A Bump in the Road

     Last week, I had a little hiccup on my road to recovery. I had some dull pain just under my ribcage on my left side. I ignored it for a week or so, brushing it off as a sore muscle. Having sore muscles has been a common feeling since surgery. As I increased my activity level, I would have sore spots in my abs, almost as if I had done crunches or sit-ups. They usually passed with time, so I was easily able to ignore this pain. However, this time, the pain did not get better.

     I was actually off of work this entire week (President's day long weekend plus furlough days) and was able to finally sit and relax after two VERY LONG weeks at school! However, my body had some different plans! I started getting a small head cold (either from allergies or just a cold) and the pain started to intensify. On Tuesday of this week, the pain was so intense that I considered going to the ER (if you know me, I'm not dramatic... it really hurt!). I called my GI to try to get an appointment, but didn't hear back from them by the end of the day. I was able to tough it out and made it through the night (albeit with little sleep). Wednesday morning, I called my PCP to try to get an appointment, but they had no openings. Finally, I decided to go to an urgent care center to make sure I wasn't dying! On the way, my GI's office called and told me they had an appointment Thursday morning. I told them that I was on my way to urgent care, so they asked me to follow up and send any bloodwork that they did over the my GI's office. I decided to keep the appointment with my GI and continue on to the urgent care as well. 

     The urgent care doctor came to the conclusion that my spleen is enlarged and that is what is causing the pain. He drew blood and did a CBC (complete blood count?) to rule out any sort of infection. The CBC came back normal, so he told me to take some pain medication and follow up with the GI in the morning. They also told me that if I started getting a fever, chills, or the pain got unbearable, that I should go to the ER. However, he didn't seem worried about that.

    Thursday morning I went to my GI (who squeezed me in between colonoscopies - this is the 2nd time he's done this in the last year... I really like him!) who also felt that my spleen was enlarged. He agreed that the bloodwork looked OK and decided to set me up with a CT scan for Friday morning to try to find out why the spleen is enlarged. He also mentioned that I could possibly have kidney stones, but I don't think the pain is that intense or in the right location. 

      The CT scan was an interesting experience. I had to go the day before to pick up some oral contrast to drink. They gave me to bottles of barium contrast. I was supposed to drink one at 10pm the night before and the other one the next morning on my way to the office. However, I asked the radiologist about drinking both since I have an ileostomy. She said that it was unnecessary, since my transit time is so much quicker than someone with a colon (suckers!). So, I only had to drink one bottle of the contrast on my way to the appointment :) It was not very pleasant, but not quite as bad as the prep I have had to drink before my colonoscopies. Yuck!

    At the office, they had me change into scrubs and started an IV. Then they took a quick X-ray in the CT machine. The actual scans took no time at all. I have had 2 MRIs and those each took around 45 minutes to an hour. The CT probably took only 30 seconds total to take all the pictures. The whole process took around 20 minutes top! Pretty amazing how quickly they can conduct these tests!

     The weirdest part of the whole thing was the IV contrast. They took one scan without the contrast, then inject the contrast and take another scan. When the contrast enters your body, it gives you a very overwhelming warm feeling. I read somewhere that it feels like you drank a hot cup of coffee in one gulp. This was pretty accurate. Also, the radiologist warned me that it might feel like I'm urinating once the contrast is injected (strange right!), but I didn't really feel this. 

    The coolest part about the scan is that the radiologist gave me a CD of my scan. She will write a report and send to my doctor with the results, but she gave me the scans in case my GI or surgeon want to see them. Also, I can look at them at home, which is so fascinating to me! 

Here is a video of the scan. I was lying on my back so the bottom is my back and the top is my chest. Also, my right side is on the left and my left side is on the right. It starts around the bottom of my lungs (the black things) and the base of my heart, then progresses down my abdomen toward my pelvis. You can also see my ileostomy around 00:16. Pretty cool, huh!

Here is another view that goes from the base of the table up through my body (from back to front) at a different angle. It's not quite as clear, but still really cool!

Bag Change Pictures (graphic images!)

