Please help, exhausted with IBS😥

[11HerbsAndSpices]

Posted about my problems before but feeling particularly fed up today

I have IBS and am struggling with it. Abdominal cramps. diarrhoea and soft/fluffy poo. anal bleeding, extreme urgency immediately after eating. Bloating. The list goes on.

Today I ate a ham sandwich for lunch- not the healthiest but just using up what’s left in the house (simple ham, light butter and white bread) and exactly 11 minutes later I had to RUN to the toilet. The urgency came out of nowhere and I had about 20 seconds between realising I needed to go and having an accident. Bizarrely I had the same thing yesterday for lunch and was fine.

Thankfully I was at home so could run to the toilet but how am I supposed to deal with this at work or out and about? It’s not just a case of avoiding certain foods to stop the symptoms, anything can trigger it and it feels like they sometimes just start by themself. Over the last year ive tried fodmap, avoiding wheat, gluten, dairy, sugars, additives, all sorts. Nothing has got it under control.

Im exhausted with it all. My blood tests and poop samples were clear. I was referred to the hospital because of my symptoms, and they did another blood test and said everything was fine so discharged me with no need for further tests. Since then everything had worsened, and I was re referred, but the hospital rejected the referral and said it’s just IBS and that I don’t need any further treatment or tests. My own doctor said they can’t do anything else other than what they’ve already prescribed me but it’s not helping.

As I said, im not doubting their diagnosis and im sure it is IBS, but im exhausted with it all.

DD follows the FODMAP diet - it’s the only thing that works for her. It’s very restrictive but she’s used to it now and has found some companies online which supply a range of FODMAP friendly foods so it’s made things a lot easier. I feel for you - IBS is absolutely miserable.

My apologies, I missed that you’d tried the FODMAP diet. I think I’d push to see a specialist now.

Do a 2 month course of Alflorex to get your gut flora back on track - thus made a huge difference to me (recommended by a relative who is a dietician in NHS). For me the triggers are alcohol, stress, dairy and wheat. I can have all of them when my gut is settled but if I have a flare up then I have tp avoid all of the above. Stress is the thing that causes flare ups for me and once it starts it can take mo the to calm down, but I've found avoiding the above plus alflorex will settle things much more quickly.

The things that help me most (apart from avoiding obvious triggers) are:

• probiotics
• intermittent fasting, a lot of the advice on the internet says to eat small amounts often so as not to overload your digestive system. But I’ve found that mine works better if it gets long breaks from processing food
• minimise non-soluble fibre and maximise soluble fibre. This won’t work for everyone, some people with IBS have a very low level of tolerance to any kind of fibre, but for me soluble fibre really calms down my digestive system
• exercise. I’m a keen rower and in a 15 minute session, I’ll be gently squashing down my tummy more than 250 times. That may sound like the very worst thing when you’re suffering with IBS, but it actually has a really soothing effect. Walking is really beneficial too, or just anything that gets your body moving.

IBS is diagnosed by excluding other illnesses so if you've not had a colonoscopy, without one, a diagnosis of IBS should not be made (in my opinion, maybe guidelines and diagnosis criteria have changed since I was diagnosed.)

In the meantime, I agree with the PP to try Alflorex probiotic, I took it during my last IBS-D flare up. I was also prescribed an anti sickness drug called ondansetron, as apparently it has a side effect to stop diarrhoea, it was prescribed by my ibs consultant though as its not the drugs usual use, so don't know if a GP can prescribe it for that reason

Sorry what I meant by the diagnosis of IBS shouldn't have yet been made is that I feel your consultant has let you down by refusing the second referral for colonoscopy, and if you felt up to it I would check the nice guidelines and challenge that decision if the nice guidelines say otherwise. The bleeding is really worrying and is not "normal" in IBS. Would totally understand if you didn't feel up for that fight at the moment, given how unwell you feel. It's not good when we can't get the NHS to treat us in the manner we need.

@Iwantmyoldnameback

So many people diagnosed with IBS found out later it was Celiac Disease or Crohn's or Colitus or Diverticulitis. Please do not just accept it.

That’s worrying. I have an IBS diagnosis - IBD conditions were checked for using blood tests and showed no coeliac, crohns or colitis risk. Can this not be determined on blood tests alone?

I was offered a colonoscopy pretty early on OP - as another PP said, IBS shouldn’t be diagnosed until everything else has been excluded. You need to push for a colonoscopy. I didn’t want one as no bleeding and mine is controllable with diet and lifestyle. And after 3 years if it was sinister I’d expect to be getting worse, not better. But with bleeding I would 100% push for colonoscopy!

Things that make it worse that aren’t food related:

Stress
Alcohol
Nicotine

And pro biotics help.

I was diagnosed with ulcerative colitus 6 years ago and your symptoms sound exactly like mine during a flare up. Diet has nothing to do with starting an ulcerative colitus flare-up but when you're in one, like you are: plain live yogurt, porridge, avocados and rice (plain bland low fibre foods) help me. You must demand a colonoscopy. Its the only way to find out. I have pentasa suppositories for flare upsand they help me with 48 hours. The bleeding and exhaustion are very common signs of UC. I hope you get help soon as I know how horrendous this is.

I can't help as the FODMAP diet controlled mine. It's definitely not a cure all but for bloating/wind, definitely get charcoal tablets. Saves a lot of pain and embarrassment. Peppermint capsules help too but charcoal is ace!

Sorry you are having such a difficult time, OP. I second the advice to push for a colonoscopy sooner to be sure that you haven't been misdiagnosed.

