Ed’s Story

 

ed

 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. 

IEds word Jumble 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: 

Brown

Truly

Happen

Spiral

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

My initial story focused on the long term history of my disease.  This update will focus on the specifics of my FT journey and my current status.
 
I began FT in January 2012 and stopped in late May 2013.  Seven weeks later, some symptoms returned, and with some bad luck, it has been downhill from there, and I am now in danger of losing my colon.  I have resumed FT as well as other conventional treatments.  More on that later.
 
Here is my FT journey from January 2012 until now.
 
When I began my first course of FT, I was not in a flare but not completely normal either. I had been on remicade, 6mp, asacol and the occasional cortenema.   Any little thing would cause mucus or some blood. 
 
My first round of FT starting in January 23rd, 2012.  I did not flush out, do precursor antibiotics, prednisone, biofilm busters, flora supplements etc…
 
I did about a dozen FT’s over about 15 days.  After about a week, I noticed improved stools and a different smell.  I did one or two FT’s a week for two months and then stopped.  After eating a very small amount of problem food as a test, I immediately experienced some mild symptoms. I believe that I had not given my colon enough time to heal. 
 
I decided to do the full Borody protocol, which can be found on this site.  The antibiotics and flushing out made me worse at first.  At about day 7-8 my condition began to improve.  Formed stools, again with a different smell that got better over time.  After 3 months of feeling great and really zero symptoms, i phased out 6mp and asacol.  I continued FT twice a week for month, once a week for month or two then once or twice a month. i avoided problem foods for 6 months but consumed more fibrous food than in the past without problem.  I slowly introduced small amounts of problem foods with no issues.  At about 9 months i binged on as much problem foods as i could think of for about a week as a test. I did experience some mild symptoms and stepped up the FTs to two to three times a month for a month or two and dialed back the problem foods.  Symptoms quickly went away. I continued doing FT once to twice a month until May of 2013.  My GI doc friend suggested a calprotectin test to evaluate the level of inflammation in my body.  My score was 19- super low. I was ecstatic. It had been a year since my last intensive round of FT and I thought it was time to see if I was out of the woods.  
 
It was a mistake.  7 weeks after my last FT and after eating a small amount of problem food, some mucus appeared in my stool  I had been doing well. No other meds for a year.  It was time to see if I needed to continue. I inspect with a strong flashlight most of what comes out of me.  If I had not used the flashlight, no way would I have seen the mucus. A few days before I was out of town and ate a small amount of problem food, perhaps that was the cause.  As soon as I got near my donor. I resumed FT but no other meds.  My symptoms remained. This was late July and I had a normal every two year colonoscopy scheduled for 8/20. I decided to continue with FT’s only as treatment and  go through the scope knowing it would make my colon worse. 
 
The scope results were encouraging.  Only 5 cm of mild inflammation near my rectum.  The rest looked good, all biopsies negative. My GI doc prescribed canasa suppositories and recommend continued home FT. (my hmo only performs it for Cdiff) He also called me a pioneer, and that he felt that using FT to control my UC was less risky than all the conventional meds Ihad been on.  He also thought that  in 3-5 years, some form of microbiome treatment would be a standard option for treating IBD.  
 
The canasa and FT began to work and I especially noticed that my symptoms were most improved on days I was able to do both canasa and FT.  Then disaster struck. Something I ate gave me classic food poisoning symptoms. I got much worse, but my symptoms were tolerable.  I was unable to do many FTs due to my travel and the schedule of my donor.  My daughter had her big break in high fashion out of the blue and I was so overwhelmed that I kind of freaked out. (my 16 year old -from high school student to international model traveling Europe in a week’s time) The stress made me worse.  Then my local lunch spot decided to change ingredients in the sauce on a sandwich I had considered “safe” to eat.  The sauce was saltier and tangier. By the time I had finished my sandwich I had figured out that they added garlic salt. Garlic has made me bleed on several occasions.  It made me much worse to the point that I was having 10 bloody movements a day, unpredictable, accidents happen. I also had a cold with a high fever, multiple migraines and an old friend died all in the space of about 10 days.  My doc prescribed twice daily cortnenemas.  My condition worsened. 9.24.13 I started on 30 mg prednisone with no other meds. I got slight improvement on the very first day. I increased the dose to 40mg after three days because I had a trip planned with several other folks that I did not want to miss.  40mg was more likely to heal me enough to make the trip.  I also added mesalamine enemas once per day. I started to improve.  Fewer BMs and less blood and mucus. I was turning the corner. ‘the next day i got a migraine and took my usual med, imitrex.  I immediately got much worse. Double the number of bms, more blood and mucus, indigestion with every meal. I read the possible side effects of imitrex and found out that ischemic colitis was one of them.  I can feel that the UC has spread to a larger portion of my colon and started on 60 mg of prednisone with copious amounts Xanax to offset the mania and insomnia.    
 
Five days ago I entered the hospital for IV steroids, a liquid diet and observation. A flex sigmoidoscopy showed a hamburger colon.  I started remicade yesterday.  My hope is that the steroids and remicade will allow me to keep my colon in the short run, and perhaps do another round of FT when I am more healed. 
 
I have had a run of bad luck.  Absent the food poisoning, garlic incident and imitrex, I would most likely would not have had to go on prednisone. 
 
Points to remember
  • 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.
 I will consider anything to keep my colon, buying time for a breakthrough to be achieved. Of course there are no guarantees that there will be a breakthrough in time to save me from surgery.  I am 53,  I have decided to retire early, at 55 or 56, so that i can have as many good years as possible before the disease limits what I can do. 
 
Good health to you.
 

More Stories

How to do a Fecal Transplant Safely at Home


Warning: A non-numeric value encountered in /home/thepower/public_html/wp-content/themes/Newspaper/includes/wp_booster/td_block.php on line 308