Posted 2/24/2013 3:14 PM (GMT 0)
Hi Folks,
It's been a while since I've been on here. I had gone almost all the way into remission with a Paleo diet and so I didn't have a lot of need to surf around this forum. What I didn't know is that "almost all the way into remission" is not good enough and I was a walking ticking time bomb. That bomb went off last summer. I wanted to share my story with you in case someone could be helped. It has a happy ending!
On the heels of a stressful two weeks of travel for work I was flaring up a bit and on top of that I got food poisoning while camping. Everyone got it. But not everyone had UC, like me, and was started down a path toward digestive disaster. Within a week I was barely eating anything since everything caused stomach bloat and pain and I had constant diarrhea and blood, but it wasn't alarming yet. Which is hilarious because only someone with UC could think that wasn't alarming. I started taking some medication I had in the cupbord. Medication that had always worked before. It didn't work. Then I started throwing up every time I went to the bathroom. Uh oh. My doctor put me on 40 mg steroids. It didn't touch it. I was hospitalized finally about three weeks after the food poisoning incident. I was a dehydrated mess and I was in constant pain. I had lost 10 pounds. I couldn't eat.
The hospital doctors wanted to try Remicade. The first infusion didn't work. I was hooked up to a feeding IV since I now could not even drink broth. I waiting the two weeks for my second infusion of Remicade, because the doctor said sometimes the first one didn't work but the second did. I was on maximum IV steroids. I continued to lose weight. I was bleeding so much, even though I wasn't processing food, which means my colon was just oozing blood. The second infusion didn't work. I had a couple of blood transfusions.
All of this must sound familiar to some of you. But this is where the fun starts and my treatment veers from everyone else's. The doctors insisted I needed to have my colon removed. I KNEW there had to be another way. I was not responding to any UC medicine, but they wouldn't discuss what I thought was the most important thing, the question of what triggered this meltdown, and what if that problem was still going on inside me? In other words, give me some darn antibiotics to flash kill the bacteria that started this whole mess in the first place. "Absolutely not" I was told, "We don't work that way." I had now lost 30 pounds in one month. I am 5'4".
I transferred hospitals and put my life in the hands of a great doctor who was experimenting with fecal transplants. Mostly for C-Diff, but he was willing and excited to give it a try with me, because he thought it was a way of allowing him to give me the dangerous antibiotics I was requesting. It's extremely dangerous to kill all of your gut bacteria. You open yourself up to serious problems, like C-diff, which can be very deadly. But what if you can a complete, healthy bacterial eco system implanted immediately following the antibiotic therapy? A SUPER pro-biotic, if you will.
Now, just so you know, I have subsequently learned that antibiotic therapy of the kind I received used to be common practice for UC, but now not only does no doctor talk about it, they flat out refused to administer it to me when I begged to try it. Since now I know this saved my colon I am outraged that this has been taken off the table for us UC sufferers. The explanation I always got was, you can live without your colon. Yes, you can live without it, but, it does impact your quality of life to lose it. And patients should, in the end, be in charge of their own decision making.
Two days after receiving my first dose of nuclear bomb antibiotics I stopped bleeding. Taking the antibiotics was no picnic. They made me desperately sick, but all the while they were curing me. I was on the first course for two weeks, then got a fecal transplant administered by colonoscopy. My donor was a guy who my doctor uses for all his cases, whom he tests regularly for diseases and possible pathogens. In the end I went through three courses of these antibiotics with a follow up transplant. Each one made me a little better than the last.
It took 5 months from beginning to end, and I finally turned the corner into "recovery" and am going to be 100%, colon intact. Yay! I am still taking Remicade, and I have had to ween very slowly off the steroids so I'm still on 2.5 mg's every other day.
Again, it's interesting that a whole group of hospital doctors refused to give me antibiotics. I have never read about the kind of antibiotic therapy I received nor has any doctor ever told me about it (except my new doc). When I was desperate in the hospital, trying to logic out what my treatment should be, I requested antibiotics only thinking I might still have some pathogen from the food poisoning, and they refused. I had had no idea it used to be common practice to use them for UC, I was completely focused on a possible pathogen. Why, when we get new drugs, are the old drugs deemed unusable? When you are battling for an organ everything should be on the table before surgery. Including taking the risk of getting c-diff.
Anyway, that's the whole story minus a lot of terrible details. :)