IBS/IBD sufferers...

[funkimunki1984]

Hi all just found this thread, it’s so nice to know I’m not alone in the world or made to feel like I’m going crazy.

I got diagnosed with IBS in 2003 after I lost two stone in a month from being unable to eat and being hospitalised as a result. Found I can’t eat many carbs such as pasta, rice, bread and potatoes (much to the chagrin of my Irish side - officially the joke in my family). So I managed it with diet and exercise.
Then in 2020 I ended up on two sets of antibiotics with a UTI. But with it being lockdown no GP saw me to confirm with the dipstick test, so basically I ended up with colitis due to killing all my good bacteria (lesson learnt always take yakult with antibiotics) as a result of having C Diff. I spent two weeks in hospital on a drip with crazy strong meds in isolation.
I ended up with worse stomach pain than before. Apparently the colitis is gone but I still have all of the symptoms. I begged my UK dr to help, had scans and tests to be told it’s IBS.
I moved to the states and within a month I had a colonoscopy biopsy and I’ve been told I’ve got microscopic colitis which doesn’t show on scans. Same symptoms and effects but invisible. As if life isn’t hard enough with any bowel condition, now it bloody hides.

 

[ChampagneBox]

Touch wood, I’ve not been constipated for quite some time, but when I have that awful dead weight in my stomach when I am constipated makes me consider a colonic!

Spoiler: Too much info

sometimes when I have gone to the toilet, I don’t feel like I have properly been/finished I guess I just need to eat more fibre and drink more water but too much fibre can make me worse!

The feeling like you haven’t finished can be haemorrhoids! But yes lots of fibre water and not sitting for too long can help!

 

[MickeyMouseClubhouse]

This is me.
Currently being referred back to my bowel consultant as my gynaecologist is like nah this isn't endometriosis.
They think it's Crohn's
I have endo but it looks this has masked the crohns and I was just ticked off the list and now the gynaecologist is like it's not endo but I have fallen through the cracks.


I have been extremely ill. It's no fun.
I've been hospitalised a few times, with severe bowel Infections. They've found tethering and weak areas of the bowel and scars etc

I have some hideous problems that doesn't coincidence with my period or ovulation.
Blood in stools
Fever...feels like I'm coming down with flu
Migraine
Sinus problems
Blood in stools
Mucas in stools
All of a sudden horrendous diarrhea
Constipation
Extreme tiredness with a flare-up like 14 hours sleep and still can't wake up
Brain fog
Face rash with flare up
Mouth ulcers
Have had angular cellulitis that needs strong meds as my body can't clear it up and fight the infection
Horrendous stomach pain in areas I can pinpoint ...like I was to pull my intestine out
Stomach pain makes me faint

Idk if this is crohns but I have it in the family and my GP is now going back to my bowel consultant.
I don't buy that it's endometriosis

With a list of symptoms like that a referral to Gastro would sort it out.

My GP decided they'd try and diagnose and spent ages faffing about. I moved house and GP, and the new GP referred me to Gastro. First apt with the consultant and he said if was a betting man he'd say it was Crohns. Colonosopy, lots of bloods and an MRI and I had a diagnosis and was on treatment within 12 weeks (this was 2017, so pre Covid).

Had a couple of flares early on, but been in remission now since Nov 2018.

Hope you got well soon, as others have said, shout if you have any questions!!

 

[Apple In My Pie]

Eh I have just been tentatively diagnosed with this after two months of acid reflux hell which has just turned into wind/bloat/pain and constipation, not sure if it is IBS but do relate to some of the symptoms & have family links (literally every family member I know has it) I have been put on the evil looking FODMAP diet, this close to Christmas as well, how evil and inconsiderate… someone please help me all my lovely broccoli and cabbage, no more! i have genuinely spent the last 3 years having broccoli n cabbage n asparagus w every meal (it’s all fun and games at Chez Apple ) - but no more!

(In all seriousness though I have been trying to eat healthily for the last 3 years in an attempt to slim down and have ended up with a shitty mindset towards food, not a full on eating disorder but disordered eating iygwim and the guidelines to this diet just sound awful I feel like there’s nothing nice to eat!?!)

 

[maytoseptember]

I've had IBS for about ten years now, and I'm being sent for an urgent colonoscopy in the next couple of weeks due to stomach pain waking me up at night. I've never had one before and I'm terrified. 🫣

I had one last year and prep was worse than the procedure. They give you sedation which makes you feel mildly drunk, but you’re with it throughout. Then, later that day, you’ll realise you’ve forgotten most of it.

 

[judgejohndeed]

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.

