Unusual Presentation

[bunnyhug27]

I have stuggled with Crohn's disease for many years. Being told by doctors that what I have been experiencing is in my head, maybe depression. My GI doc was certain I had crohn's disease and started me on Remicadee 2 years ago. Even while on that med, my symptoms continued, no relief. Always on the look out for the nearest bathroom. My GI doc thought, maybe it is not just crohn's but IBS too. I have never really believed in the diagnosis of IBS and that there had to be something more due to the symptoms I experience. My doc encouraged me to go to the Mayo Clinic to confirm my diagnosis and see what else we might do to get me on the road to remission. For the first time on this journey a doctor looked at my records, exmined me, put multiple CT scans together, and extensive blood work and said I am sure you have Crohn's. I have an unusual presentation. The inflammation is outside the colon and small intestine, and that is why they couldn't see anything while doing a colonoscopy. Mayo clinic recommended for me to stay on Remicadee for a while longer and add Uceris for the next few months while I get Imuran built up to a theraputic level. I started the Uceris a few weeks ago and it has helped me so much. The last few weeks have been great, no rushing to the bathroom a ton of times everyday. I hope this continues as Imuran becomes theraputic and I discontinue the Uceris, I have the same results. For the first time in a long time I have hope that one day I will be in remission. Now to get the extra things that have resulted from the crohn's under control. I have developed dry eyes and some joint pain. I am really greatful to have a more clear plan of care and that the doctor at the Mayo clinic believed me and the problems I struggled with for years is real and it is not just in my head. I hate that doctors jump to that conclustion when they can't find the real problem.
Here's hoping for continued healing!

 

[araceli]

Welcome to the forum. It is great that you are feeling better. Hopefully you get to be in remission soon. Eye and joint involvement can be an extra intestinal manifestation, a visit with a rheumatologist and an eye doctor will be a good idea.

 

[Kero]

Welcome to the forum! Glad you found us This forum is a wealth of information and filled with amazing people with different experiences

 

[bunnyhug27]

Araceli, thanks. Just before I went to Mayo clinic I saw the eye doctor and she said I have dry eyes and thought it was related to allergies, but it has just gotten worse since. I don;t know if it is Crohn's or medication related or both. I got rechecked last week and she said it was worse, which I already knew since my eyes hurt more. So she added Restatis and said it will take awhile to heal.

 

[birdonastick]

The eye thing and dry mouth that kind-of-sort-of mirror sjogrens symptoms are not common presentations, but they're not out of the realm of things seen, according to my Optho. If you can find specialists who know their extra-intestinal manifestations well, hold onto them, hug them, kiss them, buy them gift baskets, they're worth their weight in gold.

Sometimes I feel like if someone came into a specialist growing a second tongue they'd say "well you know, Crohn's has been known to do that..."

Adding MTX to my Remicade versus 6mp as the concurrent immunomodulator zeroed out my joint pain, which was getting pretty wicked. Your mileage will vary, but if the Imuran doesn't prove thrilling, you could look into that.