Friday, October 4, 2019

October 2019 Update

Remember when my tube broke in June a month after it was placed? The J portion clogged, flipped, and tied itself in a little knot inside my stomach. Well, that happened again in July, and August, and September. We tried three different types of GJ tubes to no avail. Just an over a week ago we tried a special, low profile GJ tube that is supposed to have "anti-kink/flip" technology. We really thought this one would work! It lasted 7 days. SEVEN DAYS before it flipped back into my stomach. 
Let me give a brief explanation of the most common types of feeding tubes real quick:


  • Gastrostomy Feeding (G-tube or peg tube) G-Tubes are surgically inserted with an endoscope. These are a permanent option for patients who can tolerate feeds directly into the stomach, typically placed to bypass the upper digestive tract. The G -Tube is placed directly into the stomach.
  • Gastrostomy-Jejunostomy or GJ-tube (Transgastric-Jejunal or TJ tube) The GJ-Tube is surgically inserted via endoscopy or IR into the stomach but has an attachment that bypasses the stomach down into the jejunum. It is one twube with two ports, giving access to two organs. This allows patients who require decompression of the stomach simultaneously with Jejunal feeds to have only one stoma instead of two separate tube sites.
  • Jejunostomy (or J-tube A laparoscopically placed tube placed directly into the jejunum for feeding. This bypasses the upper digestive tract and the stomach for patients who cannot tolerate feeds directly into the stomach.

Each time these tubes flip, I go days without nutrition. I cannot feed into my stomach due to my gastroparesis. When my the J portion of my GJ flips into the stomach it is essentially like sewing a human's mouth closed. We must wait for a surgical or IR team to be available for replacement. In the meantime, I simply must wait. I typically get very sick during these times. My body shuts down without nutrition. I lose weight, my blood sugar tanks, I become severely dehydrated, my intestines slow to a near halt, etc. After my last tube failed, I was down to 129lbs and ended up in the ER with a blood sugar of 64. 

After four failed GJ tube attempts and weeks of accumulated malnutrition, my doc finally sat me down and had, "the talk." It has been decided that for my health and safety we must place two separate tube sites. This means, instead of one stoma which houses a GJ tube, we will make an incision directly into my intestines during laparoscopic surgery to place a separate tube site just for Jejunual feeding. I will keep the current GJ site, but it will be converted into a G simply used to decompress stomach bile. Two tubes, two stomas - double the drainage, pain, and work. Urg. This will completely remove the issues we've seen in the previous GJ tubes, but does require a more difficult, invasive surgery. I have met with a surgeon at my local hospital who I feel very confident in. He will be placing the J tube via the Witzel Tunnel method to reduce drainage and skin degradation. This surgery will require multiple incisions, reorganizations of my lower GI tract, and a few days inpatient. 

For now, I am stuck with an NJ tube, a long catheter that comes out of my nose and ends in my jejunum for feeding until surgery can be booked. Let's hope it's not too far out as NJ tubes are miserable and cause a myriad of sinus and throat issues. 

I met with my Pulmonologist and Rheumatologist in the past couple of weeks. The bad news is that my lungs are definitely affected by this relapse. I've lost about 10% of my FEV and FVC since my last test in May. This would definitely correlate with the dip in oxygen saturation with physical activity. The good news though, is that the CT scan did not show new or increasing fibrosis in the lungs. MCTD can cause lung and heart damage in many forms, so we are running some other tests to find the cause of this PFT deterioration. 

I started Rituxan in September, and have now successfully completed my first round which involved two infusions. We really won't know for another month or so if the drug seems to be helping not. The infusions went smoothly and my body tolerated them well - I was simply exhausted for a couple days after. With all the recent GI complications and such, I did have to stop working completely. Even part-time was just too much on my body and mind. For now, I am simply focusing on my health and trying to rest up before the big surgery ahead of me. 

Many people inquired about a GoFundMe or other crowdsourced fundraisers during this time. As of now, I am not be starting any fundraisers, however, I do have an Amazon list where I periodically update needed medical supplies my insurance doesn't cover. If you currently see a low amount of items, or nothing, on the list, it is because everything has been fulfilled. I appreciate everyone's contributions so, so much! They ease a great amount of the financial burden on my family and supply me directly with necessary medical equipment.