Slowing down time between stomaversaries

Yesterday was Wilbur the Stoma’s birthday! I know the past five years since surgery have contained days and days of incredible adventures, but somehow the time has still gone by in a flash. With the sense of normalcy I now have with my stoma, the memories of  those early days are starting to fade.

I love looking back on my blog posts and videos as they help me to connect with who I was in those initial years after surgery, but so much of that time is also a blur. Life sprints ahead when I wish it would meander along in a stroll. It feels like summer was just here, and now the trees are already missing their leaves. Before I know it, I will be celebrating my six-year stomaversary. I want to slow down and savor moments more. Fortunately, I have found a secret for reaching that objective: nature journaling.

I first started nature journaling in the 1990s when my love of keeping diaries and passion for sketching merged and forever changed my relationship with nature. In my journals, I could playfully record natural happenings, curiously ponder what I was witnessing and write down my feelings about it all. At the end of a journaling session, a moment in nature and in my life had been noticed and preserved on the page (and in my memory)! Through my journals, I felt more connected to the natural world and to my soul.

The problem was, despite my best intentions, there were huge chunks of time over the years when I didn’t write or draw in my journals.  My post-surgery years were one of those stretches. What the birds, trees and flowers were doing during those moments I cannot say. And that made me sad.

I don’t get along well with unhappiness, so I am in the process of purging other things from my schedule in order to have more personal time to journal. As small details in the lives of box elders, woodpeckers, praying mantises and other flora and fauna are noted on paper, the hectic pace of my own life slows down and feels richer. Over the past two years, I have filled half the pages in a large sketchbook. That is a big improvement from when my nature journal sat mostly untouched after surgery, but I can do better. I aim to fill the second half of that journal in the next few months.

Mantis sketch

To further build my journaling skills, I attended a three-day workshop in the Marin Headlands of California last weekend with two of my favorite nature journalists, John Muir Laws and Clare Walker Leslie. The experience was beyond-words inspiring. We greeted the birds with our sketchbooks at sunrise, explored the coastline with pens in hand in the afternoon and captured the sunset on our pages. After a short break for dinner, we drew taxidermy mounts in the conference center’s teaching lab until bedtime.  At one point during the trip, I spent an entire hour sketching scat, tracks and other signs left by otters in their travel corridor between a pond and canal. Observing and recording the natural world that keenly for three days straight was remarkable and allowed me to slow down and ground myself in the present. Refreshed and inspirited, I left the workshop with a goal of writing and drawing in my nature journal more frequently.

Journaling on the coast

Otter trail sketch

One of the ideas that resonated most strongly for me was Clare Walker Leslie’s practice of recording daily “small wonders.”  When I didn’t have time to create an entire journal page of nature observations, simply documenting one exceptional image from the day could help connect me with what was happening in the natural world. Whenever I needed to recall those moments, they would be there waiting for me in the pages. I started my first series of these this week, and I am hooked.

Daily sketches

Time can’t actually slow down, and the 365 days until my next stomaversary will come and go whether or not I nature journal. However, closely observing and recording happenings in the natural world  helps each day to stand out. It’s hard for life to be a blur when you are looking with focused eyes. I might record tracks in the snow after winter’s first blizzard, the first blooms of spring, a spotted fawn in the tall summer grass and all the things that make the world so breathtakingly beautiful. Five years ago surgery gave me a second chance at life. It’s time I start paying greater attention.

“Ten times a day something happens to me like this – some strengthening throb of amazement – some good sweet empathic ping and swell. This is the first, the wildest and the wisest thing I know: that the soul exists and is built entirely out of attentiveness.”

~ Mary Oliver

Nature journaling

 

Marshmallows and paper towel hats: tips for anytime appliance changes

The main room of our condo during a recent vacation with Doug’s parents looked a bit like an outdoor gear store. Snowboards and skis of all sorts lined the wall and a plethora of boots sat in front of the fireplace. Closets, dressers and duffel bags overflowed with Capilene, fleece and Gore-tex clothing. During a week in the mountains near Winter Park, Colorado, we took part in two days of biathlon racing, and one day each of skate skiing, snowboarding and telemark skiing. I also managed to squeeze in some hiking and sketching in my nature journal in Rocky Mountain National Park. With so many activities on the schedule–some of which required an early start–it was hard to know when to fit in my appliance changes.

