James’s Story

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fecal transplant for severe ulcerative colitis proctitis success story

 

Where do you live?

I live in Zaragoza, Spain.

How old are you?

I am 31 years old.

What percentage better are you?

I would say around 80-85% (and expecting to increase these numbers in the following days/weeks).

What was your diagnosis and what treatments did you try before FMT?

I was first diagnosed with a mild proctitis. I was treated with mesalazine suppositories (1 gr/every other day) and I was able to control the disease for 3-4 months. I was living in Central America by that time but when I came back to Spain, the symptoms (pain, constant diarrhea, blood in the stool, general discomfort) got much worse. I went back to the doctor and that initial and mild proctitis had turned into a severe Ulcerative Colitis (UC). I was treated with steroids (prednisone). I was taking an initial dose of 60 mg/day for two weeks and reduced the dose gradually for over a month until reaching 0 mg/day, that is, no dose. I saw some improvement in my conditions but when I stopped taking prednisone, the symptoms came back and got even worse. Bleeding was more intense and I spent over a week in the hospital taking 4g/day of mesalazine orally and antidiarrheal drugs with no effect at all.

After leaving the hospital, I went back to the doctor and he doubted between prescribing me azathioprine or going for the biologic treatment. He finally decided to try azathioprine first. However, at that point, I realized that my disease was no joke and decided to do some research by myself. I spent days reading scientific literature about UC published in different journals and I did not like what I discovered. As a consequence, I refused to take that drug.

I found out that some people taking either azathioprine or biologic treatment developed serious side effects (I talk about some of them in a further question) that I was not willing to become a human experiment with myself. Moreover, some of the papers I read that were claiming that azathioprine worked in keeping the disease under remission, were financed by the pharmaceutical company that provided the drug. I was taught at college that science must be independent and objective and some of those papers did not meet those two requirements under my point of view. I could not believe that there were no other options to face the disease.

Luckily, I started to look at other options to treat the UC and I discovered FMTs, almost by chance, and that changed my life dramatically.

When did you have your first and last FMT treatment?

I had my first FMT by the end of May, 2014. Now, I continue doing FMTs at home using my brother as a donor.

How many FMT treatments did you need to see initial results and the results you have today?

I would say that after the first two weeks I was able to see initial and very promising results.

Were there other perpetuating factors in your illness or illnesses, or was
your only issue a bacterial imbalance?

I was also suffering from a serious anemia that almost required a blood transplant due to the great loss of blood I experienced.

Does your condition still need maintenance eg diet, supplements, medication etc to keep it in remission?

I am not taking any kind of medication/drug at the moment. However, I try to follow a paleo diet. That means no processed food. I try to eat vegetables, fruits, meat, fish, rice…etc. I also keep away from artificial sweeteners or anything with a label “diet” on it.

How and when did you first hear of FMT?

As a mentioned earlier, I heard about FMT when I was doing research for new ways to address the disease. That was by the end of April or beginning of May, 2014.

I discovered a blog (in Spanish) from an Argentinean doctor Dr Silvio Najt devoted to UC and Crohn´s disease. I read all the entrances completely and contacted him to do FMTs in Buenos Aires.

What factors did you take into account when deciding to do FMT?

By the time I was doing the research, I was completely desperate looking for a solution. As I said, those serious side effects of azathioprine or biologic treatments kept me away from those drugs and I decided to take a much more natural approach by doing FMTs.

Moreover, the extraordinary good information about inflammatory bowel diseases that I read in the blog I mentioned earlier also encouraged myself to try FMTs. Not to mention the absence of known side effects of FMTs.

What did your doctor/s say?

First, I talked to my gastroenterologist in Spain about FMTs and he did not recommend me to do FMTs. He did not give me a reasonable reason, just tried to discourage me from trying FMTs. I have never been so happy in my entire life for having disobeyed that doctor’s order.

What criteria did you use to choose a donor?

I did not have to address that issue since the doctor I chose to do FMTs on me already had his donors in the clinic. However, when I got back to Spain to continue the treatment, I chose my brother as a donor. The criteria used the ones provides by Dr. Najt who supervised the tests over my donor.

How did you approach your donor and what was that person’s response?

My brother already knew about my disease and FMTs. He agreed completely to become a donor.

What was your FMT experience like?

It was pretty good, actually. I did not feel any pain or any discomfort when doing FMTs.

Do you have any funny stories from your FMT journey?

I do not know if this is funny but I remember that the first days after doing FMTs, my depositions smelt like if they were not mine….Other than that, I do not have any funny stories, sorry!!

What was your darkest moment when you were ill?
What sustained you throughout?

I was going to the bathroom almost every hour. A lot of pain, a lot of blood in my stool, general discomfort, low-grade fever, severe anemia due to the loss of blood….It was like being in hell. I swear to God that if I had had a cyanide pill, I would have taken it to end my life. That bad I was.

Luckily, I soon heard about FMTs and that completely changed my life!!

What are the top 3 things you most enjoy about your post-FMT life?

  1. I am back to normal life. I enjoy that the most. I did not have a life during my flare-ups. Now, I have it back.
  2. Not going to the bathroom every hour….what a huge release!!
  3. I would like to help other people to spread the word about the effectiveness of FMTs in order to treat autoimmune diseases.

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?

When I first heard about FMTs I was sceptical too. I could not believe that poop coming from a healthy person could “cure” my illness or other autoimmune diseases. Besides that, I was also sceptical that only powerful drugs such as azathioprine or biologic treatments with serious side effects including suppression of normal bone marrow function, pancreatitis, an increased risk of developing lymphoma and the increased risk of developing skin cancer (azathioprine) or the development of tumours (biologic treatments) could be the only answer to treat my disease.

People should know that there are much more natural approaches such as FMTs (with no known side effects) to treat autoimmune diseases.

What advice do you have for someone trying to make a decision about FMT?

Go for it!!

 

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Categories: fecal microbiota transplant, ulcerative colitis

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4 replies »

  1. Hola James,
    En España es muy complicado tener información de primera mano sobre los trasplantes fecales. Los médicos no facilitan información y recurrimos a webs extranjeras. En el foro de colon irritable somos muchos los que tratamos de postear información sobre el tema, pero tu aportación sería tremendamente valiosa por tratarse de una experiencia personal. Te dejo el link del hilo de trasplante fecal por si nos quieres ayudar.
    http://www.forosii.com/foro/viewtopic.php?f=2&t=16796

    Mil gracias,

  2. Hi James,

    Great story. I am just wondering when you started: how often did you do the FMT? How many times a week? a Month etc. Hope you’re still reading this so you can answer.

    Thanks.

    Tom

  3. Hola, James, yo tengo siiD post infección de C.difficile, actualmente no puedo comer casi nada y me interesa mucho lo que has hecho….me da miedo que que mis síntomas remitan pero el desequilibrio que tengo dentro pueda volver a manifestarse….aunque de momento me conformo con que esto remita y pueda volver a comer de todo y llevar una vida normal…..

    Me cuesta mucho encontrar información y te agradecería mucho si me puedes echar una mano en eso….

    un saludo!
    Eduard

  4. Hi James, I would like to thank you for a brilliant and informative story! I too started with proctitis and now have UC —- I have joined FB/Mary Brown, see what I can learn there too…

    Warmest regards,

    Nikki (female :)

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