Life Update

Again, let me start by saying sorry for the long gap in time between updates. I am still not in the habit of writing and something else always distracted me at the last minute. Hopefully I will get better at being more regular.

Since my last update I have been recovering from surgery. I won’t say that this process has been easy, but I am at a point where most of my post-surgical pain is gone. The incisions no longer hurt and I can move around like I could before without extreme pain.

I am having some issues though. My Jtube is still painful. There are days when the pain is minor and I can go about life as I please. There are also days where the tube burns and shoots pain every time I move and I have to be extremely careful not to bump it on anything (even my shirt). This is a pain that I was used to dealing with when I had my previous tubes so I hope that it will get better or that I may ultimately not need the tube at all anymore.

I was extremely hopeful going into surgery that it was going to completely transform my life for the better. While I know intellectually that this is a slow process it doesn’t make bad days any easier. At the moment I can still take in very little by mouth.

I was not getting enough nutrition through my feeding tube and so I am now back on TPN (which stands for total parenteral nutrition). This is essentially IV nutrition that contains everything I need to survive. This first off meant that I had to have a central line placed. The doctor ordered a PICC line (a line in your arm) but due to the issues and pain with the last PICC placement the doctor performing the procedure decided he wasn’t even going to try a PICC. This means that I now have a central line in my chest. (A dual lumen tunneled Groshong to be specific) The procedure was very easy as I was properly sedated (I have not always been in the past) and the pain afterward was very minimal. I started out running TPN for 24 hours a day as my body adjusted to having full nutrition again. After a couple weeks I moved to running it for 18 hours and having a 6 hour break. I now run my TPN for 12 hours a day (at night) and have a 12 hour break. Each week a nurse comes to draw blood to run all kinds of tests to see in the TPN formula has the right amount of key nutrients or if the formula needs to be slightly changed. Other than a risk of infection the only real downside is that I have to test my blood sugar 2 hours into the infusion and 1 hour after disconnecting to make sure my body is responding appropriately to being connected and disconnected. My fingers are now all bruised and sore but I guess that is a small price to pay for life sustaining nutrition.

Along with being on TPN I am attempting to eat more and more. My first post-op appointment went well and I have been cleared medically to eat anything I want. At first this sounds like a very exciting step but unfortunately my body is not tolerating much of anything. I can drink most things (except carbonation) as long as I do so slowly. I can eat small amounts of soup (that has been blended and strained) and small amounts of crackers (that dissolve easily). I have tried small salads, baked potatoes, and a few other foods and while some of them stayed down there was a large amount of pain shortly after eating. Other times these foods cause me to throw up. I am currently on 4 different nausea meds and none of them really does the trick. I have met with both a dietician and my GI doctor and both told me to continue trying to eat. Just because something makes me sick once doesn’t mean it won’t sit well the second, third, or umpteenth time.

I have also now started battling a new symptom. After having severe pain in my abdomen I finally ended up in the ER this past weekend. After running blood tests and doing a CT scan the doctor assured me that nothing is urgently wrong and that nothing appears surgical. I do however appear to have ulceration of the small intestine. We knew this was a potential complication of my surgery but thought we were past the point of it occurring. I am now on high dose omperazole to help with the ulcer and have some pain meds for the days before it kicks in. I may require another endoscopy to further assess the damage but am waiting to hear what my surgeon would like to do.

While I know that it can take 6 months to truly know how effective this surgery will be and what long term eating looks like it is still difficult that things are not going super well right now. I am going to be honest and say that depression is something I have battled for years and right now it is really bad. I often feel worthless and like I don’t deserve to be healthy. I worry that this is the best it will ever get and feel weary of living a life in pain and suffering. There are days where it is a struggle to get out of bed, both physically and emotionally and days where the last thing I want to do is be around people. There are also days when I think, “I can do this” and “at least I have my life”. I want to be clear, I can be in the darkest depths of my depression and NOT be suicidal, so don’t worry about that. Depression sucks all the life out of you and puts thoughts in your head that have no place being there. I am lucky that I have access to a great therapist and my parents and a few good friends that are there when I need to talk or cry about how hard things are. Even on my darkest days there is a little light left saying “it will all work out”. I don’t know what everything working out looks like but I am hopeful that a time of happiness and health is still in my future.

Thank you everyone for joining me on this journey and caring about where the road leads! I couldn’t do any of this without the people around me.