drug called Cilansetron,http://en.wikipedia.org/wiki/Cilansetron and BOTH these drugs were very effective in treating Diarrhoea predominant IBS but licenses were not granted for either of them.Cilansetron is still available in Japan and maybe Italy too so book holidays there and get a prescription from local doctors







joking of course.I cannot recommend this gentleman highly enough as hes given me a few new rays of hope to explore and I'm sure he will for you too.If he doesnt know about it I'm not sure its worth knowing about.Loads of luck,you wont need it because he is a superb communicator and listener too,I got half an hour to 40 minutes to speak with him.


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## Fiona 123

HiI am so pleased that you have had a positive meeting with him.What is SIBO?I hope he can sort me out and listen to my concerns. The meds I'm on at the mo,are giving me stomach cramping - on Lansoprazole and antipsan.Great!I'll let you know how I get on.Is Ondansetron to help with nerves?Did he have your NHS notes that he could look at?.Fiona x


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## jmc09

I'll try to answer a couple of your questions as best as I can.SIBO is small intestinal bacterial overgrowth. Where there is an overgrowth of bacterial in the small bowel which shouldn't be there and gives very similar symptoms to IBS.Treatment is with antibiotics.Yes he did have my NHS notes.Odansetron is a drug that effects the receptors in the brain to slow down the signals telling the bowel to move quickly after eating,I believe and slows motility of the gut and calms it hopefully.It is an anti vomiting drug that may be useful in helping IBS D.It is similar to Cilansetron,which according to both the Professor and papers I've read on the web,a very effective drug for treating IBS D,but cannot get a license in US or Europe but is available in Japan and the Lebanon I think and not Italy,that's Rifaximin I think.Let me know how you get on,I'm sure you will be impressed,I was.Good Luckjohn


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## Fiona 123

Hi Johni was referred by my GP not my GI consultant, But I suppose all they need to do is type in my NHS number and notes are there. Im having a terrible time coming of Nortripyline and these Lansoprozol and antepsin are giving me belly ache. My Con has reduced to 45mg from 60mg which was a large dose.I'll report back tomorrow.







Fiona


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## jmc09

Fiona,I too was referred by my GP through me asking to be.I e mailed Prof Whorwell and he told me to ask my GP to write a letter to him and he did.It took a couple of months but was worth it.I've cancelled my other consultant as he was a waste of space to be honest and I should have researched other options earlier but thanks to this website I discovered Prof Whorwell.Good luck tomorrow and I look forward to hearing from you about it.


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## Fiona 123

Hi JohnMeeting Prof whorwell went ok. He's a lovely man, and he listens to you! and doesnt treat you like an idiot, and answers all questions with honesty. such a change.He has arranged a scan and blood tests to check things out. Said Gastritis, and IBS, and gave me a diet sheet. Basically White bread, no fibre food etc.that woud irrate the GI tract. said got very sensitive one..Wanted me to go back on Nortriptyline but I said No. I had terrible side effect and currently going throu terrible withdrawals. put me down for hypnotherapyTold me to take Activa yogurt 150ml per day to smooth the gut.Was in over an hour. He never rushed me at all. Well worth the meeting. I too went just throu my GP. My GI con doesnt know I went. yours is IBS-D ?Fiona x


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## jmc09

Fiona,delighted your appointment went well and you got the sort of treatment we all deserve but don't often get.I'm also impressed with the fact that he has a large team at his disposal and is at the cutting edge of IBS research so more avenues of treatment and support are available to his patients.Yes,I am IBS D,when unmedicated but imodium by the bucketful usually stops the D most of the time.I'm hoping Prof Whorwell and his team can help me manage my illness better,which is why I'm going to give the Odansetron trial a go if my Hydrogen breath test is negative next Wednesday,16th June.I will report back on that and wish you good luck with your treatment too.BTW did you receive the helpline and website details he gave to me?


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## Fiona 123

Hi John.Yes i'm abit more relaxed today.What is the breath test for?No he didnt give me the helpline and website details . If they are handy,please could I have them..Fiona


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## jmc09

Scarlet,I'm so glad he's helped you that's great news and I hope you continue to improve.Fiona,the hydrogen breath test is for diagnosing SIBO.I will PM you the telephone number and website address.John


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## jmc09

Scarlet,I'm so glad he's helped you that's great news and I hope you continue to improve.Fiona,the hydrogen breath test is for diagnosing SIBO.I will PM you the telephone number and website address.John


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## Fiona 123

HiJohn - received your PM thanks.Scarlett - so pleased he has helped you.He really is a lovely man and even with my doubts he can understand them ,and unlike my GI con he does not dismiss themFiona x


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## jmc09

Went for SIBO test a couple of days ago and tested negative,unfortunate for me.I'm now waiting to go on the Ondansetron/Zofran trial here in the UK.


