Hey guys, relatively new to all this and joined this forum tonight. Spent a bit of time reading through some posts and already learnt a lot so thought I'd share my experience and see if there's anything else I could be doing?
I think my story starts in April 2019, I went on a course of Isotretinoin for my severe acne. They are strong with a lot of side effects but in December I finished my course and my skin was amazing. Obviously very happy but 2 weeks later I developed stomach cramping and changes in stool frequency and habit. I usually get ill over the Christmas period so I put it down to a stomach virus or a bug.
Nothing changed and I had a range of symptoms, some days very loose stool, some days very little, started taking buscopan for my cramping which helped a little and then stopped working.
Few 111 out of hours visits with anxiety surrounding it all, blood tests with Coeliac screen came back normal and a recent stool sample came back normal as well so no apparent IBD. Doctor has put it down to IBS but no official diagnosis because of Covid so no one will see me.
Throughout all this my anxiety has exploded, I've always had some sort of toilet anxiety, I have an irrational fear of being sick and associate bowel issues with stomach bugs etc ever since I was a teenager (I'm 32 now).
My current situation: I sleep all night without any issues, I wake up and have a bowel movement without 30 minutes of waking up, some days I feel absolutely fine after that, other days I feel like I've never quite finished going. I suffer with a lot of wind however I'm at the point with my anxiety now that I find myself tensing my buttock muscles and my anus to stop myself from passing gas as I'm scared it will be more than just gas and I am struggling to tell the difference.
Some days I have 2 bowel movements, some days 3 or 4, at the moment they seem quite well formed, normal shape and colour, just a lot more than I would normally pass. Anxiety has reached a point where I cannot feel comfortable at all, sometimes I feel like I need to pass stool when really it's either wind or nothing, I'll rush to the toilet only for nothing to happen. I get anxious leaving the house, me and my girlfriend went for a walk today and had to cut it short because I got anxious that we were nowhere near a toilet and that I might need to go.
I'm a driving instructor and am currently unable to work because of social distancing rules. I'm terrified that when I go back to work I'm going to be an absolute mess because of the toilet anxiety situation.
I've emailed a dietician tonight as my GP wants me to try FODMAP, I found a free app on my phone but I can't get my head around it so think I need guidance. I'm currently taking prescribed Mebervine and activated charcoal tablets although nothing really seems to work.
Sorry for the long post, I'm at a bit of a loss with all this and am really struggling mentally with it at the moment, lockdown isn't helping but I just want some relief from it all. If anyone could recommend anything, is FODMAP a beneficial venture or just to share a similar story I'd be really appreciative. Thank you!
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It does sound like ibs yes. I am also going through something similar as sometimes after a bowel movement i feel its incomplete and need to go again in a hour or so. I pretty much feel incomplete all day and sometimes after eating i get the sudden urge to go. Have you pushed your gp for more tests?
Hey thanks for the reply, my GP has asked me to try FODMAP for a month to see what happens and by then gastroenterology referrals should be up and running again so I could get more tests from there.
If you have IBS, I would suggest your symptoms were aggravated by anxiety,, and even if you don't have it, you are riddled with anxiety. My suggestion, therefore, is, in order to reduce e anxiety about working with your bowel habits problem, do some driving about, on your own, or with a friend, and make notes of hotels, petrol stations, fast food restaurants, betting shops and even pubs. All these places have toilets for the public to use (you may have to make a small purchase in some).
As far as the fodmap diet is concerned, I would seriously wait until I could speak to a dietician, but, in order not to waste time, I would suggest you keep a food and consequences diary. Write down what you eat, how much, and note how you felt with regards to pain, BM consistency and frequency.
Finally, do not drink alcohol or fizzy drinks, and do not eat peanuts, sweetcorn, Brussel sprouts or baked beans. Only eat small mouthful of food and chew everything really well before swallowig. Remember, it is important to drink at least 2 litres of water per day, and walk briskly for one mile each day. Good luck and stay safe.
Hello, have you considered anti anxiety medication to help relax a nervous gut and your nervous thoughts around toilet issues leaving the house?
They are prescription drugs so may want to fully describe your situation to GP to see which suits your purpose and have standby anti diarrhoeal tablets to take when required.
Just to say, my stomach problems started with a classic tummy bug, that didn't seem to go away, left me with a lot of gas and pain etc, I also associate bowel problems with being sick and am terrified of that too.
