Goodbye Stomach

It’s happening. My dysfunctional stomach will be leaving my body on Monday!

To back up a little, I have been battling Gastroparesis for the past couple years. For me this means that I have a difficult time eating, as it causes nausea, bloating and severe pain. This has lead to damage in my throat and teeth from throwing up so much. As a result I have a G-tube that goes through my abdomen into my stomach that allows me to drain my stomach to avoid throwing up. The unfortunate thing is that food tends to get stuck or not fit through the tube making it nearly impossible to drain. This means that when I eat I risk getting nauseous without being able to drain and end up throwing up anyway.

I also have my J-tube to allow me to get nutrition through my small intestine. The unfortunate thing with my J-tube is that is causes me constant pain and frequently I have issues with tube feeding. I have had to change formulas 4 times in the last few months as the formulas were either clogging my tubing or were creating problems in my intestines (such as severe pain). I have also had to get new pumps twice as my pumps have stopped pumping formula. The current pump I have will sometimes run all day with no problem but not actually move any formula meaning I am hooked up for hours without getting any nutrition.

The Gastroparesis also comes with a lot of mental/emotional stress. Not eating is extremely difficult. I no longer have the feeling of hunger, even when I have not eaten for days. However, the craving for food, or more specifically the desire to eat, is still there. I know that consuming food will cause severe pain and nausea but sometimes I want to eat so bad that I give in. This hardly ever ends with anything but me curled up in a ball, with agonizing stomach pain, with a barf bag next to me. There is also the carrying around a backpack all the time with my pump and formula. You would think that it would get easier and feel like part of you. While I often feel like I am missing or forgetting something when I am not tube feeding, I HATE carrying my backpack around all the time. I hate how it draws people’s attention. Overall, it isn’t easy to be a tube fed individual.

The other piece that I often struggle with is the impact that Gastroparesis has on my life in other areas. I hate that when I am in public people see my tube before they see me. My tube is part of me, but it isn’t all of me. I have random strangers ask me what the tube is and why I need it. While I don’t mind educating people, it sometimes gets old having to share personal information with people you don’t know. I miss the pre-sick days when I could wander around the grocery store and be just another person, without stares, comments, and questions about my service dog or medical equipment.

I also can’t stand being dependent on medical equipment for my survival. Don’t get me wrong, I am extremely grateful for (and at times love) my feeding tube and the medical supplies that allow me to continue living. I don’t however love being dependent on something to maintain my life. I guess you could say I have a love/hate relationship with my feeding tube.

Over the past two years I have had surgeries to try to help with my gastroparesis. I have had several tubes placed to help me get nutrition without needing to use my stomach. I have had a pyloroplasty, which essential weakens the sphincter at the base of the stomach so that food passes more easily without needing stomach contractions to force it through. Unfortunately, while these things have improved my gastric motility some or have helped maintain nutrition, none of them has been a solution.

That is where my next surgery comes in. We have exhausted all the non-surgical and other surgical options and at this point have decided that the best course of action is simply to remove the offending organ from my body. On Monday I will be having a gastrectomy with roux en y reconstruction. This essentially means that my stomach will be removed and my intestines will be moved around to accommodate for the missing parts. This is considered a major surgery and will take at least 4 hours to complete. My surgeon is amazing and barring complications (such as excessive scar tissue) the surgery will be performed as a laparoscopic procedure. This will hopefully make recovery a bit easier. I will be in the hospital for at least a week post-op. There is always risk of complications, in this case that mostly means leaks developing along my digestive tract, but my parents, surgeon, and I have decided this will give me the best odds for a better quality of life.

The hope for after surgery is that I may someday no longer be dependent on my feeding tube. My tube will remain in place for a while. I will not be able to take much by mouth (other than small amounts of liquids) in the weeks following surgery as my digestive tract heals. I will then try advancing to easy to digest foods. If all goes well I will be able to try eating more solid foods. There is a chance that several months from now I may be able to eat a near normal diet, just in smaller and more frequent meals. There is also a chance that I could end up tube dependent for the rest of my life. At this point we have decided that this is a risk I am willing to take.

The most common question I have gotten recently is ‘How are you feeling about the surgery?’ The honest answer is that I am more excited than nervous. I am ‘cautiously optimistic’ (as my POTS specialist always says) that this will greatly improve my life. I am more nervous about the recovery and how much time I will have to spend in the hospital than I am about the surgery itself. I have spent a lot of time in hospitals and it always stresses my out. I have had nurses and doctors that were disrespectful and not understanding of the complicated medical conditions I have nor willing to take the time to ask and learn. While I know that my surgeon is wonderful, I can not be sure that all the other medical personnel will be as caring and understanding. My PTSD also means that I am often anxious in medical settings and distrustful of new people which makes hospital stays difficult. Finally, I am nervous about pain management. Part of having POTS means that my body responds differently both to pain signals and pain medications. After previous surgeries I have found myself in a lot of pain that is difficult to manage. We have already met with a team that will be monitoring my in hospital care from the moment I am admitted until I go home. They have assured me that they will do everything to ensure that my pain is well managed, but I am still a bit nervous about it.

So, on Monday, I say goodbye to my stomach and hopefully hello to a whole new and much better future.