Our vacation included to days of biathlon racing.
Our vacation included two days of biathlon racing. I would rather change my appliance after dinner and face the biggest volcano of ostomy output than get up at 4 a.m. to change my appliance before a race.
I also put on my telemark skis after not using them for eight years (and then could barely walk for the next week.) I am trying to relearn this skill so I can use my tele skills to get out to some Colorado ski huts next winter. Stay tuned for a post in 2016 about changing your appliance in a communal ski hut.
I also put on my telemark skis after not using them for eight years (and then could barely walk for the next week.) I am trying to relearn this skill so I can use it to take trips to Colorado ski huts next winter. Stay tuned for a post in 2016 about changing your appliance in a communal ski hut.
Since I could barely walk after my day of telemark skiing, I opted to sit down and sketch in my nature journal for one day of the trip.
Since I could barely walk after my day of tele skiing, I opted to sit down and sketch in my nature journal for one day during the trip.
My snowboard was feeling left out, so I took it out for one day on the slopes. My legs were so tired from days of non-stop winter sports, that I completely lost the ability to make my board turn after a few runs. Note to self-- sliding down the entire front side of the Winter Park Resort on your heel edge is not much fun. Best to take a rest day instead.
My snowboard was feeling left out, so I took it out for one day on the slopes. My legs were so tired from days of non-stop winter sports, that I completely lost the ability to make my board turn after a few runs. Note to self– sliding down the entire front side of the Winter Park Resort on your heel edge is not much fun. Best to take a rest day instead.

Unfortunately, appliance changes aren’t that quick for me. Due to pretty acidic ileostomy output, I have to protect my skin with several layers of products. Stoma powder, skin prep, Duoderm, Eakin Seals and paste–I use them all. My changes usually take at least 30 minutes–sometimes longer.  Even when I use all those products, my output chomps through them like a piranha if I try to go longer than three or four days, and I end up with very raw and painful skin.

The the saying "simple is better" does not apply to my appliance changes. I need a lot of layers of products to protect my skin. Putting on all this stuff takes a lot of time and gives my stoma ample chances to expel output everywhere.
The saying “simple is better” does not apply to my appliance changes. I need a lot of layers of products to protect my skin. Putting on all this stuff takes a lot of time and gives my stoma ample chances to expel output everywhere.

Those with an ileostomy know that it can be pretty hard (if not impossible) to find even a short chunk of time when your stoma isn’t pooping. Usually I try to change my appliance in the morning as that is when my stoma is the most quiet. However, on a busy ski vacation (or any time with a full schedule) that plan doesn’t always work. If I already have to wake up at 5 a.m. to make it to a race on time or catch first tracks in powder, it is hard to get up even earlier to fit in an appliance change. Also, I don’t like worrying about when I am eating and how it will impact my appliance swap. If I want to head out to a restaurant for a post-ski meal later in the evening, I go for it even if I know it will be harder to change in the morning due to the extra output. In some cases I will even switch out appliances in the evening right after a big dinner (gulp!) if that is the best way to fit it into my schedule.

If you are wondering if I have a particularly quiet and cooperative stoma, the answer is no. My stoma is a non-stop workhorse and churns out output 24/7.  Fortunately, I have some tricks that allow me to change at any time of the day even when my stoma is active.

Trick number one: Marshmallows
My stoma nurse first let me in on this little secret. If I eat four to six regular-sized marshmallows about 15 minutes before a change, my stoma will usually stop outputting for about 30 minutes–just enough time to finish getting my appliance on.  I can’t make any promises that it will work for you, but I recommend giving it a try. It is the only time you will get to eat marshmallows for health reasons. I have no idea why the very first individual to discover this trick was dining on marshmallows right before changing their appliance, but I sure am thankful for their sweet tooth!

This photo isn't from our winter vacation but does show my love for marshmallows. They are best over a campfire, but I will happily eat them cold before a 5 a.m. appliance change.
This photo isn’t from our winter vacation but does show my love for marshmallows. They are most delicious when toasted over a campfire, but I will happily eat them cold before an early morning appliance change.

