IBS/IBD sufferers...

[WilmaHun]

I suffer quite badly with IBS and am currently in the middle of the most horrendous flare up. I had to leave work yesterday as I couldn't cope with the pain, bloating and bowel movements. I currently take mebeverine as prescribed by my GP although am due to see her in a weeks time for a review as it doesn't seem to help.

Are there any fellow IBS/IBD sufferers? (I'm aware IBS and IBD are completely different, however some symptoms are very similar). How do you cope? Any tips for being able to manage the symptoms at work? Just wanting some reassurance from other people who suffer as sometimes it can feel like you're all alone! It's a difficult thing to talk to people about if they don't suffer, as often then just think "oh get on with it it's a bad belly ache!". In reality for me, it's so much more than that! My general symptoms are bloating, diarrhoea, cramps, sweating, heart racing, feeling completely fatigued. On top of that it causes the worst anxiety, obviously being anxious then doesn't help my stomach so it's a vicious circle! Following yesterday's flare up I am feeling incredibly anxious that it will happen again, I'm shakey, nervous, every grumble my stomach makes I panic. It's truly awful.

Personally, I can go months without a flare, but when I get one it completely knocks me for six! I know dairy sets me off, so I avoid that at all costs, alcohol too. I also know I'm bound to get a minor flare around my menstrual cycle. Anyone similar?

 

[Kittylover2019]

Hi,

I have distal colitis and was diagnosed when I was 21, I had been having many symptoms which prompted me to see my GP which included bloating to the point I was asked 'when are you due', being overcome the feeling I was about to puke, going to the toilet loads and I was also losing blood. I went to the GP on repeat and was told I had IBD, it was common and sent on my way, blood tests showed some abnormalities but they never pursued anything.

My family paid for me to see a gastroentrologist privately for a consultation and with no tests or investigation he said 'ulcerative colitis'. It was around £200 and he then transferred me to his NHS list for urgent treatment. I am almost 30 and still under his care, still suffering and i firmly believe of my GP had listened and cared about my complaints, it wouldn't be as bad as it is now. I've had horrendous health since and I think it has been a domino affect on my body.

I would highly reccomend, if you are able to do so - going for a private consult.

I am now on vedolizumab treatment.

Dx

I was diagnosed at 18 with Ulcerative Colitis, stress definitely brought mine on.

I was using the toilet around 15 times a day, losing an unreal amount of weight. It was almost 14lb's one week alone. I managed to control it myself with eliminating certain foods for many years and and was in remission. Over the years I have had many mini flare ups but I could tell they were getting longer and more severe. Things came to a head around 4/5 years ago where I was a virtual recluse, the fear of going anywhere and not being able to find a toilet was unbearable. The number of times I was using the loo in a day was no joke, it was also disturbing my sleep as I was having to get up in the night.

I decided enough was enough and after many prescriptions of steroids I asked my consultant to give me a bag as I was getting desperate. I got to the point of telling my husband to leave me and go and find a new partner who he could live a better life with (reliving that has actually brought tears to my eyes ) anyway my consultant said absolutely no way before we try other options and he was excellent about it. He said go and research the different immunosuppressants and tell me which one you want to try first.

I am in my early 40's now and on 8 weekly infusions of Vedolizumab and have been in remission since I started it about 4 years ago.

Bowel issues are horrendous, I feel for anyone suffering, the paralysing fear of not being near or able to find a toilet is not to be taken lightly or the toll it takes on your physical and mental health

 

[Lulu Goss]

Is anyone on here also a member of the IBS Network or similar forum? I bought one of those cant wait cards off there, and a radar key for the times you're absolutely desperate but touch wood I've never had to use them yet!

The toilet while you’re out situation is one of the worst parts of it I think. Going out where there aren’t any toilets like parks, or places where you can’t quickly get to the toilet (bars, festivals, anywhere busy really) makes me feel so anxious. I feel like even if I’m not unwell at that time, I still can’t relax at places until I know where the toilet is and that it’s there if I need to use it.

 

[Carapop]

I actually found drinking the prep even worse than the results of the prep! The procedure itself is a dream. The toast after ambrosia.

 

[Shoequeen91]

Posting again on here because I feel like some of you will understand it here but I had my iron infusion yesterday and apart from being wide awake and having broken sleep, I feel like a new woman. I’m not sure if it’s psychological yet but I’ve been awake for about an hour and I don’t feel like I’ve only had six hours sleep, I feel so ready for the day which hasn’t been the case for a long time. I don’t want to jinx myself but I’m actually shocked and so grateful that someone finally listened to me (after a lot of begging) and actually made it happen.

 

[Blahblah93]

I have Crohn's Disease and IBS. I've had the majority of my bowel removed and I'm currently on a chemotherapy drug and steriods. Been having to have a liquid only diet for the past 4 months on and off. Currently in hospital with an anal fistula that requires surgery. Oh the joys of having IBD.

