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Doctor thinks I have crohns, 6 weeks of pain unable to work

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Crohn's Disease
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Posted 4/6/2011 11:12 PM (GMT 0)
I have had upper right quadrant pain for 6 weeks, the doctors initially though it was gallstones, had 2 ultrasounds and no stones were found.  I ended up in casualty two weeks ago and was given strong meds and sent home with another diagnosis of an ulcer.  I saw a GI specialist  last week and he feels that it is crohns?? because the pain also radiates to the lower right side.  The pain can last for hours at a time and I have lost 15lbs in weight, I am so fearful of what to eat and have been living on soup.   I am lethargic, depressed and can not recognise the person I used to be.  I have 4 kids and a husband and a fulltime job( which i have not been able to attend to for 6 weeks)  I have a apt to have camera down the throat  and a MRI for next week.   My blood work keeps coming back as normal so did a xray  - but have had 3 doses of antibiotics.  I am really scared that my next round of tests will come back as normal and that I might never know the cause of my pain.  I have had similar pain over the years and had adhesions cut 13 years ago because of lower right quadrant pain, 5 years ago had similar pain but not in upper right just lower and they took my appendix out - was told after the op that it was normal???

I look ill and everyone is commenting on how skinny and drained I look and all I want is some answers

Had so many painkillers thrown at me by docs aswell

If anyone has any words of wisdom I would really apprecitate them

thankyou

Posted 4/6/2011 11:27 PM (GMT 0)

A camera next week AND MRI? Fantastic!! At least your GI is taking your pains seriously, and the camera will be a great way to find out for sure what is going on. Blood tests can often look normal even if you have Crohn's and are in pain, and X-rays can miss things, so a camera can provide great info.

Hang in there...they seem to be taking the right steps, so hopefully you will have an answer, soon. 

Posted 4/7/2011 2:44 PM (GMT 0)
oh you poor thing!!! I hope they find out soon for you. The worst part of all this is the unknown. It took a long time for the dr's to finally find out that i had this darn thing! sounds like you are on the right track. All the hugs in the world to you, and keep us updated.
Posted 4/7/2011 4:25 PM (GMT 0)
Hi I had some upsetting news today, my health care insurance will not undertake a bowel mri only a basic abdominal one. The reason for this is because they only pay for a normal radiologist and not a consultant which is needed to rule out crohns. They've cancelled it now which has really upset me have said that I might beable to rebook for a normal abdominal?? my gp has put in for a CT scan for me but this could take up to 6 weeks. I live in the UK and have limited private healthcare with work. The last 6 weeks have been so scary and I seem to have constant obstacles put in the way of finding a diagnosis. Although we have a NHS system it is very slow on the uptake, Do you know if a upper endoscopy (camera down the throat) can detect crohns ???

many thanks

J X
Posted 4/7/2011 4:28 PM (GMT 0)
Why not a regular colonoscopy and upper endoscopy? These are better than the MRI anyway, since the DR can take biopsies of inflamed tissue and get a direct diagnosis. The pill camera will be able to see parts of the small bowel that are not accessible by scope. Your NHS should cover the scopes, but I hope you don't have to wait too long for it!
Posted 4/7/2011 4:36 PM (GMT 0)
If they think it is urgent then waiting time is about 6 weeks for MRI scans in my neck of the woods (Wiltshire) but as you know this alters depending on your healthcare authority. Hate to say it but only way to get it quicker sometimes is to be admitted into hospital then they will do it sooner to get you out of the bed. I agree that a colonscopy would be better for dx of crohns anyway as sometimes cannot always be seen with naked eye and biospys needed to dx in some cases.
Posted 4/7/2011 5:58 PM (GMT 0)
I was admitted into hopsital a couple of weks ago and they thought I had a gallstone - negative test then a ulcer without a proper diagnosis, dosed me up with painkillers and referrred me for a upper endoscopy that I am having next week and then sent me home. Was back at the docors in very bad pain few days later and he ordered a CT which I am still waiting for. I then had a appointment with a private GI consultant who requested a MRI because he thinks that i have crohns??? pain is affected by food -I have more constipationin than loose bm's, main pain is in upper right quadrant and radiates to lower, have had lower right pain for years and years, appendix removed 5 years ago and was fine. I suppose I will have to talk to my GP about a colonscopy??? thank you so much for your replies.
Posted 4/7/2011 6:47 PM (GMT 0)
If you're scheduled for an endoscopy next week, call that DR and ask if you can have a colonscopy at the same time. You'll already be sedated for the endoscopy. More prep is required for the colonoscopy, and it should be the same DR who does both procedures. Wishing you luck.
Posted 4/7/2011 7:01 PM (GMT 0)
Unsure I will be able to do that with NHS as it as a referral from hospital surgery assessment ward. I guess I will have to hope endoscopy will show show something or CT for a referral for a colonscopy.
Posted 4/7/2011 7:38 PM (GMT 0)
Poor you - like the others I really think you need a colonoscopy not just a gastroscopy. In NZ if they say you are having an endoscopy it usually means both ends and a really comprehensive look at as much as they can get to. I expect they have already checked you for celiac ? Good luck sounds awfully familiar to a patch I went through prior to diagnosis though.
Posted 4/7/2011 7:39 PM (GMT 0)
It wouldn't hurt to ask right? I just had both done at the same time (was diagnosed about 5 weeks ago). I don't think it's that big of a jump especially if your doc has already written on your chart about the crohns suspicion.
Posted 4/7/2011 8:00 PM (GMT 0)
Thats the problem this referral was made by a doctor in the hospital from when I was admitted and he suspected a ulcer and th\t is what he would of written on the chart - but have never had indegstion or heartburn.....only when pregnant. I have since seen a private GI consultant and he suspects crohns and he ordered the MRI through my healthcare with work, but theywont pay for a crohns MRI only a simple abdomen one. Could a upper GI endoscopy diagnose or detect symptons of crohns???
Posted 4/7/2011 8:04 PM (GMT 0)
RE: celiac - Private GI has taken blood for celiac and inflamation and I should get results tommorow hopefully - want to be able to eat food again and put some weight back on and have some energy!!!!
Posted 4/7/2011 8:27 PM (GMT 0)
Upper GI scope may see inflammation in the duodenum and/or stomach, but I'm not sure about the biopsies of those tissues. I've had scopes where inflammation was found in both those places and the esophagus as well, but I don't recall seeing "Crohn's" as a pathology result. It is possible, though.

As for diet, have you tried any of the liquid dietary supplements, like Ensure? They might be palatable and get you some calories. You should be able to tolerate "low residue" foods like broth, cooked fruit, yogurt.
Posted 4/7/2011 8:59 PM (GMT 0)
Colonoscopy is the gold standard test for IBD. Why they have not gone straight to that I do not understand, though the issues you report with NHS are quite common, I hear. I second the motion: ask for both ends to b e scoped at once, you will be much more likely to get some definitive answers.
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