Really struggling and confused - please help.

[Chancery]

Hi, I'm suffering from what I dread is going be called IBS - if my doctor can be bothered to give it a name at all. I've had generalised moderate to severe gut pain for around two months now, and I have it 24/7. My chief symptom is gut pain right across my upper/middle abdomen. It kind of feels like food poisoning without the vomiting/dia'. As far as I can tell, and I'm guessing in the dark here, it seems to be wind that's causing it.

My gut doesn't move. Food goes in but it just kind of dies in there. It's very, very rare that any noise comes out my gut. Food just seems to go in and sit there till gravity makes it go through me, because it doesn't seem to be digesting that well. I am generally constipated and have been for many years, with it steadily worsening. This is despite a high fibre diet for the best part of my life - it just doesn't help.

At first I went low carbohydrate in an attempt to fix this and cut out wheat. That seemed to work for a while but then it just seemed as bad as ever. Then I tried the FODMAP diet, but because I also have bad oesophagitis at the moment (I know, I'm really lucky), I have to restrict a lot of foods to help that. Combining those restrictions with FODMAP dieting was too difficult so I allowed some fruits (like persimmons & mangoes) and left dairy in, because I don't think I have lactose problems. That didn't work either. So now I've gone full FODMAP and removed all forbidden foods In a desperate attempt to help this.

I haven't really got on with oats since I developed gallstones a couple of years back, and removing my gallbladder didn't help that, but the FODMAP diet says oats are fine so I took their word for it and had them this morning. Subsequently I've been in the worst pain I've had in ages today. I don't know if it was the oats or not; in fact, I don't know anything for sure. That's the problem; there seems to be no real pattern to this. The only things that are consistent is having a bowel movement makes the gut pain worse and passing wind, which is well-nigh impossible, helps - if enough manages to exit my body.

I'd be really grateful if anyone has any ideas as to what could be the problem here, and I'd love to know if other IBS sufferers have problems with oats, because they sure don't feel ok to me!

[MaggieJemima]

Cook oats longer and add some probiotic yog,prunes or figs all cooked long time

To remove wind liquorice and mint infusion ,ginger tea or the gran method,whiskey or brandy with hot water and a little sugar

[Chancery in reply to MaggieJemima]

Ah, these were raw, Maggie, eaten like muesli with berries and rice milk - still no end of bother though. I have to say that cooked don't sit any better with me. Whatever is in oats really doesn't seem to agree with me...

[gfmum1]

I feel for you, you must be desperate and the apathy of the GP is, sadly, a scenario most of us are familiar with.

A couple of suggestions: try a different GP although it may take several attempts before you find one who is prepared to take you seriously. The other suggestion is that ordinary oats don't suit everyone - I can't tolerate them, and buy gluten free ones which I'm fine with.

I hope you find some relief soon.

[Chancery in reply to gfmum1]

Thanks, gfmum. I actually DID wonder about that - if it might be the gluten, but all my coeliac tests keep telling me I don't have a gluten problem - they should try eating oats with me! I think I'll invest the money in a pack of gluten free and see if they are any more tolerable.

[gfmum1 in reply to Chancery]

All the coeliac tests came back negative for me too, and even a dietitian told me the problem must be wheat, it couldn't be gluten, but I can't tolerate spelt flour either, which contains gluten but isn't wheat. There are a number of other supposedly fodmap-friendly foods I can't eat, including most salad veg.

That's a long-winded way of saying everyone's different and if you think you've got a problem with gluten, try avoiding it for a while & see if it helps.

[Hidden in reply to gfmum1]

I beg to differ, but spelt is wheat. If you google it wikipedia comes up and tells us that it is a species of wheat cultivated since 5000BCE.

[gfmum1 in reply to Hidden]

You're quite right - by coincidence, I only discovered this myself today whilst reading a cookery book & was going to post a correction to my earlier comment but you've beaten me to it

Now I'm wondering if my problem really IS wheat after all!

[Chancery in reply to gfmum1]

Yeah, that seems to be a general thing, gf, that everybody has their own pet intolerances. I have a couple of things that are allegedly fine on FODMAP, like bananas, that can be really dodgy for me. If a banana is even slightly less than brown and spotty and good and ripe, they give me terrible indigestion. Although, of course, that could be my GERD, not IBS! It's an absolute minefield. I took your advice and put a pack of gluten free oats on my Waitrose order. I shall be very interested to see if they sit any happier.

[gfmum1 in reply to Chancery]

I do hope you'll be okay with them. Yes, it really is a minefield!

[Cazacat]

Oats give me pain and spasm so I cut them out and was fine for a long time. Some people do have problems with them, there is information online. The FODMAP diet didn't identify anything for me and did include foods I know cause problems. Someone on here recommended a book called Irritable Bowel Solutions by Professor John Hunter and I recently got that. In it he helps you to identify the causes of your problems and it turned out my low fibre solution was pretty much identical to his diet for malfermentation. Things do change however and I developed reflux and excess stomach acid which seemed to make everything worse again and is now being investigated.

[Chancery in reply to Cazacat]

Thanks for that rec' Cazacat - I shall look that up this evening.

