IBS/IBD sufferers...

[Blahblah93]

In a crohns flare and now on steroids again. Having to be tube fed again. So done with this disease.

 

[MickeyMouseClubhouse]

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

Makes you wonder if she's actually got Dr's keeping an eye on her CRP levels for early warning of inflammation. Not keeping track of it is very risky. I couldn't do that to my family, it can be down to luck at the best of times if you have a flare that puts you in hospital or not, let alone if you're completely not tracking how your body is coping.

Recent research suggested that once diagnosed, the outlook is much better being put on something stronger (like infliximab) from the start, with less particpants requiring surgery.

 

[Blahblah93]

Sending love

I have Crohn's and had an anal fistula 10+ years ago, the pain from that was awful. I was so relieved after the surgery.

What medication are you on at the moment?

I'm currently on Methotrexate and tbh I absolutely hate it, the side effects are draining. Currently on 40mg of steriods (for 4 weeks then tapering off over 3 months). Yeah man the anal fistula is not fun, the amount of blood loss was insane before I got it diagnosed. Had to have a blood transfusion as had really awful anemia. Hoping I might get a drug change and once this op is over I should start feeling more human. I think if nothing changes a stoma is on the cards which tbh I'm kinda hoping for as I need to get some sort of life back.

 

[MickeyMouseClubhouse]

Can I ask does anyone find they can eat a mouthful of something and suddenly the stomach pain starts and they have to run to the toilet? I can go several times during a meal but I don't get why it happens so quickly like that.

Yeah that can happen for me during a flare. In remission right now but that can happen after drinking tea or finishing a meal with fibre in

 

[bongsandstuff]

Hi guys,

Wanted to post on here as I’m desperate and I’m losing hope. I’ve been chronically bloated for over 3 years. By chronically I mean that my stomach is constantly large, swollen and distended. It never goes down. I’ve been begging and pleading to be heard and have contacted the doctors so many times I have lost track. I have extreme stomach pain, my bowel movements are painful and a total mess, I have mucus in my stool and my stomach is always uncomfortable. Despite begging for help I’ve been lied to and fobbed off by the doctors. All they do is send me for constant blood tests. Over the pandemic I had no help and just had to deal with it. At the start of this year I managed to get an ultrasound booked but it took months for the results and I was initially told nothing was wrong and my GP had said that no further action was needed. Then when I asked another doctor about it at another appointment I was told they suspected adenomyosis as my myometrium was oddly shaped and thickened. I pleaded for a repeat ultrasound which I was given in April and have yet to hear the results for. It’s been over 3 long years and I’m fed up. My stomach is swollen and painful all the time and nothing helps. Most doctors tell me I’m likely to have IBS but no one cares. I’m in agony with my swollen stomach and I’m exhausted from begging to be heard. I’ve practically given up. I’ve been trying to lose weight but it just won’t budge which I think is to do with whatever undiagnosed condition I have and the persistent bloating.

Written by someone who is exhausted both mentally and physically from this unknown and debilitating condition.

 

[soph30]

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

 

[Laurst]

Unfortunately anxiety and stress does really impact IBS, so it could be you have IBS made worse by anxiety but equally having a painful or off stomach when you’re anxious isn’t uncommon either even when you don’t have IBS. Inflammation is what they look for when testing for IBD, if your markers are only slightly raised though they’re unlikely to be within the typical levels observed when someone has IBD. So it’s not a worry that they’re slightly raised, if they were too high you would’ve been referred for a colonoscopy to check. They can fluctuate as well so if you’re having a bad stomach episode at the moment and your markers aren’t IBD level I personally wouldn’t worry about that (they tend to be higher when you’re having a flare in my experience). Do raise all your concerns with the other doctor you’re going to speak to though, maybe discuss ways to manage the anxiety either through medication or CBT (interestingly CBT is also used as a treatment for IBS as well)

Thank you so much. Everything just scares me and points me towards cancer and that I'm dying. I lost my mum really young, so I worry massively, not just about my health, but the health of my close family relatives as well. I've not been hungry quite a few times over the last few weeks, and I'm putting this all down to anxiety as well, but then the anxiety questions that and you worry that you are worrying you're doing is justified because something really is wrong. It's like a vicious circle.

 

[LaurieLaurie]

I had horrific ibs but I cut out all dairy and wheat about 6 years ago and I’ve been ok since.

 

[Synthetic]

Try to keep in mind that it's only temporary pain for a long term gain. Good luck

 

[hol20x]

I hope your colonoscopy went ok? Been thinking of you!

Aw thank you! It went well, it wasn't anywhere near as bad as I'd imagined. They took some biopsies so I'll find out the results of those in about 6 weeks.

