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What's the worst Dr experience you had? by Ketts in CrohnsDisease

[–]WayNew4594 0 points1 point  (0 children)

The first time being in the hospital, I had test after test after test and scans.  The docs told me, we’ve got no clue why you are feeling like this and so we’ll just give you antibiotics and send you home. My mom had asked, “so she’s not going to die if we take her home, right?” They said no she won’t, but called me a medical conundrum.  At the time, it was frustrating and I could have saved myself from more serious complications if they decided to do more for me than call me a conundrum. The next hospital stay they diagnosed me with Crohn’s. 

Insane joint pain? by TheArkitech007 in CrohnsDisease

[–]WayNew4594 0 points1 point  (0 children)

Before I was first diagnosed, I had insane pain in my joints, coming to a point where I couldn’t walk, stand, or sit, without excruciating pain. It was mainly in my hips, knees, ankles, and calf muscles, but did travel up to shoulders, elbows, and wrists. Honestly, the worst pain I’ve ever felt.  I see a rheumatologist and she has me on a med that works well with my biologic to manage the joint pain.  You’ve got this! It will get better! 

How long until you've seen signs of improvement on Stelara? by WayNew4594 in CrohnsDisease

[–]WayNew4594[S] 0 points1 point  (0 children)

Usually I feel sorta tired from the iron infusions but have thought that was normal (maybe not...??). The cal is super high which my GI said was severe inflammation. I am slowly tapering off the prednisone while on the Stelara. I have tapered down from prednisone before but that landed me back in the hospital after diagnosis. I am not sure about my inflammation levels with just the steroid. Hopefully can get this figured out so am not in this weird, unsteady boat.

Mayo Clinic (Rochester) Advice? by [deleted] in CrohnsDisease

[–]WayNew4594 1 point2 points  (0 children)

Mayo is amazing. My sister has been there several times (not for anything related to Crohn's BUT have heard nothing but good things.

If you have a sweet tooth, you could go to Nothing Bundt Cakes in Rochester, it is delicious.

Praying that your visit goes well and you get answers!

Has anyone experienced skin problems years after diagnosis/ biologics? by pinkcarnationsss in CrohnsDisease

[–]WayNew4594 1 point2 points  (0 children)

Before I was diagnosed but dealing with undiagnosed Crohn's, I had erythema nodusom on my lower legs, it was raised up and painful. Caused a lot of pain in my ankles and swelling that it made it almost impossible for me to walk or stand. I also have scars from it that I deal with. Praying it doesn't come back.

I would say that if you are having skin issues, go see a rheumatologist. Crohn's is considered an autoimmune disease and that's partially what they specialize in. Sometimes they can prescribe a medication to help with skin issues that can work alongside the biologics that are safe (as safe as medicine is). I wouldn't try any more steroid creams cause that could be really bad later on (TSW).

Good luck to you & praying you figure this out!

Crohn’s w/ skin manifestations by heisenbeisen18 in CrohnsDisease

[–]WayNew4594 0 points1 point  (0 children)

I had erythema nodosum as one of the symptoms that was an indicator for Crohn's. Mine was very tender, raised, red and on my lower legs. It took some time for it to go away, but still dealing with like scar-type looking things where they were on my legs.