So I am reading my latest issue of “Science News” when I come across an article titled “Crohn’s drug shows promise”. Needless to say, I read that with skepticism and some hope, seeing as how Humira and Remicade have both been total pieces of shit when it comes to my Crohn’s and Humira ended up giving me kidney cancer and I had to have a partial nephrectomy.
Anyway, this new drug, mongersen, supposedly put over two-thirds of its trial participants into remission for over six months. if that is true, how do i sign up for the clinical trial? I am so very tired of Crohn’s and all of its side effects (namely the severe diarrhea). It has come to the point that i can’t go anywhere without making sure that there is a bathroom wherever it is i am going. this drug works on TNF-alpha differently than humira or remicade. again, neither one of those drugs worked on my TNF-alpha in the first place, so anything is better than those two. i am emailing my GI to see what he says about this compound.
Published April 4, 2015
Crohn's Disease , Retirement
Well, Crohn’s Disease has finally won. After 20+ years of having the disease, I am retiring from my job because i can no longer handle the pain and suffering and try to teach at the same time. I had three surging during this time, and missed a lot of work because of both the surgeries and the pain and just can’t keep up anymore.
Had a colonoscopy this past Friday (9/28), and the GE found what we suspected all along: my previous surgery point (where the small intestine and large intestine meet) has closed up and will need to be re-resected. I am on a liquid diet for now and anything more solid than scrambled eggs hurts like hell once it gets to that closed intestine point. My doctor has made a referral to the surgeon, so once I get that appointment we will figure out a date for surgery and I can’t get this over with. The only good thing to come of this is that i have lost 30 lbs. (my wife hates me though. :) )
Update: Appointment with the surgeon is tomorrow (10/15) at 2:45 p.m. I am going to try and get the surgery scheduled for Halloween (Oct. 31) so that will give me time to make up lesson plans and get my classes ready for when i am gone. But the way the pain is going and how I can’t eat anything without pain, I will want the surgery whenever the surgeon schedules it.
Update #2: Surgery is scheduled for Friday, November 2. And my official weight is 285. down from 320 a month ago.
I spent the weekend in the hospital with a “bowel obstruction”. the surgeon on call, after looking at the CT scan, decided to be conservative with his treatment and hope it was just severe inflammation and not scar tissue obstruction and gave me a NG (naso-gastric) tube and hope that nothing going through the bowels would calm them down. and it did. no surgery needed but i am back to 40mg daily of prednisone, and a soft diet.
this is the first time i have been in the hospital for Crohn’s since my initial surgery in 1995. i have never had such inflammation or gastric distress before and don’t want it again.
So here we are 1 week+ into the 2012 campaign and the Red Sox are 4-5. (Better than last year when they were 2-7 at this point.) Of the first three series (against the Tigers, Blue Jays and Rays), they are 1-2-0. (The series against the Rays isn’t technically over with a game to be played tomorrow on Patriot’s Day, but they have won the 1st 3 games, so they have won the series, even if they lose the game tomorrow.) And the last three games have been impressive in their offensive outpouring. I still think they won’t make the playoffs but they will do better than last year’s 90 wins.
In other news, my Crohn’s still sucks and hurts, but my pain from the surgery is getting less and less every day, but it is still there and does hurt very much on occasion. My GE wants to get me off Prednisone, but my body is addicted to it and it is really hard to go below 20mg daily.
Published January 19, 2012
Cancer , Teaching
Tags: cancer, pain, vicodin, working
so, I think i am ready for work now. It has been 5 weeks and the pain is mostly gone from my side (more on that in a minute), and I am down to one nap a day. And I am down to 1 vicodin a day as well. I need to get off the pills; I was/am addicted I think, and since dr. a. won’t give me anymore after this refill runs out, i am going to have to wean myself off the drugs. :(
I went back to Huntington today (mostly to get money back in my coffers since Amazon is drying up) and boy was that a bad idea. I worked from 4:30-7 pm, and by 6 pm, i was in horrible pain. I wish i could have gone home, but the student i was tutoring really needed the help, so i stayed to help her but ran out of huntington to get home as fast as possible. (And i took a vicodin to help me out. how sad.)
well, I am looking forward to work at patterson monday (i actually am), and can’t wait to see all my dumbass students. I will, of course, show them my scar and have to explain to every class what happened and was it going on for the rest of the year.
Published January 9, 2012
Cancer , Teaching
Tags: bored, kidney cancer, work
well, here we are at 3 1/2 weeks after the surgery and i am ready for work. well, not really; i still tire too easily and probably won’t be able to stand up in front of the room for very long before i have to sit down and rest. i am down to just one nap a day and 1 or 2 vicodin a day (and today i haven’t taken any – but will probably take one soon). my side still feels like it is being pulled and stretched, but it isn’t as bad as it used to be. i am walking every day (doing 3 or 4 laps around my court and walking over to the neighboring court – about 20 – 25 minutes walking time). well, next week will be the week i go back and we will see how i do at work. :)