Wilbur the stoma gets a biopsy

On Friday I was having some major déjà vu. However, it wasn’t all in my head. I actually was in a place that I had been before: the outpatient surgery pre-op area of the hospital where I had the colonoscopy that led to me being admitted for a 16-day stay for my final severe UC flare in the autumn of 2010. Except for the fact that I wasn’t feeling sick and hadn’t just been through the worst bowel prep of my life, it felt crazily familiar. The same nurse that had checked me in for that colonoscopy over two years ago checked me in on Friday. He even recognized me! That said, that is where the similarities of the visit ended. Unlike last time, I wasn’t in the outpatient surgery area for anything serious and didn’t even need an IV. I was simply there to have Wilbur, my stoma, biopsied.

In March I wrote about some ulcers on my stoma. After an appointment where I brought some stoma photos showing what had been going on, my IBD nurse prescribed a couple of months of Pentasa to try. Since then, we have been patiently waiting for some ulcers to show up so that they could be biopsied to better determine if I was actually dealing with active IBD. It seemed like every time I would get an ulcer, I couldn’t get in for a biopsy because it was the weekend, I was out-of-town, the ulcers would heal too quickly, or my doctor was not available.

Finally, the perfect chance presented itself. Last Thursday night, I was changing my appliance and spotted a big ulcer that had appeared during the day. The next morning I emailed my IBD nurse and she put things in motion to see if my doctor could squeeze me in for a biopsy. However, my doctor wasn’t working in the GI office that day; she was working at the hospital so I would have to see her there. Within a few hours, everything was set up and I drove from work to the hospital, checked in and was soon on a stretcher in a gown reminiscing about how sick I had been last time I was in that situation.

Once things were ready, I was wheeled down to the room where they do colonoscopies and there I saw my GI doctor for the first time since my UC flare 2.5 years ago. I think my GI doctor is one of the greatest, nicest physicians ever, and I was truly happy to see her again under much better health. We caught up for a bit and talked about the biopsy. She explained the procedure and said she would be using the same tool to remove tissue that she did for intestinal biopsies during routine colonoscopies.

I didn’t even have to take off my wafer. We simply snapped off my pouch, cleaned off the stoma a bit and were set to go. My doctor pinched off a half-dozen tissue samples from my stoma with the tool, including the area of the ulcer. We chatted as she worked and she laughed saying how strange it was to be talking to someone while doing an intestinal biopsy because usually the patients are under sedation. It is pretty handy that stomas have no nerve endings. My stoma bled a little when she plucked off the samples, but the whole procedure was pretty uneventful.

My stoma was completely cooperative and the whole process was mess free until the very end. When the nurse had removed my pouch, she sat it on the table. When we were done, she handed it to me to put back on. It was a fresh pouch from that morning, and I had emptied it before heading to the hospital so it was fairly clean, but there was a bit of output in it from the drive and checking in to pre-op. I had fully intended to put on a clean pouch on after the biopsy and had brought with me.  However, when the nurse handed me the  one we had removed I thought Oh… maybe I can just re-use this since it is fairly clean. Big mistake. Trying to put on the half-full pouch while in a reclined position didn’t go so well and I ended up spilling a small amount of output on my belly. It was a little embarrassing, but the doctor and nurses helped me clean up and were so nice about it that it seemed like no big deal at all. I tossed the old pouch, put on a totally clean one and was good to go.

In the days since the biopsy, Wilbur has started to look like he was attacked by a vicious woodpecker. There are small, circular, ulcer-like depressions in every spot where tissue samples were removed. Though the sores are scary to look at, they should heal in a couple of weeks.

On Tuesday I got the results of the biopsy. It showed non-specific inflammation, but no signs of Crohn’s disease or ischemia (lack of blood flow to tissue). We will keep an eye on things for any changes, but the doctor said that such inflammation could be caused by something as basic as mild surface irritation from my pouch.

It is a relief to know that these ulcers are likely harmless and it feels great to have this and so many other concerns resolved as I head into summer. My shoulder avascular necrosis is feeling great with physical therapy, my hip pain appears to be caused by something pretty benign, and my recent Achilles tendon heel tweak hasn’t been hurting when doing my Rainier training hikes. It definitely feels like the dark cloud that has been hovering over me all winter is finally dissipating. I am really hoping that the sunshine sticks around for a while!

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Back to the GI doctor’s office

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 didn't expect to read "for inflammatory bowel disease" on a medication label again!
I didn’t expect to read “for inflammatory bowel disease” on a medication label again.

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.