Definitely push for a colonoscopy.

I've been diagnosed with ibs. I can go to the loo 7 times before dinner, can't hold it as I have a slight prolapse. Very rarely cramps. Blood and stool tests turned up nothing. I can eat something one day, the next day I can't.
I now take loperamide before bed every day. I go to the toilet once in the morning and don't have to go through labels with a fine tooth comb.
The feeling of having my life back is indescribable.

I’ve just remembered that something that helped my IBS (once it was confirmed by a colonoscopy) was a low dose of citalopram. Apparently there are lots of serotonin receptors in your guts.

Every sympathy - I’ve had terrible IBS for years
Did FODMAP - gone gluten and caffeine free years ago
I’m tired all the time - minor things take for ever to clear up - mouth ulcers - cold sores - joint pain etc
Had a really bad flare up on holiday abroad recently - bad enough to seek medical help they diagnosed ulcerative colitis and couldn’t believe my GP has been fobbing me off with an IBS diagnosis
Since I came home I’m trying to get listened to but following a telephone appointment was told I have to wait over 4 weeks to get even simple blood tests done!
I get a lot of mucous, jelly like sometimes, bits of blood and what could be pus like streaks when worst

Symprove is really good. I haven't got an IBS diagnosis but have other, similar gastro issues (SIBO, slowed colonic transit, gastroparesis, recurrent impacted bowel) and reached a point about three years ago where I could eat barely anything and was drastically underweight. NHS intestinal failure dietitian recommended Symprove and it's helped so much (I also do regular strong antibiotics for the SIBO and buscopan, loperamide, laxatives when necessary, etc), I can eat again and am a low healthy weight at last. I never thought I'd be able to enjoy food again. I still have bad episodes sometimes, but before starting Symprove I was approaching being tube fed.

(I know my post sounds like all my problems are similar to IBS-C but weirdly a lot of them actually show up similarly to IBS-D despite the diagnoses, I get urgency and incontinence, etc.)

It’s only IBS and it’s not life threatening but it has such a massive impact on everyday life.

IMO because it is a problem with your bowels there is still a taboo around discussing and complaining about IBS which is either a life changing condition in itself, or masking other serious diseases. Never think of it is "only" IBS, it is IBS and you need and deserve appropriate support, a proper diagnosis and treatment.

My niece was told she had IBS, it took a long time, until the symptoms really ramped up, to the point she had blood running out her daily, for her to eventually get further investigations and her ulcerative colitis diagnosis.

Even then with diagnosis and medication she still suffered terribly and had with frequent hospital admissions, they were reluctant to operate as she was so young (mid 20s).

The last huge flare up she had ended 3 weeks in hospital where they couldn't get it under control so performed an emergency ileostomy (stoma bag) when she was very very ill. The bag has made a huge positive difference to her life compared to her UC symptoms as she is no longer dependent on having a toilet nearby at all times and can go out and about now.

She wishes she had pushed for diagnosis and even surgery earlier so it wasn't performed as an emergency. The year before surgery she was in and out of hospital for a week or more almost every other month and they just kept throwing more and more steriods and painkillers at her. Being on steriods for so long has fucked up her bodys ability to produce its own natural steroids and this is her biggest problem now, she now needs to take steriods daily for life, has been shown how to self inject and carries vials of steroid and syringes at all times incase of emergencies. She has had a couple of close calls, the last time she collapsed when home alone, conscious and aware, but couldn't move to call for help.

She is an extreme case, but the earlier you can get more tests and a proper diagnosis for your "only" IBS and are more informed the better. Keep pushing as hard as you can, don't feel bad about making a nuisance of yourself at the GPs.

@SuziSecondLaw may I ask where and which pysillium husk you buy please? Thank you

[quote Coribosh]@SuziSecondLaw may I ask where and which pysillium husk you buy please? Thank you[/quote]
Sure, I get it from amazon.. www.amazon.co.uk/Psyllium-Husks-Storage-Serving-Scoop/dp/B07PWGK9X7?psc=1&pf_rd_p=332cb5e7-9965-451c-9366-12b789fde6e1&pf_rd_r=2EYSDXTM2EJ1KDBAC4F9&pd_rd_wg=wVGZb&pd_rd_i=B07PWGK9X7&ref_=pd_bap_m_rp_7_sc&pd_rd_w=6H5K3&tag=mumsnetforu03-21&pd_rd_r=216e10ff-2892-47e7-b441-47770d4edd65

Hope that link works . To be honest, if it's out of stock I just get something else, I don't think the brand etc matters with this. Also, I mix it with my complan in the morning as breakfast.

Honestly I think you should get some CBT. There's loads of research supporting IBS symptoms reducing with stress reduction.

you need to find out what food sets you off. Pork products and white bread as massive triggers for me. So start by cutting stuff out of your diet. IBS is different for everyone. I find vegan products work wonders. I'm so sensitive to rice and spices. Dairy. Our diet in the UK is very diary and bread based. Try moving away from that. It'll help so much I promise, just try cutting things out x

OP has tried elimination diets.

The bleeding needs investigating properly. IBS does not generally cause bleeding.

My own IBS is different to yours so I'm not sure my advice will be helpful, but mine is affected by my periods, missing meals and holding it in when I need to go to the toilet. The last one is the biggest one, but it seems like you don't have that problem.

The poster above who rows makes an interesting point. Gentle stretches are really good for the pain aspect. Resting with your hips propped up or your legs up against something can really help with wind.