Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Wednesday, October 17, 2012

Bag Change Time!

  ostomy = short for ileostomy or colostomy          Stella = the name of my ileostomy stoma  

Today I did my first at-home ileostomy bag change on my own.  I'd planned on doing it a lot sooner, but it kept getting put off for various reasons.  First because I wanted to wait until I got the JP drain removed so that when I did change my bag, I could take advantage of the opportunity to take a shower with nothing attached to me.  Once I did get the drain removed, the doc said I had to wait until the following evening to shower.  Then that next evening is when I had my really painful gas episode (see previous post), and by the end of it I was totally drained, sore, and drugged up, and I didn't have the energy to attempt a shower and bag change.  So I finally got around to it this morning.  In this post I'm just going to describe the bag change process in detail so that anyone who is expecting (or considering) an ostomy of some sort knows what's involved in the process.

First, you're supposed to change your bag every 4-5 days, which is the most common.  Some people change every three days, and others push it out to once a week.  All are acceptable; it just comes down to personal preference.  The longer you leave your bag on, the more worn it gets, which  increases your chances of leaks and makes emptying and cleaning increasingly more difficult.  Because of the circumstances I described above, it had been eight days since my last bag change.

I chose to do it first thing in the morning, before I ate, so that hopefully Stella would be pretty inactive.  There are other strategies people use sometimes to try to slow the output for the bag change, like stuffing your face with about five marshmallows beforehand, which I guess can bring output to a standstill for a while, but I'll wait to try that another time.  When I peeled off the old bag, which took a little effort since it was adhered quite strongly to my belly, the first thing I noticed was the smell.  This was different than the tolerable "baby diaper" smell I get when I empty my bag several times a day... it was more like something rotten.  It went away quickly, though, as I threw the bag away - making sure to save the clip off of it - and used a soft paper towel to wipe off any waste and goo that was on and around my stoma.  As I peered closely at Stella, I noticed two things that concerned me.

You can see the red, irritated skin here, but
the gap does not appear in the photo.
First, there was a very small area of skin along the outer edge of Stella that was red and irritated.  (Sorry about the gross pic.)  I knew that this is always a possibility when skin comes into contact with some of the waste output from the stoma, which contains a lot of digestive juices and is very irritating to skin.  Some of Stella's output must have seeped through the edge of the seal a bit.  I'm guessing this may have happened when I waited too long to change my bag; maybe the seal got a bit weak, but there's really no way to tell.  The other thing I noticed was that along that same edge, there was a tiny gap between my skin and the stoma.  I'm really not sure if this is normal, but it looked kinda gross.  I figured I'd try to take a photo of it before covering it back up with another bag and then ask my ostomy nurse about it when we spoke on the phone.

I hopped in the shower and thoroughly enjoyed a nice, long session of warm water, soap, shampoo, shaving cream, etc.  We're told to let soap and water run over the stoma but not to directly wash it.  It felt a little weird and sore as I moved around in the shower under the water, but I was glad to finally be getting the area nice and clean.  Unfortunately, the plan about doing the bag change and shower at an inactive time didn't work out quite as I'd hoped, and Stella spit up all over me in the shower a few times.  Fortunately, it rinses down the drain easily, and I was grateful at that point for my removable shower-head, LOL.  I had laid down a towel on the bathroom floor in case Stella insisted on "performing" while I was bag-less and drying off, but she was pretty quiet for a bit after I got out of the shower.

After inspecting Stella some more (I never really get a good look at her since she's always covered by the bag) and taking a couple photos, I proceeded with the rest of the bag-change process.  I'd decided to lay out a towel in front of my full-length mirror so I could kneel and see things from both angles as I worked.  Before my shower I'd laid out the supplies I might need:

  1. a garbage bag
  2. a stack of dry paper towels
  3. a couple of wet paper towels
  4. a new adhesive wafer (a.k.a. flange)
  5. a new bag
  6. the measuring sencil (a peice of tagboard with a bunch of different-sized holes in it)
  7. a tube of adhesive glue
  8. a bottle of adhesive powder
  9. a skin prep protective wipe

The first thing I did was tuck the edge of the garbage bag into my panties so that anything that came out of Stella dropped right into the bag instead of on me and the floor.  I was glad I did this, because she continued to be a little active throughout the process - I kept having to use the dry paper towels to wipe up the little dribbles that came out.  Then I used the stencil to measure the size of Stella.  Since stomas continue to unswell and shrink over the first six weeks, it's important to measure each time in order to ensure a proper fit.  If there is a gap between the edge of the adhesive wafer hole and the stoma itself, leaving exposed skin to come into contact with waste inside the bag, the digestive juices will actually start digesting the exposed skin and cause irritation and even open wounds.  I knew that leaving the hospital, Stella was 1 and 1/8 of an inch, so I put that sized stencil hole around her, and it still fit perfectly with no exposed skin - she hadn't shrunk at all yet.  Good - that means my wafers are still the right size.

