Thanks ladies. I won't stalk the Stelara moms unless we are going to proceed.
The GI visit last week was frustrating for all of us, including her dear GI, so I'm just now posting about it. In a nutshell, our options still suck due to the ATM all those years ago. So......temporary effort to quell the inflammation that (based on her pain) is very low in the large bowel......we are back on the enema train. We are doing the hydrocortisone enemas in the morning and the mesalamine in the evening for 21 days. We have also increased the weekly methotrexate injection to 1.0ml. (That's an increase from 0.8)
The hand inflammation has lessened but is still painfully obvious. Claire will tell you it doesn't hurt as bad as her stomach.
The GI is planning to talk to his adult colleagues that are using Stelara and work on a plan B that's sustainable. This was my request. When he told us about the enemas, Claire started silently crying and wouldn't speak. She finally told him she'd rather take steroids. He told her he couldn't give them to her since she's finally exhibiting systemic effects from the Uceris....growth has completely stopped for about a year and she has unwanted hair in addition to the puffy cheeks....sigh. Then she said to him "please make my medicine a pill". He told he was so sorry that there's not a pill to give her and hugged her and told her she would be okay. It was heart-wrenching to see her shrink into herself. She's always been a force to be reckoned with and it just took the wind out of her sails.
We stayed in there for a bit. The nurse came and I told her we weren't finished and shut the door. Quite frankly, I shut it more than a little hard to kick her out. After she cried a few minutes, Claire said, "This isn't fair." I said, "No, it isn't." She said, "Mom, I'll be okay, right?" and I said, "Yes." Dying a little inside because while they will all be fine, it is never okay that they have to fight this stupid disease.
I've shamelessly bribed her with $$ for a shopping spree to complete these enemas without a fight. I just can't punish her for not wanting to do it.
Then, last night, the hubs and I wrote a long personal email to our long-beloved Rheumatologist who's known Claire since the original arthritis diagnosis at age 3. Followed that up with a telephone conversation today. He is second to none.....such a great physician and even better person. Anyway, he well understood my concerns following the last visit. He's talking to GI anyway about her hand so I wanted him to know what I was thinking before they chatted. We see them both in about four weeks and so he changed her appointment so we could all talk together about how we are going to proceed.
Okay, enough pity party, there are too many of you having an even tougher time than we are. The girl and I high-fived just a little while ago after the evening enema and said, "3 down, 39 to go".
Hugs to you all and even bigger hugs to all our precious children,
J.
