Transitioning Back to Feeds

TMI Warning. This post is gunna be a bit graphic.

After returning home from surgery I noticed my stoma (medical hole that the tube resides in) became very aggravated. It was red, raised, and becoming more painful instead of less. Suddenly, it started oozing thick green puss. It was like a faucet of goop. I would soak the gauze pads made to last a day in 2-3 hours. Over the course of two days the discharge became do bad it would leak down my stomach. I started to become nauseated, flushed, and was completely unable to touch the tube without immense pain. We headed straight to the ER where I was diagnosed with a heavily infected stoma. So puss, thick green puss is what was oozing out of me. Gross. I was placed on round the clock liquid antibiotics through my tube. The next few days were absolute agony. Luckily, after day four of the antibiotics, things began to look up! The discharge came to a near complete halt, the pain subsided, and the stoma looked about one hundred shades less red. Hoping I wont need a second round of antibiotics, but am preparing for that just in case. My docs all agreed the infection was likely a result of being hospitalized right after the tube was placed for my seizures. Urg. Isn't it sad that the hospital is actually less safe than ones home post surgery? So weird. 

I saw my GI doctor for surgical follow up Thursday who was very pleased the infection seemed to be letting up. She explained to me that she spoke to the surgeon who placed the tube and he expressed, "I placed the tube in a very painful, thick part of the stomach. Since it is a GJ tube we wanted the G as close to the bottom of the stomach as possible so the J line would have less a possibility of flipping back into the stomach." So, this explains why I was in so much more pain compared to my first feeding tube surgery in 2014. I was a bit worried about a large slit in the stoma, which no one can really explain. Stomas should be completely round and fit snuggly to the tube. Mine however, is round on one side and completely slit like an arrow on the other. This causes the stoma to be a bit too big. The theories are, I ripped the area while having my seizures post surgery. Another, Urg. We stitched it up and are hoping it will heal correctly. 

The tube I have currently is different than my first tube back in 2014. This tube is a Gastrostomy-Jejunostomy, or GJ tube. This means I have access to both my stomach and Jejunum (small intestines). The tube is placed in the stomach but has an internal attachment that bypasses the stomach and goes deep into the Jejunum. Since my stomach is functioning so poorly, I cannot longer run feeds into it - the G part of this tube is mainly for medication and venting. The J is where I run the formula that feeds me. As the intestines don't expand like the stomach feeds must be run very slowly - I am on continuous feeds to receive enough calories. 

My GI doc is so cute, I came into her office and she goes, "You got a new backpack! Where is your Vera Bradley?!" She remembered the old backpack I used to wear when I had my G tube. lol I just love her! Luckily, right now I can still drink - very slowly. As you know, my esophagus backs up if I try to put too much into it at once. She always recommends her patients occasionally try what she calls, "recreational eating." This essentially means, attempting small bits of food/drink to see what our bodies can/can't handle. With me, that's tricky since my esophagus sucks so hard - so it will really only be soft, non thick foods. Many patients can't "recreationally eat" at all, but some can. It's considered recreational because it is simply that, just for fun - it isn't enough to sustain human life. She said to be smart about it. If something gets lodged or I get super nauseas/bloated or vomit, obviously stop! lol So, hopefully in the future there might be a few things my body can handle for fun - while my tube sustains my nutrition. 

Mentally I am in a much better place than I was two weeks ago. I feel like I am done wallowing. Hallelujah! With this infection almost behind I am starting to feel like me again. I would say I went from coping at about a D+ to a B+ in the last ten or so days. It is for sure a weird and frustrating transition. I ordered all the supplies I need to feel comfortable and confident, organized all my supplies, got down my morning, afternoon, and evening routine, and finally feel less burdened by this device. While it makes life a thousand times trickier, I know it is what is going to keep me alive. Frankly, last month I was starving to death - now I am slowly recovering and receiving the desperately needed nutrition I was devoid of. My blood work is still all out of wack, but that will all recover as my body begins to transition to feeds. Good news, I am back to work - with tube in tow!