IBS/IBD sufferers...

[ThisIsMyDragName]

Ah fabulous. You’d been in my thoughts! Delighted there’s been some improvement. Sounds like ye got a bad dose

on the ongoing tummy issues, you say it’s self diagnosed IBS - have you had everything else ruled out by a doctor? there are some gut issues that can be provoked by anxiety but that’s not necessarily their underlying cause.

If docs haven’t been any help, have you looked into gut-directed hypnotherapy? I’ve never tried it but it’s on my list if all these tests come back clear! I hate to think you have to just accept this as your life.

I’ve mentioned it to the doc when discussing my anxiety but never specifically talked to them about it. I’m a bit Dr-phobic, they tend to just diagnose me as fat. Which, I mean, is correct. I am fat, but I’m not convinced it’s the single cause of everything that’s ever been wrong with me in my life! I should relocate my testicles (figuratively speaking) and talk to the Dr about it for sure, especially as I’m about to come off anti-depressants entirely so it could feasibly get a bit worse for me.

 

[Keet]

I have ibd (ulcerative colitis) finally in remission after years of being undiagnosed and fobbed off. I had stomach pain, rectal bleeding and clots, erythmea nodusum(inflammation under the skin) a feeling of needing to go constantly but passing just blood and mucus. I was on prednisone for 7months (the moon face, sweats, constant hunger is very real) im now on biological immunosuppressants as other medication just didnt work for me. I had a blood transfusion when i was first admitted because i was very anemic.
There are tests for diagnosis, sigmoidoscopy to look at the sigmoid colon, colonoscopy, blood tests to check crp levels and a calprotectin test which tests the stools for inflammation of the gut.
Dignity goes straight out of the window after having doctors stick a camera up your arse and nurses administering enemas to prep you for cameras.

All dignity definitely goes out the window after a hospital stay.
I also have UC and have been flaring on and off since jan . Tiredness and anaemia is the worst. Glad to hear you’re on the mend

 

[saltandvinegarcrisps]

I've suffered IBS for years, usually bloating, will have times where I need to run to the toilet with minimal notice I need to go, never suffer constipation though. I had norovirus last year and since then any time I eat rich food I am crippled with bloating it's been awful. I bought some peppermint oil capsules a few weeks ago and one will massively help the painful bloating and rock hard stomach that makes me look as if I am 6 months pregnant.

Not sure if the norovirus had anything to do with this recent flare up but the peppermint oil has been a godsend. I get multiple minty tasting burps after taking it and it eases the pain within the hour. Hopefully this helps someone suffering too

 

[Steph’s]

Back with another update or should I say no update.
I wrote on her about my OH and the problems he was having. Unfortunately we are no further forward. His bloods came back clear so gastroenterologist couldn’t do anything more.
massive flare up this week and back to dr. More bloods/samples required. Passing mucus/blood.
another dr appointment this afternoon.
Drained.

 

[SpindleWhorl]

I'm coming to the conclusion that my IBS is literally just random I Can eat a specific meal and be fine then eat the exact same meal again 2 weeks later and be on the toilet all night afterward.

 

[WilmaHun]

I'm really suffering today and I don't know why. I felt fine this morning, I've not eaten anything which would set me off.
I'm literally sat at my desk at work with tears in my eyes as I write this. I keep having to go to the toilet, it's only a small office with 3 of us in today, the toilet is right behind the room my colleague sits in and I have to go past her to get there, so it's not even like I can sneakily go. I've got that awful feeling of just never having quite "finished" when I go to the loo..
I feel nauseous. I'm hungry, but I daren't eat. Each time I go to the loo I feel like any good which was left in my body has gone, it's like I'm literally removing all the nutrients/energy. That's the only way I can describe it. I am shakey, feel hot then cold. This is one of the worst flares I've had in recent months as I've been managing things really well
I hate IBS. It makes life so difficult.

 

[it’s not been changed?!]

