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Discussion Starter · #1 ·
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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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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Discussion Starter · #3 ·
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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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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Discussion Starter · #5 ·
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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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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Discussion Starter · #7 ·
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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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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Discussion Starter · #9 ·
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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Discussion Starter · #11 ·
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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Discussion Starter · #12 ·
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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Discussion Starter · #14 ·
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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Discussion Starter · #16 ·
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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Discussion Starter · #17 ·
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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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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Discussion Starter · #19 ·
Fiona,ask about the ondansetron trial yourself,it surely can't do you any harm could it?Good luck
 

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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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