Struggling. Hello. : Hi there, I’m not sure... - IBS Network

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Struggling. Hello.

AnonymousCat99 profile image
7 Replies

Hi there,

I’m not sure exactly how long I’ve had stomach issues but it’s definitely been a fair number of years. I was tested for issues a while back and they just said “it’s probably IBS” and that’s all I got, This happened after ending up in A&E in AGONY. I couldn’t pin point what was causing my symptoms as they came and went with what seemed like no real trend.

Fast forward to now and all of a sudden its back as bad as it was then, arguably worse. Was advised to go to A&E again to be told by the hospital to go away... I did get to see a GP there and he was ok but basically prodded me and told me it’s “probably IBS”. Again. Oh prodding my stomach KILLS.

I got thinking and tbh I’m in denial about IBS because there is nothing I can do... painkillers don’t work and I just haven’t figured out WHY. Since trying to loose weight and eating healthy my symptoms have been much much worse, I’m in pain for at least 2 hrs a day now. Maybe its vegetables? Maybe fruit?

But how come I have NO issue eating (when I was doing so) bread and big macs and milkshakes and chocolate etc. ??

I also get acid reflux really bad on occasion.

I thought eating healthy was good, what am I doing wrong?

Probiotics are something I’m going to start trying and some kellogs pre biotic cereal but I’m bloated and at a loss tbh.

Any advice?

Thank you.

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FRreedman profile image
FRreedman

The fact that you are in pain indicates that your GP needs to take action. If he/she is unabe to help you they should refer you to a GastroIntestinal (GI) specialist or a Gastroenterologist, either of whom will be able to take tour testing and subsequent improvement further. I am not saying you will or won't be pain free, but a diagnosis of probably IBS is a complete cop out. It is an answer that used to be given to shut a patient up and let the GP go ,on to the next hypochondriac on his list, it is now recognised to be a disease or illness that is only diagnosable when everything else has been ruled out, and this includes IBD, another diffcult to diagnose disease or set of diseases. I would write to my own GP and ask for a refferal to a GI team or Gastroenterologist for further testing as the pain is not bearable. It may be an idea to copy the practise manager in with this letter. Good luck, keep well and stay safe.

Totally relate to your issues I’ve had same problems and possibly more you haven’t mentioned. Firstly dieting especially low calorie diets no matter if you do drink 2 litres a day will still cause severe constipation even sometimes when eating plenty of fibre, so this is what my doctor gave me yesterday for fixing that - Docusate stool softener tablets. Severe abdominal lower pain if your bowel is swollen and lumpy at the very lowest point you could have Diverticulitis, this needs checking by a bowel camera scope. If you don’t think you have this, then please look at the LOW FODMAP DIET incase you have food intolerances which are causing your pain. My pain was even more excruciating when I started The Fast 800 diet because of eating foods that set me off. (However swapping them out on this diet has given me a comfortable diet, and a 19 lb weight loss in 7 weeks (no exercise). FYI I was told in 2002 by being rushed by ambulance in to hospital I had IBS but they missed my Diverticulitis! It was only picked up by a bowel cancer scope. If you also end up diagnosed with both, then do Fodmap diet first then the Diverticulitis diet omitting the trigger foods from diet 1. Oh Omerprazole tablets 1 a day cure acid reflux and aren’t harmful, this should go when you loose your weight. Good luck Hope I’ve helped you.

Sorry forgot to say the website you need is Monash University Fodmap diet

I have been on a kidney/ diabetes based diet which surprisingly has helped my IBS get better. All well and good until I get a dose of anxiety!

Just because it is healthy food doesn't make it great for IBS people, conversely the odd bad food actually can be beneficial for IBS. For instance raw onion is a prebiotic and a digestive enzyme, beneficial for taking probiotics and aiding the digestive system.

The reality for a lot of use is, we are what we eat, with an unhealthy dose of anxiety thrown in for good measure.

xjrs profile image
xjrs

Did you have both stool and blood tests to diagnose your IBS?:

nhs.uk/conditions/irritable...

If your symptoms have worsened, they should be running the same tests again. I've been re-tested multiple times if my symptoms have changed.

Here is some information about IBS that I have shared with others in this group which you find find of assistance:

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 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. 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 it 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.

Since 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-...

AnonymousCat99 profile image
AnonymousCat99

Thank you all for your comments. They have been read. Please excuse me because pain is rather bad + feeling really out of it atm.

To answer a few questions. I haven’t had any blood/stool tests to diagnose IBS the only tests I’ve had done were for Chrons (I think) and celiac disease. I also had an ultrasound as part of that. All clear/negative.

All drs I’ve seen just say try buscopan, it’s probs IBS and there’s nothing we can do for you. I probably should push more.

Thank you all. I’ll reply more properly soon. 🙂

xjrs profile image
xjrs in reply to AnonymousCat99

Sorry to hear you are in pain. If you are based in the UK there is a set protocol to diagnose IBS that the doctors should be following (link provided above). I'm not sure how they are testing for Chrons when normally this starts with checking for inflammation markers in stool samples. I've never heard of anyone getting an ultrasound for tummy troubles.

Normally it's blood/stool sample checking for calprotectin levels (inflammation markers). If these markers are elevated, then colonoscopy, if not, IBS diagnosis. If a colonoscopy is needed this diagnoses IBS vs IBD (Chrons or Colitis).

Hope you feel a bit better soon.

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