Struggling with IBS D : I’ve been lurking on... - IBS Network

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Struggling with IBS D

Mush83
Mush83

I’ve been lurking on this forum for some time now and finally decided it was time to post.

I’ve noticed that some people give background so will do this; I lost around 7 stone in weight (through calorie counting & exercise- only mentioning to rule out dumping syndrome from gastric band) 6/7 years ago then promptly feel pregnant with my 3rd- my problems started when I started a new job after maternity leave. At first it would be once every couple of months I’d have urgency a few times a day, mostly when stressed, which would last a day or two. Last year this became more regular and after bloods, stools & an ultrasound the doctor diagnosed IBS and advised prescribed meverine.

Since then there seems no rhyme or reason for attacks, very little time between them and it’s affecting my life big time. Since a near miss in June where I just about made it to a bucket in a shed it seems to have taken over my life completely. I’ve recently been put on Amitriptyline (low dose) by my gp to try and help and have been on those for almost 6 weeks now. She has also repeated stool tests (normal) and referred me to a dietician for FODmap which I’ve been trying to follow as best I can myself but it has led to weight loss. My first appointment with them is in 3 weeks which I am relieved is a telephone appointment otherwise I’d be worried about the journey.

We recently went on a 5 days break in the UK and my husband stopped at 4 service stations on the 3 hour drive there, every day we were there I woke with an upset tummy and didn’t want to leave the room, always planning where the nearest loo is when we did and we ended up leaving a day early because of my tummy.

I’d rather not leave my home at all now and when I do have to plan my route so I am never more than 5 minutes from a toilet which is really difficult when I don’t drive and lots of places have their toilets closed or queues to get in the building due to COVID. My youngest has just started school and I feel panicked when leaving to drop and pick up to the point when I almost got off the bus one morning because I felt sick, heart racing, hot and panicked and since then I have started taking Imodium before I leave. When I think I’ve nailed it down to stress I’ll have an attack when I’m perfectly calm, when Ive removed garlic, onions & lactose from my diet and had 7 good days bam it comes again out of no where! I’ve tried buscopan, miverine(sp?), peppermint tablets & tea, Imodium (which do seem to help after the horse has bolted), probiotics (which, after being on them for a week gave me the worst week of urgency yet) and diet changes.

Honestly, on my worst days I’ve considered all sorts because I feel like this is making me a useless mother and a burden. I think it might be making me depressed now as it’s pretty much all I think about and I’m crying a lot , if I’m not lurking in forums I’m googling remedies and articles. I’ve been on furlough since June and worry about returning to the office when the time comes if I have a job to go back to that is so I’ve more time on my hands to worry at the moment which I’m sure isn’t helping.

I’m not sure what I want anyone to say to be honest I’m just writing it all down in the hope that there is someone out there with some miracle cure I’m yet to discover.

21 Replies
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Oh and I’ve been taking silicol get for almost two weeks too- I thought that was helping but had an attack last Wednesday though I’ll stick with it for a little longer.

Please do try the low fodmap diet again but you have to go all in and give it 100% all the time otherwise it won't work. Monash University (the founders of the diet) have an app you download, its a one off payment which goes towards their research, its a total game changer and can help 70-80% of IBS D cases. Add more fats into it if youre losing weight, I eat dark chocolate to keep weight maintained, the app shows you serving sizes per meal.

I hope this help, it can get better but it takes dedication and work :) x

Mush83
Mush83 in reply to asbayford

Will definitely go all in- fingers crossed and thank you for replying x

When you did it did you stop all other medications? I worry that trying new things monthly I won’t know what’s helping and what’s not if I do see an improvement.

asbayford
asbayford in reply to Mush83

The only thing I take now is my anti anxiety meds but rarely ever need mevberine/peppermint/loperamide anymore :) it's crazy what food can do 🤣 maybe stop the meds a week into the diet is your gp approves, maybe they can refer you to a trained dietitian? I was having diarrhea daily for 2 years and all it turned out to be was a few food intolerances that the low fodmap diet helped me find. Wishing you all the luck!! X

Mush83
Mush83 in reply to asbayford

My GP has referred me to a dietician for support, my first appointment is in 3 weeks. Fingers crossed it helps as it did for you. So glad you got to the bottom of it 🙂

Good morning I am sorry to hear you are feeling rubbish, but I've been there about 4 year's ago, so I feel your pain. I started to use Entersol Gel along with mebeverine and it works for me. I started last year and it stopped the frequency and bulked up the consistency after a day. It's amazing stuff. I took a break from it to try Alfloex, but to he honest it made me quite poorly, so I'm back on the gel. It's worth a try and I wish you luck. Claire xx

Mush83
Mush83 in reply to Claire44

Hi Claire- thank you for replying x

I looked at this before buying silicol gel- are they similar do you know? I’ve spent an absolute fortune on meds and things in recent months as I’m sure everyone did before they found their solution.

