Undiagnosed IBS : Hi all, I have always suffered... - IBS Network

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Undiagnosed IBS

Help_please profile image
7 Replies

Hi all,

I have always suffered from stomach issues especially after eating but never in the form of diarrhea usually just gas and bloating. I started taking 20 billion probiotics capsule everyday for the last 4 months to help With the stomach pains etc, shortly after starting them I became really anxious due to Covid as I really suffer from health anxiety and worry I have all kinds of issues if I get the slightest pain, i recently stopped taking my probiotics as I didn’t feel they made much difference, however it’s been 2 weeks since stopping and I’ve had diarrhea everyday since which happens after I eat and I have about 10 seconds to get to the toilet which as you can imagine is stressful and causes me so much anxiety when I’m out or at work so I avoid eating. I was told months ago it could be IBS by the doctors but they only gave me blood tests which came back normal and since then due to Covid I can’t even get a doctor to call me they keep telling me to contact pharmacy who then tell me I need IBS investigating by GP so I’m stuck in a vicious cycle. Do you think it could be a change in my ibs symptoms or could it be the probiotics leaving my system? Just looking for some help to put my mind at ease really! Thank you to anyone who replies 😊

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Dalph87 profile image
Dalph87

Sounds like IBS, if the blood test is normal theres a good chance its that.

I have IBS too, symptoms can fluctuate, sometimes it can cause diarrhea, other times constipation, sometimes just pain and bloating, can also cause headaches and even tiredness.

Once my doctor said: You can have IBS from the top of your head to the bottom of your feet. It's a very individual condition.

Do you sleep at night? If you sleep well then high likely its still IBS. The colon sleeps at night and if its nothing organic, you likely wont have any night symptoms (although some IBS sufferers do have them, and need additional testing to rule out more serious conditions, like IBD).

I do always sleep well and thats a good clue I only have IBS.

Help_please profile image
Help_please in reply to Dalph87

Thank you for your response. I do sleep well although when it first started it woke me up during the night which is why I thought it might be probiotics. How long do these flare ups last for? I had it for 6 days and have been taking Imodium the last 2 worried that when I stop taking it’ll come back and it says only take for 48 hours!

Dalph87 profile image
Dalph87 in reply to Help_please

Depends, for some people days, for some other weeks, and for some even months at a time! I even heard of someone having it for 1-2 years nonstop!

For me last one was 3 months although not so bad, mostly just pain caused by excess air and sensitivity to some foods, its really is individual so I cannot give you a good answer.

In my case its usually 2-4 months but I never have symptoms at night and always sleep well. Some years I get it, some years I don't.

Yeah dont overdo it with probiotics if you see no benefits, eat food to make stool more solid and calm diarrhea (like bananas).

in reply to Dalph87

Hi I have had pain/cramping for nearly two months now. Do you get pain and cramping just above waist

Dalph87 profile image
Dalph87 in reply to

It can happen anywhere in the digestive tract, for me its usually far below the belly button or on the right but can move around (it's air after all).

Help_please profile image
Help_please in reply to

Hiya, I do get pain there but it usually shifts to the left or right hand side of my lower abdomen. I’ve had pain and cramping for about 2 years and find it’s worse after eating bad fatty foods and a lot lighter when my diet is good

xjrs profile image
xjrs

Proper investigations should be carried out by your doctor. If you are in the UK there is a set protocol for diagnosing IBS (not just blood tests - also a stool sample test):

nhs.uk/conditions/irritable...

You could ask them to post the stool sample kit to you and you could kick it to one side for 72 hours before use and even drop it off outside and phone reception to pick it up.

You could read out the above information in the link to your surgery and insist on proper testing and tell them that the pharmacy said that you need this too. If you're not getting the right support you could make a complaint to the PALs service:

nhs.uk/common-health-questi...

In the mean time assuming you have IBS (but to reiterate, nothing should be assumed, although to put your mind at ease most people will come back with IBS, but better for you to know this for sure to stop you worrying), here is some information about IBS that I have shared with others in this group in case any of these tips are of interest to you:

IBS can be due to a number or combination of factors - these can be stress (including stress from early life experiences) which impacts the communication between the brain and the digestive system. There are lots of free webinars online at the moment regarding mindfulness meditation which might help. Plus you can ask to be referred for CBT or something similar to reduce your anxiety - I would have thought online appointments are available. Exercise can play a major role in IBS in terms of reducing stress, helping your gut microbiome and regulating bowel movements.

There is also not absorbing certain types of carbohydrates called FODMAPs very well, the residue ending up in the colon and bacteria feeding off them causing symptoms. Ordinarily feeding gut bacteria is a really good thing - when you feed good gut bacteria these produce by-products that have great health effects in the gut and throughout the body. However, in some people with IBS bad bugs might have the upper hand over good - these bad bugs may cause symptoms such as excess gas, pain or disordered bowel movements. There is an interesting infographic on this here:

gutmicrobiotaforhealth.com/...

This is why it’s worth trying probiotics such as Alflorex (which has been scientifically studied for IBS) or Symprove to crowd out the bad bugs and make their numbers die down. Note that not all probiotics are the same. Alflorex worked best for me. If that doesn't work you can try the FODMAP elimination and reintroduction diet. This is normally under the guidance of a nutritionist via GP referral - this may not be possible at the moment so you can read about it online. If you download the Monash University FODMAP app and Kings College fodmap apps, they will tell you which foods contain FODMAPs and in what quantities. You can eliminate all FODMAPs for 2 weeks and then introduce each type of FODMAP one at a time starting in small quantities, increasing over a 3 day period and wait up to 4 days for symptoms. I go much slower than this - only introducing a small amount (1/4 to 1/3 of a normal portion size) of the same food for 3 days and then increase if tolerable or no symptoms and cut back to the previous amount if symptoms for longer and then try to increment again . I've read your microbiome can adapt to handling a new food if introduced very slowly and your bad bugs are under control with a good probiotic. Ideally you want to eat as many FODMAPs as you can since they are good for your health. Many people with IBS don't have diverse gut bacteria - it has been found that people who lack a diverse microbiome are more prone to diseases in general. In the long run, if you can get your symptoms under control, the ideal situation is to have a very varied diet - lots of different coloured fruits and vegetables, a variety of protein and carbohydrate sources including cereal fibres. This may seem a long way off, but with the right treatment all of this is possible. Last year all I could consume to control my IBS was white rice, protein and limited low fodmap veg. Using the approach above (particularly introducing Alflorex) I am now able to consume far more foods - more than I've ever dreamed of including wholewheat bread which is unheard of for me.

If you are also suffering from pain, you may be suffering from visceral hypersensitivity (functional abdominal pain) - there is info about it here:

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

It 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, but this can be helpful in people who are diarrhea dominant. Unfortunately I couldn't tolerate these. Linaclotide (for IBS-C only) & Alflorex have helped me with this intestinal pain.

You may also find assistance with anti-spasmodic medication such as mebeverine (Colofac) or enteric coated peppermint.

You can find some info on self management here:

theibsnetwork.org/the-self-...

If all of the usual IBS remedies fail and you are experiencing diarrhea, it is worth getting tested for BAM (Bile Acid Malabsorption), which can cause constant diarrhea - there is a separate test and treatment for that. Good luck.

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