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My daughter's update

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Ulcerative Colitis
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Posted 9/5/2011 9:43 AM (GMT 0)

Hi

When I posted last week for Pam & Brandon, I noticed a few of you asked about my daughter (Paige). Thanks for asking, so here is an update... We met with the surgeon last Tuesday and our plan for now is to wean her down to 10 mg of Prednisone (she is on 30 mg right now) and then plan to have surgery the last week of September.  It makes me so mad that she was put back on the Prednisone after being off of it for 5 weeks.  if she had stayed off of it, she would have had surgery by now and be on her way to healing.  But, I also have to look at the fact she would probably still be in the hospital if not for Prednisone.  shakehead   I don't think the surgeon would've operated on her being as sick as she was, and I know at the time, we were not prepared mentally for the surgery. We would like for her to have 2 step surgery, so it is important we get her dose as low as possible.

We decided to put her in Independent Study instead of "regular" school, which I am still trying to come to terms with. We had been planning for 10 months for her to be back in school for the start of 8th grade and now she won't be going back to school until  January 2012 cry     She has developed such severe anxiety...i just cannot see her going to school with the colostomy bag.  She gets really upset any time school is mentioned, so I have  chosen to let the topic "rest" for now.  Hopefully, she can have step #2 done during Winter Break and then be all ready to go back for 2nd semester. 

Her biggest worry is that the surgery isn't going to "fix" her and she will be one of the few who continues to have problems after her colon is removed.  i have to say our family has had pretty bad luck the past 2 years and at this point, nothing surprises me.  She was the 1% that got pancreatitis from mesalamines, so she thinks she will be "that unlucky person" who doesn't have a successful surgery.  I can't blame her for feeling this way...even I am afraid to think she will get her life back post surgery.  I am certainly not going to tell her everything is going to be fine and wonderful after the surgery...of course I am being encouraging, but after all we have been through I cannot lie to her and tell her everything is going to turn out just great and she will never have another UC related problem again...I sure hope it does turn out that way, but she has become very skeptical.

Sorry this has turned into a novel. It is 2:40 am here and I cannot sleep!! I am dumping everything in my head out onto this post yeah

Posted 9/5/2011 12:21 PM (GMT 0)
Best wishes to you and your daughter. May she have an unenventful and successful surgery. Stay positive....I am amazed everyday that I have come thru what I did with UC and having surgery and I am doing great. It's only been a year and what a difference in my life. I'm sorry she has to go thru this at such a young age but kids bounce back quicker than us old folks! ( I had my surgery at 42). She will do great! Sending prayers to you!
Posted 9/5/2011 2:43 PM (GMT 0)
I wish her and you the best.  I can't imagine dealing with one of my kids having this.  It is one thing to make decisions for yourself but your child. Ugh!! I wish her a speedy recovery and a successful surgery.  Keep us posted. As far as school i think you are doing the right thing.  I would do it.  Hopefully when she is better she can go to school and enjoy herself like she is suppose to be able to do.  I can't imagine being in school with UC and having to worry about the kids making fun of me or having an accident.  Poor girl. 
Posted 9/5/2011 3:18 PM (GMT 0)
Hey, wonderful to see you here, though I wish it was with better news. I am happy you're moving forward with surgery and that Paige will soon be free of UC. I completely understand her worries and trust me, if I were in her shoes, I would have the same concerns. It's not really rational to think that way but when you have this illness, you already feel like you're unlucky to have it and you feel like you have no control of things. I have had my share of complications as well, I couldn't taper off prednisone, I became neutropenic from 6mp, had to see an oncologist... we all have these issues, it's par for the course. I hope you're able to ease her mind and her anxiety over the next few weeks while she prepares for surgery. I think she's going to be pleasantly surprised when she is UC free and able to live life as she did prior to UC. It's really only a few months away. It seems like a long road but time will fly! I am excited to see you back here saying how well she is doing and that you wish you had done it sooner. I think the school situation is your only option considering how she feels. I can 100% understand why she feels the way she does, sadly, kids can be cruel. She has to do what she's comfortable doing at this point in her life. After she's feeling better she will get back on track and be better than ever. January is right around the corner!!
Posted 9/5/2011 7:35 PM (GMT 0)
Hi MLD...thank you for the update on Paige's presurgery appt.

I think how you're handling things as honestly as possible is the best way. While there are always risks, I'm sure she realises surgery is the only way to go.

I like the no discussion about school for now. No use since her only focus is to get better, one can only cope with so much distress. Resuming school when she is able seems the only option. While catching up might be a bit stressful, she will be feeling much better and hopefully have a more optimistic perception of herself and the future, wanting to dig in and do the work.

I hope she has good friends. It seems Brandon will be a motivation as well. While family is a huge part of healing, friends can trump that by way of relating to other stuff.

One thing about when she's having surgery...please make sure the hospital is giving her the predisone...I have a friend who is on 5mg dosage consistently, and when she was recuperating from back surgery she started crashing...it was realised no one was giving her the predisone for 4 days. Small dosage, big impact. Thankfully it was noted.
Not meant to scare you...just sharing.

q
Posted 9/6/2011 1:17 AM (GMT 0)
I am praying for you daughter.
Posted 9/6/2011 3:12 AM (GMT 0)
That sounds like a good plan. Maybe 10 months to be back in action is too conservative, if you do 2 step it is likely to be less than that. In any case see if you can line up meaningful things she can do or learn during her downtime. We planned a bunch and were able to do way less, but the planning also keeps you going. On the other hand, after recovery my son already did way more than we ever dreamed.

The concern about things going wrong with Mezalamine is understandable, but maybe it will be for the best in the long run. In any case it is not an omen for how the surgery will work. We also had a two year spiral, which told me that surgery was meant to be.

Tell Paige we are here cheering for her.
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