SCA - Last Chance
a little intro, and then my question...
i'm in hell right now and have been for 11 months, since my first perirectal abscess that started in November 08 (i've had another one since then in may).. i've tried to abate this disease through humira, remicade, (tons of prednisone - been on this 11 years straight), immuran for 12 years (finally had a pancreatitis attack this year and went off the drug (thank god). the med list goes on....
i was living on pain meds (endocet) and cannabis hoping that my symptoms would improve with lots of rest coupled with the horrid drugs they were giving me..
I was hopeless, my wife was worried about opiate addiction (i was taking slightly more than prescribed - and opiates have reared their ugly head with me many years ago) and just the wackedoutness of smoking MJ (frankly, it works for eating, but other than that - not a bit of improvement in symptoms). She was watching her husband die and I had no idea what to do to get out of this.
I've stopped the cannabis - it makes no sense to me, even though it's nice to "drift away" every once and while, but that's a false sense of security and adds nothing to the improvement of symptoms.
I've scaled the opiate use from 9 endocets a day to 2 to 3 (today was 3 and yesterday was 2). I plan on stopping these SOON, but I can't get off the couch sometimes the pain is so bad, and frankly inhumane to live like that. Opiates are not a solution either, they slow motility and mask the pain, but they are so dangerous for everyone with acute pain - since the specter of addiction is very real.
I haven't had a solid bowel movement in 8 years, and that's the truth. I'm dying slowly and I have seemingly no way to stop the velocity of this disease.
7 times in the hospital this year... just a year I plan to try to forget
My doctor thinks that I should NOT be in pain. I would only wish he lived in my body for a day, and that my crohn's looks "good" from blood work and numerous colonoscopies and small bowel follow through, and the 7 CT scans that I glow from (radiation is real folks), constant tests of new spasm reliving meds from Bentyl to other crap that made me tired and even sicker in my opinion. His latest answer is that it's TIME to think about surgical options (ie. cut out stuff...). He has never ONCE engaged me on diet, which I feel is just aggregious and I just don't know better. WE NEED MORE DOCTOR ADVOCATES, not just drug pushers. I only wish I had this discussion with him in Jan this year... now I want nothing to do with him anymore.
Christmas -- I decided I was going to fight, and I'm going to man-up and deal with the realities of the new reality. I need to change.
We plan on ending this doctor relationship on Tuesday and I'm going to ask my doctor to go out of network to John's Hopkins or the Hoffman Center. If they don't do that, we will escalate indicating that they have done enough and it's time to allow me to see another specialist - one not specializing in giving me more drugs but on a more holistic approach, which has been just lacking on so many levels.
I started the SCA diet three days ago, I believe it's going to take far longer than a few weeks to feel better, but I'm sticking to it like it's my last hope. I will not sway from the directives in that book and online (illegal and legal lists). I am 125% committed to doing this diet as if I was back in Military school, I will do and NOT question. Desperation is a great motivator.
I'm making my own food, and here is my question - I LOVE MEAT!, so when looking at this diet, I was horrified but slightly encouraged, since I love eating red meat, chicken, turkey, it's a daily staple of mine. Honestly, the sugar is the hardest - since I have a taste for candy, love it - but can't have it.
Here is my plan:
- Chicken Soup (as described here - http://www.scdiet.org/4faq/starting.html) - I did it wrong on Saturday, will redo tomorrow. (used for lunch) - the broth gives me the runs, but I will persist
- Flank Steak Patties, lean - used for dinner
- Bacon - BURNT TO A CRISP - 2x a week
- One scrambled egg in the morning (I wonder if I should do this)
- Carrots (raw as a snack)
- Granny Smith Apple with the skin removed (still not great food for me)
- Going to make Jello tomorrow - based on online recipe
I need to learn how to cook more, but is this a good diet plan to have for the next month or so?
I would like to add some additional friendly food. I hate yogurt, so I'll pass on that. Not a big cheese fan - so I'm looking to other foods that fill those categories.
I'm worried that eating all that meat is not so good - but my current diet is probably a real reason why I feel so horrible. I'm at 181 lbs, I've lost 45lbs this year, down from 220 (which is good in a sense - but losing it in the fashion that I did, I would not recommend).
Thanks for your post, I'm holding out hope that this will improve things - and even if it doesn't, I will continue to fight and look for alternatives that work as well and are not drug focused.
I encourage all crohn's suffers to read her book, it will take you a morning to read through all 100 pages of narrative. SHE MAKES SENSE ... and when 80% of respondents claim improvement and lessening of symptoms I take notice (I'm a math major, so I love statistical info - however anecdotal it might be).
Thanks,
Will