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Anyone with Chrohns or IBD

(11 Posts)
Raindropsonroses27 Sun 12-May-19 15:28:01

Just wondering if there are any sufferers of the above about and if you could tell me a bit about the symptoms?

I have had on-off bowel issues for years that come and go. I can have months of relative calm but then experience bouts of diarrhoea from nowhere with no obvious triggers. The sporadic nature and severity of it has played havoc with my self confidence and I'm now anxious about long car journeys or being in situations where the loo isn't easily accessible. Have seen doctors who immediately want to put it down to ibs and say the serious conditions would have more constant symptoms. I did have a colonoscopy for something unrelated about ten years ago. Nothing showed up then but it was a long time ago.

The reason my mind has turned to chrohns is that over the past week or so I'm finding myself having to dash to the loo within minutes of eating a meal. Not every single meal but enough for it to be noticeable and worrying. Having consulted google (I know I know bad idea) it says this is one of the key symptoms. My maternal grandmother also suffers with an IBD disorder (not chrohns).

So if it's something you have experience with do these sound like typical symptoms? Would the bad belly be more frequent? And would there be pain as I don't really experience that? Not expecting anyone to diagnose me but input and experience would be helpful.

OP’s posts: |
Raindropsonroses27 Sun 12-May-19 17:52:55

Anyone?

OP’s posts: |
ifIwerenotanandroid Sun 12-May-19 18:05:35

Hi. Sorry to hear of your problems. I was diagnosed with Crohn's about 10 years ago, following a colonoscopy.

If I get a flare-up, I start going to the loo more times a day & yes, I start going after eating anything. But my Crohn's is usually held in check by just 2 tablets a day, which is great.

Another symptom I get is extreme loss of energy. It feels different to normal tiredness, or fatigue after activity. It's more the absence of energy.

I can't tell you if you've got Crohn's. I think it would be a good idea to check out the gastro problems you have. But for me, it took a long time & much 'wait & see' or 'take this & see how you get on' before I finally had a colonoscopy & got the answer. Good luck.

lennonj Sun 12-May-19 19:03:08

I have mild crohns and have symptoms similar to yours but also had bleeding. I got referred and had lots of tests before eventually something showed up. I think this was partly because i didn't have symptoms all of the time so by the time i had got referred for the test the symptoms had gone! I would look on the Crohn s and colitis website and see what you think. Keep going back to gp if you're not happy. Best way to test for inflammation rather than i t being ibs is by a stool test for faecal calprotectin.

Raindropsonroses27 Sun 12-May-19 19:33:50

Thank you both for replying. I have been to the doctors before and just never seem to get anywhere. It's always 'keep a food diary' and see if this and that works. But because symptoms come and go it's hard to keep up with it.

I'm going abroad in a few weeks and really don't want to be feeling like this then. I have had two bad attacks over the weekend after eating where I've urgently needed the loo - once while out of the house and the anxiety that it creates makes the need to go worse as well. I'm also panicking by looking online and coming up with other things like bowel cancer sad

I need to go back to docs but I feel like getting any kind of diagnosis won't be easy

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Onatreebyariver Mon 13-May-19 06:59:24

I have colitis and so did my grandfather. Due to your family history they ought to take you more seriously.

I get no pain, never have. But the urgency sends my anxiety thru the roof. Like you, I’m scared to go on car journeys or places with no loo. I spend hours on google street view looking at the route to see where a loo would be so I know before I set off.

I think you should really push for a colonoscopy. in the end I had to go privately for one because the NHS gp kept saying it was ibs. Cost me about £2k I think and when I had it my Bowel was in such a bad way I almost lost it. I’m still so so angry at the gp for repeatedly brushing me off.

Raindropsonroses27 Mon 13-May-19 07:15:34

@Onatreebyariver sorry to hear that. I really feel like bowel issues are so generalised and hard to diagnose that they just want to brush things off and hope that it rectifies itself. I do feel a bit better today this morning and managed to keep my Sunday roast in yesterday but this weekend has really worried me with my holiday approaching. Queues, travelling, transfers and unfamiliar places are not what you need when urgency strikes :/

I have medicated with immodium before (in fact I tend to take at least one every weekend as my symptoms sometimes appear worse when out of my usual weekday work/school routine) but I ran out this weekend so I'm not sure if my body has somehow psychologically or physically picked up on this and caused this attack. Either way it's not great :/

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NoYo Mon 13-May-19 07:28:32

Watching thread.
Similar symptoms to you op.

I had calprotectin test about 4 years ago which was raised (think it was about 120?)so consultant sent me for urgent colonoscopy, all normal thankfully . Tested negative for coeliac, and had a load of blood tests which were 'essentially normal.'

Consultant said it was probably ibs and discharged me.

I get terrible pain (seems to be worse on RH side) diarrhoea, wind, very dry itchy eyes, and feel like I'm burning up, and lack of energy.

It will last for a few days or weeks then I'll be OK for a while before it starts again.

Hope you get to the bottom 😁 of it op.

Raindropsonroses27 Mon 13-May-19 07:38:14

@NoYo another thing I've noticed is lack of energy especially in my legs. I can get up first thing in a morning and feel like I've already walked 5 mile. Really odd.

The last time I had a colonoscopy it was bloody awful, I really don't want to go through that again but as you say it would be good to get to the 'bottom' of things 🙈

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Onatreebyariver Mon 13-May-19 10:04:02

@Raindropsonroses27 yes to immodium, make sure you take lots on holiday. Often just knowing you've got them will stop an attack happening (as it's often induced by anxiety)

I also was given a tip by my grandfather which was breathing. I've used it so often, in exam halls, bus journeys etc etc. Just breathe in through your nose counting ONE... TWO... and then exhale through your mouth counting ONE...TWO...THREE. And keep repeating. It makes you focus on something else, calms anxiety, takes your mind off your intestines. It's a simple trick but has saved me so many times.

Try to enjoy your holiday.

BusterGonad Mon 13-May-19 12:57:08

I have crohns but mine is more blockage based then going too much, when I get a flare I'm literally bend over double with spasms because I can't go to the toilet.
The fatigue is terrible, and yes my legs do get really really tired and when I'm flaring they are so weak! Strange!
I've never had visible blood in my stools but maybe I have and haven't noticed as it's been dark (tmi!)
You MUST push for further investigations and stress about the family history, if your gp won't do anything then change gp!

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