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It has been nearly a year since I initially inoculated myself with hookwork and whipworm. I have seldom shared my experience with the community, and I apologize for keeping quite. I fear sharing a specific state of my health will only bring the complete opposite experience the next day. I am sorry. Until recently, I’ve had very little consistency.

Below you will find a graph of the last 6 months of my health.

The Y axis is the number of bowel movements I’ve had. The red at the bottom notes if that bowel movement had blood. The yellow triangle is when I did Humira. Also, from August 2010 – January 2011, although I did not consistently keep track of my data, my health was not particularly great and is fairly consistent with how I felt from January 2011 – April 2011.

In April, I began to experience some relief and consistency. After a sudden flare on April 12, I began a 5 day course of Cipro, 10 days of Flagyl and about 20 days of Cortenema. My symptoms subsided and I started to feel good.

On April 21st, I reinoculated myself with 35 hookworm and on May 6th, 500 whipworm eggs. I started to feel great. I was averaging about 6 bowel movements p/d and the previous 4 months of bleeding seemed to subside. I had more energy and was pretty happy. Most importantly, I had some consistency for nearly 2 months.

I had a scope performed on May 17th 2011. They found the worms in my large intestine (albeit sleeping) and a tiny bit of Crohns in my rectum. My anastomosis from surgery (May 2009) was completely clear. Almost no sign of crohns! This was huge. I was happy. I kept with my gluten free diet (which also means eating well cooked foods, no raw veggies, limiting insoluble fibers, sugars and staying away from anything processed and filled with chemicals).

At the end of June, on a business trip to San Francisco, I started to notice I had increased gas. Upon returning home, almost overnight, I started bleeding and going to the bathroom 15+ times per day. On July 1st, the immense abdominal pain returned (which I have not experienced since before surgery in May 2009). Finally on July 4th, so weak I could not get out of my bed, I went to the hospital. They performed another colonoscopy and found the entirety of my left colon in real bad shape. I could not believe the pictures. But the worms were still there (sleeping).

After a few days in the hospital, getting IV fluids, cipro and flagyl, I started to feel a touch better. I got checked out of the hospital on July 8th after having received a double dosage of Remicade. I went on Remicade a few years ago and it lost it’s effectiveness. I was told to give it another try. It seems to be working. I am home now, off of pain meds and SLOWLY starting to recover.

I am not sure what to make of the last year, I want to believe the worms helped, but there are too many other variables. So I have no conclusions, except that this disease is random. If you have questions, please ask and I’ll do my best to answer. And again, I am sorry for keeping quite.

The Whipworms were getting lonely so I introduced some friends: Hookworms. While the Whipworm’s from August have yet to make me feel better, I am still confident in this treatment path. I’ll be doing some stool samples in a few months to confirm both colonies.

The inoculation of Hookworms was incredibly easy and painless. I hope others will not fear this option. A few drops of water (which contain the microscopic worms) are put on a bandage and applied to your forearm. It itches a bit. I chose to do this at night. I took a benadryl and went to sleep. I woke up, took off the bandage and had a minor rash. The following is a series of photos from the inoculation:

I look forward to some positive results. I am still taking Humira and Llialda, which I hope to be off of by mid 2011. I also take 10,000 IU Vitamin D, Omega-3, and Iron (Ferro sulfate).

6:46pm August 27 2010: Shot of 1,000 Whipworm.

YES! I can hardly believe what just happend. I just drank 1000 whipworm eggs! Why? To put my Crohn’s in remission and start to live my life again.

I researched this a few months ago (wrote this post) and for whatever reason, I scared myself out of doing it.

Then a few months down the road, I was reintroduced to the idea and quickly convinced by a new friend’s positive experience. Furthermore, I joined this forum: Helminthic Therapy on Yahoo. This forum is filled with the most insightful people I have come across on health forums. The wonderful people that make up this forum are filled with knowledge and most importantly personal experiences. It has been incredibly helpful, and to all those looking to do Helminthic Therapy — it is a must read. Thanks to all of those folks.

I will periodically post updates here on how this treatment is going. In a few months down the road, I will be infecting myself with 50 hookworm.

Lot’s of news about Vitamin D recently. It is especially shedding tons of light on its relation to Autoimmuni disorders. An article came across my radar this morning, which provides an excellent discussion on Vitamin D’s relationship to autoimmune disorders like Crohn’s: “Mounting Evidence for Vitamin D as an Environmental Factor Affecting Autoimmune Disease Prevalence” by Margherita T Cantorna and Brett D. Mahon.

This is a link to the article.

