Thursday, October 24, 2019

Hooray for Farts! J Tube Surgery

On October 16th I arrived at my local hospital at 530am. You would be surprised how many people are at the hospital at this hour. I sure was! lol I was quickly whisked away to pre-op as I was the first surgery of the day. I met with the surgeon, the anesthesiologist, and many nurses. When it was time, 740am to be exact, I was wheeled into the OR. If you have ever been in an OR you know how creepy they are. Typically located down a cold, dark, seemingly forgot hallway of the hospital. The double doors open to a fully tiled floor to ceiling room covered in surgical instruments, with the centerpiece being multiple giant round lights. They make endoscopy rooms look downright cheery! 

Next thing I know, I woke up in my hospital room around 12pm. The surgery went longer than expected, and I was in much more pain than I anticipated.

Click for Image Credit 
Let me give a brief overview od exactly what placing a Witzel Tunnel Jejunostomy entails - in Chanel terms, that is. A Witzel Tunnel is a method of Jejunostomy tube placement, there are 5 or 6 different methods to place a feeding tube into the Jejunum. They all come with their own pros and cons. Needle Catheter, Roux En Y, Straight J, etc. My surgeon prefers the Witzel as he believes it reduces the possibility of dislodgement and reduces drainage from the stoma. This can be done via an open abdominal surgery or laparoscopically, either way, it is typically only performed by skilled Thoracic surgeons. Once inside the abdomen, a portion of the jejunum is located and a tube is fed through, the tube is then stitched into the intestines by creating a sort of "tunnel" with sutures. The portion of the small intestines is then tacked to the abdominal wall with more sutures. My surgeon performed this all laparoscopically. I have about a 3 inch incision above my belly button, a crescent-shaped incision below the belly button, and two incisions to the right. Well... where my belly button used to be, I don't really have one anymore. lol The tube lays to the left of all that. I also have 5 huge sutures holding the tube externally, as there is nothing holding it in internally like the G tubes. The intestines, especially after a Witzel are just too small to inflate a balloon or bumper safely.

Back to waking up. Ouch! I don't think I mentally prepared enough or this surgery. It was much more involved and much more painful than I anticipated. It also altered my anatomy to a degree I did not apprehend prior to surgery. To put it very straight forward, it was a bigger deal than I expected. Recovery was grueling. Pain control and muscle relaxers every two hours, which is tricky since I am allergic to so many opioids. We struggled to find the right combo for the first 48 hours, during which, I was literally crying out (loudly and uncontrollably) in pain... My poor roommate. Once we found the right cocktail I began to improve. Next step, attempt feeds into the tube. Unfortunately, we began feed attempts a bit too early, my intestines had not turned back on yet, we quickly realized. I became a nauseous mess. I could not stop dry heaving and throwing up. Thick, dark green bile was pouring out of my G tube. I was assessed to still have a post-surgical ileus. Bad news. We waited another day. Finally, things began to slowly work again! Wanna know how they know it's working? Farts. I farted! Finally! After almost 3 days! We began feeds which were no longer causing pain, nausea, vomiting, or producing bile backup.

Getting my feed rate up to something the surgeons were pleased with was a slow process. Finally, after a few more days inpatient, they were satisfied sending me home on 24 hour feeds. I will continue in my attempt to up my feeding rate so I can have a few hours a day off my pump. Once recovery in the hospital was complete, recovery at home began. They say it takes about 6 weeks for everything to heal up completely, so I have a ways to go! Today is 8 days since surgery and I finally left the house. Nothing exciting, just a doctor's appointment, but it was my favorite doctor, so that's something! (Hi!) My weight is down to an all-time low, 127lbs (I am 5'10"), but hopefully, now that I have a stable source of nutrition we can get that weight back.

In other news, my podcast with Enabled Warriors I recorded back in September aired this week. Please take a listen. It is hands down my favorite interview to date. The host is such an amazing woman and it felt like talking to an old friend. I have attached a few links for different listening formats below. I suggest youtube since it is visual as well. Hugs!

Spotify: (Oct. 23rd)

For more images from surgery, check out my Instagram, @thetubefedwife Have a great week!

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.