CT Scan and Valve update

Well I was supposed to go to St Pete Florida for a scope since my valve is slipped or just really fucked up. But the same fucking GI that I flew down for before and didn’t scope me due to his golf schedule is going on vacation. It pisses me off since I picked the POP and Rhenke thinking my aftercare would be good. I am starting to wish I did all of this at a teaching school like Cleveland Clinic. Anyway. I have wasted more money on this fucking GI and over it. Someone should at least make it right, I am tempted to bill someone for both airline tickets I purchased. Sometimes it is just not worth having surgery out of town I guess but what did I know? I am not bitching about the BCIR team totally. I do believe they need more doctors on board with this program though so there is just more care. There can’t be one GI on staff that is a douche bag and from what nurses tell me, “a total asshole with no care in the world.” Guess I should have taken those words to heart.

So I saw Dr Jacobson here and he is doing another scope. The last scope he knew my valve was on a serious angle but he told me to be optimistic and maybe surgery for this won’t be needed. I am starting to worry about my veins, they blow and are tiny as is. I have to get 2 IVs next week. Iron infusion #2 and the Flex sig of my pouch.

My CT scans came in and of course my rockin’ GI said she needed someone else to look at the scan that is was out of her area and she doesn’t like to take chances with me. There are 3 pockets of fluid in my pelvic area. I went to Jacobosn about having it drained since my Oncologist thought maybe this was contributing to my pain but he said he doesn’t believe this is related to my pouch and more related to OB so I am now going to another doctor. I have a small renal cyst and a 1.2 cm cyst on my right ovary and fluid is built up on the left. So of course for me I have the concern of Ovarian Cancer. It could be possible since well I do have FAP. It is VERY VERY rare we get Ovarian with FAP but hey that’s what is in my head. I have 2 small hernias one in my 6 pack abs (lol I love having them but can’t see them with a layer of fat on them!) and one small one in my stomach that I have had for a bit now. I also have skin lesions or an abcess in the subcutaneous fat along the inner gluteal cleft.

I am half tempted to reschedule my Duodenum ablation to another month. I go to the pouch guru at Cleveland Clinic on Sept 25th now instead of Oct 2nd, it got moved up.


I have been on Omniceff for about 2 weeks now and so far doing good as far as pouch is going. I still have extremely bad pain from my ribcage, back and down to my vagina basically. it feels like pins and needles are in me. It is funny when you think of just how much pain you can tolerate. I am tired though. I want my life back, I want to work out. I have gained 5 pounds and that is depressing but when I work out lately my valve is more fucked up so I get nervous. If I had money I would try to do rolfing to break up possible adhesions but insurance doesn’t cover that and it’s a good 600 bucks for the amount of sessions you need. Hopefully I will be able to work soon, if I can even find a job. I apply just to see what is out there but no dice.


2 thoughts on “CT Scan and Valve update

  1. Hi, it’s toughenough from j-pouch.org,
    I just read your last 2 posts and am mad as hell at all of your doctors. I’ve experienced doctors saying a problem belonged in the other ones specialty. Nothing near as serious as your potential life threatening problems! I wish you could get them all together – or go to the Cleveland Clinic or Mayo and get a new team. The specialty doctors at Mayo all work together and consult with each other and I assume CC is the same.

    They need to all get together and go over all of your problems together. If necessary they need to all go into surgery with you and as a team figure out what the hell is wrong and operate together, if needed, to at least try to get you out of your pain and problems. Individually they don’t want to take on the problems and toss them to another specialty as they don’t want to be sued. I think there are many wonderful doctors out there but the insurance companies and lawyers won’t let them “practice”.

    I’ve heard of C/R surgeons attending childbirth’s with their patients OB’s. Working together is not unheard of.

    I wish I knew a dream team to send you too. It sounds like your GI is smart – she admits when she needs you to consult with someone else, maybe she knows where you could go to find a dream team to handle your serious medical problems.

    You are young and have a long life ahead to live and if someone doesn’t take he lead here you are just in for more suffering.

    Concerning your job situation, or lack of one. I suggest you file for social security disability insurance. I do not know your particular facts but do know depending on your circumstance and age there are several alternatives that might make it possible for you to obtain benefits. They also determine the date you were disabled and can pay you as much as 12 months of past benefits from the month you first initiate your disability claim. I qualified the first time and trust me if I qualify you will for sure. Then after you receive payments for 24 months of coverage you are eligible for medicare health insurance. If or when you are doing better and able to work they have systems in place to work with you to transition.

    • Thanks for the response! I am going to CC in a few weeks to see Bo Shen. I am assuming like MD Anderson was set up that they send you to other people to consult, scope, scan, etc. So I would think this is the case. I sent over tons of medical records already for him to review.

      I believe when you have a disease you almost have to be in a teaching facility with a team of people. Sad because I like to give people the benefit of the doubt and I picked Baylor for certain things since they are one of the leaders in FAP research here but I agree I need a team at one time to just figure out why some things are doing what and figure out a plan. I know I have a few things wrong and I don’t know what it all is in the end. It is a lot of guessing.

      Hopefully I can just have maintenance done yearly eventually and have CC handle my “weird” shit. I am very frustrated. I feel this way with almost all doctors. You have to be your own doctor pretty much it feels like and diagnose yourself and boy do they HATE that shit.

      I tried for SSDI with an attorney and got denied. I have to get a job honestly. Either if it is a company that is understanding or I can work from home a day or 2 a week and rest in house. I make a very good salary when employed so that is my goal , to get better, get off all these meds that make me too tired to function and just be “normal”.

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