Last Friday I had my annual flex sigmoidoscopy to take a look at my J-pouch. After a whole year of doing fantastic and feeling great I went into this appointment a little nervous but very confident. So after two hours of waiting (no fault of my doctor’s but still very annoying) my nerves kept building. Throughout the exam everything was looking great, until the very end when my doctor found a small piece toward the top of the pouch that was a little inflamed with a small ulcer. One ulcer. Upon seeing that my mind started racing and I started freaking out inside but remained calm so my doctor wouldn’t think I was a crazy person. After he took a biopsy and I got my pants back on, I asked him “what could it be?”, “is it Crohn’s?”, “when will the results be back?” After giving me a smile and trying to calm me down a bit he told me that he didn’t know what it was, it could possibly be Crohn’s but he didn’t think so and not to worry (REALLY?!), and that the biopsy results should be back within a week or two.
So since Friday morning I’ve been able to think of nothing else. I’m trying to remain positive, but having that camera up my butt again and seeing an ulcer again has really played mind games with me. It’s brought back that whole flood of emotions that I felt when I was sick with UC and while I was going through my surgeries. The thing I’ve realized is that those emotions and these experiences will never go away. Even if the results come back and it’s not Crohn’s , this is something I’m going to have to go through every year when I have that exam. The nerves beforehand and the praying to God that nothing shows up during the exam. So it makes me think. For those of us who have had J-pouch surgery as a “cure” for UC, is it really a cure? Possibly it is a cure for the actual physical ulcerative colitis (although not always for those who find out after that they really had Crohn’s all along, or the small percentage who have complications after the surgeries). But emotionally, having these surgeries is definitely not a complete cure. It is something that will always be with us. Those emotions, those memories, that fear. I’m not saying I wouldn’t have had the surgeries. Not that I had a choice, but if I had, I still would choose to have them and I would still recommend them to anyone. They saved my life and gave me a better quality of life. For that I’m definitely grateful. I guess I’ve just realized that for most people it doesn’t end once the surgeries are over. It’s a process. Which is why I think it is so important to take care of yourself both physically and psychologically, during the illness as well as after. I think it’s also the reason I’m so passionate about counseling people with IBD…because I GET IT. And you can’t get all the emotions and fears unless you’ve been through it. So for now, I’m going to do some of the things I tell my clients to do…try and remain positive, deal with my emotions, and since I’m feeling good, enjoy life…and pray that the ulcer is nothing.
You hit on the fear that I think every person with UC has..... is it really Crohns? That is always been our fear and we are still so new to the process. I don't believe the pouch is a "cure" persay although it gets rid of the colitis symptoms. But if you are one of the people with the extraintestinal manifestations of UC, those do not go away. I've noticed that they are milder and less frequent, but still there. My daughter has joint problems in her hips, knees, and ankles. Good luck on the results....I'm going to be optimistic and believe it will be good news especially since you have done so well for the last year. :)
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