Hi Friends!
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| My adorable Bella |
It has been a very long time since I have updated and I apologize for leaving y'all wondering. I know I should've updated sooner, but I had some issues going on and wanted so desperately to have a wonderful update with a victorious ending... but it has become clear I must write an update that doesn't have the ending I was really hoping for. I want to start off with some really happy news before I get into the not-so-great stuff. SO, without further ado.....
I've actually gotten to go to church multiple times! Thanks to our church family who have cut down on the perfumes and oils they wear. It means the world to me when people sacrifice and go out of their way so I can go to church! I'm so excited to actually be able to get out somewhere besides doctors appointments and get to fellowship with God's people!
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| Yeast and acid burn around my G tube. |
Now...for the dreaded news. I've been having severe, deep G tube pain for quite some time now. I went to the GI and he saw a little redness and inflammation at the site so he told me it was the dressing I was putting on it. He said to stop putting anything under the bumper of the tube (disc on the outside that adjusts the tightness of the tube) and start putting a barrier cream on to protect the skin. I knew that wasn't the case, but figured if I wanted help I needed to follow all directions. I complied and things went downhill very fast. I got a horrible case of yeast because of the moisture so I was told to stop the cream. I then got acid burn from the stomach acid leakage that wasn't being prevented by the barrier cream because I had to discontinue it. So I had the acid burn on top of the horrid yeast that hadn't healed PLUS the deep pain I had been having that was only worsening. I was then given a nystatin powder to apply to the tube side to try to heal the yeast. Soon thereafter I developed multiple pressure ulcers from the bumper because I didn't have any dressing underneath to keep it from digging into my stomach. My GI felt that the yeast wasn't improving fast enough and was concerned it may have turn into a bacterial infection that caused the ulcers so he sent me to infectious disease to have it examined. That doctor confirmed it was a bad case of yeast and the ulcers were actually pressure ulcers and not ulcering cellulitis. My GI finally realized that it was indeed best to keep the dressing under the bumper. With the nystatin powder and keeping the site dry with the dressing, the outside issues (that were caused by the effort to fix the inside) cleared up and healed. However, the inside pain was still steadily worsening and getting to the unbearable point. He then deemed it nerve pain and said my only options were to either deal with it, take gabapentin, or have surgery to move the tube. I didn't like any of those options and decided to make another appointment with my GI to see if he could do any more testing to make sure there wasn't something else going on. Well, while I was waiting for that appointment time, the pain reached the excruciating point, my tube site began bleeding, and I was having discharge of tissue around the tube. When I went in to see my GI, he examined the tube and saw what the problem was all along. My stoma (hole for tube) was breaking down and I had ulcers all throughout the stoma. Apparently it was ulcers causing the pain inside and they just worked their way through my stoma until they could actually be seen from the outside. The bleeding and tissue discharge was coming from the ulcers and tissue breakdown. We tried everything my GI and family could think of and it became obvious that my stoma was beyond salvaging. My GI told me that getting a new one placed was really my only option to fix the issue, but told me to take my time to think about it and I knew their number when I was ready. I made the dreaded phone call on Friday morning to tell him I was ready to have it replaced. He called me back that evening and told me to pull my tube out on Saturday morning so the stoma can close by the time he wants me to go in on Tuesday (10:30am) to have a new hole made. He's going to try to place it endoscopically so I don't have to be opened up in surgery which would mean more incisions to heal and just a harder recovery overall. It was really hard to accept another tube surgery. I had my heart set on my J tube surgery being my final tube surgery....I mean, after all, 4 tube surgeries are enough, right?! My GI said that stomas can last a very long time, but sometimes they breakdown and tubes have to be redone in a different place. My sister wanted me to tell my GI there were only so many times you could fail an audition for the Pillsbury Doughboy. ;) I pulled my tube on Saturday morning which was NOT as easy as it could've been. I had to pull a tube that had a malfunctioned balloon that wouldn't deflate all the way. Yeah, OUCH is an understatement! Took me 2 good yanks to get it out, but I did it! :) I am now greatly missing my G tube to drain. Lots of Zofran and Zantac to try to keep the nausea and reflux bearable. He was sure to tell me not to eat anything from the time I pulled my tube to the time I get the new tube placed because he has to open the esophagus and if I had a stomach full of food (because I couldn't drain it) sitting there, it would flow right up into my trachea, causing me to aspirate. It's not very hard not to eat right now seeing as how nausea has kinda overtaken my appetite! ;) One big prayer request... Please pray that this hole will seal up by Tuesday! The ulcers can slow the healing down and I'm at more than 24hrs since I pulled my tube and its still leaking because it isn't completely closed. It HAS to be closed for my GI to place a new tube because he has to pump my stomach full of air and he can't accomplish that if there is a hole in my stomach. So needless to say, I have to reschedule if it doesn't close up on time. I REALLY do NOT want to have to do that... 3 1/2 days with no draining is hard enough as it is and who knows how long it would take to get me back in the schedule. Thanks in advance for your prayers!
I know the Lord has a purpose for these trials and, even though it is far from easy, I know He cares about me. He is doing what is truly best. He is always good. Things He allows in my life don't always (actually rarely) makes sense to me, but that doesn't change the fact that He is ALWAYS good! He loves me. He knows how all this is going to work out. He knew that my stoma wouldn't heal and I would have to have another tube surgery. He knew this would be hard and how heartbroken I would be so He provided courage, strength, and encouragement right when I needed it. He weeps with me and feels my pain. His heart breaks with mine. I don't understand why things have turned out the way they have, but I know He will take excellent care of me! If you are going through a rough patch right now just know the Lord does love you and has a perfect plan for your life. He is with you and feels your pain. He knows what you are going through and will never leave you even though sometimes it feels that way. Give your cares to Him and take comfort in His love. He weeps with you and His heart breaks with yours.
On a happy note...my J tube is still working great! I had a little incident where the balloon on the tube had deflated a little and ended up in the stoma, but that was remedied with a simple tube change to put it back in the right place. That has been some time ago and things are going just fine now. It has been a huge blessing not to have my tube repeatedly coming out of place and having to be changed all the time!
I had a very fun 4th of July! Dressed all festive and watched fireworks over live stream. :) Perfect way for us to see fireworks seeing as how you eliminate the cigarette smoke and perfume of other onlookers, vibration from the fireworks, and you can easily look away if the strobe lights get too much! And your service dog doesn't have a heart attack! ;)
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| Ezra photobombing me ;) |
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| My festive cuties |
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Poor Ezra puts up with
so much "decorating" |
I hope you're having a good day! Enjoy the sunshine! :)
Taking Life One Tube at a Time,
Allison
