IBS/IBD sufferers...

1
So this was a surprise.
I first went to my doctors about 2.5 years ago initially with awful symptoms. Went through the referral to gastro etc and he did a colonoscopy last year. He dismissed it as normal results and that was it. Get on and struggle. (I got the feeling he wasn’t interested anyway)

but last week I had a CT scan for something unrelated, and the ct report says I have diverticulitis in my sigmoid colon and I need referring to gastro.

How was this missed on the other tests? I’ve been suffering badly for years.
 
swimming said:
So this was a surprise.
I first went to my doctors about 2.5 years ago initially with awful symptoms. Went through the referral to gastro etc and he did a colonoscopy last year. He dismissed it as normal results and that was it. Get on and struggle. (I got the feeling he wasn’t interested anyway)

but last week I had a CT scan for something unrelated, and the ct report says I have diverticulitis in my sigmoid colon and I need referring to gastro.

How was this missed on the other tests? I’ve been suffering badly for years.
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Colonoscopy only goes so far and to be thorough they need to do a CT or MRI to assess the small bowel. That’s how my crohns was missed 7 years prior to my diagnosis.
 
EllaEm87 said:
Colonoscopy only goes so far and to be thorough they need to do a CT or MRI to assess the small bowel. That’s how my crohns was missed 7 years prior to my diagnosis.
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Wow I didn’t know this. That makes me even more angry now that the gastro doctor last year dismissed me after the colonoscopy. His words pretty much were “yep all good it’s just IBS”.

I have suffered so so badly since. Gaslighted about my weight, blaming my symptoms on my weight etc.

And then an unrelated CT scan finds something.
 
swimming said:
Wow I didn’t know this. That makes me even more angry now that the gastro doctor last year dismissed me after the colonoscopy. His words pretty much were “yep all good it’s just IBS”.

I have suffered so so badly since. Gaslighted about my weight, blaming my symptoms on my weight etc.

And then an unrelated CT scan finds something.
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You can also get a pill cam now too. If you have inflammation of the small bowel calprotectin can come back normal. I've seen many people told ibs for years then go into a full flare. Push for your small bowel to be checked.
 
Proof8 said:
You can also get a pill cam now too. If you have inflammation of the small bowel calprotectin can come back normal. I've seen many people told ibs for years then go into a full flare. Push for your small bowel to be checked.
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Thank you, I will do that.

yes all my tests came back normal! Stool and bloods etc. so I’ve just been dismissed. Suffering in silence, scared to leave the house etc.

I’ll phone the doctor again tomorrow
 
Proof8 said:
You can also get a pill cam now too. If you have inflammation of the small bowel calprotectin can come back normal. I've seen many people told ibs for years then go into a full flare. Push for your small bowel to be checked.
Click to expand...
Exactly what happened to me, wasn’t diagnosed until admitted with full flare, calprotection normal but CRP was 250, which is dangerously high. I had a stricture, which is a sign of long term inflammation that has caused scar tissue.
 
Jelly Bean said:
Has anyone here seen a nutritionist? And if so did it help?
For over a month I've been so strict about what I eat and it has helped massively. No flare ups. But it is very restrictive and a lot of the time I'm hungry. As quantity seems a trigger as well.
Just today I stupidly had a couple of Hovis wheat crackers and am in trouble again.
I've just sort of lost track of what I can and can't eat now and am consequently a bit scared of so many foods. It seems I'm muddling along just living on the same extremely small food groups. And I'm quite scared it could turn into something else if you see what I mean eating disorder.
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Quoting myself like a d*ck but this might help others. I felt terrible for about a week and tried all my usual things to feel better but nothing was really helping. I felt quite out of control and scared tbh. Stomach cramps and pain, hot then cold, diarrhoea, fatigue, nausea, extreme hunger but no appetite. And depression because of it.
Yesterday I suddenly felt much better. Anyway my OH was listening to the radio and apparently the latest covid symptoms are predominantly gastrointestinal with all the above symptoms and I think that's what I had. No point testing now and it would not have occurred to me earlier.
I wondered if you have stomach issues anyway it can hit harder? And as sufferers like us have it in flare ups anyway we might not realise it was covid - I didn't anyway.
Just for anyone having a flare up that they can't get on top of at all it might be worth considering.
 
