IBS just been diagnosed

[Roset16]

Hi. After years of tummy trouble my doctor has diagnosed IBS as the condition that I probably have. I also have a variety of food intolerances that have increased over the past few years, so Feel a bit overwhelmed with the days ahead and what do I do to help myself. Thanks for letting join this network and learn more.

[Hidden]

Being told we have IBS is a convenient term for not knowing what we have. It is not a disease but a bunch of symptoms medicine has never figured out. Hence it is very difficult to treat not knowing what to treat. The best that can be done is to try and treat the symptoms you have in anyway that eases the discomfort you experience. There are the usual things to try like fodmap, gluten free and lactose free and as you have found, eliminate the foods that cause you problems. Sometimes none of these work and then there is anxiety which can be a major factor with IBS.

Keep at you're Drs and find a good dietitian for guidance. Keep a diary of anything you ingest, what the reaction might be, how you feel and the time. This is the way to help the Dr's and dietitian get a better understanding of what is happening with you. I usually do a print out for the dietitian each time I see them so they can take it and study it for any modification they may suggest.

Cheers

[Roset16 in reply to Hidden]

Thanks for your comments. My doctor is the person who said 'its probably ibs' and said nothing more. The locum I saw last week agreed with this and his advice was to use the Internet to check IBS and the fodmap diet. So I am doing my research . Would a doctor normally refer to a dietitian or do we individually sort out our own problems by trial and error. The fodmap elimination plan makes sense to me, so I will try that approach first, and also glad I have found this network. Thanks again.

[Hidden in reply to Roset16]

I asked my Dr to refer me to a hospital dietitian and to gastrology department. As luck had it I wound up with professionals that cared enough to try and help, after being told I had to live with it. The dietitian helped me sort out my diet and constantly made changes as we went. I'm still under both and no further along with the IBS. You soon learn what to eat or drink and what not to touch. I tend to stick with scientific proven evidence, although I tend to research everything and make my choices as to what to do. Because everybody is different and what we can tolerate there is no hard and fast fix for all. Inevitable you end up going with what suits you best. Because of this the solutions are many and varied with no fix that I know of yet!

I have gone from eating normally to starvation and back several times over the last ten years, it is a constant cycle with me. Not helped by finding medication for other health issues causing some major problems overlapping the IBS issues. For me just when I think I have it licked I find another food/medicine I'm intolerant of, and the struggle goes on.

One thing you can't do is let it rule your life. Keep fighting it as there is always hope, despite the moments of desperation.

Cheers

[Roset16 in reply to Hidden]

Thank you for your comments. It really helps to hear about the ‘rollercoaster’ of this syndrome. It confirms the condition has been with me over a number of years and has only now been properly recognised, once all the testing has been done. As one doctor said - once we have eliminated a variety of possible causes for the conditions I have the probable diagnosis is IBS.

I also like your last comments, sets the aim of getting on with life around the learning curve I am now on.

[Hidden in reply to Roset16]

The most difficult part is when you come to the end of your journey and nothing has changed. You are a lot wiser on how your body functions and reacts to what you ingest, but still the medical fraternity persists with their assumptions and pressure despite the obvious.

You could say I have had a day of BS from them. They become focused on medicating and mitigating despite what it is doing to my stomach. Of course the pressure is always justified with "it is your choice", like I have a choice if I want to be comfortable!

I'm convinced they have no concept of just how painful and uncomfortable living with IBS can get.

[Roset16 in reply to Hidden]

I understand that a bit more now but my doctor didn't mention any help or medication. A locum said use my computer, it was also suggested I pay for food intolerances testing to eliminate foods.... all a bit confusing, but I feel a little clearer now.

[Viklou]

IBS can only really be stated if the tests have ruled everything else out. To confirm this you need blood and stool samples as these will indicate infection or inflammation. If there is a positive test you may be referred to a Gastroenterologist for further testing such as endoscopy, Colonoscopy, ct or mri scans to see if there is anything causing the problems you have. The fodmap diet should be followed under medical guidance as it is quite restrictive.

[Roset16 in reply to Viklou]

Thank you for your comments. Tests all ok and state normal. I was advised by a doctor to research the Fodmap diet by myself and use it….. but I realise this cannot be a long term eating plan. Thanks again.

[xjrs]

I agree with Viklou . IBS isn't a probable diagnosis. It is a definitive diagnosis after other things have been ruled out through blood and stool sample tests. Have these tests been conducted?:

nhs.uk/conditions/irritable...

Assuming all of these tests have been completed and having done lots of my own research into IBS, I would do things in the following order:

1) Many people's IBS is due to a gut bacterial imbalance (too many bad bugs in the gut dominating) causing food intolerances and pain. Firstly I would try a well studied probiotic on a 3 month trial - Alflorex worked best for me and has been scientifically studied for IBS. It helps to digest complex carbs, reduce gas producing bacteria in the gut and helps to fight off the bad bugs bringing microbiome more in balance. It may make you tolerant to a wider range of foods.

2) Alongside you could try the Nerva gut directed hypnotherapy app, since stress is often a trigger for IBS and it can help calm things down.

