I think this is going to just be a rant to get it all out of my system, so bear with me I'm not sure I even have questions, I'm just thankful to have a place to go with all of this stress.
My son was dx'd with Crohns in 2011, had a bout w/ a perianal fistula, and started on Imuran in 2012. He did OK, with a few rounds of Entocort that had to be thrown in during some occasional/mild-ish flares.
Son is now in college, and over the last 6 months or so, it's clear that Imuran levels are no longer therapeutic. GI tried increasing the dosage in January, but my son got too many opportunistic infections at the higher dose. He's in college, and he just couldn't hold his own against the bacteria in the dorm room
So now that he's home from school, he looks/feels like hell. The colonoscopy today revealed that the inflammation is back and worse than ever. Now he's got severe colon involvement with all kinds of ulcerations, and I am just so worried, scared, depressed, etc....
I had really been pushing to stay away from Remicade - frankly because the side effects scared the crap out of me. We had been trying to keep him stable on the current treatment, also hoping to try a clinical trial with Qu Biologics for their SSI therapy, but we were waiting for him to be done with school. Now it is too late, and he requires immediate intervention.
I feel like I made a mistake. I feel like the decisions we made to avoid Remicade put us in the place where we have absolutely no other choice but Remicade. I feel like a jerk for being the one to suggest that we try to manage this "our way" because I feel responsible for putting my son in this really bad place.
So we're now going through the paperwork process with insurance so we can schedule his first infusion. Doc wants him on Remicade and Imuran - just what I spent two years avoiding. UGH.
I'm so seriously concerned and scared about the side effects. I am afraid to be too hopeful, in case it doesn't resolve things, but afraid not to be hopeful because if Remicade doesn't work, I have no idea what we will do. I just want so badly for this poor kid to have a normal life.
For some reason I thought that we could keep this under control, and it just now feels so out of control. Luckily my son is at that age where he just doesn't get excited/upset about much of anything, he just goes with the flow, but I'm kind of a wreck
Sorry for the diatribe and thanks for listening... If anyone has words of wisdom or anyone has been there/done that and has any reassuring words, it would be greatly appreciated.
My son was dx'd with Crohns in 2011, had a bout w/ a perianal fistula, and started on Imuran in 2012. He did OK, with a few rounds of Entocort that had to be thrown in during some occasional/mild-ish flares.
Son is now in college, and over the last 6 months or so, it's clear that Imuran levels are no longer therapeutic. GI tried increasing the dosage in January, but my son got too many opportunistic infections at the higher dose. He's in college, and he just couldn't hold his own against the bacteria in the dorm room
So now that he's home from school, he looks/feels like hell. The colonoscopy today revealed that the inflammation is back and worse than ever. Now he's got severe colon involvement with all kinds of ulcerations, and I am just so worried, scared, depressed, etc....
I had really been pushing to stay away from Remicade - frankly because the side effects scared the crap out of me. We had been trying to keep him stable on the current treatment, also hoping to try a clinical trial with Qu Biologics for their SSI therapy, but we were waiting for him to be done with school. Now it is too late, and he requires immediate intervention.
I feel like I made a mistake. I feel like the decisions we made to avoid Remicade put us in the place where we have absolutely no other choice but Remicade. I feel like a jerk for being the one to suggest that we try to manage this "our way" because I feel responsible for putting my son in this really bad place.
So we're now going through the paperwork process with insurance so we can schedule his first infusion. Doc wants him on Remicade and Imuran - just what I spent two years avoiding. UGH.
I'm so seriously concerned and scared about the side effects. I am afraid to be too hopeful, in case it doesn't resolve things, but afraid not to be hopeful because if Remicade doesn't work, I have no idea what we will do. I just want so badly for this poor kid to have a normal life.
For some reason I thought that we could keep this under control, and it just now feels so out of control. Luckily my son is at that age where he just doesn't get excited/upset about much of anything, he just goes with the flow, but I'm kind of a wreck
Sorry for the diatribe and thanks for listening... If anyone has words of wisdom or anyone has been there/done that and has any reassuring words, it would be greatly appreciated.