Crohn's disease

[Debinaboat]

Does anyone here suffer from Crohn's disease ,without weight loss?

It covers crohns, ulcerative colitis mainly but there are a few other inflammatory bowel diseases.

When my Crohn's was at it's 'peak' pre colostomy I was going up to 3o times a day and would have little or no warning when I needed to go. I would sweat, have gripping stomach pain (I still have that unfortunately) and I would start to go. This led to many many horrible experiences..... And in hindsight some funny ones.... And I don't regret having my bag at all!

Wannabe
That does sound extreme , I wonder if there can be ' mild' Crohn's ?
Yours sounds a lot worse than anything I am suffering ,whilst I think it's pretty bad , it's nowhere near what you have described ,
I hope things are a lot calmer for you now ?

It wasn't like that all the time and isn't like that now. Remember something like 80% of people with Crohns never have surgery. When I saw the 'head honcho' of crohns at St Thomas' he said there are varying types of Crohn's disease- so I have surgical crohns. In fact the first thing he did was take me off all the meds I had been prescribed and said it was the equivalent of chewing cardboard. Only surgical intervention would help.
I would push for help as my was discovered by accident really whilst having an op for suspected appendicitis- was nothing of the sort and my bowel was ulcerated.
It's a complicated and hard to diagnose disease and like others have said there are lots of presentations. Message me if I can help...

Just ask your GP for a fecal calprotectin stool test. Simple, straightforward test and pretty efficient at finding if there is inflammation in the bowel. Collect stool without mucous as mucous in sample throws off the reading.

I have Crohn's (diagnosed in 2003). I didn't have any noticeable weight loss before being diagnosed. I would suggest that when getting referred make sure you see a gastroenterologist who specialises in IBD rather than someone who doesn't as it's a particularly tricky disease.

Thanks everyone .
I am at the nurse today for more blood tests and the gp has agreed that it would be wise to do a full blood check ,hope fully that will rule out ind,or give some indication as to whether more tests are needed . One more question ?
Does anyone know what their b12 levels are ?

You should get that stool test, it's been NICE guidelines since Oct 2013 but some GPs seem slow on the uptake. You can have IBD without raised blood inflammatory markers like CRP and ESR but it is rare to have bowel inflammation with normal calprotectin.

Thanks change ,
I am going to ask for that test .but as the bloods are already done now I'll wait and see what they show up first .If they show up nothing ,I will be prepared for the next step .
its great to have all this advice ,I wouldn't have had a clue what to ask for..
Can I ask if the stool test will only show up a problem if I have recently had a 'flare up' ? Or does it test for something that is permanently present ,even when I could be feeling quite well ?

Funny thing is ,I went to the gp about a sore foot !

All of the symptoms you describe, including the joint pain (migrating arthralgia) can be attributed to Crohns, but you need consultant care and investigations for a firm diagnosis.

I have fistulising Crohns (I think of my bowel as just being friendly and liking to hook up with neighbouring bits of body ) but this has resulted in surgery a few times, including an ileostomy which I had reversed recently.

There are quite a few of us on here with Crohns so feel free to keep asking Qs either via the Health section or via pm. Between us we'll have done it, seen it, experienced it or know about whatever it is you need to know - Crohnies tend to become experts in their condition!

Good luck with the test results

Oh, and to answer one of your Qs, my Crohns activity markers and how I feel very often don't match. I can feel great but bloods say 'flare up' or vice versa.

Thank you gobbin ,and wannabe
I will take up your offers to pm you's,
I will wait though to see what the next few weeks bring ,I am also under the care of a neurosurgeon ,it seems like the next few weeks will be filled with gp and hospital appts,
It's knowing what part of my body to prioritise :-)
I'll just have to take one thing at a time .
Thanks again ,

I have had exactly the same symptoms as you for 2 years, word for word! Cut a long story short I had a colonoscopy, biopsies etc and it's an unspecified colitis. They have given me mezavant for 8 weeks and after the 8 weeks I come off it and if the symptoms come back it is likely to be a long term colitis so I stay medicated, if it doesn't come back it could have been a random
Infection that caused the inflammation. I was told to completely cut out sugar as it exacerbates symptoms, including most fruits and fruit juice and it has made a huge difference to me!

Rosduk
That is very interesting ,I am a bit of a sugar addict ,and iv also been told to stop drinking alcohol to see if my Vit b 12 levels improve .
But as a substitution for wine ,I've been drinking fresh fruit juices ( a lot) because I don't like fizzy juice .
I think I am going to have to rethink that too then.
I will try anything if it might help .
Thank you .