First, thank you all for the enormous amount of support after my first article about Colton. My goal with this short series is to raise awareness for Irritable Bowel Disease, a disease that doctors cannot provide a cause for, nor do they have a cure. IBD includes both Crohn’s Disease and Ulcerative Colitis. My first article was about the tough journey that my five year old son, Colton, went through to be diagnosed with Ulcerative Colitis. If you haven’t yet, you can read that article HERE. The diagnosis, while it took nearly a year to figure out, is really just the beginning. Now, we learn to live with UC.
You might be wondering what he has to live with. Well, UC has a host of symptoms that we didn’t really put together until Colton was diagnosed. The obvious symptom was that he uses the bathroom very frequently. We’re talking 10+ times per day. Not only is it frequent but it’s urgent. I always have to tell people, wherever we are, that if Colton says he has to go, he need to go NOW. Luckily, he isn’t embarrassed about it, yet. As he gets older and encounters some people that aren’t as great as is friends are now, he could become embarrassed.
On top of running to the bathroom numerous times each day, Colton is often very tired and pale. He suffers from anemia, due to the significant blood loss he experiences daily and the fact that his little body will not absorb it at all. The low iron causes him to feel very tired, he naps almost daily, and also makes him quite pale most of the time. I know what you’re thinking, give him some spinach or broccoli, or a vitamin. Unfortunately, we’ve tried it all and the only way he gets some relief is a trip into Children’s for an infusion. His growth is also carefully monitored, as side effects also include growth delays and significant weight loss. He’s on the small side but so far he is keeping up with other kids his age.
As a mom, it is so hard to watch your child suffer in any way. It has been hard watching Colton stop what he’s doing to run to bathroom, and stay in there for 15 minutes; or suffer from the severe pains I mentioned in my first article. But, I think the hardest thing to watch is his anxiety growing. When he started down this path it didn’t seem to bother him unless his leg was hurting. Now, every time we get in the car he asks if we’re getting on the highway. He hates the highway because there are rarely any bathrooms. I now have a potty in the back of my car, just in case. He doesn’t want to go out, even to his favorite places (the beach, the arcade, out for ice cream) on days when his belly is bothering him, because he knows he’ll have to use the bathroom. He hates going anywhere new because he doesn’t know where the bathroom will be. I joke that he thinks he still attached to me because he rarely leaves my side, but the reality is that he knows he might need my help in the bathroom, or that at any time he could start feeling lousy.
Once Colton was diagnosed, he was prescribed medication. The meds are anti-inflammatory, and are supposed to decrease the inflammation in his colon. Like any medications, they don’t all work for everyone. Three months into treatment, and Colton’s symptoms were not getting better. His GI changed the dosage and said to come back in the three months. Well, now not only was the medicine not working, Colton was getting worse. I felt like things were spinning out of control. His leg was hurting more frequently, there was more blood when he went to the bathroom and he was really tired all the time. The GI put Colton on a steroid and it was like magic. His symptoms were gone, not more frequent bathroom trips, no more urgency in using the bathroom, no more blood. His leg pain subsided for months. When the steroids were gone, Colton’s symptoms stayed under control, for the most part. At least, I no longer felt like it was out of control.
We still visit the GI regularly and Colton still has flares (days where the Colitis acts up) but for the most part the severe symptoms are dormant. He is still tired, and anemic and using the bathroom more frequently than other 5 year olds, but most days are very manageable. Colton knows that he will have Ulcerative Colitis his entire life and since he really doesn’t know life any differently, he seems okay with the diagnosis. I read a lot and keep up with an online community that will help our family cope over the years as Colton grows up. I hope that his story helps raise some awareness and may help other parents with children suffering from IBD know that they are not alone.