[ElkaAnn]

I suggest reading this book "A New IBS Solution: Bacteria-The Missing Link in Treating Irritable Bowel Syndrome." amazon.com/New-IBS-Solution...

Dr Pimentel at Cedars-Sinai Hospital has been researching SIBO as the cause of IBS. It is Small Intestine Bacterial Overgrowth. This is when bacteria travels up from the Large Intestine (where it belongs) into the small intestine where it doesn't belong. Then when you eat carbs -- the bacteria feeds on this and produces gases. This is what causes the bloating, pain and other IBS symptoms. Dr. Pimentel has created a protocol and has found that most IBS sufferers get better on the protocol.

You can read an interview with him here or listen to the interview:

chriskresser.com/sibo-updat...

I am using herbal antibiotics rather than pharmaceutical antibiotics to help treat this.

They talk about that in the interview.

The herbal antibiotic protocol I am following from "The Sibo Solution."

hollywoodhomestead.com/sibo...

[Chancery in reply to ElkaAnn]

That's great info, Elka, many thanks! I've downloaded the Kindle sample and I will read that this evening and have a look at the video. The FODMAPS diet isn't helping thus far, but I'll keep going anyway. Thanks again!

[ElkaAnn in reply to Chancery]

You're Welcome! It's a long journey. So be patient! I have to keep telling myself that too!

[Chancery]

Yes, Pandora, absolutely. Looking forward to hearing from you...

[Cazacat]

My IBS is more IBSD and I think this means my low fibre diet could make your symptoms worse. If I get constipated I increase fibre, but that doesn't happen often apart from now when the meds for the stomach acid have slowed up everything. Now I am eating plenty of veg and whole meal bread, to try to keep things moving. The oats problem could be intolerance. I do recommend the book as it can help work out possible solutions for you. Can you try a different doctor in your practice? Have they done the usual tests?

[Chancery in reply to Cazacat]

Hi Cazacat - sorry to have taken so long to get back to you. I ordered the book you recommended last night - thanks again for that. I had a look at the Kindle sample and it looked very interesting so I went for it.

I went to the docs today and discussed my symptoms with him. Ironically, I got very bad dia' today for the first time and I suspect it's because I stopped taking Sucralfate tablets last night - I think they may have been disguising the fact that I've actually had dia' all along (since the doc put me on Movicol, that is - well constipated before that!). He think it's Omeprazole that;s causing the sudden runny gut, so he's taken me off that and put me on Ranitidine. Not sorry to be off Omeprazole, which I think is an awful drug, but I think Ranitidine is an H2 receptor blocker so not sure I've really gained anything here!

As for tests, I brought up having a SIBO test as it strikes me as the most likely culprit, but he'd never heard of it so he's gone to look it up. It occurs to me that I have no idea if the NHS does the test - I know it's considered a controversial diagnosis - so this might just hit a brick wall. I don't know well enough yet what tests to ask for, but my doctor did exactly as I expected and treated IBS as a final diagnosis and seemed to think it was ok to stay on the FODMAPS diet forever as a solution. So not having that. Very depressing....

[Cazacat in reply to Chancery]

Hi Chancery. I am on ranitidine becuase of my excess acid and it did also stop the sudden diarrhoea I had been experiencing, so I hope it does the same for you. I found it took a couple of weeks and then everything slowed down. Interesting what you say about Omeprazole, I took it for a month right at the start of having acid reflux, I didn't think it made any difference to my indigestion which just has got progressively worse as has the diarrhoea, until the ranitidine which I was put on when I developed gastritis more recently. Now waiting for a gastroscopy.

I agree though that the FODMAP diet isn't supposed to be used long term. It might be worth emailing Dr Nick to get more advice what tests to ask for. Meanwhile I hope you find the book helpful.

[Chancery in reply to Cazacat]

Dr Nick???

[Cazacat in reply to Chancery]

Sorry yes he is on the IBS Network and members can email him

[Chancery in reply to Cazacat]

Ah, thank you. How do I go about finding him - can I search for his user name somehow? Also, right now, my dia' has come back with a vengeance. I'm shivering and aching here. Do you have any suggestions for a good tea for this? I'm not allowed fennel or chamomile on the FODMAPS diet, and I can't drink peppermint because of the GORD. Any suggestions? I really need to heat up and try and soothe this. I feel like I have food poisoning!

[Cazacat in reply to Chancery]

I only drink hot water, no teas at the moment for similar reasons.

if you are a member of the IBS Network under the tab for Member Section the top of the drop down is Ask Prof Nick so click on that and it will take you to the page where you can submit questions. I hope you feel better soon.

[Chancery in reply to Cazacat]

I was really confused there because this forum is called the IBS network so I was all over it, but I still couldn't find it, but I put 'ask prof nick' into the search and I've discovered it's a separate site, same name - so problem solved. Thanks very much for that info - I very much appreciate it!

[MaggieJemima in reply to Chancery]

Liquorice

[Chancery in reply to MaggieJemima]

Thanks, Maggie, the dia' has finally abated, I'm pleased to report. Coincidentally, I do use liquorice tea (for GORD), but I can only take one cup a day as it gives me the most terrible restless legs and keeps me awake at night. I don't have a clue why!