Been a while

Sorry for not updating sooner but I got really sick leading up to the holidays and have only just started to recover. I guess I’ve learned a couple things over the past few weeks.

1. UC is a marathon not a sprint. My mom told me this and I didn’t really get it. But now that it’s been a full year since my diagnosis, I can see what she is saying. It’s not a disease that gets “fixed” the minute you take a pill- like strep throat. This has been a journey. And it’s really normal for it to take a year to two years to find the right therapeutic medicine management for IBD.

2. It’s not a straight line ever. This is connected to the above but not the exact same thing. I sort of thought once you start to get better, it’s like a slow climb back to 100%….. but IBD isn’t really like that because it’s connected to your overall immune system and your nutrition. And because my symptoms affect my nutrition when I’m flaring, my immune system tanks as a result- my blood labs all go haywire, and I’m already immune suppressed so, I feel like I have had lots of side journeys on my path. Thankfully right now I am feeling much better and with a new doctor who is aggressive and really on top of all the new treatments for IBD…. I  am in good hands and I am making lots of progress.

3. Sometimes the “cure” is worse than the illness. I am one of the few people who had horrific side effects from Rinvoq which has been a miracle drug for many like me with UC. But for me, it caused tons of stomach issues that lead to 8 weeks of nausea with me barely able to eat and keep down food- that led to my nutrition tanking, lost tons of weight, got weak, tired and then caught virus after virus for about 8 weeks. It was honestly so awful. I was really depressed about it. So we  stopped Rinvoq after the 8 week loading dose and I have been feeling overall MUCH better than when I was on it. I guess something to keep in mind is that not all drugs affect people the same way. 

4. Keep on keeping on! We only have guaranteed right now. Everything in me wanted to crawl up in a hole and never come out when I felt awful but I did a lot of my healing when I was finally able to go back to school and at least SEE my friends. It’s so important to be social even if you feel so isolated and sick….. it’s honestly so important to try and find ways to connect with others even if it’s online. 

5. Stress management is everything. Personally my stress decreased drastically once a new doctor told me surgery was not the “next” option for me. I was so worried about that since the early summer when one doctor who was on call when my old doctor was out of town mentioned it but when our new doctor laughed at that statement and showed confidence that there were PLENTY of other strategies to try before that- I was able to really relax for the first time since July. And honestly, my body seems to be responding too!!!! It’s actually been shocking for me to experience how much the mind and stress can affect my personal disease.

Until next month….. hoping for an overall positive direction!!!