So I found mine is triggered by hormones so the best way mine is controlled is the mini pill but i take a double dose. I used to be on the depo injection but the week before due I had flare up and week after I was still bad. Now I barely have any problems. This is probably the longest I've gone (8 months) without any real flare ups. I tried every diet, medication etc around. Had endoscopy, colonoscopy, surgery etc and nothing. I'm coeliac so don't have gluten anyway, but even on low fodmap food I was still ill but now I can eat a normal diet and be fine. Might be worth those who have tried everything and still struggling looking into.

I had a seriously bad bloating experience yesterday. I was at work, too, and I was desperate to go home and change into something comfortable .
I’m actually due my depo on 10th match (a few days away) but I thought I was because I’d eaten rice the night before that had triggered it.
Without being too gross, I have the opposite of going to the toilet and it being loose. I get constipated and am really gassy I try and hold it in at work which makes it worse

 

[WilmaHun]

Are you feeling better today? @WilmaHun

slightly, still not feeling myself but I am definitely better than yesterday! Thank you for asking

 

[swimming]

Thanks everyone for your advice.

so personally, I’m not convinced it’s full on diverticulitis. That condition was picked up by accident when I had a CT scan for another issue.

Everywhere online tells me diverticulitis causes pain in the left hand side and even the doctor told me that. But I don’t have any pain.

I just sometimes feel quite sick in my stomach, get a very watery mouth, bad acid reflux (I take omeprozole for this - which I know is bad for the tummy).

I flit between constipation and diarrhoea. I also take a probiotic tablet from Holland and Barrett.

it’s definitely worse when I’m anxious. But then the upset tummy makes me more axioms because I have health anxiety. Honestly the whole thing is a joke.

when I do have diarrhoea, sometimes it’s like pure acid that comes out. Sorry tmi. It’s bright yellow and stings like hell. I’ve told the doctor this so many times but I’m just getting no where apart from being gaslighted because I’m overweight and have a “high bmi”

im sitting here now feeling sick and have a bubbly tummy.

 

[ThisIsMyDragName]

Just parking myself here. I haven't been diagnosed with IBS, but I struggle massively with anxiety and panic attacks - this is all pretty much since lockdown to be honest. I feel I get really bad cramps at the bottom of my stomach when I feel most anxious. Anyone experienced this or have any tips?

Solidarity, I could have written this myself. I have not worked out a solution but @Jellybean recommended Optibac to me and it has returned me back to ‘normal’ compared to going to the loo several times a day.

 

[Blahblah93]

THERE’S NO PUBLIC TOILETS anywhere I have a just can’t wait card but pret and mc Donalds just stick out of order signs on their loos during peak times so they don’t have to clean them and when you ask they say they’re out of order

Order yourself a Radar key. They open all disabled toilets public and in restaurants/bars.

 

[Blahblah93]

You really have to fight fight fight when it comes to getting a diagnosis or treatment unfortunately . Try to keep a diary/list of symptoms it really helps when trying TJ explain how you’re feeling and your symptoms

Yes! And take photos of your shit (I know it's grim). I did this with the amout of blood I was having, they didn't take me seriously until I showed them the level and then they realised I had a fistula.

 

[MickeyMouseClubhouse]

Sorry to hear you’re struggling
I’d definitely speak to the GP - I have crohns and the symptoms you describe are very similar to what I’ve experienced. Often people forget that IBD isn’t always rushing to the toilet, I suffer extreme constipation and vomiting during a flare as the stricture in my bowel inflames. I’m in no way saying you have a stricture btw! It’s just best to be assessed, and if it is something more that IBS, it’s always beneficial to catch it sooner rather than later. Hope you find something that helps in the meantime

Totally agree,

@sassylash - Best thing to do is get all the tests you can, Bloods, Endoscopy, MRI etc. Worst thing I did was ignore my symptoms for over 18 months, and ended up exhausted and both B12 and Iron Anemic!

