IBS/IBD sufferers...

[Laurst]

Maybe ask your gp to send off a stool sample to check your calprotectin level. Its a more reliable test to check for inflammation in your digestive tract. A normal level is around 20 - 50 ... my worst was over 6000 when i was in an active flare. If your levels are higher than the norm, they should refer you to a gastro. Although ibs can have similar symptoms of ibd, they are also very different and treatments are different aswell. Ibs can be helped with diet, buscopan, mild laxatives if constipated. Heat can help with stomach cramping, a warm bath. When im flaring my electric heat pad is a god send!

I'm still waiting for results of the blood tests that I had a while back. I'm hoping it's nothing sinister.

 

[missposh]

I have issues with the muscles being triggered to go, so have to use a medication for that. I have had GP's and such argue over the years to use movical but that just ended up with emergency visits to the loo. More and more food has bothered me and I'm at a loss, anyone else with this issue vs the runs? It's frustrating too when the muscles are finally triggered, by the med, I am in horrible pain!

 

[bongsandstuff]

@bongsandstuff Really sad to hear what you’re going through. I’ve found relief from bloating by eliminating FODMAP foods from my diet. There are over the counter solutions you should try as well - things like IBgard. See if your pharmacist can recommend other items as well.

Thank you so much! Just need to try what I can and hopefully I’ll find a solution

 

[Carapop]

It could be a parasite I suppose, hard to know. We think it came from an undercooked burger and is food poisoning of some sort, as my own stomach problems started a few hours after eating in a burger restaurant (that looked, at least, to be clean and reputable but you just never know!). We were on bottled water only when we were there (including for teeth cleaning), lots of hand washing/sanitiser etc. I think my stomach is a little delicate as a result of having a ‘nervous stomach’, but my husband generally has a strong constitution. Despite also suffering from anxiety, his stomach/bowels are never affected by his moods in the way mine are!

We were still able to enjoy the holiday, we were just a little hampered by dodgy bellies! It’s not the worst I’ve ever felt or anything, it’s just been quite prolonged and doesn’t seem to be getting any better which is weird.

Thanks so much for replying!

A week is a long time to not see any improvement at all, how is hubby now?
Peppermint tea can help with nausea. If nothing else, warm liquids are comforting I think. Hot water bottles too. But if you’re prone to a nervy tummy you probably know all this anyway.

I know it’s easier said than done but be careful with dr google. I drove myself demented earlier this year when my tummy started flaring. Everyone had their own magic remedies and foods to avoid. Too much information can be a dangerous thing. And when also prone to anxiety it’s overwhelming. My sick tummy made me anxious and my anxiety made my tummy worse. It’s vicious.

If you’re still feeling very unwell, temperature or fever then I really would contact a doctor if you can at all.

 

[Hello Kitty]

Not read the thread but are people saying they have had the capsule to investigate? I suffer so badly but had seizures at my colonoscopy appointment maybe from the prep which was not supposed to be given with people with seizures, Been too scared to have another. Help please as it's bad, soiling myself tbh

Also bad pain

Wow I didn't know this. I have Crohn's and Epilepsy. Is there an alternative to the prep?

Hope you're ok.

 

[Frenchie]

I have pan colitis (effects my whole colon) I wasn’t really ill beforehand then had a really bad flare up, was going to the GP each week for 6wks and being told I had IBS until I ended up in hospital severely ill.
At first I started going to the toilet more often, then urgently but laterally was I having frequent (as in teens) bloody stools and pain before and whilst going to the toilet. By the time I was in hospital I couldn’t eat or drink without either being sick or needing to rush to the toilet. I was asked regularly whilst in the hospital and just after I was diagnosed if I had any family members with bowel disease and it turns out my mum’s uncle suffered badly from crohn’s so they do seem think there is a genetic link with IBD . I’m sorry for your friend it’s really tough to get a diagnosis and having since spoken to others it sounds like I was lucky to have had such a bad flare up so early as it’s often misdiagnosed for a long time.

There’s no blood, is that a red flag or can you have it without any bleeding?
Thank you for your reply xx

 

[Hello Kitty]

Christ! When was this? A friend of mine gets them regularly cos she has crohns and she said they've changed the prep recently and it's not as bad now?

