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Crohn's Disease Forum » Your Story » Undiagnosed and fed up!


02-26-2014, 10:54 AM   #1
Anna82
 
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Undiagnosed and fed up!

I hope no one minds me posting here, I've been really ill for coming up to 5 months and my gp keeps diagnosing me with IBS, I hoped maybe if I gave some of my symptoms someone might be able to confirm my suspicions it *could* be crohn's? I'm getting really down about being undiagnosed and in a lot of pain.

I'm 32, about October last year I started getting painful stomach cramps and lethargy, I had a load of tests and they were inconclusive (bloods) US scan has showed no abnormalities I'm currently in a 2 month wait for a CT. My inflammation markers were normal. I have chronic stomach pain upon waking every morning, and a bit of back pain, I have particular sore spots on the left side of my abdomen where the colon bends downwards under my ribs, and my left pelvis, I have another painful area on the far right side roughly in the middle (when my gp has done physical examinations these are the most painful areas and he said it's colon rather than other organs) the whole of my abdomen is tender, usually bloated and just uncomfortable, I've had tests for celiac disease which were negative. Bowels have been typical IBS in variation so that part I can agree with the GP but surely constant pain for 4/5 months isn't normal for IBS?

There is urgency and softness sometimes (sorry, tmi I get embarrassed about these things) and things are certainly not always normal but no blood).

The past month I've had considerable pain in my left shoulder socket and blade, and under the left side of my ribs, sometimes on the right too but left predominantly. Other than this I get quite shaky, my knees hurt and my joints feel achy/stiff. I get acid reflux and am on Omeprazole, my gp started me on it about a month ago. All in all, the constant stomach pains, fatigue, general unwell feeling and rib pains are getting me down, I feel so immobile and tired all the time, it's not really like me and I have a small boy and a business to run so it's been quite hard on my partner picking up after me because I've been so out of action. Apparently 'soft organs' all appear ok and bloods are all normal. Is there any way this could be crohns? A friend of mine used to suffer badly and said my symptoms were very much like his and that he also had a negative inflammation marker blood test. My blood showed I was slightly anaemic.

I'd be grateful for anyone's time as since I had the US my gp wants to diagnose me with ibs but something is telling me it's not that. I would be really really grateful for anyone's time.

Thanks for reading

Last edited by Anna82; 02-26-2014 at 11:58 AM. Reason: Missed a bit
02-26-2014, 01:24 PM   #2
valleysangel92
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Hello! welcome to the forum, we don't mind you positing at all we aim to offer support and advice to those who are undiagnosed as well as those who have confirmed IBD.

I would first advise you to see if you can get in with a GI, although your symptoms may not be IBD, there is a chance that they are, and a GI will be able to perform further tests such as a colonoscopy and /or endoscopy with biopsies to check for surface or microscopic inflammation. They may also be better placed to advise you on what to do next.

There are differences of opinions on what IBS really is and how quickly it should accepted as a diagnosis, so don't give up if something is telling you it's not right. You know your body best and you can say better than anyone what you feel, so don't be disheartened.

If it does turn out to be 'functional' (which is what ibs is widely regarded to be) there are things that can help to make it more manageable for you.

Please check out the undiagnosed support group which you will find in the support section.
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
02-26-2014, 01:41 PM   #3
Anna82
 
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Thank you, I've reposted there and really appreciate your advice, I feel like the doctors just want me to go away and stop questioning them but I feel that I know my body well enough to know that the pains and other symptoms I'm getting aren't 'just' ibs
02-26-2014, 01:45 PM   #4
valleysangel92
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Don't let them talk you out of getting the testing you have the right to, you can always get second, third, forth or more opinions if you aren't happy with the way you are being treated.
02-26-2014, 01:54 PM   #5
PVail
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hey Anna
First of all DONT GIVE UP, it took me nearly four years to get anywhere. And now all of a sudden my daughter has the same symptoms. Its so frustrating and Im not sure who to blame for the dismissive attitude and arogance of the health service. As far as i see if aint got a big sign on it saying waht it is they just go for IBS.
DONT GIVE UP >
Deal with symptoms one at a time , see what helps .
Peter
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Last edited by PVail; 03-05-2014 at 04:43 PM.
02-26-2014, 03:07 PM   #6
Anna82
 
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Thank you, that's really helpful and supportive, good to know I'm not alone
02-27-2014, 03:26 PM   #7
dreyes7373
 
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Hi, I hope you are feeling better. I have had many years of abdominal pain along with many other issues so I understand your pain and frustration. First I agree with the other post, you need to go to a GI specialist, but I would also suggest talking to your GY/OP I have Crohn's but I also suffer from endometriosis. And you would be surprised how similar the pain is.
02-27-2014, 03:31 PM   #8
dreyes7373
 
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Hi, I hope you are feeling better. I have had many years of abdominal pain along with many other issues so I understand your pain and frustration. First I agree with the other post, you need to go to a GI specialist, but I would also suggest talking to your GY/OP I have Crohn's but I also suffer from endometriosis. And you would be surprised how similar the pain is.
02-27-2014, 03:33 PM   #9
Anna82
 
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Thank you, about 5 months ago when these problems got really bad I had a bleed for a month (PV) we never found out the problem, I haven't bled abnormally since, could it still be endometriosis?
02-27-2014, 03:57 PM   #10
dreyes7373
 
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Absolutly what you are saying very much sounds like a female problem.
02-27-2014, 04:21 PM   #11
Anna82
 
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Interesting, I spoke with my gp tonight he said he can't match me with anything so he's gonna try to push the ct scan closer, fingers crossed he can and it might give a picture of what's wrong, I've noticed a real decline in how I feel this past 6 months
02-27-2014, 05:17 PM   #12
dreyes7373
 
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I'm happy to hear he is going to try and push through the ct scan. But know that will not show endometriosis You normally start with a ultrasound. I hope they find what's wrong so you can start to feel better
02-27-2014, 05:23 PM   #13
Anna82
 
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Ah, I had an ultrasound last week and it didn't show anything, so I guess that rules it out?
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