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09-03-2013, 05:43 AM   #1
lizbeth
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Diagnosed Crohns....now told its IBS!!

I'm feeling very confused and rather devastated, I've been living for 10 months with a diagnosis of crohns based on CT findings, symptoms and colonoscopy findings. Since then I have had an endoscopy (inflammation found in oesophagus, initially thought to be barratts oesophagus but later ruled out), a small bowel series (results described by GI as `iffy`) and a pill cam. Got the results yesterday that the pill cam was clear and showed nothing!!

What I can't understand is that everyday I have pain in the LRQ, exactly where ulceration was found during my colonoscopy, biopsies taken at that time came back as non-specific, my CRP was 100 and a feacal calprotectin was 232.

I know 10 months is really no time at all but I was devastated at the start cos I have diabetes too and the thought of trying manage both was totally overwhelming. My dietician doesn't see that my symptoms are IBS. I really don't know what to think and would appreciate any pearls of wisdom please. I'm following the FODMAP diet until I see my GI so I can say it didn't make a difference, the only thing I need to cut out is avocados and broccoli.

Please help and thank you for reading.
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09-03-2013, 02:53 PM   #2
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Lizbeth, I'm sorry to hear you've had your diagnosis yanked away. Can you get a second opinion from another doctor? What specifically was it 10 months ago that they saw that they used to diagnose you? Did they see evidence of Crohn's on biopsy? Are you on any IBD meds, and if so, are they helping?

I'm sure this is so frustrating, I really feel for you. As you may know, I'm undiagnosed myself, so I can understand how confusing and awful it is to have bad symptoms but be told that the test results are "normal." My GI unofficially says I have IBD, based on my symptoms and the fact that I respond well to IBD meds (I do not respond well to IBS meds and I don't feel I have IBS). Sometimes you just need to keep pushing your doctors, and don't let them get away with brushing you off as having IBS. Ask for more tests, try to find out what they saw 10 months ago, see another doctor if you can. Keep fighting! I know it's hard, but there are a lot of undiagnosed folks on the forum, and we're all here to support you. Sending you a big hug!
09-03-2013, 02:59 PM   #3
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One thing that I have really been looking for is a clear diagnoses. All the doctors keep telling me that they can't exactly pin point what it is. It is really annoying. Weren't they trained for this kind of stuff?! I have gone through the last year coming to terms with the fact that I have Crohn's Disease. To have that ripped away from me would be extremely weird. Try to stay strong and not lose hope. I'm sorry to hear that you are dealing with diabetes as well. Doctors can be so stupid sometimes and I'm sorry that you aren't getting a clear understanding of what's going on inside you.
09-04-2013, 05:34 AM   #4
lizbeth
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Thank you both for your replies .
Cat.....Ten months ago the CT showed thickening of the TI, I don't know how much of it was involved, the colonoscopy also showed inflammation and ulceration but the scope couldn't get into the ileum and there was also inflammation in my oesophagus. I lost about 28 pounds weight in a couple of weeks. My CPR was also elevated at 100. Based on all of this I was given a diagnosis of Crohns. Since then I have been on pentasa and have had a 6 week course of budesonide and 4 weeks of prednisolone, I only had a trial of this because of the diabetes it really messes that up. My joint pains all but disappeared during this time and my Crohns pain did ease but a few days off it the pain was back again and because of the diabetes reaction I can't really take steroids any more. I have put on heaps of weight and I think my GI sees that I look well he is dismissing me. I'm due to see him within the next few weeks and I just hope I'm strong enough to be firm with him.

Diseaseddamsel....we must have been `diagnosed` around the same time. I'm still coming to terms with having Crohns and I think I was finally getting my head found it, then it's ripped away and I'm devastated. I was really hoping that I would be getting a treatment plan and that something would help, I was expecting to start immunosuppressants or facing surgery but did not expect IBS.

I'm really rather confused and upset and still having LRQ pain even though I'm taking morphine!
09-04-2013, 06:00 AM   #5
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Have they provided an alternative explanation for the inflammation and weight loss? (IBS wouldn't cause either.) And what on earth does your doctor mean by describing test results as "iffy"?!

