Wow, it's been a long time since I've written. I haven't written in a while because...well I guess we were doing pretty well, besides the fact of having arthritis stuff come up. Bruce flared in December and January. Wasn't able to walk due to his SI Joints and pelvis/hip weakness. Confirmed through a pediatric orthopedic back doctor that it was not neurological, but yes his inability to walk at times is due to flares in these areas which is when we can see his medication not working. Bruce started Remicade last year around June. He was taking 200mg every 4 weeks. In January we started 300mg of Remicade every three weeks as well as starting on Celebrex. This was an easy fix. We were using Remicade to help control his Arthritis...his Ulcerative Colitis never showed itself for the whole year. We just figured that it would flare eventually but as of this time bowel sounds and regular bowel movements were all good.
Bruce was not acting well in February. Very tired, sleeping late. Just not himself. His joints looked very swollen but he wasn't in any pain and since we were on Celebrex and Remicade every 3 weeks, I thought maybe it was just barometric pressure. One night he said he had a belly ache and the next morning he had a full blown Ulcerative Colitis flare! Just like that no warning, nothing except for the belly ache.So we began the process of trying to control this flare. 30 mg of prednisone was given and Bruce was put on a soft diet. We had to get to the Remicade infusion and doctors felt that this would help greatly. So Bruce ate mash potatoes and bread for a while. It looked like he was trying to get better. His motility went from 12-15 stools a day, down to 1 or 2 with reduced blood and mucus. It was better but not good. His Remicade infusion was on Thursday March 1st. Still had a belly ache. Friday morning he was back to 12 bowel movements and passing a lot of blood. Friday I called the Gastro Dr. and he was going to be admitted to All Children's Hospital...but no beds. So I say...I can do this at home. 60 mg of prednisone, full liquid diet like we did with the onset of the UC last year. Dr said ok, his bowel movements were reduced over that weekend and it looked like his body was trying to get better. Despite our efforts for Bruce
to stay hydrated, he looked ill Sunday morning. Stools were better, still had belly ache and I gave him a couple of Ensures and pedialyte for the day. He felt a bit better and his bowel
movements looked good. I was going to feed him some soft foods Sunday night but decided
against it until the next morning. I think God gives you a special button in your body to
say...somethings wrong! So I got up early to wait for him to get up and he says "mom, I think
you need to take me to the hospital" I really thought he was joking because his motility and
the bleeding was better. Oh how I could of cried. nothing was working... My hands shook.
There was so much blood, what the Hell is going on? I dideverything that was possible. His body was trying to fight it but it couldn't.
The doctor told me to come in so he could be admitted, got my stuff together, called Bruce Sr
and he came home from work. Was at the hospital by 2pm. Bruce was put on 60 mg of IV
prednisone and a liquid diet. His motility was back up to 8 stools that day then 2 on
Tuesday. Tuesday afternoon he was given a lot of Myralax to prepare him for a colonoscopy. I wasn't ready for the outcome.
Wednesday Bruce had his colonoscopy. The DR. came in to tell me that the Ulcerative Colitis has gone through his entire large intestine...from rectum to appendix. Bruce is very young for this and since he as at the top of his medication, there is nothing left for him to try.
THe Dr.W was sorry to tell me that when its like this, Bruce will need to have a Colectomy. He showed me 12 pictures of his intestines and I tried real hard to compose myself but I don't
think anything can keep you from falling apart. I sat and cried. I just couldn't stop. I
called my husband and we both cried. Recovery paged me to say Bruce was up but it took a few minutes to compose myself. So much goes through your head all at once. His whole life... past, present, and future came at me. They were going to get a team of doctors together to
discuss Bruces condition...3 peeds gastros, peeds rheumy, and pediatric surgeon. Each came to
visit me several times to discuss Bruce. My hubby and daughter Katie came down the next day.Surgeon discussed surgery... His whole colon needs to come out! Because he's so young, his chance for Colon Rectal Cancer starts about 20yrs. 5 hours under anesthesia for the first half of surgery. Which scared the Hell out of me. 6-8 weeks or (longer due to prednisone) of healing with a stoma and a bag. Once he's healed they will do the 2nd part of his surgery to reattach the small intestines to the anus and make a jpouch which will act like a rectum. It will take 6 months or longer for his body to adjust.
Bruce spent 2 weeks in the hospital and has come home to prepare for this operation. The goal is to reduce the prednisone as far down as possible. We went from 60 to 20mg but on Tuesday, the 20th he started bleeding again and his prednisone was back to 30mg. We will try to get
back to 20mg by this Monday. It might not be possible to get that low...Surgeon wants less
inflammation and less prednisone but it might not be possible...which is scary for wound
healing. Since he is already on prednisone they will have to give him a very large burst of
prednisone right before his operation so as to not have blood pressure or cardiac problems.It
will be an open colostomy, the dr will use this technique so he sees all instead of a scope.
Better to suture so there's no leakage as infection could set in. There's a strength with
this surgeon. He makes me feel secure in his ability to operate on my child. He did Bruces
muscle biopsy.We have been preparing Bruce for this and I must say...he is ready. It's a
roller coaster for him. I do not lie but slowly explain all to him, the pic line,
nasogastric tube,drainage tubes, and catheter, the bag and the number of bowel movements he
would have until his body readjusts and other complications that could set in. We have looked
at pictures. He will have a scar down his belly but the surgeon said it would be a thin one.
Our days are filled with family and doing as much as Bruce wants to do. He was so excited to have Katie's birthday early so he could be apart of it... My daughter will be 14 on the 31st
of March. I just put her high school courses in. I can't believe how fast it has gone. We
celebrated her birthday on St. Patricks Day. We didn't know what would happen in
between...everything is on standby. She is a gracious young lady who for days didn't know what
to do with herself when knowing what her brother is up against..so healing even before this
event is needed. Even though I have become quiet...it is for my family. It is a reflection of
what has come and what is to come. It's hard to prepare for this and there is no way really
but to have faith and know within your heart that you have done everything you possibly can to help your child and your family. This will be the hardest journey for Bruce and our family. There is change...there's always change but this will bring hope. Hope for a better life for Bruce. It's got to be.
My focus is my family...but when I'm by myself, it's quiet, silence. Someone once told me, if you listen to the silence it talks back to you...and it's true. That calm before a storm let's you prepare for what's coming. Silence helps you to think things through, it makes you listen to your thoughts and put your focus on where it's needed. Everybody in our house needs that extra attention at different times right now...and it's given. In doing this I have found my own calm.
