What I learned about my Crohns in Chicago

[aliciars]

So, yesterday I went to Univeristy of Chicago and saw a super doc who is a Crohns specialist. I think I love her.

Anyway, what I learned was this....the flu feelings I've had for the past 2 months are withdrawls from the lovely prednisone, as is the horrible joint pain I've been having. These withdrawls started while I was doing my taper. That I will likely experience this for another month and then I should start feeling better.

I also learned that I am allergic to Lialda!!!! I had been taking it for over 6 months!!! I thought fish oil was my miracle drug b/c I took the fish oil and within 48 hours I had the most formed stool ever. Well I didn't even associate that I stopped taking lialda the day BEFORE I started the fish oil!!! My meds were making me sick.

And lastly I learned that I should have been taking a calcium + D since I started prednisone. I want to say she said EVERYONE should while taking prednisone, but maybe it was just women??? Sorry I don't remember.

For the first time since I was diagnosed last summer I feel like there is a light at the end of the tunnel. I have to go have another scope next week, and then an MRE the week after. Amen to specialist!!!

 

[Entchen]

Wahoo! So happy to hear about a positive appointment for you.
My GI doesn't think supplements are needed for Pred, so I relied on my pharmacist who said, as your new GI pointed out, that calcium + D are super important.

Keep on feeling better!

 

[fromthegut]

Thanks for sharing the news. I'd like to go hear a Crohsn specialist speaker in Toronto some time. I'd like to meet liek minded people and get some connections.

 

[JJOM]

How was it determined you were allergic to Lialda?

I have told my doctors that I think the Mesalamine medications make me 'feel' bad. They usually stare at me for a few moments, and then put me on the next 'type'.

 

[aliciars]

Dr figured it out b/c within 48 hours of stopping lialda, I was suddenly feeling better & did not have D any more. It was the only part of the equation that made sense. Also, I felt better for maybe a month when meds started & then went right back to how I was prior to treatment plus some added yuck. She said roughly 10% of people are allergic to lialda. I know that I felt worse ON the meds than off of them. The hard part was that I was also taking prednisone so I assumed it was the prednisone . Love having a doc who really knows this disease.
Actually speaking of which.... I asked her if I should stop seeing my regular GI (she is 2 hours away & used as a consultant more than a regular GI)... Anyway, she said no. My GI was on the right track. She said, he probably only has a handful of CD patients where that's ALL she deals with. She said once we get me into remission, I'll just see her once a year a - unless there are problems.

 

[Fog Ducker]

Vitamin D is really important for everyone especially us crohnies. I noticed once I started to take it I felt WAY better!
It is one of the most deficient vitamins in our society, especially in winter months, and the cause of seasonal depression. No sun exposure = no vitamin D.