IBS/IBD sufferers...

[hol20x]

I’ve had IBS all my adult life, nothing I’ve ever tried seems to make much difference.

It’s 6am and I’ve had little to no sleep all night cos my stomach is in bits.

 

[Mollyoscar_]

After 12months remission, i had to stop my meds because of catching covid and an upper resp infection (on advice with the nurse at my gp) im now in a full blown flare. It started off with a bit of spotting but now theres blood and mucus and the feeling of needing to go and when i go, i just pass the blood. Iv been prescribed prednisone foam enema, im really nervous as iv only ever had oral pred and im shitting it (no pun intended)

 

[Blahblah93]

Thank you so much I feel a bit lost tbh. Especially when they just chalked it up to endometriosis. However I now take meds to stop ovulation so in theory if it was endo it would stop any flare ups.
When I'm well I am fine and think maybe it's all ok and I'm better but then I have a severe attack and I feel defeated.
I've been struggling for 18 years.
How did you get diagnosed?
And are there food that cause issues for you?
I can't pinpoint it but when I've eaten sometimes I immediately need to go to the loo of feel like I need to throw up.

My diognosis was quite unusual. I didn't really have any symptoms then one day had insane stomache pains, rushed up to hospital with a suspected appendicitis. They opened me up and found the majority of my bowel was completely fucked and cut it out, sent it off to be tested and it came back as Crohn's.
Crohn's is autoimmune disease so food doesn't really trigger a flare, but you can have IBS aswell and that is all food related. When im in a flare I do tend to avoid food with skins such as tomatoes, Sweetcorn etc as its hard to digest so when my intestines are all swollen food has a hard time getting through which can sometimes cause blockages.
I'm apart of quite alot of Facebook groups and would really suggest joining them. You can have a read of how people were diagnosed and treatment plans as its such a big spectrum of severity (just type in crohns UK and loads should pop up) . Fight for a diognosis and don't let them fob you off. Another great help is the crohns and colitis charity they have helplines and honestly it's a real comfort. You got this!

 

[MickeyMouseClubhouse]

Hey guys, great news, I’ve tested positive for Covid this week!

IBD team have told me to stop taking Azathioprine for 2 weeks.

I’m not feeling too bad at the moment, oxygen levels fine, mostly achy, headachy and coughing.

I had infliximab last week so thinking this could be a slow recovery.
Anyone else have any experiences they can share or have any tips!?

 

[Hello Kitty]

Reading things like this really annoy me. I wish I could naturally heal my Crohn's

Sam Faiers opens up about 'naturally healing' her Crohn's disease

Sam Faiers has opened up about 'naturally healing' her Crohn's disease.

www.dailymail.co.uk

 

[Holidaybobs]

Not sure if this is the right place to post. But, I was diagnosed with IBS when I was 13, I’m 27 now! For its entirety, I have had periods where it’s totally manageable and then awful for months on end. I also, seem to not be able to consume certain foods for a few years then I’m fine again (weird). Anyways, I’ve been suffering with nausea/vomiting, feeling faint and having hot flushes for the last ten years. I initially thought it was part of my IBS and lived with it. This last year it’s become absolutely awful and I had an endoscopy a few weeks ago. They said I have non erosive gastritis and have referred me to the specialists at hospital. Has anyone had gastritis and have any recommendations on how to ease it? I’m on omeprazole but, I don’t feel like it’s effective. I’ve read celery juice can help but, not sure! I’m willing to try anything as it’s currently controlling my life and I’ve never felt so bad. It’s also hard to explain to those around me because, they don’t understand how shocking I feel or why I don’t want to go out a lot of the time with them as I might take a funny turn.

If anyone has any tips, please let me know! Thanks in advance x

 

[Carapop]

Glad I found this post x I've got a large sliding hiatus hernia, diverticular disease and suffer with bloating, cramps and diaorhea. Anxiety can set it off. Certain foods. I'm type 2 diabetic and tried metformin and ozempic. Never pooed so much in all my life 🫣 serious though, I was housebound. The nurse kept saying persevere. Altogether, I had about 6 months of staying near the toilet.
Now, I'm on co codamol for pain so alternate between being bunged up or running to the loo. It takes over your life!

Oh god you poor thing. I’ve experienced 2/3 week bouts of chronic diarrhoea with insane anxiety alongside and it is as close to unbearable as I can imagine. But it’s interspersed with periods of normality. Months without a break sounds horrific. Do you have someone with you to support?

 

[Mollyoscar_]

Blerghhh 12months in remission, caught covid and got advised to stop meds to allow my body to fight it off and now im in a full blown flare, shitting blood multiple times a day, my back is in bits and i when im not at work im asleep because the fatigue is too much.
It takes at least 2days to hear back off the nurse, her voicemail says if in a flare contact gp or go a&e, so i had a tel appt with my gp who told me if im bleeding i need to.go a&e because she cant prescribe me anything because of the meds im on tbh the thought of waiting god knows how many hours in a crammed waiting room fills me with dread that id rather shut up and put up with it.
I dont get bad pain, i get uncomfortable bloating, back and joint pain, the bleeding & fatigue.

 

[Lucyxxxx]

My doctor has given me buscopan but tests ruled out chrons and IBD. I am lactose intolerant as well so obviously dairy out the window. I find I can't eat red meat or alot of things without being bloated and gassy for DAYS. Sometimes I'll have night sweats as well. Apparently everything is all normal but when I'm living on a diet of porridge, fruit, coconut milk and rice cakes clearly something is amiss.

 

[MickeyMouseClubhouse]

Ugh so sorry you’ve got the dreaded Covid!! I tested positive 3 weeks ago and I have crohns, it didn’t affect my meds as I had my Infliximab infusion the week before.
Not gonna lie - it wasn’t pleasant! I couldn’t believe how poorly I was considering I’m double jabbed. But it only lasted around a week! I mainly suffered with vertigo, migraines and exhaustion plus a heavy head cold. Im feeling back to normal now but still having a nap every day, think it’ll just take a while. I’ve been in “remission” for a good few years but have always struggled with fatigue, so unsurprising it’s left me tired.
Really hope you have a fast recovery! Take care and make sure you get lots of rest xx

Yeah it hit me yesterday, mainly aches and fatigue. Luckily work have been really good about it, so I can take the time I need to get better

 

[Proof8]

And here is me sat pumped full of drugs and probably going to have an ileostomy soon. Knew I should of ate more apples n took more vitamins.

 

[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

 

[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.