 

[WilmaHun]

Does anyone else find they have to force themselves to eat meals, even when not hungry, just to stop a flare up?

I wasn't hungry at lunchtime, so didn't bother having my lunch as I didn't want to force myself and within 90 minutes I was having a flare, which then resulted in me having a panic attack

I find I have to eat at set times of the day otherwise it messes my stomach all up. I feel horrendous.

 

[WilmaHun]

@WilmaHun can you ask if you can go home as you don’t feel well?

I feel so guilty even asking. I had to leave early the other day due to feeling unwell. I keep thinking "only 3 hours to go". I'm just trying to muddle through! I had a little nap in my office on my lunch break and feel a bit better.

 

[Blahblah93]

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

It sounds like Crohn's to be honest. Especially the mouth ulcers.
I've got crohns (had it since I was 13) if you ever wanna chat or ask anything just drop me a message.

 

[Littlediamond28]

Does anyone suffer with endometriosis? I was diagnosed a couple of years ago and put my bowel issues down to that. I had surgery to remove it and my doc advised there was no endo on the bowels but I'm still suffering with bowel issues.

I'm still suffering with diarrhea every morning (2-3 times), cramps in lower tummy, worse on the left side but can happen all over, I have chronic fatigue nearly all the time, headaches, joint pain and the most annoying thing has been recurrent mouth ulcers all over the back of my throat.


My GP has done bloods and my CRP levels have been consistently raised, she mentioned this can happen with IBD.

Has anyone experienced anything similar? I don't know wether to go back to gyne or try a gastroenterologist?

 

[it’s not been changed?!]

This is the bane of my life! Even at my slimmest this could leave me looking like I was pregnant!
I’ve read that colonic irrigation is good for it and am seriously tempted...anybody tried it?

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!

 

[SpindleWhorl]

I sometimes go a couple of months without any problems but when mine flares up my stomach is absolutely horrific for a days at a time, can't keep anything in. I had diarrhoea about 6 or 7 times in one night the other week from a food that doesn't normally cause me major problems, and I think it's what also caused a UTI I came down with shortly after. Mine seems so random, maybe stress is a trigger

 

[Blahblah93]

My consultant said to put lime cordial in it and honestly it didn’t help the taste at all and now I can’t even smell lime without it turning my stomach

Eurgh I made that mistake. Put my favourite squash with it and now even the thought of that delightful peach cordial makes me heave.

 

[Olive16]

New Reader Here... I've just been sent home from work this afternoon, as I have had sickness and diarrhoea - whilst this is happening I'm sweating profously and feel like as if I'm going to pass out... i have excruciating pain in my stomach just below my ribs... once the sickness and diarrhoea has stopped I need to lay on a cold floor to calm down... after a few hours I feel pretty normal - this has happened 4/5 times now - and Drs always put it down to Gastroenteritis!? Helppp!!!

This was my original post... since then I have been tested for Coeliac, Crohns and something else... however nothing came back to confirm any of these... the above happened again today. I am becoming so frustrated that I have no clue what is causing this or what I can do to stop this happening... I am just about to start training for the Police, but feel this is going to affect my career if this is something that continues to happen ever 6mths or so... Is it likely IBS? Or could it be something else... I'm just at a loss as to what to do! Sorry to be a moany myrtle!

 

[Blahblah93]

Hi all,

I have a colonoscopy scheduled the first week of June. I was given a prescription for Moviprep. I did it with Cleanprep ten years ago and it was horrid but I’ve been reassured that this one isn’t half as bad. Or maybe just half as bad! No horror stories please.

I’m looking for tips and tricks from any unfortunate experts with experience. But have folk followed particular diets in advance? Found ways to make the prep less uncomfortable? And again no horror stories please.

I know it’s not going to be pleasant, but I’ve had it before, I’ve had surgery involving intestinal resection, and at the moment am battling chronic diarrhoea so my threshold for discomfort has increased over the years!

I really just want to see if there’s anything I can do to make life a little easier on the days before, of and after.

no horror stories please!

Okay. It's gross but doable.

Make your moviprep and put it in the fridge so it's ice cold. Drink it through a straw and get it right back on your throat so it avoids those taste buds. Get yourself a wedge of lime and suck on it after every sip.

Buy moist tissue paper wipes as your arsehole is gonna hurt from all the wiping.

I basically only eat all the stuff that's on your approved list for a week before so theres not too much to clear. Once your poo is running clear you can stop drinking the prep.

I have these twice a year so I see myself as an unfortunate expert.

Next time you have one ask for picolax instead.

 

[MickeyMouseClubhouse]

Thanks, it's just weird how a mouthful can do that in an instant. I hate it, I couldn't eat out like this.

Yeah, it can put you off eating full stop!