Where do you live?
Lexington, Kentucky, USA
What percentage better are you?
What was your diagnosis and what treatments did you try before FMT?
In November 2010 after my first colonoscopy the Doc gave me the diagnosis of Ulcerative colitis. He sent me home with a heavy dose of steroids, antibiotics and 5ASA. The oral meds I was sent home with just were not strong enough to knock down the flare so after a couple weeks of uncontrolled frequent bathroom trips, nausea and bloody bowl movements, I was admitted to the hospital where I would stay for a week in a half trying to get a grasp on my symptoms through the use of heavy doses of steroids and antibiotics. The docs were considering putting me on the “the big gun” drug. I was pretty opposed to move up to the higher class of drugs (Remicade, 6MP) and tried to avoid them.
After being discharged from the hospital, I began having some recurrence of my GI symptoms after a Thanksgiving meal, I would spend that night curled up in pain throughout the night, spending much of it in the bathroom. The next day, November 27, I was readmitted once again on the same drug cocktail, but this time a higher dose of IV Solu-Medrol 120mg. This is a superhuman amount of a synthetic glucocorticoid, which no human should have to experience. Mood swings, hot flashes, puffy face, acne and insomnia are just some of the side effects I experienced. The fact that I was not responding favourably to such a high dose of steroids illustrates just how bad of shape I was in during this time. I didn’t seem to be responding to normal treatment. I lost 40 pounds and was down to 120 pounds at 5’11”.
My disease went into remission a few days later with the help of my gastroenterologist and a heavy dose of drugs. I was for the most part asymptomatic and stayed in remission until about 6 months then I had my second flare. The doc treated me in the same general fashion with the oral steroids and antibiotics. This time around the treatment had little or no positive affect.
I had always had a preconceived notion that diet likely had a large impact this disease (gastrointestinal tract’s main purpose being the assimilation and elimination of food). This is when I began to start tinkering with my diet. I found the most promise in a diet called the Specific Carbohydrate diet by Elaine Gottschall, a biochemist and mother determined to find an alternative to surgery for her little girl with UC that was unresponsive to standard medical therapy. A few weeks after starting the diet I had an 80% reduction in my symptoms and my first solid bowel movement in quite some time. I began sleeping better though the night and my skin began to start clearing up and I began to start putting weight on again.
After being on the diet I slowly noticed my symptoms returning. At the beginning of this year I was once again in another full blown flare. For some unknown reason the diet stopped working after 2 years, I have a few theories, but clearly the diet alone was not enough.
This particular flare was different than my others, I responded to prednisone but I was unable to come completely off of it without my symptoms coming back. After being on prednisone for 5 months I decided to start investigating FMT.
Since FMT seems to be most effective when the gut is mostly healed here are some things I did before that seemed to help. I had a food sensitivity test done, which revealed I was very sensitive to eggs, a food I had been eating daily. Another thing that has helped me is removal of nightshades and nuts from my diet. Remained on a low inflammatory paleo diet. I also started LDN (low dose naltrexone) a few months before FMT, which seemed to calm things down prior to starting FMT. I did a couple of weeks of natural antibiotics (berberine) and a 10 day round of prescription antibiotic (metronidazole) to help colonization of the new bacteria I was about to introduce to my system. The antibiotics also helped calm down my flare.
When did you have your first and last FMT treatment?
I started FMT 5/16/2014 and did them for 3 weeks about every other day. I did a follow up FMT roughly 6 months later 12/3/2014 and did them for about 3 more weeks every other day. This frequency seems to work well for me.
How many FMT treatments did you need to see initial results and the results you have today?
I saw results the first day I did FMT. Three days before my first FMT I had a colonoscopy that had sort of messed up my system. The day after my first FMT, I was having completely normal bowel movements. Three days into FMT I was able to taper completely off of steroids without a recurrence of my symptoms. I’m still having near perfect bowel movements and no pain.
Were there other perpetuating factors in your illness or illnesses?
