Crohns / ulcerative colitis sufferers

Kemik · 3 Jul 2018 at 10:49

My story time.

Few years back started with lower right abdo pain, generally when I drank beer (even one and I don't particularly like beer). So stopped drinking beer. Then I'd get hour long episodes. Saw the dr who done blood tests and said everything was fine, come back if it happens again. Had another episode where the pain was so bad I vomited while sat on the toilet. These ones lasted half a day. Almost called 999. Saw a specialist. More blood work, stool sample, and have my colonoscopy tomorrow under sedation. First two tests come back clear so far. No sign of inflammation. Guessing the colonoscopy is to confirm that it isn't Crohns...

Would be good to get a diagnosis but I kind of don't want it to be something chronic which I have to spend months figuring out what the trigger is. I've cut out onion and garlic but the episodes are so random it is impossible to work out what it is... Insurance also stops covering as soon as they say the word chronic. Nor do I want to be on meds for ages. In a perfect world, I'd do FODMAP for a month, find the specific food, stop eating that and be grand. Obviously it isn't a perfect world.

mattyg · 3 Jul 2018 at 15:10

First thing if you think its diet relate is keep a diary. Both food and stool..

Could be IBS. My Mrs has IBS issues every so often (4 months???) (can't remember but can almost set your clock by it)

I hope its diet related for you...Then you can just avoid whatever it is....There are worse things to have than UC/Crohns but I still wouldn't wish it on anybody bar my worst enemy ...lol

wingman · 3 Jul 2018 at 16:15

Kemik said:
My story time.

Few years back started with lower right abdo pain, generally when I drank beer (even one and I don't particularly like beer). So stopped drinking beer. Then I'd get hour long episodes. Saw the dr who done blood tests and said everything was fine, come back if it happens again. Had another episode where the pain was so bad I vomited while sat on the toilet. These ones lasted half a day. Almost called 999. Saw a specialist. More blood work, stool sample, and have my colonoscopy tomorrow under sedation. First two tests come back clear so far. No sign of inflammation. Guessing the colonoscopy is to confirm that it isn't Crohns...

Would be good to get a diagnosis but I kind of don't want it to be something chronic which I have to spend months figuring out what the trigger is. I've cut out onion and garlic but the episodes are so random it is impossible to work out what it is... Insurance also stops covering as soon as they say the word chronic. Nor do I want to be on meds for ages. In a perfect world, I'd do FODMAP for a month, find the specific food, stop eating that and be grand. Obviously it isn't a perfect world.

There's gluten in beer...

Perhaps start there. Worked for me (YMMV, naturally).

Kemik · 3 Jul 2018 at 17:14

wingman said:
There's gluten in beer...

Perhaps start there. Worked for me (YMMV, naturally).

Yeah, started on that route and porridge goes slow things down a little too, but I would have thought high gluten foods would have the same impact and trigger episodes, but apparently not seen as I can eat porridge all winter. I'm not ruling it out though seen as the episodes are now more frequent. Beer it is just more instant.

dowie · 3 Jul 2018 at 17:43

Kemik said:
Yeah, started on that route and porridge goes slow things down a little too, but I would have thought high gluten foods would have the same impact and trigger episodes, but apparently not seen as I can eat porridge all winter. I'm not ruling it out though seen as the episodes are now more frequent. Beer it is just more instant.

Celiac disease can be tested for via a blood test btw.. you might well have had one and that could have been ruled out already

it could be worth seeing a dietitian with an interest in IBD - if you've got insurance and the disease is still acute then get your insurance company to cover it, your gastro consultant should be able to refer you - for example things like fibre or alcohol might be the answer there rather than gluten. Seeing a dietitian for a consultation, if you can get it covered, is a no brainer.

wingman · 3 Jul 2018 at 18:02

Kemik said:
Yeah, started on that route and porridge goes slow things down a little too, but I would have thought high gluten foods would have the same impact and trigger episodes, but apparently not seen as I can eat porridge all winter. I'm not ruling it out though seen as the episodes are now more frequent. Beer it is just more instant.

Porridge doesn't technically contain gluten, it just comes into contact with it often.

Loves Love Island said:
Celiac disease can be tested for via a blood test btw.. you might well have had one and that could have been ruled out already

I've had hundreds of blood tests and none have ever suggested I have a sensitivity towards gluten, yet removing it from my diet eradicated my symptoms entirely.