Trick number two: Make a hat for your stoma
When I first got my ostomy, I absolutely dreaded changes. They were tear-filled endeavors wrought with frustration because I couldn’t get my barrier ring and wafer on without my stoma pooping all over the place and ruining the adhesives. I turned to the internet for ideas to solve this problem and discovered a post on a forum that suggested wrapping the tip of my stoma with a strip of paper towel. I gave it a try and couldn’t believe how well it worked! Plus I liked that it made my stoma look like it was wearing a cute hat.

Four years later, and I still use this method during every single change. As my stoma chugs out stool, the little hat fills up. When it has reached maximum carrying capacity, I simply pop it off, toss it in the trash can next to me, and wrap on another. Along with collecting output, the stoma hat frees up my hands to put on powder, barrier film, and all the other products that I use to protect my parastomal skin. It also keeps the base of my stoma dry as it absorbs some of the moisture from the mucous membrane.

This little trick allows me to change whenever I need to as it doesn’t matter if my stoma releases output; the hat is always there to catch it. Occasionally, if my output is profuse and watery during a change, the technique doesn’t work as well. However it is better than nothing, and if my output is watery, sometimes gulping down a few extra marshmallows will temporarily slow down the flow until I can finish the change.

I realize that making a hat for a flush stoma won’t work very well, so this trick works best if your ostomy protrudes from your belly a bit.

The only supplies needed for a stoma hat are one-inch-wide strips of paper towel.
The only supplies needed for a stoma hat are one-inch-wide strips of paper towel.
JWilbur my stoma models a poo-catching paper towel hat. To make one, simply wind the paper towel strip around the top of our stoma and you are set to go.
My stoma, Wilbur, models a stylish poo-catching paper towel hat. To make one, simply wind the paper towel strip around the top of your stoma and you are set to go.
It is easy to slid your wafer right over the stoma when it is wearing a hat. Note that under the wafer, I have already put on my Eakin ring and other materials.
It is easy to slide your wafer right over the stoma when it is wearing a hat. Note that under the wafer, I have already put on my Eakin ring and other materials. If you are using a one-piece appliance, you can still use the hat method. Just pop the hat off right before you put your appliance over your stoma.
All pouched up with no mess at all. For those who are wondering about the tape job, I love Convatec wafers but the tape irritates my skin. I cut it off and add my own strips of Medipore tape.
All pouched up with no mess at all. For those who are wondering about the tape job, I love Convatec Durahesive wafers, but the tape irritates my skin. I cut it off and add my own strips of  3M Medipore tape. This combo adheres well through showering, swimming, and all sorts of sweat-inducing sports.

If you feel your ostomy controls your life and confines you to a certain schedule, keep searching and experimenting to find solutions. I’d never have guessed that something as simple as marshmallows and paper towel “hats” would give me the freedom to live with my ostomy on my terms rather than the whims of my stoma.

Three years!

When I woke up this morning, I wasn’t sure how to celebrate my 3-year stomaversary.  As I made breakfast, I tossed around some ideas. I thought about going to Zumba like I usually did on Friday evenings but it didn’t feel like it honored the specialness of the day enough. I considered taking a sketching excursion, but I really wanted to do something active. Soon the ideal activity popped into my head: I would go on a trail run! Though I recently started running again after a year-long hiatus due to hip woes, I hadn’t yet been off the road. I quickly formulated a plan in my head. After work I would stop at a local park and do my favorite trail running loop and then I would meet Doug in town for a celebratory dinner.

When I climb, I am only thinking about the rock in front of me. When I do yoga, I am focused on my breath. Running is one activity where I can let my mind travel on a whim. On the anniversary of my ostomy, I really wanted to have a chance to contemplate the positive impact that Wilbur the stoma has had on my life. A long run through the gorgeous landscape would provide the perfect opportunity to do that.

Contemplating the amazing journey from illness to health as I take a break on my trail run.
Contemplating the amazing journey from illness to health as I take a break on my trail run.

Sometimes I ask myself why it is so important for me to celebrate my ostomy surgery date. I am sure if I had elbow surgery I might note the anniversary as it approached each year, but I don’t know that I would feel the need to set aside time to reflect on the experience and do something special to commemorate it.

When I was in the hospital for 16 days with my final UC flare, many doctors and nurses passed through my room and I had a lot of great conversations about my desire to have permanent ileostomy surgery. There were so many varying thoughts and opinions on the matter. I remember several individuals commenting on the fact that, at age 38, I was awfully young to be considering a permanent ileostomy. Why wouldn’t I want to give the biologics a longer try? If I really wanted surgery, why not at least try a j-pouch? Was I sure I wanted to wear an ostomy pouch for the rest of my life?