After being on prednisone for so long I believe that I may have had some adrenal suppression, making it even harder to come off of it completely because I suspected my body had lost the ability to make sufficient amounts of corticosteroids (cortisol).
Prior to starting FMT I had a Metametrix (now Genova) stool test done and noticed I was particularly low in clostridium, this is what got me thinking along the lines of FMT to replace those key species that are not replaced from probiotics.
How and when did you first hear of FMT?
I saw it on the news not long after my initial diagnosis but never really considered doing it but I kept it in the back of my mind as a treatment. As time went on and I learned more about it, I became more open to trying it.
What factors did you take into account when deciding to do FMT?
I was nervous to ask my donor as I felt like I was such a burden. Also, I was not sure if I wanted to spend all the money and time to get my donor tested and all the supplies to do FMT. After considering the cost of Remicade (almost 30,000 a yr) and the side effects of 6MP (elevated liver enzymes, cancer etc) I thought I would be foolish not to mark FMT off the list of things I have tried first before moving to the higher class of drugs.
What did your doctor/s say?
He was very convinced in the power of FMT as he had done them before, for C.diff not UC unfortunately, but it was still good that he was supportive of my decision. We actually had a long conversation about the potential benefits of restoring the microbiota.
What criteria did you use to choose a donor?
I had a very difficult time finding a donor who I thought was even relatively healthy. I had actually given up on the idea completely, until I decided to sit down and draw up a family tree to see if I had possibly missed someone who could be a potential donor.
I choose my donor because he had very healthy skin, no acne, he was an ideal BMI, rarely sick, smart, active, and while he did not eat anywhere near as healthy as I do, he did have a pretty diverse diet consisting of many different types of foods.
How did you approach your donor and what was that person’s response?
By the time I presented the idea to them, it was clear I had done plenty of research. Being family I think helped quite a bit because they witnessed all the hardships I have went through with my disease including the week and a half I spent in the hospital so I think they were glad to help me out. I feel blessed to have someone willing to partner up with me on this because without a donor this procedure would be impossible.
What was your FMT experience like?
It seems like it would be a quick easy thing to do but it was quite a bit of work getting the ball rolling and getting my donor tested, getting my doc on board and getting my donor and I schedule lined up. It was all worth it in the end though.
What was your darkest moment when you were ill? What sustained you throughout?
When I was first diagnosed with ulcerative colitis and I had spent a week and a half in the hospital only to be discharged and back into another flare 6 months later. If the struggle I dealt with the first year of being diagnosed with ulcerative colitis taught me anything about how my life would be with UC, I knew it was going to be difficult. This is the point that I decided something has to change. I must do something about my health because I couldn’t live my life around my symptoms and I was tired of the nasty side effects from the prednisone. After changing my diet and seeing a drastic improvement I felt empowered and made it a mission to get myself healthy no matter what it took. After I changed a health behaviour I began to feel like I have the power to improve other areas of my life and I begin to feel less hopeless and more self-sufficient. It’s this mindset that got me to try FMT.
What are the top 3 things you most enjoy about your post-FMT life?
- Not being on steroids (prednisone)!
- Being able to put weight back on.
- Avoiding the powerful immune suppressing drugs.
What advice do you have for others to deal with the fear and (perceived) risk about FMT, in the face of scepticism from treating doctors, friends and family?
If someone were to do a risk benefit analysis on FMT done correctly verses Remicade (infliximab) or mercaptopurine (6MP) or surgery it would be so blatantly obvious which one is safer and possibly more effective in the long term.
What advice do you have for someone trying to make a decision about FMT?
Many of the diseases we face in this country are a product of our lifestyle and environment. Ulcerative colitis seems to be associated with the western diet and is virtually non-existent in more primitive cultures. Simply doing FMT and expecting it to cure all your problems is probably very unlikely if you do not address all the other underlying perpetuating factors of your disease such as diet, sleep stress etc.
If you would like to know more about me, I started a blog to write more specifically about what treatments have and haven’t worked for me in hope of possibly helping someone else.