Back to THE CLEVE!

Some people get to buy new shoes, clothes, maybe get new tires for their car (that I desperately need), with money they make. I on the other hand am spending money to go to Cleveland Clinic and then Mayo I think it will also be. Hotels, travel, food, etc. Fuck. I want to go to the beach for a weekend or get my car detailed. I make ok money a the agency I am currently contracting at but I still don’t have any way of saving any of it. Just goes right back out to bills and trying to fix all my issues I inherited with this damn disease.

So I have my first pain management session on the 8th and hopefully get some relief. I am trying to hold onto this pouch as much as I can physically and emotionally hold out. I said 2 years post op and if things aren’t better than perhaps get a temp ileo to see if I like it and if I do make it an end ileo. I never wanted a bag. I never wanted any of this. If I knew this was the shit I was getting into, literally, I would have never had surgery. I would have stuck with the cancer and gone because this is NOT living. I am so sick and tired of that fucking argument. You can not possibly understand my daily life and how bad it is. Just because you see me with lipstick on or eating at a nice restaurant. Well want to know what that food feels like as I sit at a dinner table with you? It moves through my stomach and then sits, without a real stomach I then wait for this food to move. I break a sweat at that point, then once it moves, or shall I say dumps through into my pouch I get heart palpitations then and gas and stool rips through my gut and bowel and even moves my spinal chord around. I feel like an alien is fighting it’s way out. Once my pouch is full my bladder can’t take the pressure so I have to get up to piss a few times. When food moves through my intestine around my valve it makes my bladder freak out and my urethra starts to burn.  I wish I was never hungry because I would live on liquids. I am STARVING all the damn time since food goes through me in 2-8 minutes usually. I was jealous when a girl who just got a kpouch recently said her transit time is 6 hours! Hell… I wish I got 6 hours. 

Having my ultrasound done on the 8th as well to see if I can get my tubes yanked out. Might have my blood work done to make sure I don’t need another iron infusion. I feel like I need one. So exhausted and burned out. I need a vacation.

Other than that I am just truckin’ along. Turning 37 in a about 5-6 weeks and hey.. I predicted I would live until 40 🙂


7 thoughts on “Back to THE CLEVE!

  1. Hi Vanessa,its Melissa serna, were friends on FB, and spoke once after I got my torture terd pouch. I always follow your posts ,both on facebook and on here. I don’t have half a stomach , nor due I have FAP, hell I don’t even have a IBD(colitis, chrons ect), but I have a lot of the same physicaly feelings as you describe from this pouch, the baldder thing is horrible, after I eat I cant go 20 minutes between peeing sessions every 20 mins for the next 2 hours , it feels like a vise grip on my bladder after I eat, I have almost near constant cramps , I have ALOT of trouble emptying the pouch,which take 15- 30 minutes 5 times a day, and feel it never gets empty and leads to cramps from the shit still inside, I spend the first 3-5 hours of the day in a lot of pain till I clear out the “overnight” shit that’s in there which takes 3 intubation sessions , then the cramps are a bit less brifly, then I eat and with in minutes the gorilla is on my bladder, I thought I was going to pee on myself at work the other day while walking down the hall 15 minutes after I finished eating. I usually just sit most of the day other than when I am at work, cause that is the least uncomfortable thing to do, I used to be a active person. today I took a pain killer that I had left over from surgery, and it was so nice to not be in pain.i don’t typically take any pain meds, anyway it is so hard to decide to live in pain or live with a bag, I don’t have much of a life like this and can go on like this much longer and it seems that you are having a worse time than me. I am planning on going to see Dr.Rehnke hopefully with in the next month because I think the pouch is twisted and being compressed in a way that make it hard to empty, I want him to check this out and move it up about 10 inches, mine is super super low too, in my crotch low. I often think it would be better if I was anorexic or could exist on watery liquids.if he cant fix it then I am trying to talk myself into getting a bag so I can feel good and have a life.why the hell is it so hard to get rid of this torture device?sometimes I will have a half hour here or there where the pain is a 2 and I think , hmm maybe its not that bad, maybe I wont need to get a bag, but then a few hours later the cracken is awaken in my guts and cramps go down the front of my right leg they get so bad, I am too embarrassed to even go to my colorectal surgeons that I used to go to for removal of the pouch. I am hoping dr Rehnke can do a MRI and see the pouch is all folded up, I can feel it when I intubate, and just unfold it and move it up 10 inches. It must be very heart breaking for you to go through that horrible, terribly painful surgery, and everyone says how great this pouch is , and then feels all fucked up, this is how I feel, a lot of the time I cant even stop thinking about its this with the pain and the gorilla that comes to lunch and dinner with me and has a seat on my bladder, and then released the cracken in my freaking guts, it seems no one understands cause nobody has these issues, I hope we get better, or have the guts to go through with the other option (no pun intended).

  2. What exer you do go to the Cleveland clinic. Go see Dr. James Church for your j pouch. Trust him without doubt. I have FAP, 30 years ago victor Fazio did my IRA. 2 months ago Iearned I had stage 2 cancer. Dr Church did my 1 step pouch 6/12/13. I’m fine and its 7/10/13. Don’t mess around. Church is the man!!! Cleveland Clinic does 80% of j pouches and fixes all the other surgeons’ messes. You only get one life. Trust it to the best!!

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