Similarly, it's very difficult to diagnose gluten sensitivity and celiac. For the costs involved, i.e. nothing, it's worth trying it out for a few weeks.

dowie · 3 Jul 2018 at 18:19

wingman said:
I've had hundreds of blood tests and none have ever suggested I have a sensitivity towards gluten, yet removing it from my diet eradicated my symptoms entirely.

Similarly, it's very difficult to diagnose gluten sensitivity and celiac. For the costs involved, i.e. nothing, it's worth trying it out for a few weeks.

AFAIK celiac can be diagnosed with a blood test, I'm not sure what relevance you having had "hundreds" of blood tests is - there is a specific blood test for celiac and you've either had that specific test among your blood tests or you haven't. You might well be sensitive to gluten not as a result of celiac too.

The point I'm making is that there are lots of things that can irritate the bowls - gluten intolerance is currently quite trendy and perhaps the other poster is intolerant to it but it is probably best to go see a dietitian first for proper advice on eliminating foods etc..

Holdon Tight · 3 Jul 2018 at 23:01

Thekwango said:
sorry to hear that.....2½ years is a long time to be in such pain and discomfort. glad the meds are getting on top of it though.....long may it continue.

personally i'm currently tapering down off of steroids ...sooner I'm off them the better, I've blew up like a goddamn beach ball!

Thanks. I was on pred for along while, I ballooned too. Not nice.
Good luck with it all

wingman · 3 Jul 2018 at 23:16

Loves Love Island said:
AFAIK celiac can be diagnosed with a blood test, I'm not sure what relevance you having had "hundreds" of blood tests is - there is a specific blood test for celiac and you've either had that specific test among your blood tests or you haven't. You might well be sensitive to gluten not as a result of celiac too.

The point I'm making is that there are lots of things that can irritate the bowls - gluten intolerance is currently quite trendy and perhaps the other poster is intolerant to it but it is probably best to go see a dietitian first for proper advice on eliminating foods etc..

Rubbish. Celiac disease is incredibly difficult to diagnose correctly.

As I said before, just try a gluten free diet. Sod the trendy part of it, I don't get why you'd discourage a harmless technique in the first instance.

dowie · 3 Jul 2018 at 23:26

wingman said:
Rubbish. Celiac disease is incredibly difficult to diagnose correctly.

As I said before, just try a gluten free diet. Sod the trendy part of it, I don't get why you'd discourage a harmless technique in the first instance.

because limiting your diet isn't necessarily harmless and you should probably do so in consultation with a consultant or dietitian - also if a particular disease that can be screened for is suspected then it would be better to find out whether you have got that or not so mentioning a possible issue with some food or drink containing gluten to the consultant at the next appointment would be worthwhile - better than just going for some DIY approach and excluding a bunch of food without advice from a medical professional

wingman · 4 Jul 2018 at 08:35

Loves Love Island said:
because limiting your diet isn't necessarily harmless and you should probably do so in consultation with a consultant or dietitian - also if a particular disease that can be screened for is suspected then it would be better to find out whether you have got that or not so mentioning a possible issue with some food or drink containing gluten to the consultant at the next appointment would be worthwhile - better than just going for some DIY approach and excluding a bunch of food without advice from a medical professional

The guy said that the pain was so bad he was vomiting, all I'm suggesting is trialing something that might help.

Removing gluten from your diet isn't as radical or limiting as you might think. There's GF bread, GF pasta, GF beer, GF cereal etc. You wouldn't necessarily have to change your diet, your core protein/fat/carb mix ratio doesn't have to change.

But hey, I'm just trying to give a possible solution to the guy in the meantime, I'm not advocating not seeing a dietician if that's what he wants.

dowie · 4 Jul 2018 at 11:23

wingman said:
The guy said that the pain was so bad he was vomiting, all I'm suggesting is trialing something that might help.

Removing gluten from your diet isn't as radical or limiting as you might think. There's GF bread, GF pasta, GF beer, GF cereal etc. You wouldn't necessarily have to change your diet, your core protein/fat/carb mix ratio doesn't have to change.

But hey, I'm just trying to give a possible solution to the guy in the meantime, I'm not advocating not seeing a dietician if that's what he wants.

Well then what is the issue? I'm not advocating not trying to remove different things for his diet. I'm pointing out that there are more things than just gluten that can irritate things and that it would be best to do this by consulting a dietitian (and talking to his consultant).

wingman · 4 Jul 2018 at 11:42

Loves Love Island said:
Well then what is the issue? I'm not advocating not trying to remove different things for his diet. I'm pointing out that there are more things than just gluten that can irritate things and that it would be best to do this by consulting a dietitian (and talking to his consultant).