I just became fearful of going to the loo in case it was going to be loose, that might mean I had a bug, my fear of it got out of control and my symptoms stayed.
The stomach is probably the first to react when you are fearful. You should go to Anxiety. com and listen to Jim Folk's story, it will help you to stop worrying, being fearful, it will help to calm you, and then your tummy will calm down too. You might be able to find his story Just by googling his name.
I still get the odd bad time, but now I understand how it all works, I'm so much better.
Hey thanks for the reply, I found this really helpful and actually eased my anxiety knowing that it wasn't just me in the same boat. I'm planning on heading to the anxiety website tomorrow and listening to the story.
I gained access to my medical records for a car insurance thing a while back and found that when I was 8 years old I had the same toilet fear based anxiety and it gradually passed so maybe it's a reoccurance of that? Something to explore with a combo of anxiety and dietician maybe? Thanks
Let me know if Jim Folk's story helps you, I think it will.
Funny you should talk about symptoms when you were young. I too always suffered tummy ache and constipation when ever we went anywhere, I think it was nerves even then! Maybe it's just our make up, if it is then calming down is bound to have an effect. Good luck
Hi. I was told for years I had IBS. I tried fodmap, cutting wheat, dairy. Nothing made a difference. Few years ago I started going multiple times a day and I felt sick and occasionally was sick. I finally got referred to a gastro who did a colonoscopy which was clear and other tests for coeliac and chrons, stool samples. Al clear. Then they did a sehcat scan and it confirmed I had bile acid malabsorption (bam for short) also called bile acid diarrhoea or bile salt. Anyway I now take a binder med which has stopped the diarrhoea. Have a look at the bad-uk.org website for details on the condition. It’s very misdiagnosed and my doctor actually apologised to me when I had it confirmed as she didn’t know much about at all. The malabsorption part has made me severely deficient in many vitamins so I now have to take lots of prescribed high strength vitamins and injections too.
Hey there thanks for the reply, I've heard of BAM when doing my IBS research so I think when I get access to gastroenterology referrals again I'll push for some more tests. Thanks
Should also add. The reason they say fodmap is to eat bland and reintroduce to figure what foods trigger your symptoms. I can’t eat anything fatty, even good fats like nuts or fish. Red meat, Onions, garlic, beans, eggs, caffeine (so coffee, coke) all a big no no. It took me a while to figure out but I kept a good diet.
Hey thanks for the reply, cutting out gluten has certainly helped with my normal stool consistency, I switched to gluten free bread and pastas. However, the increase in fibre from these gluten free products is making me pass stool more often aha. I'm speaking to a dietician next week so hopefully will get FODMAP guidance and support.
Sorry to hear you've been struggling. Just to reassure you in terms of IBS you symptoms are relatively mild compared to some people with IBS. For example, you say "Some days I have 2 bowel movements, some days 3 or 4, at the moment they seem quite well formed, normal shape and colour" . A 'normal' frequency is between every 3 days and up to 3 times a day, so sometimes you are in the normal range. In terms of form most people with IBS are either very constipated or have diarrhea or swing between the two for lot of the time. Incomplete evacuation and gas can be signs of IBS.
Here is some general advice about IBS I have shared with others:
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. 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. 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.
I see that you are also suffering from pain/cramping. You may be suffering from visceral hypersensitivity (functional abdominal pain) - there is info about it here:
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 & 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.
Hey thanks for the reply. This is superb resource so will be working through some of these. The thing that has struck a interesting tone with me is the potential of stress from earlier life experiences, I had a bout of toilet fear anxiety when I was 8 and it seemed to pass, maybe it's a recurrence of that? Definitely something to investigate. Thank you
Sounds like FODMAP is worth a look and ideally with dietitian support. I did it two years ago and it works for me.
Stress is almost certainly a feature for GI problems, even for people without IBS. I found that fodmap gave me a sense of being back in control. And that eased off the stress quite a lot, so dietary change works on the mental aspects too.
I think someone mentioned the Monash App, that is really good. I also found keeping a food and symptom diary helpful, there is a good one called Tummi FODMAP that has the fodmap system built into it.
Hey thanks for the reply, I'm speaking to a dietician next week for FODMAP support so hopefully that will help being in control sounds wonderful so I'd like that. Thanks again!
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