You would think that my blog would have moved over to arsetopia.com by now but of course there is some fuck up with my hosting. First time I have had issues with godaddy. Hopefully get it worked out by next week so I can actually design the thing better with more control over my blog. Juggling branding and design lately with my own designs are always a challenge. Maybe I should pay myself, might kick my arse into gear!
So what’s the happs? So called “pouchitis” has hit me once again. If that is what it even is. My GI thinks it is possible I don’t even have pouchitis, that it might be something else. Counting down the days to my scope in June. I called to move it up even though it would be before my 6 month surgery post up but I am desperate for some answers. I am now on my 4th antibiotic since Flagyl isn’t doing the trick. It is the lowest of them all but who knows, maybe it will help for awhile. Of course even if I had c-diff that too would be treated with antibiotics so not sure what else is actually wrong. Maybe strictures… 5 more weeks of suffering.
I try not to eat too much during the day since the gas is so bad and so loud with pouchitis that you can hear it across the room and who wants people at your temp job to wonder what is up with your guts. The life of a freelancer. Little cash and no clue what tomorrow will bring.
My “pouchitis” (feel like I should name it), is a real pain in the gut. Not only does it cause pain, trouble intubating, bleeding, fatigue from all the meds. It is painful with pops of gas. It feels like someone is kicking my spine and gurgling and pressure are all along where my asshole once was. My pouch pops with gas that you can see it actually move, as if there is an alien in there kicking me. So if you can see it and hear it just wonder what it is like to live with it. It is horrible, enough to make you want to check into a hospital and be under care forever. When this pouch works it works and there are many benefits to it. I can see how people with UC love getting the BCIR. I on the other hand never had UC so I can not relate. This wasn’t something I wanted, this wasn’t a happy surgery like it is for many, this is the shittiest quality of life I have had. Since I have Interstitial Cystitis when I do have this much gas it moves my bladder around like an evil stepsister that it is, causing me even more discomfort. My bladder is still way better not having a colon but it still hurts.
I never imagined life with chronic pain past bladder issues. I never thought it could get much worse. I still get up in the morning and hope that today will be a better day. What else can a person do? It shouldn’t have to be this hard.
Today reached 90 degrees in Dallas. My legs are cramping from lack of fluid intake or not enough. They woke me up all night along with the gas movement and pain. I hope I can make it through this hot summer without ER trips for hydration or passing out from heat.
I miss sleeping peacefully.
This is my view during the day. Thought I would share something beautiful. The architecture is breathtaking and so is the greenery.