IBS/IBD sufferers...

1
MickeyMouseClubhouse said:
Had a routine MRI earlier this year. Had a letter last week telling me I have a Fibrotic Stricture near Terminal Ilium, and if I get pain after eating, I should consider a low residue diet. Anyone had imminent issues after having a similar MRI result?

On the plus side, the SC Infliximab is working really well, 3 jabs in and no degradation of how it works for me
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I’ve had a TI stricture and infliximab actually healed it.
 
lorballs said:
Has anyone had a positive fit test as I am freaking out
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I have UC and always have positive FIT test when flaring. It shows blood in poo. Do you have IBD or you showing symptoms? Did they do a calprotectin test too? I know it's easy to say but try not to stress too much there are many reasons why it could be positive.
 
Proof8 said:
I have UC and always have positive FIT test when flaring. It shows blood in poo. Do you have IBD or you showing symptoms? Did they do a calprotectin test too? I know it's easy to say but try not to stress too much there are many reasons why it could be positive.
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I don’t have an ibd diagnosis as yet, I’m waiting on a gastro appointment have been for 3 years I do have psoriatic arthritis and crohns and colitis run in that family. I have been having on and off bad sulphur burps, wind constipation but also a felling of not having completed when going to the loo
 
Sounds likely to be ibd. Ask to be put on pathway if you have a positive fit test.
Keep pushing I know it's tiring having to self advocate all the time. If the pain or bleeding get too bad go to a and e. Especially, if you become too constipated and cannot pass wind.
I had to go to a and e after collapsing in pain and I'd lost so much blood I was anaemic. Done a scope and had total uc of the large bowel. The GP kept saying it was piles. My calprotectin was over 8000. I wish I'd gone sooner.
 
Proof8 said:
I had to go to a and e after collapsing in pain and I'd lost so much blood I was anaemic. Done a scope and had total uc of the large bowel. The GP kept saying it was piles. My calprotectin was over 8000. I wish I'd gone sooner.
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It's all about getting away from thr GP, they are clueless!

Went to mine during a flare for some pain relief and steriods, and got a lecture on addiction to pain meds! :oops:
 
I think I’m having a Diverticular flare up as my upper left abdomen is sore again (probably acid too which was suspected when I originally got diagnosed). It feels like so long ago since I had one so I’m racking my brains as to what has caused it. The only real change I can think of is I could just be flaring with tomato again, or it’s pineapple. So odd cause I’m usually fine with it. The worst thing is I always get zero advice from my doctor and I’ll just be told to go nil by mouth baring water for up to 72hrs. Absolutely no good to anyone.
 
Shoequeen91 said:
I think I’m having a Diverticular flare up as my upper left abdomen is sore again (probably acid too which was suspected when I originally got diagnosed). It feels like so long ago since I had one so I’m racking my brains as to what has caused it. The only real change I can think of is I could just be flaring with tomato again, or it’s pineapple. So odd cause I’m usually fine with it. The worst thing is I always get zero advice from my doctor and I’ll just be told to go nil by mouth baring water for up to 72hrs. Absolutely no good to anyone.
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MotherDragName has diverticular disease. She rarely if ever flares but she got a top tip from someone to drink diet ginger ale if she had a flare. She was rather specifically told to use the Tesco one but I don’t know how much of a deal breaker that part is. I have no idea how helpful or unhelpful this is but I figured I would share and you have no obligation to try it!
 
Has anyone been prescribed upadacitinib?
Infixamab isn't working. The vedo failed. Upa or storma is my choice.
The side effects are extensive.
On another note I'm so fed up of people telling me what to eat and saying it's my fault. Stupid netflix program.
 
Proof8 said:
Has anyone been prescribed upadacitinib?
Infixamab isn't working. The vedo failed. Upa or storma is my choice.
The side effects are extensive.
On another note I'm so fed up of people telling me what to eat and saying it's my fault. Stupid netflix program.
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I've not, but it sounds like it's a last resort kinda medication. I hope you get well soon!

I'm glad no one around has watched the Netflix Doc, I've not, but it seems like it was more a healthy eating doc than something for any of us with a disease!
 
Hey guys, didn’t realise this chat was here. I was diagnosed with IBS 10 years ago, but over the last few months I can’t eat a thing without getting horrific diarrhea 😞 (sorry) I even couldn’t control messing myself like a newborn. Has anyone’s gotten this bad over time? Or could it be something different? I’ve a second opinion GP appointment coming up because my other one got bloods done and it’s showing over the panic limits for GGT (liver I think) and typical - she said it’s fine, while I’m over here struggling and suffering with the symptoms. Is this normal for bowel problems over time? Thought someone on here might have an idea or dealt with this, while I wait for my GP appointment.
 
Sleep_deprived said:
Hey guys, didn’t realise this chat was here. I was diagnosed with IBS 10 years ago, but over the last few months I can’t eat a thing without getting horrific diarrhea 😞 (sorry) I even couldn’t control messing myself like a newborn. Has anyone’s gotten this bad over time? Or could it be something different? I’ve a second opinion GP appointment coming up because my other one got bloods done and it’s showing over the panic limits for GGT (liver I think) and typical - she said it’s fine, while I’m over here struggling and suffering with the symptoms. Is this normal for bowel problems over time? Thought someone on here might have an idea or dealt with this, while I wait for my GP appointment.
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If you're not showing inflamation then get them to test for Bile Malabsorbtion, really similar symptoms to IBDs and IBS
 
Countrybumpkingirl said:
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.
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How did you know it was triggered by hormones please?

I have the worst spasms, need to give Mebeverine a go again but I don’t really have much pain just annoying spasms.
 
dreamteam1 said:
How did you know it was triggered by hormones please?

I have the worst spasms, need to give Mebeverine a go again but I don’t really have much pain just annoying spasms.
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Mebeverine was a god send for me, I really noticed the difference when I ran out. I don't take it at the moment but might need to start again.

Since getting pregnant and having a baby my IBS was a lot better (it was non-existent during pregnancy - amazing - but not worth being constantly pregnant for!) but is starting to come back again. This last week in particularly has been really bad but I have eaten really poorly too, and had a few glasses of wine (I don't normally drink but have been celebrating with different groups of friends).
 
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.
 
Shimmering said:
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.
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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.
 
Anyone else find that lettuce (fresh, not bagged) really fucks their stomach up?

Now the summers finally arrived I've been eating a lot more fresh salads - largely lettuce (little gem/iceberg), spinach, then your usual veggies like tomatoes/cucumber etc. but my god, the effect it's having on my gut is ridiculous. Twice now I've had a 'code brown' situation outside my house and the only thing I can think is that it's the salad.
 
WeepingCassandra said:
Anyone else find that lettuce (fresh, not bagged) really fucks their stomach up?

Now the summers finally arrived I've been eating a lot more fresh salads - largely lettuce (little gem/iceberg), spinach, then your usual veggies like tomatoes/cucumber etc. but my god, the effect it's having on my gut is ridiculous. Twice now I've had a 'code brown' situation outside my house and the only thing I can think is that it's the salad.
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Anything green really, but the biggest culprit with me is cabbage. I usually have it mixed with mash, it ruins me for days!
 
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