Hi pals. I lurked about here last year when I had e.coli but didn’t initially know it! I’ve had issues with diarrhoea for years (which delayed my getting tested when I had e.coli to be honest) which I think is related to my anxiety, and I sort of refer to it as IBS if I have to disclose it to someone, but I’ve not been diagnosed or had any sort of test (except the stool sample for e.coli which I think tested for other parasites at the time but nothing more). Anyhoo. My diarrhoea issues have gotten worse. This has coincided with me taking an actual handful of supplements every morning and evening to try and get my PCOS under control. I do take a 3 in 1 magnesium which includes magnesium citrate. I wondered if that was the cause because I understand it’s apparently helpful if you’re constipated and I am very much not. However. I’ve been taking this supplement for a long time, but have had a daily single bout of diarrhoea in the mornings for a lot longer (actual years). So. I dunno. Anyway. Today I’ve been to the toilet 3 times. Once at 4am, once at whatever time I got properly (maybe about 6:30am) and once tonight after dinner. After my dinner I felt bloated and a bit funny. I’ve also noticed after I eat lunch sometimes my intestines are very noisy. I feel absolutely fine but my guts sound like they are not fine at all. Nothing about my diet has changed, just this boat load of supplements. I have PCOS and endometriosis which I had laser treatment for but now no longer have the hormonal coil in to treat. I’m reluctant to give up the supplements because I’m trying to get pregnant, but at the same time whilst I could handle one unpleasant trip to the toilet every morning in the comfort of my own home, multiple trips throughout the day is not ok.

Any thoughts from an IBS perspective? Don’t want to duck up my system with Imodium unless I really really have to. Maybe there is yet another supplement I could take that might add a bit of bulk to settle me out? Or do I need to admit defeat and start removing one supplement at a time till I figure out what’s upset my guts so much? I’ve been on this insane regime for about 3 months now, although I have added in one or two new ones along the way.
 
ThisIsMyDragName said:
Hi pals. I lurked about here last year when I had e.coli but didn’t initially know it! I’ve had issues with diarrhoea for years (which delayed my getting tested when I had e.coli to be honest) which I think is related to my anxiety, and I sort of refer to it as IBS if I have to disclose it to someone, but I’ve not been diagnosed or had any sort of test (except the stool sample for e.coli which I think tested for other parasites at the time but nothing more). Anyhoo. My diarrhoea issues have gotten worse. This has coincided with me taking an actual handful of supplements every morning and evening to try and get my PCOS under control. I do take a 3 in 1 magnesium which includes magnesium citrate. I wondered if that was the cause because I understand it’s apparently helpful if you’re constipated and I am very much not. However. I’ve been taking this supplement for a long time, but have had a daily single bout of diarrhoea in the mornings for a lot longer (actual years). So. I dunno. Anyway. Today I’ve been to the toilet 3 times. Once at 4am, once at whatever time I got properly (maybe about 6:30am) and once tonight after dinner. After my dinner I felt bloated and a bit funny. I’ve also noticed after I eat lunch sometimes my intestines are very noisy. I feel absolutely fine but my guts sound like they are not fine at all. Nothing about my diet has changed, just this boat load of supplements. I have PCOS and endometriosis which I had laser treatment for but now no longer have the hormonal coil in to treat. I’m reluctant to give up the supplements because I’m trying to get pregnant, but at the same time whilst I could handle one unpleasant trip to the toilet every morning in the comfort of my own home, multiple trips throughout the day is not ok.

