Is it really Crohns?

Hey all,
Back in my early 20s I was having a lot of joint pain but not a lot of noticeable swelling. I went to several doctors, had tons of test (including a bone marrow test...ouch!). They told me I have a small bit of arthritis in my hands, bursitis in my hips and tendonitis in my shoulders. No treatment was offered and eventually the pain went away. Fast forward about 20 years and all the pain was back and multiplied by 100. I couldn't move without crying, I was completely helpless, not being able to dress myself, comb my hair, cook, hold my children ...nothing :frown: I was quickly diagnosed with Rheumatoid Arthritis and started on Prednisone right away which was a life saver. Since it is of course not a med you want to take long term I was was also put on Plaquenil and Methotrexate, weaning off the prednisone after 2 months. I have been on the meds now for about 3 years without too many issues.

This spring I started having stomach issues. Now, I've always had a few issues with my digestion but always just chalked it up to sensitivities but it wasn't bad enough to stop eating what I wanted. Now though it was really bad. Everything I seemed to eat was causing me bloating, cramps and sometimes the runs. My GP did a lactose intolerance test which came back positive. He also sent me to a gastroenterologist. I had a colonoscopy, it showed inflammation in about 12 cm of my small intestine. He said there was also white areas which indicated dead skin or something (I can't really remember I was a bit out of it). Immediately after the colonoscopy he put me on Entocort which I had a bad reaction to and stopped taking it. When I called his office to let him know I went off it, his nurse looked at my records and said there wasn't really an indication of crohns so she thought maybe the meds were just a precaution. I didn't really think more of it. I cut dairy products out of my diet, I had very few cases of the runs but I was still getting the noisy rumbling grumbling sounds in my stomach.

At the time of my colonoscopy my GI also set me up for a MRI. A couple of weeks after my MRI I had a follow up appointment with him and he basically said "so as you know you have crohns..." then got me set up to see the nurse and get going on Remicade. I was in a bit of shock because I really didn't think I had crohns so I just kind of went through the appointment in a daze and did what I was told to do.

I'm still not convinced I have crohns though. I have more constipation issues than diarrhea, yes my stomach sounds like a mack truck and 50 harleys are running through it but I don't have the pain I see every one talking about either. I know every case is different but could he be wrong? Could the inflammation in my intestines be anything else? I will of course ask him but it's going to be a while before I can get in to see him again.

CD does not always result in diarrhea in fact those with small bowel disease can tend toward constipation instead. My son has small bowel disease and has been asymptomatic for a couple years even though there is active disease occurring. He also has juvenile spondyloarthropathy which can occur in CD patients as well as other extra intestinal manifestations that deal with joints.

All that being said, if you are questioning your dx, see if the GI nurse can shed some light on why the GI feels it is CD. Patients can generally pass their questions through the GI nurse and get answers from the GI without scheduling a visit if they are not related to new symptoms and such. Lastly, some times a second opinion can be helpful or even a record review by another GI.

Ds has constipation constipation and more constipation
Very little bloody diarrhea if ever in the past 4 years but he does have crohns
He also has juvenile spondyloarthritis ( anything arthritis that happens with ibd)
Some have arthritis first then ibd others the other way around.
Ds was dx with crohns at age 7 and JSpA at age 10.

Hope the remicade works wonders

Thanks for the responses. It makes me have more confidence in his dx.

Hi cdnrose

When you see the nurse or the GI ask them if the diagnosis was based on the MRI. It might be the GI was still basing the diagnosis on the colonoscopy - they can start to focus on one thing and lose the broader picture -and the MRI did not show anything.

You need that information for yourself, especially in this disease you need to keep your own medical information and not rely on others to keep it for you.

Good luck with seeing the nurse and I hope you get some help.

King of Orange said:

Hi cdnrose

When you see the nurse or the GI ask them if the diagnosis was based on the MRI. It might be the GI was still basing the diagnosis on the colonoscopy - they can start to focus on one thing and lose the broader picture -and the MRI did not show anything.

You need that information for yourself, especially in this disease you need to keep your own medical information and not rely on others to keep it for you.

Good luck with seeing the nurse and I hope you get some help.

Click to expand...

Thanks King of Orange
I don't recall the exact wording on my MRI but it said something along the lines that indication of crohns is present.

I guess I have to just accept that it is what it is. I started paying a little more attention to my symptoms after I eat. I realize a lot more food than I had thought is affecting my stomach. I think I've maybe it had it for so long that the stomach problems becomes the norm, much like my RA, I didn't know how much swelling I had until it went down.