Trying to justify my choice to others was extremely difficult. I remember having a heartfelt conversation with my GI doctor and IBD nurse about the things I valued in life and why I thought the ileostomy was the best choice for me. My reasons were often hard to put into words, but inside my heart was screaming. I just want my life back!

My life. The one that included hanging out with my hubby in the mountains and on rock faces. The one that wanted to be able to enjoy a fun dinner out with family and friends without UC food worries. The one that included teaching others about nature out on the trails in my job as a naturalist. I saw the permanent ileostomy as the fastest, least complicated and most predictable way of getting back to the things I loved the most. I never felt that I was too young for surgery. Instead, I felt that I was too young to not take a difficult but important step to get my quality of life back.

So every year, on November 8th, I feel the profound desire to reflect on and celebrate that big decision. It isn’t only a time to honor all of the amazing things I have done in the past three years and my renewed health — it is a celebration of my ability to listen to my heart and follow the treatment path that I felt was right for me.

Happy birthday Wilbur the stoma!

Feasting on Thai food post-run.
Feasting on Thai food post-run.

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!

Using Duoderm to protect peristomal skin

What’s a mountain girl to write about when my hip injury is keeping me from the slopes and summits? Skin care, of course! After all, taking care of your peristomal skin is of utmost importance. It is hard to enjoy outdoor sports if your skin is irritated and painful or if your appliance won’t stick to weepy, damaged areas.

My stoma is fairly long at 1.5″and doesn’t have the best posture. It flops downward and a bit to the right — especially under the weight of my clothing and pouch. This actually  works great because my output goes toward the bottom of my pouch which helps prevent leaks. On the downside, the area of skin just under my stoma sometimes gets irritated because stool tends to collect in that spot. Also, as my stoma flops down, it compresses my Eakin barrier ring in that area and causes it to erode more quickly. Fortunately, I discovered a great solution to this problem soon after surgery thanks to the help of my home health nurse.

When I don't protect the skin underneath the area where my stoma flops over, I get a strip of irritation.
When I don’t protect the skin underneath the area where my stoma flops over, I get a strip of irritation.

There was a six-week time period after my surgery during which I had a complication with my mid-line abdominal incision (due to a rare reaction to sutures). I ended up having to leave the wound open for healing with the help of a wound vac. While this was certainly a disappointment at the time, the situation also held a hidden blessing. Every other day, a home health nurse would come and change the sponge dressing for my wound vac. In order to do this, my ostomy wafer had to be removed and replaced each time. Along with being a wound vac guru, my home health nurse also had a great knowledge of ostomy skin care. Having the nurse watch and help me change my appliance so frequently over a period of many weeks provided an amazing opportunity to practice the task and troubleshoot problems. As time progressed, my nurse saw that a sliver of skin under my stoma was consistently raw.  She told me that this would likely become a chronic issue unless I did something to better protect that section of skin. I was already using Eakin barrier rings, so she suggested I add a product called Duoderm Signal to my ostomy system.

Duoderm Signal comes in a 4″ x 4″ sheet and custom-sized pieces can be cut out of it to cover whatever area needs protection. To care for the sliver of skin right under my stoma, I cut a 1/2″ by  1″ comma-shaped piece that contours with the edge of my stoma. When I place it on my skin in the trouble spot, it provides a much needed extra layer of protection. When my Eakin barrier ring erodes a little sooner in that section, my output touches the Duoderm layer instead of my skin.

Duoderm can be placed right on the skin, but it does not adhere well if the area is wet. Therefore, if I get irritation that is weepy,  I must put a layer of stoma powder and skin prep under the Duoderm in order for it to stick. The best way to do this is to use the “crusting” method. First I put a small bit of powder on the sliver of skin that is irritated. I then dab it with 3M Cavillon Skin Prep. Once it dries, I add one more layer of stoma powder and one more layer of Cavillon. I give the area a final dry with a hair dryer on a low setting for a few seconds. Then, I add the strip of Duoderm over the crusted area. Finally, I put my Eakin barrier ring over the Duoderm followed by my wafer.