I have Crohn's too. I had one in March and it was different to the last one I had a few years ago. It was hideous, I mean the old prep wasn't great but I hated this one, it was a tropical flavour but by the evening sachet I was sick a few times and had to stop. Thankfully I was clear enough and my biopsies came back clear.
---

I've mentioned before the prep gave me seizures so the procedure didn't go ahead. I didn't know you could be sedated for it though, they never said that to me. I don't know if I'm brave enough to try and go for it again. They said I'd have to stay in hospital the night before to take the prep because of what happened last time, imagine that toilet wise! Still having a lot of problems soiling which is a nightmare.

I've always been sedated. I didn't want to be sedated for my last one but they said they recommend it.

 

[Shoequeen91]

How did people get the capsule? Was it offered or did you have to ask your consultant? Is it available on the NHS or private only (I’d pay if it’s private only)

 

[Omghon]

Long shot but does anyone have any tips / recommendations to help ease UC symptoms during a flare up? Mainly bloating, urgencies (), inflammation etc. I’m waiting on my referral letter to go back to the hospital but was hoping for some coping mechanisms in the meantime? I’m currently not taking any prescribed medication. Any advice appreciated x

 

[MickeyMouseClubhouse]

In medical terms that’s known as “incomplete evacuation”. It’s definitely worth mentioning to the GP.

Also, inflammation can make it feel like you didn't finish too.
---

Me! I hated SC and moved back to IV - I’ve heard very mixed reviews on whether it’s as efficient as IV

Hated it because you didn't like doing it, or because you dropped out of remission?

 

[Carapop]

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.

Oh I didn’t get an approved food list! Was told could have breakfast as normal and then only the moviprep and clear liquids after 12.30 the day before.

 

[peachesandcreamz]

Reaaaally struggling with bloating lately! I can eat the exact same thing on two different days and one day I'm fine, the next I look 9 months pregnant!

Anyone got any tips or tricks?

I tried peppermint capsules and they seemed to work for a while then stopped again....

 

[Hello Kitty]

Hey - has everyone had a confirmed diagnosis of IBD? I went to my GP over a month ago and they did some bloods and I’ve not heard anything back since. I suffer from really bad bloating when I eat, to the point I don’t really want to eat anymore, and stomach pains. I’m a size 6-8 and look a good 4/5 months pregnant after eating! I’ve cancelled most food groups out of my diet to try and pinpoint it but not having an answer from my GP is frustrating. I’ve bought some SenoCalm today and hoping they help relieve some symptoms.

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?

 

[lorballs]

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!

Did they test you for gallstones

 

[Laurst]

Are you talking about Kefir or modulen?

Kefir i have one in the morning

Yes kefir, thanks you

 

[Synthetic]

Long shot but does anyone have any tips / recommendations to help ease UC symptoms during a flare up? Mainly bloating, urgencies (), inflammation etc. I’m waiting on my referral letter to go back to the hospital but was hoping for some coping mechanisms in the meantime? I’m currently not taking any prescribed medication. Any advice appreciated x

I'd suggest peppermint tea which is kind to your tum, hot water bottle, hot baths, you must rest where possible xx and take some over tbe counter pain killers but not things like ibuprofen as it can make your tum worse. Keep your diet simple too, avoid things which have a lot of spice, any known trigger foods and things which are hard to digest such as raw veg xxx

 

[Blahblah93]

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've had about 20 endscopies over the years. Take all the sedation.

 

[iloveanimals]

Fybogel works for me, i take it at bedtime if im desperate and after 2 black coffees in the morning i am ok. I drink a lot of water and light exercise sometimes gets things going. I dont watch what i eat to be honest, because im a vegetarian so i expect i get a lot of fibre anyway. Im sorry nothing really works for you , the bloating can be very painful cant it ? The doctors do give mebeverine when its really bad, i find that quite good. Have you tried colpermin and peppermint tea ? And a hot water bottle on your stomach ? i expect you have probably done all this. I can imagine tights cutting into your stomach, poor you. x

 

[Blahblah93]

Has anybody been diagnosed with Lymphoma who also has Crohns?

 

[Motherofpugs]

Has anyone with Crohn’s/IBD had any issues with their lips? I’ve not flared for 12 years since surgery and over the past year I’ve had soo many issues with my lips that started when I was pregnant with my second. They start by getting itchy, then go red and inflamed. Sometimes they have loads of little bumps on and they become really swollen. Recently I’ve had two bad flare ups of it where my lips have even oozed yellow fluid 🫣 steroids bring it down but I can’t keep taking them when it just keeps coming back. Also have angular cheilitis at the minute on top of everything else. I’m not sure if it’s Crohn’s related or something else entirely.