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.

If you’re anywhere near the South West and can afford to go private, I can recommend a brilliant gastroenterologist, who specialises in IBS/Crohns etc. Not sure if I’m allowed to put his name on here?

I apologise, I see that you did say you had tried FODMAP, I didn't read the OP properly...

Mine was mental health / anxiety related. Once I started working properly on that my digestive issues cleared completely.

You say you are passing blood? Surely that would warrant an urgent investigation. You need a colonoscopy!!

Posts like this make me really cross. How on earth do they know you haven't got IBD from blood tests and stool samples alone? You need a colonoscopy. Bleeding isn't usually associated with IBS. I've had crohns disease for 20+ years, I can have normal blood results when I know I'm flaring. A recent colonoscopy showed moderate inflammation throughout my large bowel despite normal calprotectin levels.

Unfortunately you've got to fight sometimes. I'm not saying you do have IBD however it needs ruling out. Patients often take years to get a diagnosis, in fact I don't know anyone with IBD who wasn't originally fobbed off with IBS. You've got to fight for it. Ring every day, emphasise how much you're suffering. Have you lost weight at all? How's your appetite? Any mouth ulcers? Aching joints? General fatigue?

OP, I'm so sorry. I've been in your shoes and understand how truly awful it is.

You might want to see if you can get a prescription for Questran. It worked overnight for me. I have taken it for the last 15 years or so.

Recently my (new) gastroenterologist has put me on a course of kabi-glutamine (high dose for 3 months) in the hope of sorting out the permeability of my bowel (which would possibly allow me to come off the Questran altogether)

Anal bleeding with IBS-D needs to be investigated I would have thought. Try another GP?

Have you had a colonoscopy recently? You sound just like my DH, he was told he had IBS for years. Eventually got bad enough that he was re-referred for another colonoscopy (he'd had one when he was originally diagnosed about three or four years previously) and was then diagnosed with ulcerative colitis. Definitely definitely worth pushing for it to be checked again even if you have had one some time ago.

@theDudesmummy

Do you do the low FODMAP diet? My DD has IBS and it has helped her greatly.

It says in the OP she already has tried that.

My only recommendations:
Kefir
Probiotics
Eating fermented things whenever you can
Vinegar foods help me too pickled beetroot, picked gerkins etc
Avoid your triggers and certain well know ones (onions, garlic, anything really fatty like melted cheese, loads of mayonnaise etc)

Read an article this week that said how common it is, something like 4 million people in the UK and more likely I affect women. It's rubbish!!

How long have you had these symptoms?

I ask because I had exactly the same issues following a viral illness. Not even D&V just a high fever for a few days. GP said it can take 6 months for the gut to reestablish normal function. I did take 6 months but not before I'd had to have an sigmoidoscopy for rectal bleeding. And I did poo myself on one occasion. Lost half a stone and couldn't eat because of the urgency. Try probiotics?

I also really recommend kefir yoghurt, I find it the most helpful of the probiotic foods (and I say that as someone for whom dairy food in general seems to cause itchy spots). The other thing is seriously reducing your anxiety and stress.

Can you be referred to a dietician to at least help you if it is IBS? Remember that intolerence builds up the more you eat of something, so one day the wheat in the roll could be ok but then eating it again the next day might be too much and have a bad effect. Really you need more help with this, i'm sorry they just don't seem to care.

My gran was in a terrible state like you and sent home and told it was nothing a few times. She then died of diverticulosis.

I have the same OP. It’s very difficult. I have had faecal incontinence on many occasions. I ALWAYS carry a spare pair of knickers with me and as it’s worse in the morning I plan around that. I get up early so the worst is over before I go to work.
AFTER being tested (blood test) for Coeliac disease, which was negative, I cut out gluten. I cut it out properly though - absolutely no cheating and that has helped a lot. I also have less fruit and veg which helps too - you obviously have to balance it with the health benefits of fruit and veg but my consultant said no more than 3 portions of fruit and veg a day.

These are exactly the same symptoms I had before I was diagnosed with IBD (initially I was diagnosed with colitis, later amended to mild crohns). Obviously I am not a doctor so the same might not apply to you. My GP thought I had haemaeroids when I first went to her! But because I was passing blood sent me for an endoscopy just for "peace of mind", endo thought I had colitis, referred me for a colonoscopy which confirmed. I've been on meds ever since which manage it, occasionally get flare ups but just increase the dosage if so. IBD is not fun but in many cases can actually be easier to manage than IBS, even though it's technically a more serious disease, because there are medications for it. I hope you can get sorted, OP.

