Going to Hawaii instead of Hospital

Well I cant really advocated med-free anymore. I was up to 200 lbs and taking absolutely nothing for UC and eating everything when a sudden killing flare came along. Nothing stopped the 30 bleedings per day that went right thru the night. One month later I was on 100mg prednisone and it did not stop the bleeding I was already falling thru 160 lbs.

We were all set for 5 days hospitalization and Solumedrol ( I.V. prednisolone ). But the out of pocket was not going to be $300 it was going to be $5000 dollars this time and that is a trip to hawaii so there was no way I was doing that. I began to think about next steps such as Remicade and Human Probiotic Infusion.

I went on a research tear, printed it out in color and met with my GI doctor. So I convinced my doctor that mesalamine in any form is bad for me and got only 12-17% improvement on people after you subtract the high placebo factor ( yes people getting the real pill or not are VERY motivated to get better when they have UC ).

He switched me to sulfazalazine at my request.

I showed my research on Mebeverine and its dual action in the colon. Unfortunately its only available in Canada so he gave me Librax. He for the first time said I was 'stuck' and discussed my diet, he told me to get lactaid and just eat shakes. I try to only eat one in a row and then every in between meal is real whole food meal with 1 can of spinach.

The difference was not overnight it was immediate, that evening. I am on 5 prescription medications the dread, dying, pain and nausea are gone. I stopped counting trips to the loo each day. In less than a week I am up to 170 lbs.

It was quite grim and to go 180 degrees is really stunning and I am quite happy.

I have a large box of supplements that may help with mild flares but are no match for killer flares and I am retiring this box, I have a couple rows of healthy things I still take based on the research I believe will they also apply to me.

Happy my doctor was willing to have a really meaningful discussion, listen to me and change my meds, I will be thanking him very soon. Very cool to have him in my corner. When I am healed I will begin moving towards Human Probiotic Infusion to see if I can get a longer lasting break from this disease.

Well I was doing so well with packing on muscle and eating anything I went back to gallon jugs of regular milk and protein shakes. When the flare struck I cut out the milk and used water or plain yogurt. With the lactaid which was no miracle in past flares I am drinking a 1/2 gallon a day with Elite protein which beats my old brand because it has lactose enzymes too but NO sucralose just stevia.

I am aware of the spinach following and when I was constantly bleeding I could see spinach came thru without offense and had consistency. I loved canned spinach when mom served it as a kid. Now I like it with 5 eggs cheddar and mozz plus butter. Learning new ways every day.

I would say its the RECENT diet modification but more so the RECENT addition and substitution of LIBRAX and SULFASALAZINE. Because *nothing* stopped the blood prior to that. Immodium slows the small intestine from spraying food into the victimized large intestine. Librax stops the large intestine spasms. SULFASALAZINE is anti-inflammatory. All of this slows transit and allows the gut to heal.

When I took mesalamine enema a quart of blood came out and really disturbed me after I already did not like lialda, apriso, asacol etc.

Cortisone enema's are helpful but really impractical, sharp needly thing that has to navigate a turn, emptying the bottle is skill in itself and if it is done at the wrong time it just gets pushed out and 10 bucks goes down the drain if your paying yourself.

I was told to use immodium liberally after stool tests were negative, I have hycoscyamine ( near worthless ), VSL#3DS and the assortment of fish oil vitamin E and DHEA.

As I heal all of these will be scaled back, I will keep LIBRAX and cortisone enema's on hand for an emergency flare start and probably take SULFASALAZINE forever unless I find some research that suggests is not healthy.

It is partially diet because I cheated a lot today and had a lot of comfort food that was not a direct violation, but I am not bleeding and went under 10 times today, ( new meds are good ) from here I will make may way out of this but 3 days of increasing health signaled celebration time for me. It has been a tough month long backslide. Next hospital check is 10 days away by then I'll be down to 30 mg pred, couple solid bm's a day and packing on weight. No rush, this takes time to heal.