Any thoughts from an IBS perspective? Don’t want to duck up my system with Imodium unless I really really have to. Maybe there is yet another supplement I could take that might add a bit of bulk to settle me out? Or do I need to admit defeat and start removing one supplement at a time till I figure out what’s upset my guts so much? I’ve been on this insane regime for about 3 months now, although I have added in one or two new ones along the way.
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I've quite recently started taking a probiotic tablet every morning and omg the difference it has made to my IBS painful diarrhoea. I had tried probiotic drinks but they just didn't work. I think the milk in them overrode any benefits.
Constant diarrhoea disrupts the gut lining causing food sensitivity - a vicious cycle - so the probiotic rebuilds a healthy and robust gut. If you had e coli that would have messed up your gut bacteria big time.
I found I started improving after a couple of days - and this was after a terrible flare of needing the loo at least 10 times a day.
I take Optibac from Holland and Barret but there are lots of choices. I still get the occasional bout but it is nothing like it was before and I can have a normal life now. I think it should fit in with your other supplements.
Honestly it's been life changing for me.
Good luck.

www.optibacprobiotics.com

Optibac Probiotics Every Day Capsules - UK's Most Recommended Brand

6 scientifically researched probiotic strains with FOS prebiotics. Supports digestive health. Perfect for every day use. 30 capsules. Most recommended UK brand
www.optibacprobiotics.com www.optibacprobiotics.com
 
I had something similar @ThisIsMyDragName. I had gastroenteritis, and was later diagnosed with Crohn's but in that period after the gastroenteritis cleared up I had the worst grumble tum after every meal. As @Jelly Bean said you'll need to help restore your good gut bacteria so a probiotic would be good. It would be worthwhile looking up which strains will help with your particular symptoms before purchasing. Make sure you eat prebiotics so they have something to eat, foods like whole grains, bananas, greens, onions and garlic. You can get probiotics from foods also, things like kefir, sauerkraut, kimchi and yogurt.

I personally take a 4 in 1 magnesium supplement that has citrate in it and I don't find it aggravates my tummy.
 
Don’t know if anyone still reads here but I’m back again to moan about my stomach.
I’ve quite literally had enough now. Absolutely sick and tired of it.

My stomach goes through these episodes (lasting hours sometimes) where it makes such loud noises like a washing machine. I was drinking water earlier and as the water was going down the noise was ridiculous.

There’s no pattern to me rushing to the loo either.

Some days I’ll be fine all day and then just as I get into bed at night, within minutes I’m getting up to use the toilet.

pissed off with the doctors. So many times ive had appointments about my bowels. Got told I had diverticulitis and was just given antibiotics for diarrhoea. Had stool samples back that were fine. But they have no yet referred me to the gastro team which I believe I need. I’ve been working with a private dietitian and she’s unable to find a cause for my unruly issues either.

I’m just so fed up and isolated. Some days I don’t leave the house which is bloody tough when I’ve got a 4 year old and I’m alone
 
swimming said:
Don’t know if anyone still reads here but I’m back again to moan about my stomach.
I’ve quite literally had enough now. Absolutely sick and tired of it.

My stomach goes through these episodes (lasting hours sometimes) where it makes such loud noises like a washing machine. I was drinking water earlier and as the water was going down the noise was ridiculous.

There’s no pattern to me rushing to the loo either.

Some days I’ll be fine all day and then just as I get into bed at night, within minutes I’m getting up to use the toilet.

pissed off with the doctors. So many times ive had appointments about my bowels. Got told I had diverticulitis and was just given antibiotics for diarrhoea. Had stool samples back that were fine. But they have no yet referred me to the gastro team which I believe I need. I’ve been working with a private dietitian and she’s unable to find a cause for my unruly issues either.

I’m just so fed up and isolated. Some days I don’t leave the house which is bloody tough when I’ve got a 4 year old and I’m alone
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I have a relative with diverticulitis and there is no pattern to their issues either. They were only told to avoid eating small seeds and popcorn, helpful.