Claire44
Claire44 in reply to Mush83

Hi I'm not sure if they are the same, sorry. But you are right, I have spent a fortune too trying to get something that helps. It's so exhausting xx

I had really bad diarrhoea and was told for years it was IBS. Finally got so bad that I was being sick too. Anyway, long story short, I got referred to gastro and had a sehcat scan which diagnosed bile acid malabsorption. I now have binder medication. Look at bad-uk.org website and see if you find your story similar and then push for diagnosis. I also had blood tests, stool samples and colonoscopy to rule out other things like chrons or coeliac or any other issues but luckily all clear.

Mush83
Mush83 in reply to jbrking

Ah this is really interesting thank you! Will look into this ASAP.

Do try probiotics. Works for me after trying everything for years. Aloe Pura Maxim. Amazon or Holland and Barrett. Two before bed.

Mush83
Mush83 in reply to Hdr2712

did you try different probiotics? Only I’ve tried two in the last year (nutravita pure cultures & bio kult) and they both resulted in the urgency & frequency increasing after a few days of taking them. I’m wondering if different brands have different types in them or if the live drinking yogurt ones might be worth a try.

I really feel for you. At times I felt I'd rather be dead.

Mush83
Mush83 in reply to Hdr2712

thank you- that’s exactly how I feel on the bad days. It’s the unpredictability of it, and every time I think I’m getting somewhere the gurgling and urgency brings me back down again.

Hdr2712
Hdr2712 in reply to Mush83

I tried live yoghurts which helped a bit but yoghurts not really good for IBS. Aloe Pura seems to work for me but others say Alflorex is briliant. Good luck. It's the pits. X

Sorry to hear about what you are going through. I agree with much of what the others are saying. Did you try Alflorex probiotic which has been studied for IBS? It has really helped me. There is an interesting infographic on gut bacterial imbalances here, which good probiotics may help with:

gutmicrobiotaforhealth.com/...

If your IBS is stress related, this 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. I know it also happens when you are calm, but sometimes it's a melting pot of different things.

In terms of the FODMAP diet, this needs to be following in full i.e. removing all FODMAPs for 2 weeks to see if symptoms settle down 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.

In terms of maintaining weight whilst on a more restricted diet, if you can tolerate fats you could add a tablespoon of olive oil to meals to add calories . Plus there are gluten free breads (just need to be careful of ones with FODMAPs such as apple puree as a sweetener) and rice to give you extra carbs. You can consider ground flaxseed to act as a bulking agent. The Monash App is very helpful in this regard - as already mentioned.

You can find some info on self management here:

theibsnetwork.org/the-self-...

If you get no relief at all and still have diarrhea after eliminating all FODMAPs for 2 weeks, it is worth asking for a test for BAM (bile acid malabsorption), as has been already mentioned. There is a separate treatment for that which can be highly successful. Good luck.

Mush83
Mush83 in reply to xjrs

This is amazing advise- thank you! I’d lost 8 lbs from June to August from eating plain to try and curb the attacks so wasn’t starting from a good place when I started FODmap mid August. I also used to exercise 5x per week either running, gym, classes or walking prior to my near miss in June so I wonder how much of this is muscle loss as I’d lost the confidence to leave home unless necessary. I did find gluten free bread had me running for the loo within 45 minutes- something in that doesn’t agree with me at all so I’d left white bread in my diet whilst removing lactose entirely. I need to give FODmap a proper go!

xjrs
xjrs in reply to Mush83

Unfortunately, whilst doing the FODMAP diet you need to check the ingredients of everything including those in gluten free bread - the Monash app is really helpful since it has supermarket products as well, so it does some of this for you. There is also the King's College FODMAP app

kcl.ac.uk/lsm/schools/life-...

(Monash is Australian, Kings College is UK). It's a lot of work, but it is so worth it in the end.

Mush83
Mush83 in reply to xjrs

Will definitely get the app, thank you- it’s very reasonably priced especially if it helps x

I was diagnosed with IBS-D a few decades ago. Prescibed Codeine Phosphate . That has worked reasonably well . When I happened to mention it to another GP he advised eating foods that are soluble fibre (like Ryvita) and golden linseed. Both have helped me get back to a sort of 'normal' for the majority of the time. Holland and Barrett sell golden linseed and I have one dessert spoon with some muesli in the morning. You can take it with every meal if you wish. Chia seeds are also great for soluble fibre and other benefits. (Read the details before you go too mad with the Chia!) See:

webmd.com/food-recipes/feat...

Thank you so much to everyone who has replied. I don’t feel so alone now at least.

Lots of new things to research and it’s so good to read that people have managed to find things that have helped them to manage and live normally- it’s giving me hope!

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