 

[Milfordcubicle]

I have crohns, have had a bowel resection and inject myself once a week and have infusions every couple of months. It has literally destroyed my life I had over 25 hospital admissions one year and currently have covid and am really high risk cos im on immunosuppressants. It sucks

 

[MickeyMouseClubhouse]

As mentioned above. I’ve got Covid at the moment. I was double jabbed as of April and by July I had no detectable antibodies left (I’m part of a research study so get tested every 8 weeks).

they need to do more for immune suppressed people!

Update if anyone is interested. I’m out of isolation now, still getting bunged up head and coughing a little bit mostly ok.

UK Gov antibody test showed I had antibodies prior to this infection! So no idea what’s going on with antibodies!!

 

[Inforapenny]

What about endometriosis? (I've written about this on the endo thread) Bear with me...
I went undiagnosed for 15 years. Fobbed off as ibs which I knew wasn't correct. I get such bad flare ups I've been in bed for days, horrendous pain, passing blood, mucus, the stomach cramps etc I am so ill it feels like flu and severe food poisoning. Also my immune system is poor so I get rashes and can't fight infections so my lips can be severely crusty and gross with angular celulitis so I need antibiotics. My periods are not heavy and I don't get pain in that area.

Be very wary of it just being IBS

It got so bad I ended up being taken in to hospital suspected appendix or food poisoning and spent a week on a bowel ward. They found my large intestine was/is a mess! They found thickening, holes, adhesions, tethering etc
And because of the tethering an infection had happened.
Anyway they preliminary diagnosed diverticulitis (I don't fit any of the criteria) then crohns and then weeks later took me in for emergency bowel cancer check.
All sounds very dramatic!
Not one doctor really asked about my history. It was my mum who suggested endometriosis of the bowel because flare ups seemed to happen around ovulation or my period and low and behold this is the cause.
Due to the severity of my endo it has destroyed my bowel and lots of bleeding into the bowel so I get really unwell. I am now waiting for surgery.
I've been told endo can mimic other illness such as crohns and due to the nature of my illness i have inflammatory bowel disease. They also suspect crohns but that the endo covers up this disease.

I had never in my life considered endometriosis in my bowel.

If you're medicating with the mini pill this is a classic example of endometriosis

 

[chocolate choux]

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

 

[Carapop]

The prep is the devil's juice I've gotta set my alarm for 6am on a Sunday bloody morning and drink another litre pray for me

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

 

[BirkenheadTranny]

Oh I've found my people ulcerative colitis here. Been on Azathioprine for years but I've been in a flare up for a few months and keep having accidents 🫠 Got a colonoscopy tomorrow and have drank the first litre of moviprep which was disgusting as usual

 

[Olive16]

Another Episode - had to leave work - stomach was churning, sickness, diarrhoea, fever... going to book another Dr's Appointment, as this is starting to stress me out and get me down!

 

[BirkenheadTranny]

The prep is the devil's juice I've gotta set my alarm for 6am on a Sunday bloody morning and drink another litre pray for me

 

[Synthetic]

Hi,

I have distal colitis and was diagnosed when I was 21, I had been having many symptoms which prompted me to see my GP which included bloating to the point I was asked 'when are you due', being overcome the feeling I was about to puke, going to the toilet loads and I was also losing blood. I went to the GP on repeat and was told I had IBD, it was common and sent on my way, blood tests showed some abnormalities but they never pursued anything.

My family paid for me to see a gastroentrologist privately for a consultation and with no tests or investigation he said 'ulcerative colitis'. It was around £200 and he then transferred me to his NHS list for urgent treatment. I am almost 30 and still under his care, still suffering and i firmly believe of my GP had listened and cared about my complaints, it wouldn't be as bad as it is now. I've had horrendous health since and I think it has been a domino affect on my body.

I would highly reccomend, if you are able to do so - going for a private consult.

I am now on vedolizumab treatment.

Dx

 

[Readread]

I suffered from 'IBS' for years with doctors just uninterested in investigating. When I moved to Dubai and made use of private medical care through my sponsor (employer) I was diagnosed with Ulcerative Colitis. The NHS just pan everyone off with having IBS.

If you're finding your symptoms difficult to manage consider the FODMAP diet.

 

[Begborrowsteal]

Yeah I have IBS, its savage. The fear when your belly drops stress definitely makes mine worse. Certain foods set it off every single time (mash & mcdonalds!). I eat all the problem foods off the fodmap stuff lol

 

[hol20x]

Oh I've found my people ulcerative colitis here. Been on Azathioprine for years but I've been in a flare up for a few months and keep having accidents 🫠 Got a colonoscopy tomorrow and have drank the first litre of moviprep which was disgusting as usual

The prep is terrible! Definitely the worst thing about the whole process. Hope it all goes well for you.

 

[BirkenheadTranny]

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

I put it in a gin glass to try trick myself into thinking it was a G&t but it didn't work

 

[Inforapenny]

IBS and IBD are quite different, Im not sure they can be put in the same category.
I have IBD