A Hard Patient

I had another appointment with my GI doctor. He said I was a hard patient in 2 ways. The first being that I have a very hard, difficult case of colitis that does not respond well to treatment. The second being that I was a very tough lady who just keeps rolling with the punches.

I am actually feeling pretty good, but we can't get me off steroids without intestinal bleeding. My diet has helped a lot. I think it's the only thing keeping me functioning. But it doesn't seem to be enough.

The discouraging news is that we are running out of treatment options. Now we're trying a dual-therapy of immune suppressant drugs. And my insurance just approved the use of Entyvio, which is a newer IV infusion drug for colitis. My doctor has also referred me to a surgeon to "establish a relationship" in case it gets to the point they have to remove my colon. Yay!

My doctor was surprised by how well I took in everything. He said he was having a hard time getting a reading on me. I know that it helped that I had gone to the temple that morning, and it definitely gave me strength and peace. But it was still discouraging to hear how close we are getting to surgery.

But, I'm going to do everything possible to not let that happen. I restarted the SCD diet, this time actually doing the Intro Diet. For 4 days, all I ate was hamburger patties, fish, eggs, homemade yogurt, chicken soup, and grape juice (100% juice). I honestly don't think I could have done that when I first changed my diet. Especially since homemade yogurt is an acquired taste. But the 4 days went by pretty fast. Then there are 5 Stages to add food. The first stage you can add ripe bananas, applesauce, and baked squash. Then each stage you add foods that are a little harder to digest. Raw fruits and veggies are in Stage 4 & 5. Whole nuts are in Stage 5, etc.

I'm adding new food one at a time so I can see if there are specific foods giving me grief. I've decided to try 2 days for each new food. I figure it will take at least 2 months before I get to Stage 5, which is basically how I was eating before. So far, all I've added are ripe bananas.

It's also sad because I just discovered Larabars, which are a SCD legal fruit/nut bar! I have a whole box sitting in my cupboard, that now I can't touch for while. I'm pretty sure they are a Stage 5 food.

But whenever I see food I want to eat, I think "Is it worth it to have surgery" and the answer is always "No!". It is funny though, because now instead of talking myself out of eating cookies, I have to talk myself out of eating fresh fruit and veggies.