I know the feeling. I'm not sure that my rectal spasms are as bad as yours are, but I know what it's like to have to catch them at exactly the right moment in order to pass anything. I have a lot of trouble getting gas out...even more so since surgery. I noticed that while I was still in the hospital recovering.
I eat the same thing every day, too. What foods are on your "safe" and "unsafe" lists? My eating before surgery was the same way as yours- I could only get in a fraction of the calories that I needed. Eating has been a little easier since surgery, but the good days are getting farther and farther apart, and I'm having more and more trouble eating and getting the food to move through. It's like food just sits in my small bowel. It does have its phases, and like you said, there is no explanation for why any given day is good or bad. Lately, I will have several weeks- to- a month of lots of pain and problems, then a good day or two, and then it will be back to lots of issues. What is the cycle like for you?
I've heard that the nausea from both nasogastric tubes and J-tubes is really bad. I haven't had a feeding tube, but I was on TPN for a bit. It is normal that you couldn't eat as much with the feedings. When nutrition is supplied via NG tube, J-tube, or TPN, the body recognizes that influx of nutrients and suppresses the appetite because it thinks that it is getting all the nutrients it needs. I was on TPN right out of surgery. It was great because it kept me from losing additional weight while my bowels woke up from anesthesia, but I had zero appetite (and I've never had much of an appetite).
My weight now is about 98-100 pounds (44-45kg). At my worst, it got down to 80-82 pounds (36-37kg). I am a medium height- about 5 foot, 7 inches (170cm). I hope I got those conversions correct! My weight fluctuates based on how bad my motility is, and how much food is sitting in my small bowel and not moving.
You read my mind! I was going to ask you about your thyroid. I am not "textbook" hypothyroid, but my thyroid numbers are on the very low end of what is considered "normal." Every time they check my thyroid levels, they seem to be a bit lower than the time before. I'm probably due for some more blood work pretty soon, so it will be interesting to see where my thyroid numbers are at. My mom and my brother are both on medication for hypothyroidism, so there is a family history of it.
My body temperature has always been a mess. I am cold most of the time, even during the summer. Summer days in Texas are frequently over 100 degrees Fahrenheit (37 degrees Celsius). I have times when I get very hot, break a sweat, and then a minute later, I'm cold again. I agree- it's not necessarily directly linked to the dysmotility problems, but it is indicative of autonomic problems. Do you have problems with dry eyes and mouth? I do.
Have you had any hair loss, or problems with your complexion? Is your menstrual cycle normal? There are times when I lose a lot of hair, then it will taper off for awhile, and then start again. My eyebrows also seem to fall out easily. Weird, I know. When my motility is really bad and I'm in a lot of pain, I get severe breakouts of cyst-like acne on my face. My period has been off and on since 2004- sometimes there will be 5-8 months between periods. I know that is from my weight being low.
I am also concerned about a systemic neurological disease. My knees have been bothering me for awhile, but it hasn't affected my activity level. I guess all we can do is take one day at a time, and keep doing our best to deal with it all. I never imagined that my life would be like this, that's for sure.
If you still have spasms in the anus after the rectal resection, will they go back in and remove the sphincters as well? I know sometimes they remove all of the rectum and the sphincters, and then sew the anus closed. Do you already have the resection surgery scheduled?
Have you ever tried Domperidone? It's a drug that is not approved for use in the US, but if I'm remembering correctly, it is used in Canada, Europe, and New Zealand. Even though it's not approved here, we can get it online, and some US doctors work with Canadian pharmacies so that they can get it for their patients. Domperidone helps speed the motility of the stomach, and a little in the small bowel. It didn't help me very much, but I know that it works wonders for some.
According to my parents, I've had GI problems my entire life. Motility problems took over my life in 2004 at age 18. Tons of doctors later...