This method works wonderfully to protect the skin under my stoma. However, I can’t stretch wafer changes longer than four days when using the Duoderm. If I do, the Duoderm will start to peel up from being so close to my wet stoma. Then output starts to seep under it and cause skin breakdown.

If I develop a sore under my stoma, I put a layer of stoma powder just on the tiny sliver of irritated skin. I then dab the powder with Cavilllon skin prep to form a seal over it. Once dry, I add one more layer of stoma powder followed by one more layer of Cavillon skin prep. This forms a "crust" over the sore that the Duoderm can stick to. The stoma powder also helps heal the sore.
If I develop a sore under my stoma, I put a layer of stoma powder just on the tiny sliver of irritated skin. I then dab the powder with Cavilllon skin prep to form a seal over it. Once dry, I add one more layer of stoma powder followed by one more layer of Cavillon skin prep. This forms a “crust” over the sore that the Duoderm can stick to. The stoma powder also helps heal the sore.
A small piece of Duoderm Signal adds another layer of protection for my skin. I put the Duoderm under my Eakin barrier ring. Both of these things then go under my wafer.
A small piece of Duoderm Signal adds another layer of protection for my skin. I place it right on top of the stoma powder/Cavillon skin prep “crust” in the photo above. If I happen to not have a weepy sore and just want to protect the skin, I skip the powder and Cavillon step and place the Duoderm right on my skin.
I place my Eakin barrier ring over the Duoderm. You can see the Duoderm peeking out in this photo.
I place my Eakin barrier ring over the Duoderm. You can see the Duoderm peeking out towards the bottom of the ring in this photo.
The Duoderm and Eakin barrier ring protect the trouble spot beautifully and help me maintain healthy paristomal skin. As long as I put the Duoderm on at every change, I rarely get a sore anymore unless some output happens to seep under the Duoderm. In these cases, the layer of stoma powder and Cavillon mentioned above clears it up by the my next change.
The Duoderm and Eakin barrier ring protect the trouble spot beautifully and help me maintain healthy peristomal skin. As long as I put the Duoderm on at every change, I rarely get a sore anymore unless some output happens to seep under the Duoderm. In these cases, the layers of stoma powder and Cavillon mentioned above clear it up by my next change.

Some people with ostomies are lucky enough to be able to stick their wafer right to their skin with no additional products. Unfortunately, that does not work for me. I need to build up several layers of things in order to maintain healthy skin. As soon as I try going back to more simple methods, my skin suffers. Appliance changes typically take me over 45 minutes if I include the time it takes to set up my materials, remove my old appliance, shower and do all the steps to get my new wafer on well. I never worry about it. It is not a race. Having my appliance off for a little while actually helps my skin get some fresh air. Between eating about five marshmallow prior to my change to slow down my output, and then wrapping paper towel strips around my stoma to catch any stool that might come out as I work, things go fairly smoothly when having my appliance off for that long. Of course there are always those days when my stoma doesn’t cooperate! Still, even with the occasional mishap, taking the extra time needed to better protect the skin around my stoma is worth it. Having happy skin helps me feel good about my ostomy and gives me confidence that my appliance will adhere well through all my adventures.

I do have one more skin care tip that I use which involves using both an Eakin ring and stoma paste, but that will have to wait for a future post!

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.

Two years!

November 8th marked the two-year anniversary of my ileostomy surgery. It had been a hectic week, and I was in the mood for some quiet reflection time. I climbed a mesa near town, took in the scenery, and sketched and wrote in my journal.

As great as it was to quietly contemplate my two-year stoma anniversary on top of the mesa, something more festive was definitely in order. Once I got back home, I threw a little party with Doug, complete with  homemade culinary delights: chicken pesto pizza and a cake decorated like a colon.

Looking back, I am still in awe that it has already been two years. In those initial months after surgery, time crawled by slowly and every bit of my attention was focused on healing and getting used to the changes to my body. I thought of nothing but my ostomy and appliance. Now all those hard times seem to have gone by in a flash. My stoma has become part of me, and large portions of the day go by when I don’t think about it at all. When I do think about it, it is often with a feeling of gratitude. It may sound crazy to say I love my ostomy — but I really do. This day marked a special anniversary, but everyday is a celebration of the health my stoma has given back to me.

Celebrating my two-year surgery anniversary. It is hard to not look at the cake and map out all the areas where I had colon inflammation over the years. I chose the cecum for my first piece of cake. 🙂