What I can't understand is that everyday I have pain in the LRQ, exactly where ulceration was found during my colonoscopy, biopsies taken at that time came back as non-specific, my CRP was 100 and a feacal calprotectin was 232.
I wouldn't rely too much on the location of your pain as a clue to diagnosis. You can have "referred pain", where the pain is felt in a different part of the body than the stimulus for the pain actually is. Especially if you have a crampy, chronic pain, the area where it's felt can be very vague. Plus doctors seem to go much more by test results than symptoms, so the negative and inconclusive tests will unfortunately likely mean more to them than symptoms, and pain they can easily dismiss as IBS if test results don't prove another diagnosis.

I went a very long time undiagnosed, and I know how messed up it feels when you actually start longing for positive test results. Hearing doctors tell you that you don't have a disease doesn't help you when you know you're sick!

I wish I could advise that you should push your doctors for a better explanation than IBS, however I'm kind of reluctant to suggest this because I found that doctors will dismiss anything if they want to. Times when I correctly pointed out to doctors that my symptoms did not fit the criteria of IBS often did not go down well, and to be honest I wish I'd realised sooner when a doctor had his mind made up, as my attempts to tell them there was something more wrong with me just ended up making me sound like a hypochondriac. The only things that helped me were having my symptoms deteriorate to the point where they couldn't be denied, waiting until tests finally did start coming back positive, and finding the right doctors - trying to convince a doctor was a lost cause, for me. Those that did help me believed me right from the start - attempts to convince them weren't necessary.

I'm sorry I don't have more positive advice. Can you get your dietician to help, since she/he doesn't think you have IBS? Maybe she/he can recommend a better gastroenterologist?
09-04-2013, 11:47 AM   #6
lizbeth
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Have they provided an alternative explanation for the inflammation and weight loss? (IBS wouldn't cause either.) And what on earth does your doctor mean by describing test results as "iffy".
I have never heard anything like it, I think I will be asking him to give me an answer a bit more detailed next time I see him. I'm hoping the dietician will help, I believe that's why she took me through the FODMAP diet so that I will be able to say it made no difference.
I understand what you say about the drs too, mine was meant to have retired but came back cos the clinic was so busy...I do wonder at his attentiveness now although before I found him very good. It's so frustrating having my health in his hands though I thought by now I might get help but never thought this would happen.
09-30-2013, 07:40 PM   #7
RosaleeMae
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I'm feeling very confused and rather devastated, I've been living for 10 months with a diagnosis of crohns based on CT findings, symptoms and colonoscopy findings. Since then I have had an endoscopy (inflammation found in oesophagus, initially thought to be barratts oesophagus but later ruled out), a small bowel series (results described by GI as `iffy`) and a pill cam. Got the results yesterday that the pill cam was clear and showed nothing!!

What I can't understand is that everyday I have pain in the LRQ, exactly where ulceration was found during my colonoscopy, biopsies taken at that time came back as non-specific, my CRP was 100 and a feacal calprotectin was 232.

I know 10 months is really no time at all but I was devastated at the start cos I have diabetes too and the thought of trying manage both was totally overwhelming. My dietician doesn't see that my symptoms are IBS. I really don't know what to think and would appreciate any pearls of wisdom please. I'm following the FODMAP diet until I see my GI so I can say it didn't make a difference, the only thing I need to cut out is avocados and broccoli.

Please help and thank you for reading.
The same thing happened to me too. I had crohns and was diagnosed in 2011 because I had all the classic symptoms and colonoscopy showed crohns ulcers in ileum anf colon and inflamation. Then a year later , no two, I had another colonoscopy and they said none were found. I took it as in remission but still had symptoms. Still do. Pillcam someday. Good luck to you!
10-02-2013, 04:39 PM   #8
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It is confused, I hope you get some answers soon.

In contrast I am remission apparently from crohns but have told that I have signs of IBS.

Good Luck. x
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10-02-2013, 05:08 PM   #9
lizbeth
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Thank you. I have read that a person can have IBD and IBS, that's miserable for you.
10-14-2013, 06:46 PM   #10
lizbeth
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Just a wee update, saw my gi last week (not who I expected but the Dr I planned to request a referral to). He gave no mention of IBS said we had to "presume"it was Crohns based on results to date plus symptoms, pill cam wasnt clear after all it showed inflammation but the TI didnt clearout enough so they weren't able to get good pictures.

So now I'm going to be started on methotrexate and I'm pretty scared about it but I can't carry on like this so I need to try something. Wish me luck .

Last edited by lizbeth; 10-19-2013 at 03:26 AM.
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