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## Fiona 123

Hi JohnWhat is that bad news?..Sorry if sound dim?When does the trial start?Fiona


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## jmc09

Fiona,if SIBO is found then it's usually a case of a short course of antibiotics to clear it up but at least I have the option of a trial of a tablet that might help too.Prof Whorwell's assistant says he won't give up on anybody who is his patient so that's good news for us all.


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## jmc09

Fiona,the trial is available until the end of the year but I need to clear up a UTI first before I can start it.


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## Fiona 123

Hi JohnHope you get on the trial. I;m still waiting for a date for my scan..His PA and Prof Whorwell have been off so things are behind.My dr has put me on Citalopram to help with my anxiety. Prof whorwell mentioned this to me. Just hope it works.Fiona


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## jmc09

Fiona,ask about the ondansetron trial yourself,it surely can't do you any harm could it?Good luck


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## Fiona 123

jmc09 said:


> Fiona,ask about the ondansetron trial yourself,it surely can't do you any harm could it?Good luck


I think mine is more nerves. I have a date for my ultra sound scan 26th July at 11.45am. Why do I worry something is still wrong..Sorry what is ondansetron for. this new website is driving me mad. carnt seem to look at all posts.Fiona x


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## jmc09

Fiona 123 said:


> I think mine is more nerves. I have a date for my ultra sound scan 26th July at 11.45am. Why do I worry something is still wrong..Sorry what is ondansetron for. this new website is driving me mad. carnt seem to look at all posts.Fiona xFiona,ondansetron is to help with IBS D as it constipates as a side effect.It is originally used for stopping vomiting and constipates as a side effect.


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## IBSD88

How did you get an appointment with him?Is it on the NHS or is it private?


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## jmc09

It is on the NHS,just ask your GP to refer you.Their website is www.ibs-care.orgGood luck


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## jmc09

I have just begun my ondansetron drug trial and within an hour I knew I have been given the placebf course I don't know this for definite but I do know that it does nothing for me this current medication.My biggest problem is going the next 5 weeks using this 'drug' because I have already had to take loperamide to stop a bout of IBS D.They ask you to not take the drug for the last 3 weeks of treatment but this will be impossible for me.I can last 3 or 4 days drug free at a push but after that I get D.


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## jmc09

Just finished my first 5 weeks on the first drug and it did nothing for me.Having 2 weeks rest before trying the second drug.I hope this one helps.


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## IBSD88

I have often wondered how you get on these drug trials, I would be ery angry to find out I was on placebo thoughI couldnt get refered by my doc, have an appointment today with a different doc but I am not going to even try to get refered, will be hard enough getting a tweek to my current meds


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## jmc09

The way it works is that you get 5 weeks on a placebo and 5 weeks on the real drug with a 2 week break in between.Of course you dont know which way round it works so you will get a placebo at some stage.If you need to you are permitted to take your usual drugs if things get too bad.


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## IBS-D guy

I've now seen prof Whorwell and was very impressed. I've got to eliminate cereal fibre and fruit/veg for the next three months. Then it's a mild antidepressant. If that doesn't work I will try odansetron as the trials went quite well apparently.


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## jmc09

Can i ask which anti depressant he mentioned for you to try?


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## IBS-D guy

jmc09 said:


> Can i ask which anti depressant he mentioned for you to try?


Nortriptyline. 10mg each evening slowly increasing dose until effective, which will probably be between 20-40mg.


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## jmc09

Thats the exact same antidepressant he recommended for me.Please let me know how you get on with the Nortriptyline and i will let you know if i have any success too.


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## IBS-D guy

jmc09 said:


> Thats the exact same antidepressant he recommended for me.Please let me know how you get on with the Nortriptyline and i will let you know if i have any success too.


Will do. It will be about 3 months before I try as I need to try his low fibre diet first. Have you been asked to try the low fibre 'unhealthy' diet?


