What a week! (graphic images follow)

Please be forewarned there are graphic picture of a J tube infection in the following post.

Man has it been an exhausting past 10 days!

Last Friday I contacted my Nurse Case Manager because I suspected I was getting an infection around my J tube. The site itself looked okay, a bit more swollen and red compared to usual but looked okay. It felt, however, like I was being burned from the inside out. In addition to that, there was a small amount of pus, and several lumps forming around my stoma. So my Case Manager contacted my GI. He suspected I had cellulitis around my tube, so he wrote for a prescription of a topical antibiotic and said he would try to get me in to his clinic that day. Unfortunately he was unable to.



I contacted him Saturday as the infection had gotten significantly worse. There was a significant amount of pusy discharge, some bleeding, worsening pain. He instructed me to go to the ER for quick access to antibiotics. I arrived at the ER. He had contacted the PA that was tending to me, and together they formulated a plan to dose me with IV Clindamycin (I HATE CLINDA WITH A PASSION), culture my blood (because of my history of endocarditis), the wound, and send me home with a 10 day script for clindamycin.  The decision for Clinda was made due to my history of infections, and the worry that I had developed a resistant staph (MRSA), especially since I have been taking Keflex for about of a month as a post-endocarditis maintenance antibiotic.

IMG_20170603_184220 (1)


By Sunday the pain had improved, but was still having a significant amount of pus and bloody discharge. My GI was able to examine my stoma on Sunday and was able to palpate several abscesses. At that point I think I was teetering on admission, because I was left with “feel the area occasionally, and call me immediately if the abscesses get larger.” As the day went on, I started feeling significantly better with some antibiotics in me.  I even sent a text happily to my mom expressing how the infection was getting better and I could move without pain.


(Sunday Afternoon)

That excitement was short live. Shortly after sending her that message, I was transferring back to my wheelchair and I felt a pop of something coming through my skin. Knowing full well that couldn’t be a good thing, I looked under the gauze and the part of the tube that holds the tube inside the body was now outside of the body (the balloon). screenshot_2017-06-13-21-03-35.png

(text to mom, pardon the language – there were A LOT of F-bombs that night)

I contacted my GI again, and was sent to the ER.


(Sunday Evening -sorry the hand is sort of in the way, was holding the tube in – but the little ball is the balloon and should have much more saline in it than it did)

I arrived at the ER and my GI had already been in contact with the physician attending to me. Who, as an aside, I had worked with a lot in EMS. She removed the broken tube from my stoma. IMG_20170604_233831 (1)

(Stoma with no tube)

My GI instructed her to insert a adult catheter into the stoma to hold it open, inflate the balloon, and send me home. He would contact me to get me set up with a new tube the next day. If she had issues, she was to call him back. She was unable to get a cath into my stoma, so she called my GI back, who then came in to try and fix the issue. I’ve said it in the past, but my GI is by far one of the most compassionate, caring physicians I have ever met. I think very highly of him. He stood by my bedside in the ER at midnight until 2 am trying to fix the tube. He was able to get a peds cath in, but the issue there was that the peds cath has no balloon, so nothing to hold the tube in. He put a guide wire in, removed the cath, and tried for a larger tube. unfortunately the guide wire came out. At this point we decided it was best to just put the peds cath in and call it a night, instead of trying to McGyver something in the middle of the night in an uncontrolled environment. Unfortunately since there was no balloon, I could not be sent home. In fact, I couldn’t even sit up, or use my abdominal muscles without risking losing the tube. They transferred me to his other hospital, and on Tuesday they were able to get a new tube back in! I was sent home Wednesday, and things have been calm since!

The hospital didn’t really have the size tube that we needed, so we settled for one that is a bit too short, but is allowing me to feed while we get the correct size in. There is a lot of risk to this, but we plan on switching it out the end of this week or next week. The risk involved here is that the stoma is new again, so we risk loosing the stoma while trying to change it out. But the risk of leaving this in until the stoma matures, comes with a risk of infection.  Having a history of endocarditis, makes it so that pretty much everything becomes a risk factor for developing endocarditis again. As such, the risk of losing the stoma is much less than the risk of infection. So, here’s hoping for a smooth change!

And that brings us to today! In the 95 degree weather, I had to go out and have my Echo done to check for any lasting damage done by the infection in my heart. Thankfully the cardiologist said he doesn’t think that there will be any, but until I know for certain I will remain anxious! I will update more once I know more about how the test looks!


Lots of love,



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