Or should I say my gutless guts are screaming since so little seems to be left. I am off to Cleveland Clinic once again next week to finally have Bo Shen scope me. My surgeon put me on Suprax and a drug for candida (yeast overgrowth) since we just have no idea if I have pouchitis, candida etc. I was great for about a week and now I am the WORST I have ever been. Something is wrong, I just hope he can find out because it is unbearable. My food rips through my guts the minute I swallow. Gas is nothing like what you get with a colon. For me it feels like acid is churning inside me, it rips through every part of my guts and the pain is horrible and you just can’t relate unless you have it. So I am off all antibiotics and other meds for yeast so if something is going on they won’t mask that in the scope. My valve feels like it is ready to pop the pressure is so bad. I double over with pain and try to move it away from my stoma so I get relief. You can hear my guts rumble and it may be funny to some people it is torture for people like me. So I am on Norco to help with the pain and to slow my guts down. I hate the stuff. I have bottles of Norco and Oxycodone that are even expired because I just don’t like being on pain medicine. I want to be normal or close to it. My pouch feels like it is a cactus inside me. My small bowel is so hyperactive it kicks my spine around.
I have had a knot that appears on and off that I thought was a Desmoid but back in Dallas my favorite Colo-rectal Oncologist said it wasn’t because it did not move around and my scan didn’t pick it up. Here are Georgetown when I saw my new GI I mentioned being in the ER recently due to a possible stomach bug and then this knot was back in my ribcage area, hurt, food wasn’t passing easily and liquid I drank gurgled back up. So I had a cat scan and it showed no blockage. Saturday I had this feeling come back in my rib cage and it was intense to where I wanted to drive to Georgetown Hospital and have my GI paged. I just decided to wait until I see Shen next week, I am so tired of sitting in ERs to get nothing accomplished. But I know something is now very wrong. Food is going through me so fast. I have cleaned up my diet as strict as the Candida diet is. I have no sugar I am consuming or Splenda. I sucked it up and started to use Truvia (Stevia) only sweetener approved on Candida. So it can’t be diet related because between juicing and not eating out almost everything I consume is whole and not processed. So there has to be something else going on. Maybe some large polyps in my Duodenum again or adhesions or worse. I can tell there is a major problem so if someone tells me they can’t see anything, even coming from Shen I am going to flip out. I can not live like this and I have no fucking options. There is nothing else for me, I can’t take out my whole digestive tract….
My mother is stressing out that my disease is progressing. I guess even my own family doesn’t get my disease lol Bad enough none of my friends do, they think it is a diet related thing or I just had cancer now I am better. Erhhh WRONG. There is no remission for FAP, there is no cure there is nothing one can do to make this disease better or worse. Diet is only there to help bacteria or yeast overgrowth , nothing to do with FAP itself just your GI issues you have from a small bowel acting like a large bowel.
I picture my stomach being carpeted with polyps as I type this. I have yet to get one in the actual gut but something is not right. My ulcers in my esophagus cleared up with previcid since that was on the verge of being cancerous so it can’t be related to that. I even refilled my script in case it was an acid reflux thing but this is far beyond that at this point.
I feel bad for my family more than myself. I just live in absolute torture but they think it is something major and I might be dying. My mom might have grown 50 more grey hairs in a day. My husband I feel bad for, he sees me at my worst and it is like being bipolar. I smile and make jokes so he doesn’t feel like he is always with someone who is miserable and crying through out the day all the time. Trying to make things normal, as normal as I can.
I am glad I get to go to Cleveland again. I loved walking around that city. Last time it made me feel so much better. That is when I went home and packed it up to move to the DC Metro area. And here I am, living in a suburb just like I did in stupid Dallas. I need a walkable city. When I am better I am going to force myself to metro it into the district more often. If I stay in Virginia all the time I will go crazy.