This is fascinating to me because I was just about to say that I was on the combined pill for years and suffered terribly, but having come off and onto the mini pill my issues have almost all resolved...never in all my years of begging doctors to help me has anyone ever suggested it could be the combined pill which is pretty horrifying really

 

[Jellycat369]

Hi all, thought I'd join this thread

I was diagnosed with Crohn's in 2015 which my specialist thought might have been triggered by an over reactive autoimmune response to gastroenteritis. Following diagnosis I was told I would need a low dose chemo for treatment. Fortunately I've been able to avoid this by making dietary changes. My key trigger now is stress which with a stroppy toddler and a unwell newborn is quite hard to manage. Currently doing okay though but am struggling to lose the baby weight.

 

[Sheabutter]

I am experiencing IBS-C right now. It feels awful. A run would help but I don’t feel comfortable going by myself in the city

 

[soph30]

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

I agree I need to but tbh I don’t really see many radar bathrooms? Trust me I know all the bathrooms in my area and I can think of ONE radar bathroom, and the normal loos are usually working there

 

[Laurst]

Thanks so much for replying. I've had a loss of appetite over the last few weeks but think it could be because I've been winding myself up and googling things. I also flip between constipation and looser stools. My doctor called last week to give me the results of blood tests (but I couldn't understand him ) he said nothing to worry about, and a slight deficiency in vitamin D, as well as inflammatory markers sligthly up (but didn't say why, which has worried me!! My mind is into overdrive. What does that even mean?)

so I'm speaking with a different doc tomorrow, whom I can hopefully understand.

Do you think it's all linked? I literally Google everything any time I have a slight twinge or pain. It's awful.

 

[WilmaHun]

I find that stress is the biggest trigger for me, and like you say it begins a vicious cycle when you then start getting anxiety about the IBS itself. Are you stressed/do you suffer from anxiety outside of the IBS? Personally I do and have found that working on this has helped. I found it hard to believe that a bad mental state could have such severe physical symptoms (even as someone clued up on mental health) but it’s undeniable since I noticed the correlation. Be sure to mention it at your review, your GP might point you towards some coping mechanisms or give you some anxiety medication to take during flare ups. Hope you feel better soon

I am quite an anxious person overall so I think you're probably right that isn't helping. I'll definitely bring it up with my GP as hopefully she'll be able to help. She did once mention that anti-depressants can help with anxiety but I declined as I don't feel like I want to be on those! Hopefully there's something else she can suggest for me.

Do you eat a lot of meat? I’ve found especially pork sets me off! My symptoms are better when I eat less meat x

I don't eat any meat, only fish. I did find red meats were setting me off but then decided to cut meat out all together as to be honest it grosses me out when I find a vein in chicken or something haha!

 

[hol20x]

I’ve had IBS since a teenager ( now late 20s). Since having my son 7weeks ago I’ve had non stop flare for the last 2weeks. But the difference is there been some blood in it (red) & it’s been so mucus filled. I’m absolutely dreading if it is just IBS or something more Saying that I think it’s lack of sleep/dehydration/I ate a spicy dinner with tomatoes in last night & just in general not eating well.
My IBS disappeared in pregnancy! Anyone find the same?

Mine disappeared when I was pregnant too! The blood could be a tear, you're best contacting the GP x

 

[Bobbleowl90]

Yes I have Crohn's. Do you have any other symptoms?

I had a colonoscopy and that's how I was diagnosed.

Senocalm won't help with IBD. It may with IBS?

Sorry I meant IBS!

I have stomach cramps when eating and can go up to a week between going to the loo and feeling sick a lot/indigestion type feeling but it’s the bloating thats the worst.

 

[Proof8]

I had to go to my GP on Tuesday last week as having stomach cramps (extremely painful like labour pains) and diarrhoea for thirteen days at that point. Now on day 18 of this. I'm currently stuck in bed again crippled with pain. Taking buscopan and it eases it slightly. Don't know what else to do.

GP is testing for infection, blood and calprotectin.

Today no diarrhoea but soft poo and not a lot of it. Diarrhoea previously has been very urgent and very very watery, like no substance to it at all.

I've cut out dairy to see if that helps as i was having extreme cramps - like doubled over in pain level - and diarrhea in response to eating dairy. I wake up with dull, gnawing pain which actually eases if I eat or drink. However I then pay the price of crippling cramps later on.

Last night I had some salad, plain pasta and roast lamb and was absolutely fine.

Earlier today I had a pitta bread with baba ghanoush and feta cheese and the pain started an hour later. In response I took a buscopan and ate some ready salted crisps.

Pain is easing now after around an hour in bed.

Any advice gratefully received.