The abstract:

Low vitamin D status has been implicated in the etiology of autoimmune diseases such as multiple sclerosis, rheumatoid arthritis, insulin-dependent diabetes mellitus, and inflammatory bowel disease. The optimal level of vitamin D intake required to support optimal immune function is not known but is likely to be at least that required for healthy bones. Experimentally, vitamin D deficiency results in the increased incidence of autoimmune disease. Mechanistically, the data point to a role for vitamin D in the development of self-tolerance. The vitamin D hormone (1,25- dihydroxy vitamin D3) regulates T helper cell (Th1) and dendritic cell function while inducing regulatory T-cell function. The net result is a decrease in the Th1-driven autoimmune response and decreased severity of symptoms. This review discusses the accumulating evidence pointing to a link between vitamin D and autoimmunity. Increased vitamin D intakes might decrease the incidence and severity of autoimmune diseases and the rate of bone fracture.

On a personal note, my Vitamin D level is 24ng/ml and the proper range should be at least 50 – 80ng/ml. I am currently taking two gel capsules of 5,000IU a day. Gel Capsules were recommended to me because of better absorption rates than pills. Usually doctors recommend to be over 30ng/ml, however that is an outdated recommendation that is based on treating rickets. As the aforementioned research shows, that is not enough.

Take your Vitamin D! Autoimmune disorder or not, everyone should take it!

I am considering Helminthic Therapy. Yes, infecting myself with hookwork to help quell my Crohn’s Disease.

First, let me give the “wiki definition”: Helminthic therapy, a type of Immunotherapy, is the treatment of autoimmune diseases and immune disorders by means of deliberate infestation with a helminth or with the ova of a helminth. Helminths are parasitic worms such as hookworms and whipworms. Helminthic therapy is currently being studied as a treatment for several (non-viral) auto-immune diseases including Celiac disease, Crohn’s disease, multiple sclerosis, asthma, and ulcerative. Autoimmune liver disease has also been demonstrated to be modulated by active helminth infections. (source: http://en.wikipedia.org/wiki/Helminthic_therapy)

I am strongly considering this treatment path albeit I need more information. Humira (Adalimumab), an anti-TNF, is currently the treatment being pushed for me. I am nervous to do more drugs with such intense side effects. I feel Humira is my last get out of jail free card. I’ve already taken all the other treatment paths (Surgery, 6MP, Lialda, Asacol, Remicade, Imuran, etc). They have all worked, for a small amount of time, and then my body develops anti-bodies. They stop working, and I get sick again. Ready to move on with life. I have tried alternative paths such as acupuncture, herbs, meditation and yoga. Yes, they all work — especially when you’re healthy. But they don’t get me out of a flare. I am ready for something new. With some science, but still a bit fringe is OK.

I off course decided to speak to my doctors. Both have suggested against this, but have not offered any substantial reasons. They admit, the don’t know much about the treatment. They think Humira is my only option, and my time is running out to my make decision.  I need more info on Helminthic therapy and would love to hear from you. I would have already taken this plunge if it were a bit more affordable, however, it is a huge financial decision. I appreciate your help.

What is your experience?

A few resources:

This is an excellent and recent research article by Tufts Gastroenterologist Joel Weinstock || http://bit.ly/9bH2Pv

A NYTIMES article on the topic: Scientist at Work – David Pritchard – Scientist Studies Whether Hookworms Can Protect Against Allergies – NYTimes.com http://nyti.ms/bXy3rs

RadioLab, more entertaining, but still informative: WNYC – Radiolab: Parasites (September 25, 2009) http://bit.ly/4BXBxX (and here is the most recent follow-up: http://bit.ly/dBYFMK)

Wikipedia on Helminthic Therapy: http://bit.ly/9tGBXR

Jasper Lawrence’s distribution of hookworm: http://bit.ly/9oOPKa

The agent which was used for the aformentioned research study is made by a company called Ovamed: http://bit.ly/cA8oEB

(photo credit: http://www.usuhs.mil/mic/Davies/Research.html)

This is an interesting article I came across today. Essentially, it is a wireless robotic pill, controlled by a physician via remote, that can navigate through your intestine.  Although this is framed in colon cancer research, the pill could really change the way Crohn’s Disease or IBD is diagnosed. And it could also make a colonoscopy much easier on people.

Here is an excerpt:

The pill, which contains a tiny camera, is also fitted with tiny legs that can be activated remotely once it is inside the colon or intestine.

The legs protrude outwards and are movable in order to make device to ‘crawl’ inside the patient like a spider. It can be moved back and forth, giving doctors more flexibility during the examination.

Read the full article here. Source: Telegraph.co.uk

It frustrates me when people say they are on a Gluten free diet (or diet in general). Diet, the way society has come to know the term, indicates a temporary alteration to ones normal food routine.

