Way Forward

[Paulol]

Just curious what the medical world is doing about getting a permanent cure for IBS, are there some sort of research ongoing or we are just left to continually suffer? Are we even being heared enough?

[Maureen1958]

I touched on this with someone else a few days ago. I said I suspected research would be done in teaching hospitals by PhD students. The problem with this is they probably cover different issues and/or if they did cover similar issues they wouldn't join the dots!

[Maureen1958]

I have participated in surveys done by universities but it is usually answering set questions.

[Kdw1]

We have to just suffer i think 😒

[Rice333]

Left to suffer ..at the same time my GP has been very good & the gastroentorlogist the same, they say there is no query any time soon 🥶

[Orchid99]

Dr pimental is always looking into treatments for IBS/Sibo.

[Maureen1958 in reply to Orchid99]

Yes, and making lots of money for something which may not exist!

[Orchid99 in reply to Maureen1958]

I believe in bacterial overgrowth because I have high methane overgrowth which is in my large intestine and causing my constipation. I did a breath test with no sugar solution just a base line fasting breath and it was highly positive. I don't know about it being in the small intestine. But I do know that methane plays a part in constipation.

[Batteria]

I think you are right and I suppose embarrassment is the great drawback. I am deeply ashamed of my constant faecal soiling although I know it’s not my fault. I could posssibly psyche myself up to talk about it on television but I don’t know how my family would feel about that. What if my favourite old flame saw me talking about it? Could I do this to myself? I don’t know. However, many years ago, I saw a man on breakfast tv speaking about just such an affliction and far from recoiling I just wanted to put my arms round him. This was before I suffered from ibs myself so perhaps we are worrying needlessly. I’m glad you brought this up paulol and I would like to hear what others think. Is it time for us to challenge the medical profession and call for better instruction to general practitioners or even a faculty at universities or medical schools just for bowel disturbances? I await your responses. Con amore Bx

[Paulol in reply to Batteria]

I think an organized peaceful protest to a very well recognized health organization will create more awareness, we IBS sufferers on this platform is enough, I'm very sure there are a lot of people with IBS who are not on this platform.

[Carlettejaque]

There is a cure that I've heard of. Its faecal transplant. It takes about three faecal enamas to work completely but apparently the effcts are almost immediate. Unfortunstely, as far as i know you cant get it done here in the UK, not on the NHS. However, there might be private clinics that do it somewhere. IBS seems to be caused by the wrong gut bacteria and an over proliferation of the wrong, bad bacteria. The gut microbiome is easily affected by medications, antibiotics, stress and processed foods (unhealthy foods). Eating a varied healthy diet full of the right fibre and nutrients can cure it but if you have IBS it's not possible because of the pain that would cause. It's a vicious cycle really.

[xjrs in reply to Carlettejaque]

Unfortunately there are major risks with fecal transplant therapy (FMT) in that potentially you could pick up health problems from other people from it:

bmjopengastro.bmj.com/conte...

Gut microbiome is thought to be associated with many GI and non-GI conditions including diabetes, metabolic syndrome, obesity, colon cancer and many others. Just as FMT is being explored in its utility to alter certain conditions, the opposite could be true. At least theoretically, FMT from a donor with certain disease phenotype could potentially transmit the disease to the recipient. Data on long-term safety of FMT is lacking.....A total of 4 of the 77 patients reported a new medical condition after FMT including peripheral neuropathy, Sjogren's disease, idiopathic thrombocytopenic purpura and rheumatoid arthritis.

I believe that the moment it is only considered for clostridium difficile infection where antibiotics have failed to treat it and the patient is at risk anyway.

[Carlettejaque in reply to xjrs]

Oh, yes. You are quite right. You have to be very careful who donates and I believe that when it is done for C Dif the doner is carefully checked. But, I would risk it if i thought it would rid me of the IBS. I've seen on tv that in the U.S. some people are doing it DIY using their husband or partner as a doner.

[xjrs in reply to Carlettejaque]

Yes. I saw a similar TV program in the UK. A mother who was slim, athletic and never had problems with her weight who had C Dif, had a fecal transplant from her daughter who was obese and the mother then became obese. There seems to be a lot about the microbiome that contributes to other health factors as they say.

[xjrs]

There is research going on globally into IBS and this has been the case for decades. I believe the main issue there is no one body or funding source or individual responsible for finding a 'cure'. This means that research is ad hoc and uncoordinated. Much of the research says 'further research is needed' but there is no one to ensure that this happens. This is the same I think for all incurable syndromes and diseases. It is like a very badly run project with no one in charge to ensure that each piece of research follows on with the next and the next to ensure a conclusion is reached. There is a wealth of research talent out there globally which I believe is under-utilised.

I am currently putting together a website with what I have found out about IBS so far. I have a massive (and maybe misguided) ambition of subsequently identifying the bodies currently working on IBS and then putting together a forum where researchers meet regularly, share their knowledge, identify gaps in that knowledge, secure the funding to meet those gaps and ensure that whatever is being researched leads to direct outcomes for patients. COVID-19 has proven that research can work on a global scale and rapidly. The same approach needs to be applied to incurable diseases and syndromes to put an end to unnecessary suffering.

[Maureen1958 in reply to xjrs]

Well said, xjrs, you can do this.

[b1b1b1 in reply to xjrs]

xjrs, this is a wonderful idea!!!! b1

[bigbunbun3 in reply to xjrs]

Hi xjrs, that’s great, please keep us updated x

[xjrs in reply to bigbunbun3]

Will do.

[Decgav66]

It bothers me to no end that more research isn’t being done. I know it’s not life threatening but it is life-altering. When men couldn’t get erections, they solved that problem pretty quickly with Viagra.

[Fencinggirl]

I found this video of a discussion on IBS research that may be of interest to you. It is a couple of years old now but a lot of it still applies:

youtu.be/n4ZvU1tzccI(Not working as expected?)