I decided that I wanted to record an account of me changing my bag at least once before I get rid of it! I figured it could be a good memory for me (yeah right!) and a possible help to anyone who is going through the same surgery. While I was preparing for surgery, watching these videos really helped me know what to expect, what questions to ask, and helped desensitize me to the "ick-factor" involved with an ileostomy. By the time surgery came around, I had watched just about every ostomy video available on the internet and felt relatively prepared to tackle my own ileostomy.
The video that I took ended up not being great quality. The sound is very hard to hear since my bathroom fan was running and I was talking very quietly (first thing in the morning with a cold!). So, instead of posting the video, I extracted some stills that will hopefully show the process a little better. At some point, I may try to record again with better video/audio quality. Seeing video is much better than pictures! I also edited out any "output" from the shots, but you can see my stoma through most of the video. If you are squeamish and don't wish to see it, then don't scroll down :)

Before starting the bag change, I typically gather all my supplies on my counter in my bathroom (see previous bag change post). Occasionally, I don't have everything I need which results in a trip across the hall with my stoma hanging out!

First, I place a plastic grocery bag in my pants to both catch any output from my stoma (occasionally happens) and to use as a trash bag while changing the pouch.

Next I check my bag and skin barrier to make sure they fit together correctly. I use Hollister bags with the "Lock 'n Roll" closure. I have found that there is a small bit of extra material on the end of the pouch closure tail. I usually take a pair of scissors and carefully remove the extra flap. This helps make emptying the bag much easier and much cleaner!

Next, I close the bag and make sure that the bag and the skin barrier attach together correctly. I've never had one that didn't fit, but I always make sure!

Then, I take some small curved scissors and cut out the opening where my stoma will go in the skin barrier. I cut just outside the 1 inch line and this fits my stoma very nicely. After I cut the hole for the stoma, I typically take my index finger and rub it on the inside of the hole I just cut. The warmth from my hand does a nice job in smoothing out the cut surface and gets rid of any rough edges.

Once I cut out the opening, I begin the process of taking the pouch off. I start by pulling up the tape border on the very edge of the skin barrier. Once this is done, I peel the entire barrier off from top to bottom.

Next up, I use 4X4 Gauze that I've wet with warm water to clean off any output on my stoma and the surrounding skin. I also do my best to get any left over adhesive off using the gauze

TA DA! Here's Johnny!

After cleaning the stoma and skin, I usually check the fit of my skin barrier around the stoma. This used to be more important when my stoma was still changing size. However, it has stayed the same size for a few weeks, so now I'm fairly certain it will fit on the first try.

Next, I spend a good bit of time shaving the area around my stoma. I usually start with a regular razor, then use electric clippers to get closer to the stoma (sometimes I even use tweasers to get any stray hairs). My belly is VERY hairy, so if I didn't shave, there would be no chance for the skin barrier to adhere to my skin.

Once my skin is shaved and clean, I prepare the skin barrier (some people call it a wafer as well). I remove the plastic backing and pipe out a ring of paste around the opening in the skin barrier. This is not really paste, but is like caulking that helps fill in any gaps in your skin near the stoma. This way, there is no leakage of output onto my skin. 

After there is a nice "bead of caulk," I usually wet my finger with water and mold the paste around to flatten it out and fix and spots that were messed up. It is normally VERY sticky, but the water helps make sure it doesn't stick to my fingers. If one side ends up being thicker than the other, that is usually the side that ends up on the bottom side of my stoma, since that is the most likely place to have a leak.

Next, I set the skin barrier aside so the paste can set for a few minutes. While it is drying, I prepare the skin around my stoma. I use stoma powder layered with a skin prep wipe. The stoma powder removes any moisture from "weepy" or raw skin and the skin prep creates a film over my skin to reduce irritation from the adhesive or any output that may leak. I usually do two layers of each (powder, wipe, powder, wipe) always making sure to get rid of extra powder and making sure the skin prep has dried before moving on. 