I'd try to stick to low residue diet and plain easy to digest foods. Just incase there is inflammation there. Also jelly babies can help thicken things up. Try taking bruscopan regularly.
Hope that's a little help.

I have severe uc and ibs so I get how you feel and it's awful.

 

[ThisIsMyDragName]

I'm just worried cos I have a heart condition but the GP said I'll be fine, I'm gonna mention it to the consultant anyway. All I've had today is toast so hopefully the prep doesn't have me up all night.

Going to keep my fingers and toes crossed for you, I hope you feel ok and are out at ease about things as quickly as possible

 

[Lucyxxxx]

It’s little consolation when you’re terrified of eating anything!

Whilst it’s annoying not to have any answers, don’t forget to be relieved that doctor isn’t concerned re any chronic conditions . Hopefully the dietician will be able to provide some support.

Anything fried is out the question. I will be ill for days. Its hard work when my fella wants to take me out for food have to make sure it's somewhere that can cater for me. Really miss spaghetti bolegnese and pasta and meatballs, cheesecake, toffee Danish. I do find buscopan helps ease my bloating when I'm having an episode. I'm 5ft as well so it's very noticeable. Some days it's like I have a massive balloon in my belly that needs to be popped.

 

[maytoseptember]

I’ve been having bad cramping in my stomach (left and right) and horrible pain between my boobs for a while now. I have been diagnosed with diverticular disease but my bloating is ridiculous. I’ve got an appointment for endoscopy on 16 November and I’m so unbelievably terrified. I’ve just read the leaflet that has come with my letter and I’m so torn between sedation or not.

Has anyone got any advice? Could anyone let me know what the tube is like? I don’t want to not have it but at the minute I can see myself pulling out due to worry. I’m being tested for IBD (purely precautionary) and my doctor thinks as it doesn’t look to be gallstones (USS clear but very gassy) that I could have gastritis and/or bad reflux but I’m being told the only the way they can check this is endoscopy. I’ve just tried for so long to not have anything invasive.

I had a colonoscopy with sedation and I was a bit scared of feeling totally out of it but I wasn’t at all. Felt a slight head rush when it was first injected but I was otherwise “with it” the whole time. I was given a drink and a biscuit afterwards and got out of bed (there was a nurse there in case I wobbled!) but I felt completely fine.

Afterwards I felt like maybe I’d forgotten large parts of the procedure? So I’d definitely go with the sedation.

 

[Peggy5]

Omg! thank god i found this thread i’ve wondering for ages whether i have IBS.
My father and cousin have Chrohns/IBD and have to inject.
My dad, grandad and uncle have all had their haemorrhoids removed too.
in 2016, i just randomly become constipated one day and i’m not even joking i was on there for about. an hour TMI**** the smallest thing came out of me and ever since that day i been constipated the gp gave me cream and lactulouse. lactulouse alone is really awful, dulcoease (not dulcax) i find works really well and also a combination of fybogel when things get REAL bad. however before i ever got constipated i was always known by everyone (my family) as suddenly getting the urge to go, it’s so bad i hate it. but if i don’t have constipation i get really stronge urges to go to the loo, i’ve had times i’ve literally had to run of the train before, out cars, feel like i’m going to pass out if i don’t make the toilet, never pains more discomforting, bleeding when wiping, and the sensation of not feeling completely empty sometimes i even feel full up, like i’ve had a whole meal that’s how unempty . i don’t want to inject like my cousin and my dad but i’m worried if i don’t tell the gp’s it’ll get worse. what do you think? does this sound like ibs? or anyone with likely symptoms also?

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

 

[Carapop]

Thought you folks might appreciate this. Or hate me for ruining Maltesers!

 

[YellowLadybird]

I worry so much about my partner, who probably has some form of undiagnosed IBD that really impacts his quality of life.

He had a parent with Crohns, which he has been tested for and doesn't have, but the lack of dietary adaptations caused them to have what must have been IBD of some kind - although dying young, of an unrelated cause, means we can't know for sure.

Only way my partner copes is because he has a different issue that means he is prescribed codeine (an opioid) painkiller, and a side effect of opoids is constipation. For him, that means moderate normality, otherwise he is going 10 times a day even with regular immodium.

More than once he was referred for a colonoscopy, but they have created a stupid system where you have to ring post-referral and book directly, but they don't answer the phone. So he has been rejected about three times in the last year, and has given up trying. It makes me so angry, because if he had bowel cancer (which I don't think is likely, but would result in the same referral pathway from what I can tell) he would probably have died by now. All because people don't answer the phone, which artificially reduces their waiting list numbers. It's scandalous.

We are moving abroad and I can only hope our new home actually takes an interest in this, and knows the value of preventative treatment.