Monday I found myself in a place that I hadn’t been to for a very long time: my GI doctor’s office. After having permanent ileostomy surgery for my UC, I wasn’t sure if I would ever need to be seen there again. However, for the past ten months, I have had canker sore-like ulcers show up on my stoma off and on in different places. I actually noticed the very first of these ulcers while changing my appliance on a backpacking trip last June. I remember calling for Doug through the woods so he could come snap a photo of it. I think he thought I was being cornered by a bear! (joking)
That ulcer was rather deep, and after showing a photo of it to my surgeon, he thought it might be trauma-related and caused by a nick in my stoma. It healed up in a few weeks, and I thought that was that. However, in the autumn I got a couple more ulcers, and since that time, I have had more of them show up and at more frequent intervals. In fact, I have a new one today. The ulcers heal quickly (sometimes too quickly– it is hard to time an appointment with my doctor when they are actually there) and don’t seem to cause any problems. Because the ulcers are a recurring issue, I shared more photos of them with my surgeon and he suggested I have them further investigated at my GI doctor’s office.
I have an awesome GI doctor, but for much of my life with ulcerative colitis, I worked with an equally amazing IBD nurse practitioner. When you have chronic conditions and end up seeing your doctors and nurses again and again, you can really develop a strong and trusting bond with them. My nurse practitioner is a very caring individual and she has worked with me during my worst UC moments. I hadn’t seen her since I was extremely ill and lying in a hospital bed during my final severe UC flare two and a half years ago. It was great seeing her again under much better health! Of course, last week’s ulcers had conveniently healed just in time for the appointment, so I once again had to rely on photos of the ulcers to explain what was going on. Thank goodness Doug is a stoma portrait photographer extraordinaire and we have been documenting the ulcer activity pictorially for months.
After looking at the photos, my nurse felt that the ulcers could be a sign of active IBD. She didn’t call it Crohn’s disease, but said that the ulcers are likely caused by the same inflammation process involved in IBD in general. She talked about how many different genetic factors are showing up in research related to IBD. What is thought of as Crohn’s or ulcerative colitis could actually be a group of different diseases which makes things hard to pinpoint in some cases. (This is my recollection of what she said anyway… I am not the best at explaining medical stuff from memory.) Regardless of the name, the suggested treatment for me was the same: a low dose of Pentasa to see if it helped resolve the ulcers. If the drug does resolve the ulcers, it would be a sign that I am dealing with IBD. If the ulcers would actually cooperate and show up when I am scheduled for an appointment, I could also get them biopsied to provide a more definitive diagnosis. There is also a possibility that the ulcers could be caused by a virus, but that is less likely due to the recurring nature and how long I have been experiencing them. All in all though, this is a really minor thing. The ulcers seem confined to just my stoma, no other symptoms come with them, and I feel great. My inflammatory markers were fine as well. My nurse said stoma ulcers do happen for many people without progressing up the intestines. That was great news to hear.
When I was sitting in the pharmacy waiting to have the prescription filled, I found myself reflecting on the possibility that my disease was returning– even if only mildly. The weird thing was– I was not worried about it at all. I always thought that finding out my IBD might be back would be terrible news. I would have expected to be scared, disappointed or something along those lines. However, now that I was actually facing that possibility, all I felt was a sense of calm. For someone who has been plagued by anxiety lately, this new found feeling of peace was refreshing.
I really can’t put my finger on the one thing that has led to this new outlook. Be it bones or intestines, I am discovering that I am far less worried about my medical issues lately– so much so that I was able to stop taking anti-anxiety meds over a month ago. I went to see a counselor and also went to some anxiety management group sessions which have helped me look at things in a new way. My mindfulness meditation practice has been important in helping me focus on the present too. The positive thoughts and prayers sent by family and friends have also been paramount. I have also been more in touch with my spiritual side which has brought peace.
Another big source of comfort is knowing that I have been blessed with some of the most incredibly kind and skilled doctors and nurses on the planet. Not a day goes by when I don’t think about how grateful I am that everything somehow came together to have each of these individuals on my healthcare team. I know they truly care about my well-being. I can relax knowing that if things should get worse with any of my health conditions, I am in really good hands.
Overall, if I had to sum up the reason I am feeling so good about things lately in one word it would be this: trust.
I trust that I am strong enough to get through anything. I trust that my family and friends will be there to lean on. I trust that my medical team will do their absolute best to take good care of me. I trust that I will always be able to help others by sharing my experiences. And I trust that whatever path I find myself on, I will make it the best journey possible.