Best Post Comment Ever: In 3D No Less

Alien Food

Thanks to Sasha, Kaylee, and Mark for the 3D display of empathy
and insight into the mystery of my off-kilter eating problem.

To explain a little further: (for an explanation of the "alien food" The ongoing roller coaster of MS and surgery recovery is unrelenting. I noticed over the past couple of days that the caecostomy tube that I have to regulate bowel function, which usually is about 6" long, was slowly retracting into my abdomen. By yesterday it had pulled most of the way in until the end of it was close to the opening. Suddenly the large cap jerked partway in and the pain was excruciating. To make a long day at the ER and the Interventional Radiation Lab into a shorter story: all was finally home late in the evening and I returned home tired, in less pain, and further battered by this worn out body of mine.

Imagine my amazement and delight to discover that one of my dearest friends who I rarely see any more what with her demanding careers, toddler, etc. etc. etc. and my whole gunky mess, had somehow taken the inarticulate words from my previous post and turned them into the perfect 3D representation of this life-draining mess that is my loss of ability to eat. It is quirky. It shows what I cannot seem to say adequately for others to understand. It makes me want to laugh. It makes me want to cry. I am having a 4x6 printed for my doctors. And, either Dr. Seuss or Tim Burton may have met their match or secretly let one of their more darling creatures loose in the dear and lovely Sasha. Thank you, thank you, thank you!

Shouldn't I Be Swimming?

It is almost the three-month anniversary of my surgery and my last post. So much was expected; so much was promised; so little of these expectations and promises were realized. I had two surgeries at the time. An illeal conduit that rerouted my bladder function to a urostomy bag on my side and a novel surgical technique involving a caecostomy tube inserted from my side into my secum to address chronic constipation from neurogenic bowel.
The results? Mixed to down-right poor. The experimental caecostomy tube is, on one hand, a smashing success. For the first time in five years I am not constipated and taking every laxative on the shelf. I am not chained to a toilet. I am not having break-through diarrhea.  In about 30 minutes, every other day, using a flushing apparatus, we run about 1200ccs of warm tap water through the tube and flush out my colon. And just like that. Somewhat normal. The downside? A five inch long tube that oozes gunk 24/7 stuck on my belly. It can also pull out. As I recently discovered. 
But, the truly heart breaking, gut wrenching, just about done me in is the other surgery. It failed. Apparently the surgeon missed that I am a fat woman. Or, more accurately, dismissed our concerns pre-op. And, sure enough...my belly has the wrong kind of fat for this kind of surgery. See most fat people keep their fat nice and tidy under their facia (the tight musculature that holds in all of our guts) I have the audacity to have no fat under my facia and a big juicy layer on top. Much to the surgeons dismay. So the stoma he tried to build to bring the urine up the surface tends to shift. This causes the bags used to hold the urine to come loose. I then am chronically soaked in urine...my clothes, my bed, my skin. The only thing that helps is to lay perfectly still in my hospital bed. By the hour. By the minute. By the day. In a recent 24-hour period the bag had to be changed 5 times...each time takes 1.5 hours...that is 7.5 hours our of 24 spent on urostomy bag problems...a full work day.
I have had two major abdominal infections in the past eight weeks; a 1.7 centimeter deep wound in my abdominal wound that took 7 weeks to heal; my MS is steadily getting worse; as a result I fell out of bed and sprained my left arm: and none of these come close to my most challenging, life-impacting, crushing impacting symptom. Four-weeks ago I had a high fever and started a second abdominal infection and at the same time, in what remains a mystery, I lost my appetite; my interest in my food; food became an alien thing, that to this day, I have to force myself to eat. I choke down small bites of turkey/mashed taters/noodles/broth/apples/tea. But only if I don't think about it too closely. Only if someone reminds me to eat. It is like someone turned off the part of my brain and body that needs and enjoys food. My sense of taste is off. Just now maple syrup had a flavor that seemed good-but nothing like what I remember. 
One of the hardest things is that as a fat person: people are so excited I am losing weight they seem to miss that something is seriously amiss. If I were 160lbs and had just lost 30 pounds in a month, no one would say, "great keep it up!" But, when you lose 30lbs at my weight people congratulate you no matter that reason. It makes me so angry. Thin is so important that it is OK for me to suffer. And meanwhile something is deeply off kilter somewhere. And all my surgeon seems to focus on is his happiness that I am getting rid of some of this dreaded fat.
Now I am supposed to be getting geared up for a second surgery. I don't have it in me to go into the details. I do know that physically, spiritually, and mentally I am not ready. I don't trust my doctor right now. No one can tell me that I won't be in this exact same place three-months after the next one. I don't trust much of anything right now. I am so worn. So frazzled.
Wasn't I supposed to be swimming now?