 

[hellothere_]

I’m so glad I’ve came across this thread! My doctor thinks I have suspected IBS. I can be on the toilet upto 6/7 times a day , I pump without even knowing I’m doing it, I get horrible cramping, I pass all I can explain as is clear ish mucus (TMI, sorry). He gave me apercap and buscapan. He done a stool sample (all clear/normal), bloods (all normal but low folic acid), gluten intolerance test (normal) buy my symptoms still persist. There’s a part of my worried it’s something more serious (but ruled out most things so unlikely), and a part of me sad as I know there’s no ‘cure’ for IBS. How did everyone feel going through this stage?

 

[Dogwithabone]

Hi everyone, I found something out yesterday I never knew, I had severe Crohn’s for years up until remission a couple of years ago. Been through various failed treatments and surgeries and ended up needing a stoma at 19 yrs old. Anyway my point is has anyone ever heard of acne medication and Crohn’s? Basically it’s an antibiotic - even google clearly states it’s not suitable to ibd patients. I have been prescribed duac for years and years and smothered my face it like no tomorrow anyway, since I stopped using it I have been in remission ever since. Am I right in thinking this could have been what was aggravating it so bad and causing the flare ups and surely I should never have been prescribed this?

 

[maytoseptember]

I was worried about the sedation and thought I might feel woozy and horrible all day, but it wasn’t like that at all. I felt normal the entire time and rested the rest of the day, but didn’t feel unwell.

 

[Never in the World]

I took the 3 doses of Buscopan and it had no effect I guess it’s not ibs cramps after all

 

[Carapop]

Nope. I just deal with it. I hate it when I have an off day and can't go out. Family I imagine, think I use ut as an excuse to get out of things. I can't help it when I know I have to stay near the loo.

I hear ya. I’m on my own too and it is such a lonely isolating condition. And a vicious circle because anxiety makes it worse but how can you not be anxious when you’re liable to shit yourself. And food becomes so complicated and fearful. Takes the joy out of life. I have no advice but can only reassure you that I hear you and you’re not alone.

 

[Shoequeen91]

My heart really goes out to everyone in this thread. The fact we can all relate to each other in one way or another but all have something different wrong with our guts/bowel speaks volumes.

I agree on being forceful with the GP. I went back to mine and they’ve now put me on omeprazole to help my diverticular disease. I do feel a lot better but I’m still so conscious of the slightest thing with my food.

Sending lots of love!

 

[Summer2011]

I need help, I have been back and forwards to the doctors for years now with on going stomach issues, brain fog, fatigue and generally being run down. I was diagnosed with pernicious anaemia in 2011 following the birth of my daughter & I’m prescribed B12 injections as I can’t absorb the B vitamin in my gut. Prior to lockdown they wanted to test me for coeliac by taking a biopsy of my gut (I attempted the camera twice and couldn’t do it) during lockdown my consultant advised all medical procedures like that had stopped and they were diagnosing via two blood tests. I had them and both tested positive. He then wanted a repeat and this one came back normal (prior to this second round I was very unwell and was eating hardly anything - I don’t feel like the results were acccurate) I followed up with a 3rd 6 months later and again tested positive. This wasn’t enough for a clear diagnosis, however i was given a prescription for gluten free products & referred to the dietitian (who I see every 6 months and still do) I was unable to stick to a gluten free diet. Early last year my consultant got back in touch & said they now have a camera you can swallow and it’ll take 80,000 images of your gut and that will help diagnose. I was unable to complete the prep or swallow the camera so I remain in limbo. I’m very aware of the damage I’m doing to my body but also just terrified. I suffer terribly with heart burn/acid reflux which I’m medicated for, I have episodes of extreme nausea, bloating, dizziness, brain fog, diarrhoea but also anxiety too. I so far haven’t pin pointed any foods that trigger me - it can happen at anytime (usually night) it’s extreme pains, I can’t sleep, usually a hot water or a bath is needed. It means I have quiet a bit of time off work & im now anxious about going out to eat. I don’t know what I hope to achieve from this post so thank you for reading it all. I dunno if I need to improve my gut health as my diet is shocking, try and lower my sugar intake, try and work out what’s causing me so much pain. I’m just sick of living like this and feeling so unwell all the time. I’m fed up of being poorly!