Learning to Cope with Ulcerative Colitis.

Yesterday was a big day for Brody.

He had his annual procedure, a colonoscopy, to check out the progress of his ulcerative colitis. If you are not familiar with the disease, you can read a bit about it here. If you have been a long time reader, you’ve been with us since the beginning of his diagnosis, it has been such a roller coaster figuring out this disease.  He has great months, he has bad months.  We really never know the challenges will arise, they truly come out of the blue.

You can play catch up and read all about his diagnosis and the road since –

here. here.  here.  here.

It’s always nerve wrecking going into these procedures, because with colitis, he does not necessarily show physical “outward” symptoms that will allow us to know when he is flaring.  This past year he’s missed a ton of time at school – He’s caught c-diff, he’s had the flu which both had a domino affect into having his relapse.  It takes time, and plenty of medicine to get his body back on track, and is so painful and exhausting for him.

The day before, aka, “prep day” is just plain awful to watch him go through. Anyone who has had a colonoscopy knows that the day before is the worse part of the entire experience.  We had lots and lots of tears, and counting down the minutes until he did not have to consistently drink his medicine to “flush him out”.  OY.

We work with AMAZING doctors through Rainbow Babies, and they are always right by his side.  Yesterday, prior to him getting the procedure went a lot smoother than previous years.  He didn’t cry, he kept such a positive attitude … ugh, it really tugged at my heart.  Just seeing how much older he is getting, and how he’s handling troubling situations differently is a true testament to what a great kid he is.  Of course, we as his parents know this of him, and when doctors and nurses point out how polite and mature he acts just makes me so proud.

He came out of the procedure bright-eyed and dazed, his big blue eyes have always been a show stopper, and the nurses kept telling him he could blink.  I laughed and told them he is always wide-eyed.

After speaking with his doctors, we learned that they found more ulcers.  We really didn’t anticipate anything being found because he has been symptom free since Christmas time.  We were bummed, but we have to await the biopsy to see how mild it is.  They said it appeared mild, and completely night and day to his previous scope.

We are so happy that so far, he does not have to do steroids (thank god!) and they only have to strengthen his current medicine.   We will know more next week with the biopsy results, so until then we just think happy thoughts!

With each passing year Brody is definitely beginning to understand that his belly is different from others around him.  We try our best not to dive too far into the details really – because we have no idea what the future holds for his condition we figure it is best not to borrow any worries and take it day by day.

He was thrilled to get to go home right away (last time our procedure was followed by a week-long stay).  We proudly wheeled sleepy-eyed Brody to the car and got him home.  There are no words to describe the love we have for this boy, and as parents how much we want to protect him and keep him at his absolute best.

We are all learning to cope with his diagnosis.  It plays a role in our daily life, whether he is in good health or poor.  We are constantly advocating for him – and while it is definitely a disease that many do not understand we do our best to keep him feeling his best and as normal as can be.

Raising boys, you hear the word “tough” a lot.  Parents can be so focused on their son being the tough one, in athletics, in groups with peers and such.  We take the tough definition in an entirely different direction.  He has gone through so much these past few years – and always comes out stronger and happier – that is TOUGH.

Yesterday was such an excellent example as to how even as Brody grows older he will handle this diagnosis with great strength, even at 7 years old his spirit and will power is just beyond measure.