Next I used the moist paper towel to thoroughly wipe and clean Stella and the skin around her.  I let that air dry for a minute, and then I used the skin prep protective wipe to swab the area of irritated skin.  This just provides a thin layer of protection on the inflamed skin in order to prevent further irritation.  If I'd had no irritation, I wouldn't have needed it.  My ostomy nurse had told me that the adhesive powder was to be used only in case of any open wounds or sores to protect them from the sticky backing of the wafer.  I didn't have an open wound really, but I was concerned about that tiny gap between the skin and the stoma, which was like an open wound.  So I squirted some powder directly on it and blew a little to get rid of any extra powder.  (It does actually "squirt" out of the bottle in a very tiny stream so that you can be quite accurate on small areas.)  This worked well - there was just a good layer of powder left sticking to the gap.

I unwrapped the new wafer, taking off the first protective backing.  At this point, if I had been having any problems with leakage, then I could have used the tube of adhesive glue to squirt a tiny ring of glue around the inside edge of the back of the hole on the wafer before I placed it on me to create a stronger seal.  Since I think that little irritated skin was a fluke from going too long between changes, I decided not to use the glue this time.  I carefully placed the hole of the wafer around my stoma, making sure there was no exposed skin, and I pressed the adhesive ring into place on all sides.  At this point if there WAS exposed skin (wafer fits aren't always perfect), then I would have made sure that the hole was butted up against the bottom of my stoma so that the exposed skin was along the top edge, and then I could dab some of the adhesive glue on the exposed part since it also can act as a barrier for this purpose.  But again, I didn't need it.  So I took the new bag and snapped it into place by pressing around all the edges - kind of like a tough ziplock.  I placed my old clip at the end of the bag to seal it off in case Stella started spewing.  Then I took the second strip of protective backing off of the thin, flexible layer of tape-like adhesive that surrounds the firm adhesive ring on the wafer, and pressed it firmly into place.

There - all done!   I checked out my handiwork and noticed that the corner of the flexible adhesive "tape" is almost going into my belly button, so I made a mental note to pay attention to the placement of that next time, maybe angling it a little differently, but other than that, I was happy with the results.  I cleaned up my supplies and mentally patted myself on the back. I think the process will get a lot quicker over time and within a couple more changes, I'll be an old pro at it.


POST SCRIPT - (11/28/12) Additions/changes to the process after a little more practice:
  • I now sometimes have a hair dryer out to help air dry the skin around the stoma in between steps.  Use it on cool/low and from far away in order to not accidentally burn your stoma.
  • I also always use a mini alcohol prep swab to help get the adhesive tape from the old bag off of my skin without hurting or causing more irritation.  You gently pull the tape up with one hand and use the swab to sort of "wipe" your skin off of the tape with the other.  It works great.  I happened to have a bunch of swabs left over from my brief stint with Humira (self-injections), but I'm sure you could buy a box of them at your local pharmacy.
  • As my stoma was shrinking and changing sizes, I switched to moldable wafers, which start small but can be folded back to fit most stoma sizes, which is great when you have a changing stoma or if you are in between sizes.  
  • During the second half of my recovery, I found that whatever I used (pre-cut, moldable, barrier paste, stoma powder), I would end up with output seeping under the edge of my wafer, which causes ulceration (open sores) around my stoma.  I eventually figured out that this is because in the beginning my stoma was so swollen that it never retracted, but now that it wiggles around and retracts flat against my tummy so often (common with loop ileostomies), this action breaks the seal between the stoma and wafer. 
Eakin Seals are moldable and can
fit any stoma size.
  • What I have found to work wonders at really sticking in place and keeping a tight seal even with my finicky stoma is an Eakin Seal.  Within two bag changes, my peristomal ulceration (open sores around the stoma) from output seeping under the wafer had disappeared completely.  
  • I have experimented with different ways to slow/stop output for bag changes.  Applesauce didn't work AT ALL.  Marshmallows only gave me a pretty unpredictable twenty-minute window.  The best one was peanut butter.  I have one or two toaster waffles loaded with peanut butter, and within a half-hour output stops altogether for about two hours.  (I only had two drop-sized "blurps" of output during that two-hour span.)  Wonderful.
  • I do my bag changes standing at the bathroom counter now, with the trash back sitting in the sink and my supplies laid out around it.  If Stella is really spitting up a lot, or if I have to walk around the house bagless for any reason (e.g. to get something I need from the closet) I will still tuck the trash bag into my undies (or just hold a piece of TP over her).

Feel free to leave reactions and comments below...
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  1. UPDATE: I just got off the phone with my ostomy nurse who told me that the gap between my stoma and my skin was nothing to worry about, and she instructed me to do exactly what I had already done, which was to put some stoma powder on it and replace the bag. :-) Excellent!

  2. You are doing an incredible job! Keep it up and keep us posted! ~M

  3. Hey, I was wondering if we could be email friends, I love reading your blog, my email is

    I hope to hear from you soon.


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