As Crohn’s lifers, we are always bombarded with finding the right “diet” in order to stay in remission or avoid exacerbating our flares. I have found that a “diet” is not the best outlook. It is much harder to stick with a diet when we keep it as a foot note to our lives. Defining what you eat as part of your lifestyle takes a lot of the pressure off. This is what I have come to know since I decided to go for the Gluten Free lifestyle.

My uncle (he is a doctor) was pressuring me for over a year to try it, and I was quite reluctant. Every single Gastroenterologist I encountered told me diet did not matter. I always questioned the docs and followed by my skepticism they began to cite research studies that show no causation. I like my doctors a lot, but this is a disconnect that I don’t understand. Through the years, this has kept me eating whatever I want and not thinking twice as my Crohn’s got worse and worse.

Although studies show that there is no shown causal effect of diet on Crohn’s, we can all agree that there is a substantial difference when we put garbage in our bodies compared to healthy and fresh food. I know we are all very different, but being conscious of what we eat is an important part of feeling better with Crohn’s. That is how I ended up starting and sticking with a Gluten Free Lifestyle.

The three books that influenced me most were Michael Pollan’s The Omnivore’s Dilemma, Douglas Graham’s Grain Damage: Rethinking the High-Starch Diet, and most importantly Danna Korn’s Wheat-Free, Worry-Free: The Art of Happy, Healthy Gluten-Free Living.

Pollan’s book does not have anything to do with Gluten Free, but it is a good read about food in general. Graham’s book is small, quick and gives a simple yet intriguing perspective. Korn’s book was the game changer. Korn has a very simple way of explaining things, and she takes the reader on an excellent journey through understanding the lifestyle. Although it is framed in the context of Celiac Disease, I know Crohn’s people can relate.

So, I have been Gluten Free since March 2009. 8 months and has it helped me with my Crohn’s? Honestly, I don’t know. But it has had a substantial affect on the way I think, which in turn affects my physical state. I have went about most of my life just eating without thinking. If something looked good enough, I ate it and if it looked really  good I was definitely going to eat it. I did not think twice. Unless I was in the middle of a flare, I was eating whatever I wanted.

Exit gluten and enter food consciousness. The greatest impact that the gluten free lifestyle has had is that now, prior to eating, I always ask myself: what am I about to put in my body? It is a quick mediation on your body and your life. This in and of itself forces me to make better decisions about what I eat. Making good decisions makes my stomach feel better. I feel less bloated, I belch less and I don’t have as much discomfort.

The question remains if I made healthy decisions while eating a glutinous diet, would it be the same. I don’t know, but that lifestyle did not work for me and this does.

Do I cheat?

Not on purpose. At home, I try to be meticulous and make sure every ingredient I cook with is in fact Gluten Free. It is a lot more challenging when I go out. I try to cook at home as much as possible otherwise I try to be careful when I am eating out. But it does not work. I assume marinades and dressings are gluten free, but I am often wrong.  And I still do it. However, more and more places are starting to cater to a gluten free lifestyle.

The one problem I encounter with Gluten Free is that I end up eating more sweets. Since I can’t indulge in most desserts with friends, when I get an opportunity to have ice cream or a chocolate bar, I end up eating more than anyone should. This is a problem that I am really struggling with. I don’t know how to fight the urge.

I have more to say, but I will leave it for another post on Gluten Free. What about you? Are you Gluten Free? Do you have Crohn’s and has it helped you?

To be honest, this is a selfish initiative.

I am 22 and was diagnosed with Crohn’s in 2007. Since the onset, I have been (passively and actively) searching for a place to channel my thoughts. A blog seemed like the right choice.

Social media is a big part of life, and I actively avoid using it in relation to my crohn’s. I want to change that. I want to connect and open up.

I hope by helping myself I can help others. I have gone through a lot in the last few years and it has dramatically changed the course of my life, time and time again. I am not an expert in Crohn’s, but a lot has happened.  Since Crohn’s hit me at 19, during my sophomore year of college, it has shifted my mentality. It continues to change my mentality. I did not want to talk to anybody about this for a long time, and I still struggle talking about it. My friends are incredibly supportive, but most of them struggle with understanding what I am going through and consequently tip toe around the subject. My family is incredible, and I love them for their support. Unfortunately, they have been scared from my diagnosis in way that increases the challenge of Crohn’s. I have never been to a support group.

And here I am. I hope this blog will facilitate an open space for all of us.

Lastly, I do not have a structure for this blog, and my details will be anachronistic. My goals:

– Be open and honest. Ask questions.

– Talk about my past.

– Talk about today’s feelings.

– Post recent happenings in the world of Crohn’s.

– And connect with you.