After suffering from IBD since 1978, I am in remission (cured?) 10 months after finishing Fecal Transplant therapy.
In 1978, my senior year of high school, I first noticed blood in my stool. My first diagnosis of IBD, ulcerative proctitis.
My first med, azulfidine, gave me headaches, turned me yellow. Over time my flare ups became more frequent and more serious, however I still could eat most things and get my flares under control, although as time passed, I needed to use an increasing amount of meds, some with serious side effects.
In 1998 my symptoms worsened and I underwent my first round of Prednisone. My MD did not warn me of the side effects. I yelled at friends, family, co-workers, strangers. I could not sleep, had a rapid heartbeat and high blood pressure. Prednisone did stop my flare, but at a huge cost.
My disease went into remission. I could eat anything. Life was good…… for a couple of years.
It flared again 2002. I got a virus that was going around and ended up in the hospital for a couple of days. When you contract another bug while having a flare the effects are multiplied.
The 2004 2005 flare required more prednisone to get it under control- to offset the side effects of prednisone I needed up to 2-3 Xanax a day and sleeping pills and still only slept 3-6 hours a night, usually about 4.
This was the first time my GI doc recommended that I consider having my colon removed calling colectomy “a cure for UC.” My response? Colectomy is a fix, a last resort that permanently decreases the quality of your life. A cure means you still have your colon and it works normally. I should have fired him right then.
I was able to keep the disease in check without prednisone for a couple of years.
In late 2008 and early 2009 multiple high stress events tipped the scales and my disease spiraled out of control. My mother was in hospice. I am a financial advisor. Global financial meltdown while on prednisone drove me to take up to 7 Xanax a day, sleeping pills and I still slept about 3-6 hours a night. Again, my GI doc recommended I consider colon removal. At 3 weeks, the cumulative sleep deprivation, constant rapid heartbeat and emotional roller coaster were beginning to make me lose my grip on reality …..and i had many more weeks to go.
After 6 months my flare subsided, only to return, even worse 6 months later.
I asked the Dr about Remicade. He changed the subject and did not respond to my inquiry. At my HMO they cover the full cost of Remicade. 4800 every six weeks for who knows how many years? A huge cost for the HMO. My MD did again mention that surgery was a cure for UC. Clearly, he was more concerned about saving money for the HMO, than saving my colon. Surgery was a lot cheaper than Remicade. I decided to fire him. My new MD from the same HMO put me on Remicade. I was still on many other meds too.
On February 1, 2010, I experienced chest pain and had to leave work for the ER. It was not a false alarm. I had an irregular heartbeat. After a battery of tests, they could find nothing wrong. My buddy, a GI doc thinks that all the prednisone (gives me a rapid heartbeat 24/7) and cocktail of other meds were the cause.
Remicade finally got my flare under control, however, I still was sensitive to many foods. Any little thing seemed to set it off causing me to take cortisone enemas. My UC was in control, but not gone and could have developed into a full flare very easily. According to my GI MD, having had UC for so long and with it becoming increasingly difficult to control, the odds were very high that at some point I would need to surrender my colon.
The flare that never really went away started in 2008 and did not end until FT in 2012.
In November 2011, my life was not going well. I had had a falling out with my Ex and my daughter, my brother was very ill, had to put my pet down, and my UC had not gone away for almost four years. I went for a walk to clear my head, when I ran into my client/friend, Dr Glenn Eisen. He asked my how my UC was. I told him that it was still active and given that he knows my full medical history, what were the odds that I would need to have my colon removed eventually? He did not answer directly (which I took to mean that the odds were high that I would lose my colon at some point) but said there was hope with new research being done on Fecal Transplant.
I went home immediately and began researching it. There was not a ton of info, but what info there was made me decide to try it. Here was my thought process.
The science backing FT was promising but scant.
The risk appeared low.
Research was beginning.
I did not want to wait years for more data, and in the meantime have another devastating flare or worse.
The meds I was currently taking had significant risks and if I had to take prednisone again……..
My HMO would not cover any of the costs.
It would cost me about 2k.
Having your own donor decreased the cost and increased the convenience dramatically.
There was a ND in Portland, Oregon that would screen my donor and prescribe precursor antibiotics.
I would do it at home.
My first attempt ended in disaster.
I did not strain the poop thoroughly, unbeknownst to me; there were chunks of poop in my slurry.
With great hope, I squeezed the rubber enema bulb and the solution began to flow, then stopped. I squeezed harder. The tip flew off and my hand was flung backward by the force of the blast of poop gushing out of the bulb. A circular arc of poop sprayed over: my wall, bed, end table, lamp, phone, rug, floor, the fan sitting on the floor (I know)…..and me.
I was in shock. A moment ago my hopes were sky high, and now I had my best friend’s shit all over my room and me. Just then my biggest client called me on my cell to execute a 2 million euro/dollar forward contract that had to be done NOW. I took a deep breath and did the deal even though I was stark naked and literally DID NOT HAVE MY SHIT TOGETHER!
This was a bad idea, a sign that maybe I should quit. I was incredibly crestfallen, deflated, depressed.
I had no choice but to begin the disgusting, arduous task of cleaning up. It took me a couple of hours. Time to sit down for a break. I do the newspaper word jumble every day. Here is what the jumble results were:
What the F__? You gotta be kidding me. What are the odds?
The Universe had spoken: Shit Happens – in a circular arc no less. I needed to carry on, and tell the world too.
So here I am.
Update October 2013 – From Remission to Flare
- FT is not a silver bullet for most people
- persistence seems to pay
- other meds may be needed in addition
- there is tremendous interest from the scientific and pharmaceutical industries in the microbiome. There will be breakthroughs.