Im struggling with IBS-D looking for help

[DPiper]

Hello everyone,

I’ve come here for some support as I really don’t know which way to turn…

I’ve apparently had ibs for years according to doctors etc but I’ve never been able to figure out what my triggers are etc, when I’m out I have to know where the toilets are or if they are easily accessible before agreeing to event etc and going on holiday is stressful, I usually make sure its near the airport and I don’t leave the accommodation that’s if I actually do get the balls to go originally…

it’s got really bad recently where I had no control at a public social event and actually soiled myself, not just like a follow through, it was like a complete evacuation after sharp stomach pain, luckily I was wearing black jeans and was at a hotel so could go back to the room and sort myself out and luckily nobody found out. I had a steak and ale pie meal and 5 rum and Pepsi max which I would usually be ok with but I don’t know if it was that or something else that didn’t agree with me.

I started noting down symptoms and it seems to coincide with alcohol or meals with gravy so I started to cut these out, I went to the doctor and had full blood counts and a stool test but had no results that were bad, I worry that the stool sample I took was from a good stool as it was a solid movement I had, sometimes I’ll have a solid movement and shortly after have a stomach pain and have diarrhoea, I’ve also passed wind and followed through a little bit on multiple occasions.

The doctor has said to go on FODMAP diet for 4 months with mebeverine but nothing seems to be helping.

2 days ago I literally had

gluten free oatcakes with light babybell for breakfast

Gluten free oat cakes with light baby bell for lunch

1 chicken breast and half a pack of white rice for dinner

And all seemed ok within myself the next day I felt good and confident to do things, and then!

I had exactly the same meals yesterday for breakfast and lunch, didn’t have any dinner as I was at a friends bbq and didn’t want any trouble but about half 9 in the evening I had to go to the toilet with diorrhea.

I’m a tradesmen who owns the business,I’m in peoples houses or out on the road in the van all the time so this is a massive concern for me and I’m lost and really don’t know which way to turn to get my life back on track, or if it’s something else that’s causing these problems that’s not IBS

I was going to book private ultrasounds but I don’t know what I’m booking, I’ve never had colonoscopy etc just have the feeling the doctors aren’t really interested and want me out the room as quick as possible. Looking at private gastro doctors and the appointments seem to be weeks about and about an hours drive which is stressing me out with my symptoms

few other things incase it might help

I have a Really tight foreskin that I can’t pull back and I’m waiting for an nhs appointment ( for a long time ) again I’m worried about having a private op because of my stomach issues.

I have what I believe is Raynauds in my hands when it’s it’s cold my fingers go white but i’m now getting pins and needles in them when it’s not cold

I have what I’m told is folliculitis on my thighs

I get a lot of Lower back pain alongside the stomach issues

the stomach pains always seem to be lower below the belly button to the the left a bit

I’ve had right shoulder pain with pins and needles but think this is due to a knot in my shoulder as I’ve had to have acupuncture on that part before to loosen it up when I felt pulling on my neck when turning it.

Just saying everything to see if it sparks any ideas, like I say atm I’m a bit lost don’t know where to turn and just want a life back.

Would appreciate any help or advice

[Backn4th]

Hi DPiper,

I'm a newbie here & your post was one of the first I read. I couldn't help myself and had to start writing without getting a proper feel for the site

Like you I really don't know where to turn although sounds like you have it a bit worse. I've known for years but it's been hard to track down the cause(s) in part because it's too hard to be methodical and disciplined. I always keep a mental note though. Yes, all sorts of potential causes and the time delay doesn't help in working it out either. The pain, inconvenience and embarrassment is all horrible. Then there are all of the community bugs and viruses and poor commercial food hygiene practices that affect us that are randomly out there confusing the situation. I think the name gives a clue to the professional knowledge on the condition, it refers to the effect and not the cause.

Although I love them, I have decided the pastry in pies is bad news. Yep, it could be a gluten intolerance too. The best tactic I have found is making my food from scratch with selected basic ingredients (selected with reading the detail of what is in the ingredient!). I was looking into palm oil when I found this site. It's in everything(!!) including the spread I use instead of natural butter. I really must try harder to use traditional alternatives if only for the planet. Of course, it is difficult to find decent literature speaking against palm oil because it's very big business with much money at stake. You mentioned writing symptom notes, yes I think keeping a detailed diary including intake is probably a good plan... and reviewing it periodically.

Since you are on the road with a van a lot I suggest you invest in a small portable loo for emergencies. Maybe also some curtains and an extractor fan.

Good Luck!

[BabsyWabsy]

Hi D Piper, Sorry you are suffering. My son, who delivers & fits electrical equipment has a similar problem with unexpected urgency, and he drives a lorry. He has now got a RADAR key which allows him access to disabled toilets wherever they are available. It is OK to use these if you need to. (He has developed a mental map of them). I am just wondering if you might have an issue with caffeine? Pepsi Max is quite high in caffeine, and the artificial sweeteners can also cause diarrhoea. Both my son and I have had to give up coffee, which we both enjoyed, but it 'goes straight through', which creates a problem. PS, I also enjoy an occasional shot or rum, but neat.

[xjrs]

Welcome to the club!

If you have had all the usual tests to rule other things out - tests mentioned here (which include stool sample for calprotectin levels and blood work):

nhs.uk/conditions/irritable...

and these come back fine, then there is no need for a colonoscopy.