I'm assuming if you're working with a dietitian, they've tried to figure out potential triggers and such. Typically any gurgling noises are caused by air in your gut, which makes sense if it's after a bout of diarrhoea. Have you noticed if there are certain foods that cause more gas than others? Ingesting air when you're eating and drinking won't help so avoid straws and carbonated drinks and chew your food thoroughly before swallowing. Perhaps eating little and often may help relieve it.
 
swimming said:
Don’t know if anyone still reads here but I’m back again to moan about my stomach.
I’ve quite literally had enough now. Absolutely sick and tired of it.

My stomach goes through these episodes (lasting hours sometimes) where it makes such loud noises like a washing machine. I was drinking water earlier and as the water was going down the noise was ridiculous.

There’s no pattern to me rushing to the loo either.

Some days I’ll be fine all day and then just as I get into bed at night, within minutes I’m getting up to use the toilet.

pissed off with the doctors. So many times ive had appointments about my bowels. Got told I had diverticulitis and was just given antibiotics for diarrhoea. Had stool samples back that were fine. But they have no yet referred me to the gastro team which I believe I need. I’ve been working with a private dietitian and she’s unable to find a cause for my unruly issues either.

I’m just so fed up and isolated. Some days I don’t leave the house which is bloody tough when I’ve got a 4 year old and I’m alone
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Are you able to switch GP surgeries at all?

Wasn't till I moved house and moved GP that I got an instant referral to Gastro.
 
swimming said:
Don’t know if anyone still reads here but I’m back again to moan about my stomach.
I’ve quite literally had enough now. Absolutely sick and tired of it.

My stomach goes through these episodes (lasting hours sometimes) where it makes such loud noises like a washing machine. I was drinking water earlier and as the water was going down the noise was ridiculous.

There’s no pattern to me rushing to the loo either.

Some days I’ll be fine all day and then just as I get into bed at night, within minutes I’m getting up to use the toilet.

pissed off with the doctors. So many times ive had appointments about my bowels. Got told I had diverticulitis and was just given antibiotics for diarrhoea. Had stool samples back that were fine. But they have no yet referred me to the gastro team which I believe I need. I’ve been working with a private dietitian and she’s unable to find a cause for my unruly issues either.

I’m just so fed up and isolated. Some days I don’t leave the house which is bloody tough when I’ve got a 4 year old and I’m alone
Click to expand...

I was left in the dark entirely with this when I was diagnosed with Diverticular Disease. I wasn’t even allowed antibiotics when flaring from my doctor as they said to rest the colon instead and only have water for up to 72hrs.

I’ve stopped a few things

1) no chewing gum
2) no drink from a straw (unless I can’t help it)
3) no tap water (I feel like this has helped me be less inflamed, only Brita filtered water or bottled water)
4) mug of warm water first thing in a morning

When I’ve flared (which touch wood hasn’t been for months) I only eat white bread toasted with jam, clean proteins (lean meat, mainly chicken) and fruits (strawberries).

Have you been tested for other things - high stomach acid? Or H Pylori?

I find putting good bacteria back in massively help so after my warm water, I drink 250ml of unflavoured kefir.

Hope you get answers soon. It’s really awful at times 💕
 
I think a unifying theme is getting good bacteria back into your gut.
I can't really cope with probiotic drinks or kefir (lactose/milk slight intolerance) so I take a tablet from Holland and Barrett.
It's made such a difference.
It's still not perfect but so much more manageable.
 
Jelly Bean said:
I think a unifying theme is getting good bacteria back into your gut.
I can't really cope with probiotic drinks or kefir (lactose/milk slight intolerance) so I take a tablet from Holland and Barrett.
It's made such a difference.
It's still not perfect but so much more manageable.
Click to expand...
Do you mind if I ask which tablet you get from Holland & Barrett? I feel absolutely overwhelmed with the probiotics out there and terrified to try any incase they make my very loose stomach worse. I’m on waiting list for a scan for Bile Acid Malabsorption, something I hadn’t even heard of until very recently.
 
