Well, without steroids we did notice natural healing, but the next month we again saw runny stools and blood evident... There isn't a lot of blood, so we and the doctor have been waiting to see what happens. Isaac's health otherwise is great.
At our doctor's appointment yesterday we scheduled another colonoscopy and talked about where this is going. Our doctor is interested in Remicade or Humira and wants us to think about that. They also want to double check on the diseased parts to re-rule out Crohn's (in thinking ahead about a colectomy).
My gut reaction is to hold off on everything so as to not accelerate towards surgery. It seems like Isaac is thriving well in spite of the gut condition, and more time allows us to check allergies and other food reactions and maybe get a better grasp of the situation and be able to handle it without the exotic medications or removing bowels. Also, it allows time for more treatments to develop.
http://getbetterhealth.com/fecal-transplants-getting-to-the-bottom-of-the-matter/2008.11.25
http://www.ulcerativecolitisforum.com/showthread.php?237-Offering-in-patient-fecal-transplants
still praying for complete healing, because that would be awesome!
ReplyDeleteI stumbled upon your blog today and appreciate all that you have written. My little guy just turned 6 last week and is having very similar issues (usually minus the blood). It breaks my heart to see him feeling like this at such a young age and then at other times I do take a step back and appreciate how well he is doing otherwise. I have taken him off every food that seems to cause him issues which seems like alot. However, if he wants to have something, he will ask if it will give him bad poops and if I say yes he walks away. He knows he doesn't want to feel like that. He now eats all meats except turkey, veggies (except squash, pumpkin), corn, apples, coconut milk, and gluten free products that I make at home using olive oil or coconut oil. We avoid so many foods but there is no more waking in the middle of the night to go, etc. I have been considering trying him on the VSL3 also so I am very interested to hear how that is going. I hope Isaac continues to grow and feel better. It is wonderful that you are working so hard to heal him!!
ReplyDeleteThanks for writing! The VSL3 seemed to help but also became extremely to get him to eat, so we are about to get another box of a different flavor (we were trying unflavored.
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