I have some general advice about what to try for IBS in a previous post of mine:

healthunlocked.com/theibsne...

In the mean time you could wear incontenance pads - these are also available for men.

If you try all the usual remedies and are strict with the protocol and still have diarrhoea, ask your doctor for a test for BAM (bile acid malabsorption).

If you have a diarrhoea episode you could try eating just plain white jasmine rice and lean protein for a day or two. This will be digested wholly in the small intestine, with no residue for the colon so it should stop the diarrheoa and give your bowels a rest. Then introduce a well tolerated vegetable such as carrots and gradually work back to your normal diet.

There is also imodium to consider.

[XDjames]

A few things pop into my head.

Steak -only when my guts are at their most robust. I'm dreaming of that juicy fillet!

Pie -pastry doesn't like me. I do miss chocolate croissants with breakfast. Sigh, GF ones are rubbish and TBH I think it's not all about GF.

Rum and coke -sounds very acidic. Not being preachy but for other reasons I stopped drinking alcohol except for a very rare half of weak real ale or a small glass of Malbec. I really don't miss booze, very little upside when I think it through.

What parts of your life are most important to hang onto? Ditch the obligation stuff and think more of yourself and making things that you can control easier.

And yes thought of having to go into hospital and be constrained loo-wise is frightening. I'd be asking about a private room.

Really tough having to be on the road and in folk's houses. You have to work with your hands in the real world which takes a lot of doing. I did that occasionally but had to give up and pass it to my young associates (which they enjoy and which helps them), plus I'm now retired. Flush and Toilet Scout are good homework for me when I go anywhere, plus carrying something for emergency.

[DPiper]

massive thank you for the replies so far!

So a bit of an update it got really bad this morning and I couldn’t even hold down water, I drink a bottle of water before work had a really bad pain at the bottom of my stomach just to the left of my belly button then had diarrhoea straight away.

I couldn’t get a doctors appointment so phoned 111 and they told me to get to a adult urgent treatment centre within 2 hours

Luckily my brother took me and my stomach was empty from not eating properly for 3 days so I felt more comfortable to travel there wasn’t much luck there, they just gave me codeine and omeprazole and sent me back to my gp to ask them to be referred to a gastroenterologist, I think I just need to have the endoscopy tests etc for peace of mind just to make sure there’s no other issues but like you say it more than likely is just ibs and I need to learn how to deal with it.

It’s really good to have this outlet, thanks for your responses.

[Book_Worm5]

Sorry you’re having these troubles - it really is a lonely place and I speak from experience!

A few points that might help - get yourself booked with a private gastro for assessment. I’ve found the NHS GPs just don’t want to know.

Lay off fizzy drinks, red meat and anything too fatty.

Get some immodium instants - I sometimes break them in half and it’s just enough to give me peace of mind for the day.

As someone said - portable toilet for your car/van. Not ideal but you soon lose all concept of shame with IBS - I know I have!

Have you tried a probiotic like Alflorex or Symprove?

Lastly, don’t be afraid to admit you need time off work if it’s financially doable. IBS is a huge mental burden and admitting you can’t continue work is ok - I know I’ve had to do this!

[DPiper in reply to Book_Worm5]

Thanks book worm, yeah it’s really good to have this outlet for me! My partner is very understanding and a diamond luckily aswell but it’s good to talk to other people with ibs

Yeah this seems to be the case, 3month waiting time is a joke so I’m going to book a private appointment and see where that takes me.

Thanks a lot for the advice, I haven’t tried any probiotics yet, my partner has got me some tho so maybe I’ll give those a go

Thanks for your advice and reply

[Scentedcandles]

Hi DPiper, I feel your pain. I hope this lengthy response will help.

I have had very loose stools for years and coped with it and started a gluten free diet about three and a half years ago which helped.

A few years back I visited my doctor as I had pain in my lower abdomen left side and centre. My GP advise a stool test and it found blood traces and advised a colonoscopy. I had the procedure had 8 polyps removed said I had more so I need this test very 3 years. I was also diagnosed with Diviculosis. No other treatment was advised by the hospital.

Saw my GP had blood tests for coeliac disease came back back negative. She suggested I had IBS.

I saw my GP again as still had symptoms (bouts of severe loose stools and pain throughout the night and during the day). she suggested that I had overactive gut and suggested Amitrityline 10mg Although this is an antidepressant it acts like an antihistamine as it calms down the gut. I know this treatment is not for everyone but it has helped me as I no longer need to get up in the night.

I take 1 Alflorex probiotic a day. (bought via internet)

Buscopan when I have pain. (available via Chemists, supermarkets etc.)

Live plain yoghurt once a day and still have a gluten free diet although I am starting to introduce gluten a little at a time to see what happens.

Still have loose stools sometimes during the day but is mostly manageable.

I also kept a diary for 4 months after my diagnosis it made little sense as I could eat something one day but not the next! So inconclusive on what I could eat.

I have just had a CT scan instead of a colonoscopy as I now have a thickened large bowl and they cannot use the camera.

I am now awaiting the results.

I hope the above helps as I have only found ways of managing it. I still don't know all the triggers but for me too much over processed cheese in one go can upset me big time!

[DPiper in reply to Scentedcandles]

Thank you so much for your reply, this kind of cements my push for a colonoscopy I think and gives me hope to keep it manageable

Thanks again