Getting Personal with My Insides
Because I know that those of you who read this blog, absolutely do it to hear me whine and rant about having ulcerative colitis.
But that’s what I’m going to do – right now anyway. I sort of feel like it’s taken oven a lot of my life recently and I need to vent.
Last time I talked about it, I told you that I got put on a new medicine that was so not working out for me. As a result I only took it two or three times and called it quits.
Two weeks ago, I called my doctor because my symptoms were still hanging around and my hair has been coming out like woah since about 2 months after I started Delzicol in the beginning of the year. He talked me into getting a flex sig (not explaining that, go Google it) to see how my colitis really was doing.
I felt so stupid having to go in for one, like he wasn’t going to find anything and I was just going to be a whining hypochondriac. Because my symptoms aren’t always that bad, but I’m just tired of dealing with them. Turns out, he was really glad I went in for the procedure and he’s surprised that I said I felt as good as I did because it’s worse than he (or I) thought. I confessed that I think I’ve just accepted things as “normal” that aren’t really and just felt like a whiney pants because I do have a disease and need to just get used to it. So turns out that none of that is true.
He told me I could stop taking Delzicol since I told him I feel better without it and I think it’s the cause of my hair issues. He prescribed me Uceris- a prednisone-like steroid without the crazy/bitch personality side effects. He also put me on a low residue diet for the next few weeks until our next appointment. That means only white bread and white bread products, rice and pasta (none of this whole wheat business), no raw veggies, only well-cooked carrots, asparagus and green beans, skinless, seedless tomatoes, well-cooked skinless potatoes, no sweet potatoes, only ripe bananas, peeled canned peaches, pears and mandarin oranges, up to 2 cups of dairy per day, no nuts, no seeds, no nut butters, no coconut, no berries, no dried fruits, no onions or peppers or garlic, no steak or tough meat, no lunch meat (which I don’t like anyway), only mild and well crushed herbs and spices.
It is such a boring diet. And it feels so unhealthy!! But the idea is to eat foods that are easy on the digestive tract and foods that will get mostly absorbed before they reach it. It is meant to give my large intestine a break so that it can heal. Soup is going to become my new BFF. With white bread to dip in it. I made a huge batch of chicken soup last night. (It was my first crack at it and I’ll share it later!)
My poor husband is largely doing this diet with me, although not completely because it wouldn’t be healthy for him, and he is completely on board with it. Whatever I do, he says he’ll do it with me and be there for me. I feel so bad because we got married less than 2 months ago, and this wasn’t supposed to happen…at least not already!
The doctor wants me to meet with him again in a month and talk about possibly going on biologic therapy, which I researched a little and honestly, it really scares me. It seems like it’s for people with severe active colitis and I really don’t think I fall into that category. Plus, the possible side effects just don’t seem pleasant. And although it’s such a low chance, it was mentioned that people on it are a fraction more likely to get lymphoma or leukemia (mainly lymphoma). It’s not even a side effect, just something that has to be stated, but I know too many people who have passed away from cancer, and that scares me so much. Dave did point out that letting it go and continue to flare increases the risk of colon cancer by more, but…I don’t know. That can be isolated and removed easier than cancer in your blood.
So I have been having some fantastic freak out moments the past few days. I’m not ready for a decision like this. Why can’t it just go away??!
How about all you lovely people? Have any of you been on biologic therapy for UC? What are your thoughts?