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Posted 2/19/2013 3:03 AM (GMT 0)
Hi,

I've been reading from this site for the past few weeks, and have found it very helpful.  I was just FINALLY diagnosed today after many, many, many test (as I'm sure you all can understand).  I also was diagnosed with Ankylosing Spondylitis (another auto-immune disease).  Right now, Dr. wants to try Lialda, donnatol, vancomycin and I'm already taking Canasa, and hydrocortisone sulfate suppositories. 

 

I'm very scared, nervous, confused - Dr. said we'll try these, and since my Rhemmy wants to put me on Humira for the AS - wait a few weeks for that - then Humira may be my answer.

 

Also, right now as far as eating, i'm able to tolerate toast, rice, potato (plain), an once in awhile half of a chicken breast. I've lost 19 lbs since Jan. 20.  - any suggestions on what else to eat?

 

Any help would be apreciated so much.

 

 

Posted 2/19/2013 3:19 AM (GMT 0)
I am so sorry for another newby. You have found a great site for info. The veterans here are very knowledgable. Best wishes to you. Hope things get better soon and your diet can expand a bit.
Posted 2/19/2013 3:35 AM (GMT 0)
I'm sorry to welcome you to this illness, whatever you do...DRINK, DRINK, DRINK LOTS OF WATER AND I'VE FOUND THAT PIZZA, CHEESE TYPE SITS WELL. Eat several small meals, creamy peanutbutter and honey may be good to eat as well. I went into renal failure last year with uc. and was in the hosp for 6 weeks. WON'T DO THAT AGAIN!

GOOD LUCK!
Posted 2/19/2013 4:27 AM (GMT 0)
Hey CMCD. The thing about UC unfortunately is that different things work for different people. Most likely because UC is an umbrella term for many diseases. You just have to experiment and try different things until you find what works. For me a vegan diet with lots of bananas and probiotics helps me. But it might be different for you.
Posted 2/19/2013 6:09 AM (GMT 0)
Sadly I must say Welcome! You found the best place though right away, took me 6 yrs.

Had your doc mentioned pred? It could help you on both of those auto immunes. Humira not a bad choice either.
Posted 2/19/2013 12:36 PM (GMT 0)
CMCD,

Welcome to the forum.

Sorry you have to be a part of this terrible club.

I'm surprised you're able to tolerate what you're eating.

For many of us with UC, gluten and dairy are not well tolerated.

I would suggest you look into LDN, low dose naltrexone (there's a post on the UC resources page at the bottom that addresses it) because it's been shown to put people in remission with UC and Crohns, but also has helped many with AS too.

 

Posted 2/19/2013 2:17 PM (GMT 0)
Thank you all so much for replying. What my Dr. said is he wants me to start: Lialda, donnatol, vancomycin, I have to go see him again next Monday, if i'm not feeling better, he'll put be on pred., wants to give that a week or so, then Humira. Also on Canasa, and hydrocortisone sulfate suppositories.


I miss my coffee :( - up until about 3 days ago I was still having a half a cup in the morning, black - but I realized it really wasn't helping me. So now I have a spliting headache and Dr. doesn't want to take Advil or tylenol at this point.

I will sometimes eat chicken breast at night or weekends, I have found that it gives me more pain (and more bathroom visits) - working full-time 45 min. away from home, I'm afraid of that, so I keep it simple - still have pain - just less.
Posted 2/19/2013 4:57 PM (GMT 0)
You can take tylenol...and there's one with caffeine as well.

The Donnatol should help.

q
Posted 2/20/2013 12:55 PM (GMT 0)
CMCD,

Take a look at the research on LDN, low dose naltrexone - because in your case it will take care of both the UC and AS.

Posted 2/20/2013 1:39 PM (GMT 0)
First line treatment for AS is NSAIDs like Advil, which are not an option for you because of your IBD (NSAIDs can cause GI bleeds). Second line treatment for AS would be biologics and/or immunosuppressants, like Humira, Remicade, Simponi and/or methotrexate.

I would hope your rheumatologist would be aware of this, but if not, just as a reminder... Etanercept (Enbrel) is really effective for AS but it's worse than placebo for UC. I'd stick with a biologic that is known or suspected to be helpful for both AS and UC like Humira or Remicade. My rheum wanted to give me Simponi so there might be some anecdotal data for treating UC with Simponi, orrrr maybe she was in the pocket of the pharmaceutical company :-\
Posted 2/20/2013 2:11 PM (GMT 0)
I also was diagnosed with Ankylosing Spondylitis (another auto-immune disease)... and since my Rhemmy wants to put me on Humira for the AS... i'm able to tolerate toast...

First of all Ankylosing Spondylitis is probably not a separate auto-immune disease. Many people with ulcerative colitis have secondary symptoms and arthritis, and especially AS, can one one of them. I had severe arthritis during my last flare that went away when the flare ended.

I mistakenly thought I could tolerate toast, bread, anything gluten during my flare also. Maybe you can tolerate gluten too, but I really, really recommend staying off gluten for a couple of weeks to see if your symptoms lessen. Later perhaps do the same with dairy.

Chicken and chicken broth is a safe food for many of us. Apple sauce, find out what is truly safe for you. I could not tolerate coffee during my last flare but it is OK for me now. So you may not have to stay away from coffee forever.
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