I'm back! If you look at how many posts I have compared to the rest of you, I'm a "new kid on the block", but I already feel like this has become a community of friends, and I missed you! When I started this discussion/thread, I feared I might come off as sounding selfish for wanting to have a place to cope and vent instead of discussing my daughter's Crohn's symptoms and treatment, but clearly this has been a blessing and an eye opener. A blessing because of all the friends I feel like I've found here, and an eye opener to learn that I and we are not alone in our experiences. So many of you have commented that you could have written a certain post because of the vast similarities. I couldn't agree more.
Marni had not been doing well for the past few weeks. When I say that, I mean she's been worse, because she's never really been "well" since her diagnosis five years ago. So, we put her back in the hospital Friday a week ago for another MRI. I was hesitant to go along with it because none of the other internal tests have every shown anything, including the MRI done last summer. Then, on Sunday, when we were being discharged, the doctor in service from our peds GI group told me that the MRI was negative. I was pissed off because I told our doctor when he suggested it, that I didn't understand why we were doing this again when no scope, MRI, upper GI, pill cam, etc has ever shown anything significant before and I had no reason to expect it to be any different this time. Getting in IV started in Marni these days is almost impossible, and sometimes she has to be sedated just to get it going because they hurt her so much digging around for a vein. So, I put her through all that torture for nothing. BUT.....
Then, on Wednesday, when we went for her every-other-week visit with her GI, he told me the MRI was NOT negative, but rather showed inflammation in the descending and sigmoid colon. He talked about how the pain she's been having and the phantom poops were because that part of the colon was working hard to get what it "thought" was poop out, when it was really inflammation. Then he told me about the new drug he was starting.....the steroid foam. I have no idea how I managed to go through this forum without learning about the foam.
All I could do was laugh when he told me. I went from crying from the frustration of her constant pain with no relief to laughing when he told me how to administer the foam. I didn't laugh because rectum discussions are funny. I laughed because I had a very vivid image in my mind of how that was going to go at our house. I asked him if the foam came with a crowbar because i know first hand how tightly my little 10 year old pricess can clench when she is in protection mode, if you know what I mean.
He got this "Well YOU ARE the parent" vibe going, and I just said.....I know her, and I know that ain't gonna happen. LOL Then I asked him if we could get a home health nurse to come to our house to administer it the first couple of times and if not, could he give me a Rx for a sedative for ME for when I had to do this. LOL
I obsessed about it for two days, but finally sucked it up and decided to "git her done" last night. She fought a bit, but once I got the message to her that this was going to happen no matter what, and even if it wasn't last night, it would be the next day, she relented and let me.
Now comes the "am I crazy" part.......Am I crazy, or is it possible that this stuff is so good it actually started helping after ONE half-assed (no pun intended) application? I wasn't really even sure I had done it right, although she assured me, it felt right! LOL
Wow, I sure have rambled on, haven't I? i'm sorry.
So, my point was that I missed you guys. I read all the posts that were written while I was away from the forum and I wanted to answer each one separately....you all have had such wonderful things to say to each other. I loved the idea of someday having a real meeting....fun stuff. But, before then, if any of you head down to Texas, Houston, specifically, I hope you'll let me know before then.
To kiik specifically, there are many of us who are old enough to be your parents, so consider us your "foster" Crohn's parents and lean on us. Maybe you could show your parents this thread and ask them to read all the comments so they can see they are not alone in watching their child suffer as they have.
Well, gotta go....Marni just came out of the bedroom saying she's hurting and wants to lay on the couch next to me for a while. night night all.
Stacey