3) You may have some remaining food intolerances after taking Alflorex. You can discover these via a dietitian referral from your GP and following their guidance on FODMAP elimination and reintroduction. I would 100% say to not try this in the first instance, since all you are doing is reducing feed for the microbiome - this stops feeding the bad bugs, but it stops feeding the good bugs too, which in the long run makes IBS worse. You want to try and improve your tolerance to foods using a good probiotic and eat as many FODMAPs as possible, otherwise your diet could end up being more and more restrictive as time goes on, which is what happened to me,

4) If a 3 month trial of a good probiotic makes your condition far far worse, you could talk to your GP or gastro (and no one else - there is an industry based on this) about the rare possibility of SIBO (small intestine bacterial overgrowth).

Good luck.

[301246 in reply to xjrs]

After being told I have IBS 'C for 6 years, seeing numerous professors of Gastro and IBS, I was told last week that I do not have IBS but CCAP (Chronic Consistent Abdominal Pain)!No treatment, it's something I have to do myself by turning down the pain in my head and start to do a bit more than I'm doing. Teeny weeny steps which will take a long time. Having constant pain did make me think whether it was IBS.

Distraction is the best, watching Netflix and using YouTube meditation for chronic pain. Very scary but we've booked a cottage in Brixham next week overlooking the Quay so hoping the change of scene might help. It's still an horrendous nightmare.

Hope all is not too bad with you

[xjrs in reply to 301246]

I'm wondering whether this link may help you?

iffgd.org/lower-gi-disorder...

I was diagnosed with IBS-C and such pain. There are things that can be done! It isn't necessarily all in the head.

The type of pain you are talking about is where the brain interprets the normal activity of the bowel as pain - this is due to a wearing down of neurons in pain control centres of the brain which can be caused by PTSD, neglect or abuse in childhood, extreme stressful events etc. The first line treatment is nerve pain agents such as low dose amitriptyline. There is a theory that being on something like amitriptyline for 6-12 months can help the pain control centre neurons to regenerate. Note that amitriptyline can cause constipation (which won't be helpful for you!), but this can be helpful in people who are diarrhoea dominant. Unfortunately I couldn't tolerate these. Linaclotide (for IBS-C only) & Alflorex have helped me with this intestinal pain. You may find these both useful too. When I took Linaclotide it reduced my pain by 50%-60% after the 10 weeks needed to get to full effects. When I added in Alflorex, my pain reduced to zero and I could tolerate a wider range of foods.

The reason why Alforex can help is that it is a probiotic that has been scientifically studied for IBS. If there is a gut bacterial imbalance with some bad bugs dominating in the gut (which is true for many IBS sufferers), these bugs can oversensitise intestinal nerves causing pain. Alflorex can help kick these bugs into touch.

Therefore the pain can be a combination of brain to gut communication and gut to brain communication. The Nerva gut directed hypnotherapy app might be helpful for the former and Alflorex for the latter (in addition to Linaclotide on prescription since it helps to calm intestinal nerves).

Have a lovely time in Brixham

[301246 in reply to xjrs]

Thank you xjrs, I look forward to reading it. Since the diagnosis last Wednesday the pain has become worse! I feel I'll end up in a psychiatric ward. Let's hope the change of scene will help, we've booked a cottage overlooking the harbour. Poor aged husband does all the work in preparation for The holiday. Best wishes to you and thank you once again. Cx

[xjrs in reply to 301246]

Sorry to hear that, but the cottage sounds magical. Hope you enjoy it.

[301246 in reply to xjrs]

Thank you so much.

[Roset16 in reply to 301246]

Sorry to hear this, best wishes for a pleasant stay in the cottage. By comparison I am not too bad, but as you know some days much worse than others. Bless you.

[301246 in reply to Roset16]

Thank you so much. It will be nice to have a change of scene especially by the sea

[Roset16]

thanks for all of this advice. I was planning to wade into the Fodmap diet, as best as I could, more or less as my doctor suggested I go online and research it, plus anything else I could find on IBS.

It left me a little alarmed at the amount of information, food to avoid/ eat, advice, recipes….. etc. that’s when I remembered Healthunlocked and wondered if there was a forum for IBS. I feel a bit calmer now having read how we each have to work out our own solutions within the condition.

Thanks again for your breakdown of your journey. I can see how I might have ended up eating very limited or small amount of food, as I have these first few days.

Much appreciated 😀

[fodder4me]

Hi Roset16, I am in Australia also with ibs. I have been following the fodmap diet for over 8 years. I have downloaded loads of information about which foods are meant to be more easily tolerated for us. IBS information etc. Each county has different ideas on tolerances and foods. So try to hone in on information that is applicable to the UK. I was following things from the US, Australia and the UK finding that one country would say that was ok and another on the high fodmap list. Very confusing and frustrating. I then met someone who told me to download the 'Monash university fodmap app to my phone. (Cost approx 5 pounds for life) This has been the best food guide. Ok, developed here in Melbourne Aust. It is now used widely throughout the world and highly recommended by the NHS. (You can change the settings to Uk foods) This will give you 'safe' serve sizes of foods they have tested. There is a huge variety of foods tested, and more being added all the time. Also consider that there could also be chemical sensitives.

I also belong to a facebook group called 'Everyday Nutrition' in Australia. I am sure you might find a fb group in the UK which may help you. Good Luck in your ibs journey - it will get easier.

[Roset16 in reply to fodder4me]

Hi. Thanks for this information. A few years ago I studied mindfulness course with Monash University. It was excellent,, so I will definitely look at the app you suggest. It sounds more detailed and useful compared with the others I have been researching. Thanks again.

[fodder4me in reply to Roset16]

Good Luck, you are not alone.