I feel like I keep disappearing, but I think it has more to do with what I have planned and what I can actually accomplish clashing. Every 3-6 months it seems that I have a nasty flair up of ‘whatever’ I have going on in my tum bits. I had noticed that the number of times I eat during the day and the amount has slowly decreased, but didn’t really think about it since I have not had a true flair since May. Currently I am dealing with severe pain, nausea, vomiting, and I am SO hungry, but cannot eat without vomiting.
We’re thinking that my stomach may be partially paralyzed (gastroparesis) on top of me having a build up of scar tissue from my gallbladder surgery. So when I overeat, my food just sits in my stomach and cannot travel out as quickly as it should. I then end up with severe nausea and an NG tube down my nose to help suck up all the bile and left over nastiness in my insides. Luckily I respond really well to Zolfran (anti-nausea) and am usually sent home with a bunch of that and a recommendation to go get checked for gastroparesis (it involves eating a sandwich with contrast in it and watching your stomach digest it) and going to a surgeon to get the scar tissue issue taken care of. I had a CT with contrast that found moderate-severe ulcerations throughout a few pieces of my colon that are indicative of IBD (inflammatory bowel disease namely crohns [although colitis runs in my family so I’m surprised that they are thinking crohns]). I’m also having issues with anal prolapse due to weakened collagen. Gross, I know, but that is a very real probability with Ehlers-Danlos Syndrome. It herniated into the wall toward my right leg and then out. Lovely.
So, I’m home and I have more on my list and I’m SO tired and so hungry. I need surgery to fix scar tissue and to keep my butt from falling out. I need to follow up on my possible Crohns and Gastroparesis (which was what the last findings were too and a time before that). Which I will do AFTER I have health insurance. There is also the very real probability that I will need a feeding tube if this continues so I may end up with an NJ tube so we can by pass the stomach. I’m also dealing with a lot of hyperadrenergic postural orthostatic tachycardia syndrome (hyper-POTs) issues which make me extremely fatigued because not only is my heart working extra hard against gravity, I get adrenalin rushes that cause me to crash like a mother bitch.
I may not be posting as much as I would like while this is going on and I am terribly sorry about that.
I may write up a thing about every little thing that is going on with me so I have it all in one place for friends/family who may be interested. Besides that I may be quiet for a bit because I will more than likely be asleep for the next week. If anyone would like me to tell them any thing about what the medical stuff is or has any questions at all, feel free to ask.
<3Huggles to all, Stay Pretty my little darlings.