28th of June

My daughter will have her colectomy on Thursday. I want to thank everyone who has taken the time to answer my questions and though I haven't always had the knowledge or ability to respond to your concerns, I wish you all the best of health. For various reasons, we have decided to forgo remicade. I am scared beyond belief. The past three years have been a nightmare and I pray this restores her to good health and that we are dong the right thing for her. The idea of managing the ostomy is so overwhelming right now, I hope we can get a grasp on it fast so she can get back to being a little kid asap.

     Ironically, the 28th of June will mark my 2nd anniversary of the date I had surgery.  It's a good thing...lol.  Everything went well.  I had a few minor blips, but I was 63 yrs old at time of surgery, prednisone dependent with high blood sugar and blood pressure.

     Wishing your daughter the best of luck and may she be blessed with a healthy, happy future.  God bless.

I can really feel how frightened you are. Just know that she is going to feel much better as soon as she wakes up, that she is going to recover and bounce back to life very very quickly because she is so young, and that she will feel so much happier because of all the energy and time she will have freed up from illness. She'll open up more, and there will be only very positive and happy developments in her feelings and personality. Many good, healing, uplifting thoughts coming her way. Don't fear, you made the right decision for her and you deserve all the support in the world for having to decide under dire circumstances.

Thanks all,
I will buy the bed pads, face cloths, order the hosptial packs from the major companies tomorrow (I really do appreciate the practical tips, as I feel very overwhelmed by this)
Christine, well that's a coincidence! I remember when you were making the decision for surgery on the UC board and clearly it's been the right thing for you. I hope we can say the same thing very soon.
B'Dereh and Collicat, thank you. I needed to hear those words. In fact, I will re-read them again I'm sure as Thursday approaches. I really do appreciate it. In my head I do understand that this is the best chance to restore her to full health and that we have tried everything we reasonably could, but that doesn't make it any easier. There will be sleepless nights ahead, but hopefully only very temporarily.

Somedude, I hope you find something that works for you and gives you that remission. We probably would have tried remicade but my daughter's tb skin test was positive (she had the anti tb vaccine at birth as she was born in a tb hotspot and i regret that i ever gave it to her). I know rationally that remicade does not prevent colectomy only delays it (there's a lot of research to back this up) in UC. It also usually requires higher doses in UC than in CD. So, considering it would have meant putting it into her body without knowing the long term effects (especially on a child) only to end up where we are anyway, we decided to forget about it. I had to dig deep to say no to something that *might* give her remission - it was the worst decision we've ever had to make by far.
Good luck to you. Try everything you can - FMT, LDN, antifungals etc.

Infliximab has not decreased the percentage of UC patients who require colectomy (those with mod-sev UC which my daughter has). According to my research, it can delay but not prevent colectomy in patients who would have required it had it not existed.

http://www.ncbi.nlm.nih.gov/pubmed/18472316

There's quite a bit more on this on pubmed if you're interested.

June 25th 2010 is the day I got my life back.
June 28th 2012 will be the day your daughter gets hers back.
Sending tons of prayers that she has a super speedy recovery. :)

Please let us know as soon as possible how things go on Thursday. You truly will be on my mind all week....

Killcolitis I'll be thinking of you both on Thurs. I know how hard a decision this has been. I think, as others have mentioned, the part of the equation that is hard to wrap your mind around is her feeling so much better. I put off surgery for years too, just lost all perspective on how sick I was.... but really, if she gets her health back (which there's a good chance of and is the point...) then you are just going to be so overjoyed that the ostomy learning curve will seem so minor compared to the reward.

I would be very hesitant giving remicade to a young child.... not even sure what the research is on that, but what I've heard, teens are much more likely to have a bad reaction than older adults, seems plausible that it'd be even worse in younger kids.... no idea what sort of lifelong cancer risk you'd be setting her up for etc, not to mention the weakened immunity (I had a 104.6 fever on cimzia; it was terrifying). I'm sure you've researched this much better than I have, and you can never be 100% sure w/medical decisions.... but it really sounds to me that you are making a responsible and well considered decision. Don't know if you're read Shaz on this list, but her parents made the decision for her at 10 -- decades ago -- and were terrified she'd hate them for it, but she thought it was a great thing, and still does, decades later.

Hope all goes smoothly, and fun little presents and games and such sounds like a very good thing.

I know this is a little over the top, but as a mother you will understand. Nothing brought me more satisfaction immediately following surgery than to think of that f*$&ing colon dying a very slow death in some garbage receptacle!

Sorry to hear of the delay. You were probably all mentally ready for tomorrow. Perhaps they take extra caution with children because yes, most people are VERY ill going in to surgery. I was practically on death's door. Actually I am a bit surprised they would put her on steroids knowing they will do the surgery in a month. Like you said, she has a top notch surgeon...you have to trust him. Hoping the prednisone helps her stabilize and she can enjoy some of the summer. Hang in there.

Yes, that's what I figure. I was worried about the pred before/during surgery but he's well aware of the risks/benefits so it's his call and I defer to it completely but what if she doesn't respond to pred? Then it's the worst of both situations. I guess it will have to happen regardless..
Collicat, yes, that's one thing I don't have weighing on me is questioning this surgeon. I have complete faith in him. If we were elsewhere, I know I would be stressing out about this decision. I just hope she responds to the pred. Very frustrating and worrying but that's where we are at.

Just wanted to add that Dillon was on prednisone leading up to surgery as well. He was on 10mg/day for months leading up to it and, I believe, they uped it for the period just before surgery. (This was at Mount Sinai....different docs but again the best in the adult world...same protocol)

In perfect conditions they do not want you on prednisone when doing surgery but they really do weigh the risk/benefit and your surgeon believes it is in her favour.