Severe IBS flare ups or something else? I’m miserable here

[bagheera92]

in 2020 I began experiencing IBS symptoms. I had a colonoscopy which ruled out anything else and confirmed IBS.
i was prescribed mebeverine 3x a day before meals which seemed to help along with me eliminating my trigger foods.

i am now currently experiencing an IBS flare-up that is going into three weeks, beginning after I ate a fish bite. Previously, my flare-ups would only last hours to a few days, but they are now lasting weeks and becoming much more severe. A few months ago I had to go to hospital after 111 told me to because of the pain.

I have severe abdominal pain from my belly button downwards, which comes in waves like contractions. The pain feels very similar to labour pains and is so intense that it keeps me awake most of the night. When I have a bowel movement, I experience stabbing pain in the lower right side which makes me feel dizzy and faint. The bowel movements feel like passing razor blades or acid. I now bleed from my bum when I pass a bowel movement. I I have severe gas that wakes me in the night.

My eyelids are red and puffy and feel horrible and gritty Ive bought some eye drops for them . I have also started getting painful sores inside my lips that look like holes. (Not a cold sore)
I will attach a picture. Will need to wait for Mumsnet to approve it

Even foods which used to be safe now trigger symptoms. I am scared to eat due to the pain and losing weight. I am utterly miserable and exhausted all i want to do is sleep. I can’t remember the last time I was pain free. I’ve been back to the GP this week she gave me a lecture saying IBS can’t be cured but she’ll do bloods and calprotectin anyway.

the bloods came back today absolutely fine.
no calprotecin results yet.

im not asking anyone to Diagnose me, but has anyone experienced flare ups with IBS that have lasted longer and longer and got more severe ? If so any advice or recommendations on food ?

foods I can’t eat:
Red meat
Vegetables
Not to much fruit
nothing to high in fiber
Anything sour or salty or sweet (chocolate etc)
Can’t have caffeine
Anything to hot in temperatures
Anything Spicey
Nothing fried
No nuts or grains

Something else to consider would be SIBO, (Small Intestine Bacterial Overgrowth) particularly hydrogen sulfide SIBO.

if you want to look into that, the research of Dr Mark Pimenthal a good place to start googling. And someone called Alison Siebecker has avery informative website.

As a quick fix measure, try some Pepto Bismol for symptomatic relief. If that makes a difference quickly, it’s really worth looking into hydrogen sulfide SIBO (the bismuth in pepto bimol binds the sulphur from the hydrogen sulphide and flushes it out of your system).

It’s not a cure but it can provide some much needed cessation of symptoms whilst you look into things further.

I will look into that thankyou ♥️

Just throwing something else into the mix to consider op.

Do you suffer from any gynae issues?

I have struggled with most of your symptoms for 26 years and despite endless gastro tests I am constantly told it is 'just' IBS (although personally I having followed many IBS support groupsI feel it's never just, it ruins lives) and as you've been told, I need to simply need to manange it and there is no cure. However, my symptoms have been progressively getting worse over the last 6 years. I did test positive for Hydrogen SIBO in 2023 but my gastro told me to ignore this as she believes the tests often produce false positives.

And for most of my adult life I have also struggled with gynae issues and have been under the same gynae department for the last 11 years, I have had various tests and nothing major determined and no real explaination to my heavy periods, very painful ovulation and worsening of gut issues alongside these times.

At the end of 2022, I begged my gynae for an MRI - it turns out that I have deep endometriosis and diffuse adenomyosis. I am now convinced these are contributing to my gut issues.

I do hope you get some results soon, ongoing digestive issues are miserable.

@Inkytreasurei actually do! I’m waiting for a referral appointment to come through from gynea as I have adenmyosis. My GP tried to put me on the coil and I refused. Wow I had no idea that could be linked I will look into that. My periods come every month , but I barely bleed however the pain is out of this world so I suspect I may endometriosis also. Thankyou this is something I will look into also.

It's definitely linked. I went on to join several support groups for both adenomyosis and endometriosis and do many on these groups have what they call 'funky' poops and associated gut issues.

Endo often goes hand in hand with adenomyosis unfortunately.

On a side note, I will say not having the mirena has probably been my biggest ever mistake. I kept refusing it as I'd read so many horror stories so opted for an ablation instead, huge huge mistake as it's made my adenomyosis so much worse and now it's irreversible. I now so wish I'd opted for the coil, at least I could have had it removed if it didn't agree with me. I'm now on a waiting list for a hysterectomy which I had hoped to avoid.

@Inkytreasurei really appreciate you sharing this with me. I did have the coil but if “moved” and felt like I had a bowling ball between my legs 😂
my husband has had the snip we are both done having babies now. Hormonal contraception really messes with my mental health.
im also going to look into of any foods aggravate adenmyosis. I actually have a thread on here when I was diagnosed with it, asking for others experience !