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## Mr 100

I've never met Prof. Peter Whorwell, but I have followed his dietry recommendations for IBS-D for nearly six months. ie Low cereal fibre and avoiding high fructose [avoiding unbalanced fructose/dextrose] etc. I combine this with a low fodmap diet and lindas calcium [half a tab after meals]I drink Clipper green tea.I do sometimes still have a little mucus after bm, but otherwise my symptoms are under really good control. I feel almost normal!Has Whorwell discussed calcium as a treatment with anyone here?


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## Mr 100

In a video from August 2008, Peter Whorwell discusses diet and IBS.http://www.videomd.com/DietandIBS-fv-2429.aspx A while ago, I followed his advice re exclusion diets and think that this is now out of date. The idea of individual food exclusions for weeks or months is clearly wasting time for many, when we consider the option of the broad exclusion approach low fodmap or paleo diets. I tried numerous individual exclusion diets to identify 'the culprit' during my early IBS time, no caffine, no chocolate, no salicilates etc etc, all to no avail, nothing made any difference. I'm sure many others have had the same experience. It seems much more effective to cut out all the potential problem foods for a while, then add them back in as appropriate, as a back test.It wasn't until low fodmap, combined with Whorwells' low fibre/low fructose that I saw a real improvement.No disrespect to Prof. Whorwell intended, and his stance may well have changed since this video was recorded.


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## jmc09

Mr 100 said:


> I've never met Prof. Peter Whorwell, but I have followed his dietry recommendations for IBS-D for nearly six months. ie Low cereal fibre and avoiding high fructose [avoiding unbalanced fructose/dextrose] etc. I combine this with a low fodmap diet and lindas calcium [half a tab after meals]I drink Clipper green tea.I do sometimes still have a little mucus after bm, but otherwise my symptoms are under really good control. I feel almost normal!Has Whorwell discussed calcium as a treatment with anyone here?


He hasnt discussed Calcium with me personally.I tried Calcium Carbonate for a few days but it didnt help but I will give it another go shortly as I believe it can take a few weeks to kick in.I'm waiting for an appointment to confirm a diagnosis of Nephrogenic Diabetes Insipidus before I start taking any more tablets.Diabetes Insipidus can be caused by Hypercalcaemia,although that may not apply to me personally but I dont want to take any chances just yet.


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## Mr 100

hi jmc09, I'm sorry to hear of your continuing problems. Do avoid the calcium until you have a specific diagnosis of NDI. I read elsewhere you were going to give the saccharomyces another try, good luck. Phil.


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## jmc09

Phil,ive tried a couple of days of boullardi but it gave me very loose morning BMs so i will stop it for a couple of days before giving it another go.Thanks for your good wishes. Im crossing my fingers that 2012 will be a better year for me.Hopefully you too.


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## IBS-D guy

Mr 100 said:


> In a video from August 2008, Peter Whorwell discusses diet and IBS.http://www.videomd.com/DietandIBS-fv-2429.aspx A while ago, I followed his advice re exclusion diets and think that this is now out of date. The idea of individual food exclusions for weeks or months is clearly wasting time for many, when we consider the option of the broad exclusion approach low fodmap or paleo diets. I tried numerous individual exclusion diets to identify 'the culprit' during my early IBS time, no caffine, no chocolate, no salicilates etc etc, all to no avail, nothing made any difference. I'm sure many others have had the same experience. It seems much more effective to cut out all the potential problem foods for a while, then add them back in as appropriate, as a back test.It wasn't until low fodmap, combined with Whorwells' low fibre/low fructose that I saw a real improvement.No disrespect to Prof. Whorwell intended, and his stance may well have changed since this video was recorded.


It appears that his stance may have changed as i was advised to cut out all potential foods (cereal fibre, fruit, most veg, caffeine, chocolate, most alcohol) for up to three months and then slowly introduce foods back in to work out which foods i cannot tolerate. If the diet doesnt work at all its on to nortiptyline


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## Mr 100

hi IBS-D guy, thanks for letting me know about the change. He should record some new vids, he comes across as a very caring doctor. Have you looked at the low fodmap diet? One could quite easily adapt the two diets together, as I have done, which means you would also consume low amounts of gluten, a known GI irritant, and very small amounts of lactose. I have made this simple by exchanging my old foods for low fodmap equivalents, eg spelt bread for normal bread, pasta made from rice instead of wheat etc. Best of luck on the new diet.


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## IBS-D guy

I'll see how i get on with the current diet and if there is no/little change after a few weeks i will follow your suggestions. Thanks.


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