Who suggested there was an issue? This is simply a conversation. I was responding to your observations, of which you made three remarks, one is that celiac can be diagnosed easily via blood testing (it can't), two is that my blood tests are irrelevant (indeed, I already stated that this is what worked for me, and that his mileage may vary), and three being that the diet could potentially be harmful (when I provided a solution to that potential pitfall of thinking).

dowie · 4 Jul 2018 at 11:50

wingman said:
Who suggested there was an issue? This is simply a conversation. I was responding to your observations, of which you made three remarks, one is that celiac can be diagnosed easily via blood testing (it can't), two is that my blood tests are irrelevant (indeed, I already stated that this is what worked for me, and that his mileage may vary), and three being that the diet could potentially be harmful (when I provided a solution to that potential pitfall of thinking).

I don't think you have necessarily provided a solution there, you've just suggested that one particular thing could be avoided when it might not even be that. Btw the blood test requires that someone be eating foods containing gluten at the time it is carried out.

The best solution is to speak to a dietitian or your consultant first.

Kemik · 4 Jul 2018 at 16:47

Thanks to both of you for the advice. Will let you know what the specialist says the other side of the sedation.

P.s. Moviprep isn't fun. I'd rather suck toes than drink that awful stuff. Alcohol has the same affect the following morning, should have just drank that instead

Thekwango · 4 Jul 2018 at 17:00

Kemik said:
Moviprep isn't fun

it's a ****load (no pun intended) better than having an enema!! bung some lemon barley in it to help with the flavour. sadly lemon barley doesn't help on the way out!

dl8860 · 4 Jul 2018 at 18:29

Thekwango said:
it's a ****load (no pun intended) better than having an enema!! bung some lemon barley in it to help with the flavour. sadly lemon barley doesn't help on the way out!

Ah I knew I read a good tip on here for making moviprep better but couldn't remember what it was, I think that was it. I'll try and remember for the inevitable next time... I don't actually mind the 'on the way out', probably because of a lack of taste buds down there lol.

Is the enema that bad? What is it like? Does that only work for flexi sigs or does it flush the whole large intestine!?

Thekwango · 4 Jul 2018 at 20:54

dl8860 said:
Is the enema that bad? What is it like? Does that only work for flexi sigs or does it flush the whole large intestine!?

awful mate....especially when you're not in good nick down below to begin with......holding the damn thing in for the recommended 10 mins is utter hell.....at least for me it was. not sure if it's an option for the whole large intestine, I doubt it to be honest but could be wrong. give me movi/kleenprep any day (not literally!) of the week

Kemik · 5 Jul 2018 at 08:07

Colonoscopy was a lot easier than expected. A few painful bits but pretty smooth. Results were all fine, so consultant is diagnosing as IBS. Will discuss options/next steps much as dietitian at next meeting. She took two biopsies too so get the results for those.

I always wonder if any of these tests would ever come back differently if they were taken mid episode... There has to be something triggering it as I didn't have them prior to four years ago. Makes you think if it is down to a virus or something you might have picked up. I'm sure scientists will figure it out at some point in the next decade.

dl8860 · 5 Jul 2018 at 09:07

Thekwango said:
awful mate....especially when you're not in good nick down below to begin with......holding the damn thing in for the recommended 10 mins is utter hell.....at least for me it was. not sure if it's an option for the whole large intestine, I doubt it to be honest but could be wrong. give me movi/kleenprep any day (not literally!) of the week

Fair play. Is it just like an intense jet of liquid? I guess some trusts just decide which method they prefer and you don't have much choice?

Kemik said:
Colonoscopy was a lot easier than expected. A few painful bits but pretty smooth. Results were all fine, so consultant is diagnosing as IBS. Will discuss options/next steps much as dietitian at next meeting. She took two biopsies too so get the results for those.

I always wonder if any of these tests would ever come back differently if they were taken mid episode... There has to be something triggering it as I didn't have them prior to four years ago. Makes you think if it is down to a virus or something you might have picked up. I'm sure scientists will figure it out at some point in the next decade.

Good to hear it went well. Visuals on mine on Tuesday were fine, despite me still having some symptoms. That's the last 3 colonoscopies now they've barely seen any signs of issues. Though I have been in remission for the majority of that time. You're certainly right that it's one big mystery. I still wonder if I just had some awful stomach bug (though I did have blood in stool and terrible diarrhea for like 6 months) to start with and it's just something lingering still. Who knows.