Sounds like Bile Acid Malabsorption. Have you had your gall bladder out? Is you pop sometimes a bright yellow/bile colour?

I was prescribed a bile binder powder and it has changed my life!

Unfortunately I’ve tried FODMAP and cutting out food groups but haven’t had any success.

I’ve never had a colonoscopy, the hospital consultant rejected the 2nd referral as they had already taken blood and poop samples at the first referral which were all clear and there’s no signs of anything more sinister so it’s likely just IBS.

My GP was helpful and he rereferred me for the bleeding and mucus but as it’s a routine referral, it’s going to take a really long time with delays from covid (1-2 years)….. and that’s assuming the referral doesn’t just get rejected again like last time! I can’t afford to go private unfortunately.

It’s only IBS and it’s not life threatening but it has such a massive impact on everyday life. Sorry to hear other people are struggling with it as well.

Ginger tea really helps me. I'm pretty much under control these days, but a friend suffered very badly, and then discovered kinesiology. She was cured by that. Definitely not advocating ignoring mainstream medicine, but maybe worth considering alongside?

Can you be referred to a different hospital?
I work in endoscopy and we are seeing all routine patients within 6 weeks of referral!

Please push for more investigations. My gastroenterologist told me that until they can find the source of the bleeding then it should never be assumed it’s IBS because that’s not a symptom of that condition.

@Lillygolightly

You have ALL my sympathy OP, I too am an sufferer and it is SO annoying when explain that you’ve tried FODMAP and been tested for food sensitivities or intolerance and then people suggest FODMAP and getting tested for allergies 🙄

Like one poster above I have also had to do daily lopromide at times and it’s just miserable and doesn’t solve the problem….just means you might be able to leave the house for a couple of hours!

I have also done FODMAP, digestive enzymes, acidophilus and probiotics, calcium supplements (as they are naturally constipating), lactase to help with lactose, antihistamine tablets to help with inflammation and x2 colonoscopies. I’m still suffering! At the last colonoscopy they removed a precancerous polyp and said they could see inflammation but I am still waiting on the full results….and I am not hopeful.

I am sorry I have nothing more helpful to add but I just wanted to say that I get it and I’m sorry that your going through this too.

I wouldn't have been able to identify my histamine and tyramine intolerance using Fodmap though and my symptoms are pretty much gone by excluding those whereas I'd still have symptoms following a Fodmap diet. Anti-histamine tablets also wouldn't stop histamine intolerance (there's a reason but I'd need to look it up).

I'm really sorry to hear about your polyp, it must be scary. Is it possible you also have IBD rather than IBS?

@11HerbsAndSpices

Unfortunately I’ve tried FODMAP and cutting out food groups but haven’t had any success.

I’ve never had a colonoscopy, the hospital consultant rejected the 2nd referral as they had already taken blood and poop samples at the first referral which were all clear and there’s no signs of anything more sinister so it’s likely just IBS.

My GP was helpful and he rereferred me for the bleeding and mucus but as it’s a routine referral, it’s going to take a really long time with delays from covid (1-2 years)….. and that’s assuming the referral doesn’t just get rejected again like last time! I can’t afford to go private unfortunately.

It’s only IBS and it’s not life threatening but it has such a massive impact on everyday life. Sorry to hear other people are struggling with it as well.

I would go back to another GP and ask for a 2-week referral. Blood and mucus in stool on more than one occasion warrants an urgent colonoscopy under the suspected cancer pathway especially if you've not yet had a colonoscopy.

Your stool samples have been clear of blood does not mean that it's definitely not cancer or Crohn's disease or another Inflammatory Bowel Disease. In fact I know one person who had a clear poo sample (one of those kits that they send out to 50+ y/o to screen for bowel cancer) and then was diagnosed with bowel cancer six weeks later.

Alternatively in your position I would maybe see if a family member could lend me the money for a private consultation and then pay it back over a year or something.

• stool samples having (not have) - sorry for my grammar.

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 sounds concerning it might be an allergy or chrons I have ibs and never had blood in my poo. I take buscopan IBS for cramps and when needed immodiun. It's really rotten when your life is controlled by your bowels you have my sympathies.

Have you had internal exams via colonoscopy and endoscopy?