Sometimes with adenomyosis you can barely bleed but still have lots of pain. An MRI can normally diagnose the type you have, focal or diffuse. If you don't want the coil that's fine, but as an aside I'll say the mirena coil helps massively with bleeding and also thins your uterus lining so less cramps and pain. It has worked well for me, I have others issues so still in lots of pain but something to consider. I'd highly recommend it, if inserted well. An ablation is another option but doesn't help with pain more the bleeding.

Are you symptoms just on your period or elsewhere during the month? As adenomyosis us more in the week leading up to and during your period and endo more all month round. When you see gyne definitely look into either a hysterectomy if you're happy to go that route, and a laparoscopy if you want. The main symptom of endometriosis is not actually period pain because endo is not a period condition - it's a whole body inflammatory condition
where the endometriosis tissue even produces its own oestrogen and the pain is felt throughout the month not just when on your period. Medication depending on how severe your pain and symptoms are (can be opioids, NSAIDs) and then treating any other symptoms you have. Your symtpoms do sound more LIKE IBD but you can also have endometriosis tissue in your bowels, but that would need to be checked, I'd still go down the route of IBD as it sounds like your bowel issues are more than that. Have you seen gynaecology yet or still waiting?

Oh no, that must have felt awful!

I don't know if you have tried any of these things but a few that kind of helps me may help you too.

Colpermin tablets (peppermint oil) every day for the gas as well as Bloateze tablets for when it's really bad. I get such bad gas.

I was getting to the point where I was woken every night at 2am with bloating, gas, gurgling guts and feeling like I might need the loo but for the last year I listen to a sleep story on the Calm app every night and it does seem to help for some reason.

I also follow the low fodmap diet and have completely eliminated gluten/wheat over the last week - so difficult as I adore bread.

I also follow a woman called Sophie Richards on IG, she has managed to reduce all her blaoting and pain with an elimination and anti inflammatory diet. That is my next step, to go anti inflammatory.

I am also going to start acupuncture as I keep reading it can really help - just wish it wasn't so expensive.

Threads like this anger me as it proves just how crap GPs are. I have ulcerative colitis and you have the exact same symptoms as me. My calprotectin levels are always normal despite having colitis for 10 years. Please push for a colonoscopy and endoscopy to check everything. My Gp was bloody useless and kept fobbing me off with all sorts of lies.

I have a drafted note for the GP:
Me recent stool sample and bloods came back fine.
The stool sample I handed in actually contained visible blood.
• Severe abdominal pain from my belly button downwards, in waves like contractions that keep me awake at night.
• Stabbing pain in the lower right side when I open my bowels, leaving me dizzy or faint because of the pain whilst sitting on the loo.
• Bowel movements that feel very painful, almost like passing acid or razor blades.
• leaking mucus from my back passage. Passing blood in bowel movements
• Severe gas that wakes me in the night.
• Painful ulcers in my mouth (I have photos to show you but also showed the on call GP last week) and very sore, red, puffy eyes each morning, with swelling in my cheeks.

I know I have been labelled as having IBS, which I did agree with in the past. But the last year I have significantly got worse. My past “safe foods” are no longer safe. this latest flare up lasted nearly three weeks and the flare ups over the last year feel very different. I’m only just starting to come out of it. But I know the smell of one wrong food will put me right back into flare up. I’ve started to lose weight. This last year I’ve lost 2 stone

I know that the test results look reassuring, but because of the blood, the mouth ulcers, and the eye problems, bug mainly the pain. I’m still worried something else is going on. It confines me to the sofa and bathroom. I really think I need a camera up and down and further investigation.
My aunty who is 46 is currently is currently receiving folafax for bowel cancer and my younger sister has diverticula disease.
Buscopan is like swallowing fresh air.
Mebeverine and pantoprazole used to help.

And puffy eyes, and my crohn's disease flares are like contractions, which last for hours until I pass a stool or physically sick. So very painful.

That’s how I describe my pain like contractions. I’m passing a bowel movement but at the same time I have a horrific stabbing pain in my lower right side. And I do get relief. But then I’m in agony in my bum from the bowel movement

What helps me is a mix of lots of medication, I personally haven't found anti-inflammatory food useful. I use a few opiods, NSAIDs, antispasmodics meds, antiemetics, tranexamic acid, sleeping meds on occasional use. It's around like a dozen meds in total but it helps me manage it as best as I can though it still impacts my life obviously, pacing for chronic illnesses is also useful, using mobility aids when needed and trying new methods when you can. I'm looking into getting a sacral pain stimulater but not sure how thay will go.

