Could this be crohns??

[Michael74]

Hi, my name is Michael and I am from Australia.
Since 1999 I have experienced upper abdominal pain and have not got a clear diagnosis. When it first appeared, I saw a few doctors and and had many tests but nothing came up except for reflux oesophagitis which I have been treated for with high dosage PPIs.
I have since had normal endoscopys and normal colonoscopys.
Shortly after the pain started in 1999, I developed pain in my lower back which was diagnosed as sacroilitis and told I had undifferentiated spondyloathopathy.
I have since had regular other arthritic problems in other joints and inflamation in my eyes.
My current symptoms are very painful upper abdominal pain, lower back pain SI joints, fatigue.
I do not have diarrhea, I do not pass blood and I am not losing weight.
In 2002 I had a small bowel enema which was normal.
In 2004 I had labelled white cell study which was normal.

I keep an open mind about the possibility about having crohns. I am not saying I have it, but I am not saying I do not have it.
I think it is a possibility because of my inflammatory joint disease which appeared a few months after the upper abdominal pain started.
Although I do have a reflux problem, I believe it is under control with the PPI medication I take and all follow up endoscopys have shown that it is under control.
The abdominal pain has become very severe over the past 2 months. The doc ordered a CT scan which came showing inflammation of the stomach and the duodeum. I am not sure if this is the cause of my pain.
If I suggest crohns to a doctor they dismiss it and tend to diagnose IBS.

What do people think? Are there other tests I should be asking for? Could this be crohns? Is there any point in doing these tests again?

Thankyou for reading me post.

 

[Rebecca85]

The inflammation in your stomach and duodenum needs further investigation. If your are already on PPIs then it's unlikely to be gastritis (since the treatment for that is antacids). And they shouldn't diagnose you with IBS as a) there is a physical problem that could explain your symptoms (IBS should only be diagnosed if all your tests come back normal) and b) I think for IBS you need bowel symptoms like diarrhoea, constipation or both.

I think you would need an endoscopy to take biopsies of the inflammation in your stomach, and see why it is inflamed. I think Crohn's is a possible explanation. But sometimes doctors don't like it if you know more than them, so maybe say you don't understand why your stomach is inflamed, and see what they say.

 

[RachLG]

Hi there Micheal - I'm sorry you're not feeling well! Your symptoms sounds a lot like mine actually - severe abdominal pain, low back pain, but no change in appetite/weight, diarrhea, or obvious blood. Unfortunately, I am also undiagnosed after many many tests. I wanted to ask you if you've seen a rheumatologist or had an ANA (anti-neuclear antibody) blood test (which is one marker for autoimmune diseases). I ask because you have issues with your joints as well, which is something I don't have and seemed to cause my rheumatologist to think I'm not dealing with autoimmune. That might be a good avenue to check if you haven't already. I hope you find the answers you're seaching for and begin to work toward being on the mend!

 

[MADiMarc]

Hi Michael,
Welcome to the forum. I cannot really help you as I was diagnosed rather quickly. The pain bit bothers me and it really bothers me that the term IBS has yet again been misused. Rebecca is right on the money there.

Keep asking your questions. Keep doing your research. Could it be Crohn's? Sure but it may not be either. Not the answers you were looking for though. Sorry.

Good luck,
Michele

 

[archie]

Hi Michael, what have your blood tests shown (if you've had them taken) if not get them checked for raised inflammatory markers (ESR & CRP) which may indicate a rheumatological condition or IBD. Before I was diagnosed my main complaint was upper abdominal pain and back pain and the endoscope and CT showed inflammation in the duodenum, the CT scan did show IBD in the terminal ileum which was confirmed as crohns with a small bowel series, colonoscopy and eventually surgery. Since the surgery my back pain and tummy symptoms have gone. Hope you get some answers soon.

 

[PERDITA]

Hi Michael

Sorry to hear you are suffering, I am from UK and certainly here doctors are very reluctant to diagnose symptoms as crohns related until they have exhausted every other possibility, my consultant said that it typically takes nine years to get a diagnosis. This was certainly true for me, I started with severe stomach ache around belly button area after a severe case of food poisoning and was back and forth to doctors and hospitals for years until finally after passing black blood was rushed in and only after doctors opened me up and took out part of my intestine and appendix as well did they concede that it was crohns. I had endured every test imaginable - it was such a relief to get a definite diagnosis. That was 2003 and the pain I get now is always still above belly button but I have developed stomach ulcers as well due to crohns. The symptoms you describe sound like stomach ulcers to me, keep putting the pressure on your gp until you get some help.

Regards

Perdita

 

[Astra]

Hi Michael
and welcome

Nothing more to add, except keep pushing for more tests, and persist with the referrals to rheumy, and don't take IBS as a diagnosis, you don't have eye irritations or arthritis with IBS.
here's a table of differences
http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm

good luck
Joan xxx

 

[Michael74]

Thanks everyone for your thoughts. It has inspired to go back and keep pushing for some answers.
I am seeing the GI specialist and Rheumatologist in late February. My doctor has written a referral letter and has suggested that the camera capsule test is performed.
I am just hoping I am not dismissed again and given the same answer...."you can't have crohns because you your colonoscopy came back clear".
I have had all the blood results which have come back normal. Don't know if this is true, but the Rhuematologist told me that about 40% of people with an autoimmune disease have normal blood tests.

 

[PERDITA]

Hi Michael,

Keep the pressure up on your doctor, I had colonoscopy last year and was told it all ok, then had more problems and ended up back in hospital to be told that the doctor who performed procedure (wasnt very good, so was dismissed and so results unreliable!) I dont know about you but I have always assumed that all doctors know what they are doing, my confidence was kind of knocked by this news and now I question EVERYTHING.

 

[Astra]

Hiya Michael

Loads of us have had normal blood work, this is very common, but don't let that deter you, keep pushing!
And good luck with appts.
xxx

 

[DougUte]

Hi Michael, Welcome to the forum.

I have had several years long battle before getting diagnosed with Crohn's last summer. I spent the last 4 years under the belief that I had IBS. With IBS you are suppose to increase your fiber intake, etc.. The exact opposite as with Crohns. I had 6 trips to the ER in 2 months and the G.I. doc did not do all the tests and told me it was IBS. I believed him. Much later I found that IBS does not have the severe symptoms that sent me to the ER.

Last June I had another ER trip. This ER doc took abdominal X-Rays (which I was told in the past were always clear), and saw something this time. For the first time ever, this ER doc ordered a CT scan of my abdomen. After the CT scan he said to me. "You do know that IBS is the diagnosis that means they could not figure out what you have, don't ya?" He then said, "It's not IBS. I think you have Crohn's Disease." I went to a new G.I. doc, who confirmed the Crohn's diagnosis and sent me to a surgeon. In October I had surgery to remove my illeum and 2 ft of diseased small intestine. I am now mostly recovered and am doing much better than I have in years.

I read your story and could totally relate to you. Push your doctors, and don't let them forget about any test results. My new G.I. was about to chalk this up to IBS until I reminded him of the CT scan results from the ER. He took another look at them and then ordered a whole bunch more tests, which led to getting the confirmed Crohns diagnosis. Make sure you are on top of your results, if they tell you something that does not seem right to you, question it. It is the best way to get to a diagnosis, and the treatment you need.