Thanks everyone for your advice.

so personally, I’m not convinced it’s full on diverticulitis. That condition was picked up by accident when I had a CT scan for another issue.

Everywhere online tells me diverticulitis causes pain in the left hand side and even the doctor told me that. But I don’t have any pain.

I just sometimes feel quite sick in my stomach, get a very watery mouth, bad acid reflux (I take omeprozole for this - which I know is bad for the tummy).

I flit between constipation and diarrhoea. I also take a probiotic tablet from Holland and Barrett.

it’s definitely worse when I’m anxious. But then the upset tummy makes me more axioms because I have health anxiety. Honestly the whole thing is a joke.

when I do have diarrhoea, sometimes it’s like pure acid that comes out. Sorry tmi. It’s bright yellow and stings like hell. I’ve told the doctor this so many times but I’m just getting no where apart from being gaslighted because I’m overweight and have a “high bmi”

im sitting here now feeling sick and have a bubbly tummy.
 
Shoegal17 said:
Do you mind if I ask which tablet you get from Holland & Barrett? I feel absolutely overwhelmed with the probiotics out there and terrified to try any incase they make my very loose stomach worse. I’m on waiting list for a scan for Bile Acid Malabsorption, something I hadn’t even heard of until very recently.
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Omg I have BAM too.
Which prompted me to start the tablets. It was getting so out of hand and depressing. And restrictive.
I take Optibac from Holland and Barret. But it really was a case of standing there and going 'eeny meeny miny mo' tbh. It is overwhelming.
I don't think they'll make things worse for you. I was going to the loo about 16 times a day. I was worried too about making it worse (if possible) but I had nothing to lose tbh. The probiotic honestly made things better within a couple of days. I was so sceptical and was amazed so I don't think it can be all in my mind. I'm still mega careful with my diet and my particular triggers (pasta, bread, pastry amongst others) and still have blips but nothing like it was.

This is the one I usually take - often on special offer. About £10. But really they are all fairly similar.


www.optibacprobiotics.com

Optibac Probiotics Every Day Capsules - UK's Most Recommended Brand

6 scientifically researched probiotic strains with FOS prebiotics. Supports digestive health. Perfect for every day use. 30 capsules. Most recommended UK brand
www.optibacprobiotics.com www.optibacprobiotics.com
 
Jelly Bean said:
Omg I have BAM too.
Which prompted me to start the tablets. It was getting so out of hand and depressing. And restrictive.
I take Optibac from Holland and Barret. But it really was a case of standing there and going 'eeny meeny miny mo' tbh. It is overwhelming.
I don't think they'll make things worse for you. I was going to the loo about 16 times a day. I was worried too about making it worse (if possible) but I had nothing to lose tbh. The probiotic honestly made things better within a couple of days. I was so sceptical and was amazed so I don't think it can be all in my mind. I'm still mega careful with my diet and my particular triggers (pasta, bread, pastry amongst others) and still have blips but nothing like it was.

This is the one I usually take - often on special offer. About £10. But really they are all fairly similar.


www.optibacprobiotics.com

Optibac Probiotics Every Day Capsules - UK's Most Recommended Brand

6 scientifically researched probiotic strains with FOS prebiotics. Supports digestive health. Perfect for every day use. 30 capsules. Most recommended UK brand
www.optibacprobiotics.com www.optibacprobiotics.com
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Thank you so much ☺️ Will give them a try. I was having a cry earlier as feel very lonely wondering what’s wrong. No one really understands that isn’t in the same boat so find it hard to find support as people are nice but think it’s just an case of finding a toilet in time but it’s all the pain and exhaustion I find difficult to manage especially as I’m not really sure what I have yet. I hope you continue to find the probiotics helpful and thank you for replying ☺️
 
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