Next, it is time to put on the skin barrier. If my stoma is not very active, I usually do the next few steps all in a row. I place the skin barrier over my stoma, remove the paper backing from the edges of the barrier, and then put the bag on. 

Always press around the inside of the plastic flange ring
to make sure you have a good seal.

Removing the paper backing.

While putting my bag on I usually fold it in half while pressing the flanges together. This is to make sure that no output, stoma powder, paste, or skin barrier gets on the bag. If any of this drips onto the grocery bag, there is potential for this to get on the pouch while clicking it into place. I avoid this by folding it in half and then clicking it into place. 

Lastly, I place my hands over the stoma and new skin barrier to activate the adhesive and make sure there is a good seal. The heat from my hands helps the adhesive stick better and results in a much better seal. I usually only do this for about 30 seconds or so. 

After this, I collect any remaining trash, tie up the grocery bag, and take it out to the trash can (outdoor trashcan!). All together, this all takes about 20-25 minutes for me. I am a perfectionist and I have had good luck with all my pouch changes. I've never had a true leak or "blowout" since surgery (I've had minor leaks just around the stoma, but not bad enough to change the pouch). All of my bag changes have been scheduled and I attribute this to my perfectionist approach to bag changes!

Please let me know if you have any questions about my bag change. I would be more than happy to help!

Say Cheese :)

     Yesterday I went down to Wellstar to have my "pouchogram" at an imaging center near the hospital. This is basically a way to check the integrity of my J-Pouch and ensure that it is safe to proceed with the second surgery in March.

     Upon, getting to the clinic, I filled out the normal paperwork and made sure to mention that I DON'T HAVE A COLON! This is important in a procedure like this, because they have to tailor the procedure to make sure they don't hurt you or damage the pouch. First, they took a few normal x-rays without the barium. I explained my surgery and the fact that I don't have a colon to the x-ray techs and they seemed genuinely interested and wanted to make sure they did things right. 

 Fluoroscopy Machine

    Next, they took me back to a different room. This had a slightly bigger machine with a table. I think this is either called a fluoroscopy machine or dynamic x-ray. It is basically a moving x-ray as opposed to just one single picture. It uses x-rays to get several images very quickly at different angles and positions. One of the techs was filling up a LARGE bag with warm tap water. He pointed to several bottles of the contrast sitting on the counter. The contrast was actually clear! I was thankful for this since I was expecting the nasty, thick, white barium that I have had before (I had to drink it though... not pleasant either way it enters your body, I'm sure!). Also, the techs comforted me saying that they were using much less than they typically would on someone with a colon (suckers!). Also, they used the smallest catheter tip that they had. The techs were VERY nice and responsive. I kept reminding them that I didn't  have a colon, and instead of ignoring this (like I'm sure some medical professionals might do), they listened and made sure they were doing things correctly based on my specific circumstances. Kudos to that crew! It made the whole process a little easier! 

    After getting into a couple of robes and sliding up onto the (hard) table, they inserted the catheter and began to infuse the contrast into my pouch. It was a little painful when they first inserted the catheter and once the contrast began to flow. It felt like my pouch had small spasms when the liquid entered and this was a little uncomfortable. Once enough contrast was in, they made me roll onto my sides and roll around in some very uncomfortable positions (all of this while one of the techs was holding the catheter in my butt... poor guy!). Finally, they removed the catheter and asked me to hold in the contrast. This is the part I was the most worried about! I wasn't sure if I was going to be able to, since I originally did not know how much liquid they would use. Luckily, I had no issues holding it and after a few more pictures, they let me use the restroom to get rid of the contrast. Then, they took a few more x-rays to see how well I got rid of the contrast. 

     Finally, I got dressed and was on my way! Overall, the procedure was not terrible. Certainly not a picnic, but much less terrible than I had pictured it in my head! I tend to create these horrible scenarios in my head. Perhaps, it's because I always look stuff up on the internet. It seems that most of the time, people only post their experiences on the internet when they have BAD experiences. Hopefully, my posts will be refreshing to those who may be going through the same thing and are looking for reassurance. So far, I've had no complications (**knock on wood**) and love sharing my stories!