Your list is great OP, honestly just show that to them or read it all out. You say you want a colonoscopy and sigmoidoscopy, if they say no ask them why they think it won't be helpful. Say you want their refusal documented in the notes etc. Definitely say you don't accept IBS as the diagnosis. Hopefully it goes very well.

It all sounds very familiar.

Could I politely suggest that you're being too passive? Almost to the point of sounding apologetic and providing reasons for the GP to dismiss you. The entire purpose of a GP is to care for you and investigate when you have concerning symptoms. You are not asking for something special or extraordinary.

The cancer risk should be right at the top with the blood and the fact that you haven't been examined. You really, really need to be assertive about that.

The weight loss should also be way up near the top as that is a red flag.

I also wouldn't include the line about being worried because that just invites an "it's just anxiety, you're fine" response. I would be firmer and say that your symptoms have deteriorated significantly, they haven't been adequately investigated, and you would like referral for further specialist investigation.

Did you ever look at the Crohn's and Colitis link I shared that provided information you could save or print to take to your GP?

I hope the appointment goes well. Please be assertive rather than apologetic and submissive.

Of course you’re entitled to your opinion . And yes I probably am coming across as that as this is a new gp I don’t want to go in all
guns blazing. But that’s just me as a person my husband comments on how I’m to nice all
the time. I did yes I absolutely do think it’s chrones. Again my symptoms have been downplayed as IBS so I do feel like a drama queen.

also my intolerance bloods I paid for came back. It’s came back at a high re active level for gluten and cows milk.
but negative for ceoliacs

You can have a gluten intolerance and not be coeliac, they're different things. Coeliacs is an autoimmune disease not a good intolerance. Both can have similar/severe symptoms but the difference between the two is is the root cause and the long term damage coeliac does where food intolerances usually don't.

Hi everyone, just back from my drs appointment. I seen another GP. Showed him what I had wrote down. And he said that’s great I just need to clarify a few things. Asked me some questions.
he then asked to see the pictures of the ulcers on my lips which I showed. He then said because of the bleeding and ulcers he agrees there maybe something else going on and he will ask gastro to see me again

I'm glad that's happened then, a referral to gastrology is good progress. Has he referred/booked you for any procedures from his side? Colonoscopy etc or any further stool tests.

Did he prescribe anything or wants to leave that to gastro?

I’m already on meds from the last visit to gastroenterology. Mebeverine and pantoprazol. He did say if I’m happy to continue with those until an appointment comes through then to do so. He also said he’s unsure what tests they will do .
AND he pointed out I did lost a lot of weight over the last year but in the last few months I’ve gained weight. Yep thanks for pointing that out 😂

mind you I have cut out gluten and cows milk since I received the private blood results and I actually slept through last night for the first time in months and wasn’t kept awake all night with painful wind …

Just checking back, hope everyone is well!
I seen Gastro this morning. And I’m have a colonoscopy on the 28th of this month. I was referred to tyneside local surgery service.
im really happy with the app today. The consultant actually listened then I went into another room and seen a endoscopist who was disgusted with the way I’ve been treated so far. And she gave me all my bowel prep told me what to expect etc.

Not a thing was seen on the colonoscopy… biopsies where taken

The biopsies might reveal more. It can be so hard when it's clear something is wrong but you can't pinpoint it yet. Have you had the endoscopy? Did that reveal anything? I'm sure you'll have a follow-up when you get the biposy results back.

I had similar symptoms, had all the tests & investigations which came back clear. My symptoms started every evening when I ate my tea, within the first 5 minutes of sitting down to eat the cramping would start & I would have to rush to the toilet & be stuck there for ages doubled up until I finally managed to get rid of it all, I could be stuck there for over an hour, sometimes I would be sick as well & be totally exhausted afterwards. I lost 3 stone in 6 months, then the day after I left exh after deciding to end my marriage, it completely stopped, never to return again. I hadn't realised that I was stressed out, I only thought about ending my marriage maybe a month before I left. I can recommend Buscopan & Copermin peppermint oil capsules to help with the cramps, are you running down at all? The mouth ulcers can be a sign, have you been tested for B12 deficiency? If not ask to be tested.

Sorry I’ve just seen the replies !
when I seen the gastroenterologist he said we’le do the colonoscopy first see what we find, then possibly endoscopy.
i forgot to ask yesterday what the biopsies where for.
yes I’ve had full blood counts done also :)
I feel a bit fed up after the colonoscopy. I’ve got a feeling the biopsies won’t show anything either and ile be ruled out as IBS again.
The only other thing I can think of is the adenmyosis worsening and possible affecting my bowels.
Also I received the write up from the appointment with Gastro when I was booked in for the camera. And he’s said he felt “fullness in the right iliac fossa” when examining me