Saturday, June 4, 2011

Another Thing They Won't Tell You....

.....But They Probably Should!

Yes,'s another installment of things they really should tell you at the hospital, or in the patient education materials, so that you won't think you are broken or otherwise slowly dieing when said things inevitably start happening to your person. Let's take it from the top:

Friday morning I finished my run and had a little lunch. I was hanging out with the baby when I felt a weird, kind of itchy, sensation in the area of my wafer. I knew before I even looked what I was going to find. Yep, there it was. A tiny bubble at the edge of the tape with brown yuck peeking out from under it. I'd lost my seal and had no idea why. I had plans to change things out that afternoon while the baby napped, but it looked like I was not going to be able to wait. I plopped the baby in the hallway outside the bouncer in his baby jail...err, exersaucer thingie and got my supplies and things ready for my shower. (Note: said baby screamed his adorable little head off the entire time I was engaged in this process! Eep!)

Once I removed the old pouch, I could see that the top half of the barrier ring was basically gone. I was pondering this and it got me to analyzing the events of the night before. We had gone to dinner with both boys. I ordered a half chicken cobb salad and some soup. The kids were acting a bit crazy, and I found myself attempting to hurry through my meal so we could get out of there. Rule #1: ostomy folk CAN NOT rush through a meal. Ever. I know better than this, so don't ask me what I was thinking. Next time I will just get a to go container and take the stuff home so I can eat at my own pace. At any rate, I woke up at about 3:00 a.m. with some pretty serious gut pain and a suspiciously empty bag. My first thought was a partial blockage. I got up, went to the bathroom, and found the bag wasn't completely empty, but just a little liquid was in there. I did what I was supposed to do and drank some warm water and massaged the area around the stoma for a little while. That seemed to get things moving again and the pain subsided a little bit, so I figured I might as well go back to sleep while waiting to see what happened. I woke up in the morning with a full bag and feeling much better and that was the last I thought about the blockage.

As I was thinking all this over and cleaning the area around my stoma, something happened that thoroughly freaked me out. Pedro started moving a bit, and then output started coming from the base of my stoma. I quickly rinsed it away with the shower spray and waited. It happened again, and more this time. It was also coming out of the regular opening, too. I was confused. I just kept washing it away and waiting and getting more and more freaked out when it kept coming back. It quickly became obvious to me that this was the culprit behind my lost seal. When this stuff was coming out right next to my skin, it was forced under the barrier ring and eventually ate it up and oozed it's way right under the tape. What I couldn't figure out was why on earth this was happening. For a minute I wondered if the blockage had forced output up under my skin somehow and now it was oozing out. Then I realized I would probably be in tons of pain if poo was just randomly floating in my body. I then thought maybe the blockage had blown a hole in the side of the stoma or something, but that didn't seem to make sense either. Surely I would have felt something like that happen? I couldn't figure out what was going on, but it seemed like it certainly wasn't a good thing. I decided I was going to call up to Cleveland Clinic after I got pouched back up. I then had all of these awful visions of them telling me I needed to come up there and get a stoma revision. In my head, I practically had myself checked into the hospital and was wondering how many days I would have to stay. I was not a happy camper.

I want to take this opportunity to say that my surgeon's nurse, Marlene, is one of the most awesome medical people on the planet. When I got her on the phone, she asked what was going on and I told her I was freaking out and why. She explained to me what was going on in a way that I could understand and I quickly realized that I was not going to die or need surgery. Hooray! She asked a few questions about the blockage to make sure I knew why it happened and how to prevent it (yes, get a babysitter when I want to go to dinner!) and then a few other general questions just to assess how I was doing. She did not make me feel stupid or crazy for being scared half to death about what had happened. Marlene rocks!

So, what did she say? Well, I'm glad you asked. The type of ileostomy I have is called a loop end ileostomy. So this means they basically fold the intestine in half and cut almost all the way through that fold. You end up with a big hole (which is what I know as my main stoma opening) and then a smaller hole. That smaller hole goes to a small piece of intestine (1 to 3 inches worth, depending) that is "downstream" from the stoma opening. Now, typically this smaller hole doesn't do much except for occasionally secreting some mucus. However, sometimes weirdness can happen like what I experienced if output gets into that small piece of downstream intestine. There are a couple of ways this can happen, but the one that likely applies here is that the blockage, and my massaging to get things moving again, may have forced some output past the stoma opening and into that section. As the intestine does it thing to force the contents out, it comes out of both sections. This is a good thing, unless you don't expect it to happen and it causes a seal loss and potentially loss of your mind!

When I pouched back up, I left a little extra space around there so if it continued to output it would go into the bag and not under the wafer. I will admit I was really nervous about how the seal would hold up for this morning's group training run. To give myself a little peace of mind, I bordered the whole wafer with my Hy-tape (waterproof medical tape). Happily, nothing bad happened. I'm thinking I will change out the appliance tomorrow so I can see how it's holding up and get an idea as to if that section is done doing it's thing. I guess it's more out of curiosity than anything, but I'll feel better if I get a look at it sooner rather than later. I'm also thinking it's time to quit putting off ordering those Sure Seals I've been thinking about. That seems much more secure than the tape I used today.


  1. (Hey, this is elddiremsiht. I decided to get a blogspot blog!)

    Boy oh boy, they really really should tell patients this! Sometimes when that happens, it bypasses the second hole too and works its way all the way out the end. I swear the #1 most common freaked out post we get at healingwell is "I have an ostomy but I just passed some stool rectally, what is going on?!" I just keep telling them, it's okay!

    (Also, am I the only one who has to wrestle with blogspot and type in my email and password and a captcha code 6587687 times before it will post my comments?)

  2. Hey, Rachel! Yes, I'd heard of the "phantom poo" phenomenon....but I'm not hooked up to anything so haven't had to deal with that yet. I imagine after Step 2 that will be one more fun thing going on. Hooray! Haha! Laugh or go crazy, right?

    Going to go check out your blog, too. I'm glad you are doing better. :-)

  3. I can't understand how your guts are configured at all! Between my first two steps I had an end ileo, not a loop.
    Laugh or go crazy indeed - you have a great outlook.

  4. Ok, so what they tell me is that mine is just like a loop except the other side only goes like 1-3 inches rather than what most people have with a loop where it goes clear to the rectum and stuff. I have no idea why they did it that way at all...but he's been doing them forever so I guess there's a reason. I'll be getting a new loop after step 2 and then I'll be connected, too.