Where Did I Go? (Sept 2018 Update)

So many of you have emailed me or sending me private messages asking where I’ve gone lately. Thank you for the concern! I’m hoping this post will answer some questions.

First off, let me say that VeganOstomy is one of the most important things in my life, and new content is on the way (I promise!).

Members of my Community Forums likely haven’t noticed my absence since I am still active there. But a few things have come up that have taken time away from working on the website and being able to advocate the way I would like. I do wish to remain private with some things, but I’m comfortable enough to open up about these, so here it goes…

Earlier in the year, I had a health setback that’s created an extra physical and mental burden on me. I haven’t shared much about it because we’re still not sure exactly what’s going on yet.

So, back in February of this year, I received two vaccines: one was a Hepatitis B shot and the other was Prevnar 13 (pneumococcal vaccine).

Several days after the shots I started to get body pains, which worsened and spread over the course of several weeks and months. Well, after over a dozen x-rays, an MRI, blood tests and specialists, we still don’t know what is actually happening in my body.

And this isn’t the first time this has happened. Back in Feb 2014, I had the “TDAP” (Tetanus, Diphtheria, Pertussis) vaccine and experienced the same symptoms beginning several days after that one.

In that case, the pains lasted nearly a year and then went away. The health department was notified of this possible adverse reaction back then and they suggested that I continue to have regular vaccines.

And I did, without trouble, until this year.

But this time, the symptoms haven’t been going away. Seven months later and they seem to be getting worse. My doctor’s appointments are still ongoing and I have a special appointment in November to explore what triggered this (so I can avoid it in the future).

That said, these chronic symptoms have been draining and make it difficult to move with the energy I’m used to having. It also creates more challenges as I still have to maintain all my work and family responsibilities on top of that.

But I’m no stranger to physical pain and I’m generally able to persevere through it.

What’s really grounded me to a halt, however, is witnessing a family member, who I love dearly, struggle with substance abuse over the course of the last year and having no power to alter their course.

It feels like I’m watching someone drown ten feet away from me and I have no way of rescuing them.

This has taken a significant toll on my drive to help others. I carry a huge sense of guilt every time I plan to make a new video or write another article to help others while knowing the one person I desperately want to help is out of reach.

Please, accept my apology for this absence.

There has been so much that I’ve wanted to share with you, but social media has been a source of anxiety, so I’ve avoided it. And my newsletter – well, quite frankly, I’ve been embarrassed that I have so little new content this year when my goal was to have at least 30 new articles/videos done for 2018, so I haven’t sent out any newsletters for most of the summer.

If there’s one thing I’ve learned through the last 10 years of having Crohn’s Disease, and 5 years of living with an ostomy, it’s resilience.

I will find a way through this.

57 thoughts on “Where Did I Go? (Sept 2018 Update)”

  1. I found you on YouTube because my 95 years old father has had a stomia for 37 seven years now and I want to prepare myself to help him with it in case he gets to that point. Since he manages very well on his own, I have not yet crossed the threshold of intimacy it involves between a gentleman of that age and his 60 years old daughter. Your video has taught me a lot to understand what it involves. Thanks a lot.

  2. I’m sorry you are struggling right now with all of that.
    Never doubt you are a great inspiration to so many, including me. (Even contemplating a severe change in my “animal” diet after reading/watching you)
    I know you want to help your family member, I really do. I have several family members just like that. And it does take its toll on you. I was very close with a few of them until their drug/drugs of choice changed them ? I hope you can find peace with yourself. Bc I’m sure you have tried. It’s just that that person isn’t ready yet. I’m so sorry.

    Social media is a high level anxiety for me. I’d never be as brave as you to share what you have.
    Times are just too different now. And I’m not exactly PC. I don’t mean things the way they are taken and I get confused. I don’t like the feeling of knowing I hurt someone’s feelings just bc I got mixed up. I would never do it on purpose. And I’ll leave that there lol.

    As for your vaccines.
    I’m sorta new at all this. I’ve had symptoms for 15 years but was never believed until the last 6. And then only by 2 local small town doctors. My very wonderful GI and a fantastic general surgeon.
    On my very first appointment with the GI he warned me against getting ANY vaccine. Ever. I don’t really remember all of that conversation as it was a while back and many other health issues since.
    I don’t know your exact circumstances, but I know you know how to do much more research than I.
    I was told not even a flu vaccine, as it would buy me more time in the hospital. Something about crohns, crohns meds, and weakened immune systems. Said just bc they are not live viruses, it would still make awful things happen. If at a time I really had to have something to contact him first if not an emergent situation.
    I was a nurse for years, so ALWAYS kept up on the variety of vaccines. They were free. And supposed to make you not get sick, right?? It always made me ill. In all different ways. Weird joint swelling, not being able to move anything, like I was paralyzed, sometimes for hours. I could only cry. Sometimes severe diarrhea/vomiting. Anything really. But always after the vaccine. Again I was told I was just crazy. Making it up. Eventually Bc of my supposed psychosomatic symptoms I had to stop working. I stopped vaccines. And although I’ve been pretty sick, and some of the symptoms never fully went away after the various vaccines, I have not had those kinds of problems. And *knock on wood* I’ve not had the flu or anything in years. I do my best with hand washing, staying away from sick people, etc. Lots of disinfecting lol.
    After I met my GI and he told me to not get them, it all made sense. I’m sorry I don’t remember exactly why.
    I hope this makes any kind of sense. I don’t post all that often on anything anymore bc my mind changed too with the sicknesses. People say I don’t make sense fairly often lol!
    One last thing, I am a bit?
    However I was really truly sick. I had colon removed 9/11/18 and got my ileostomy.
    At my small hospital there’s only one RN who is also certified as the WOCn. She was on vaca. I was stuck in icu for 3 weeks having a bit of a tantrum and pretending none of this was really happening ?. I was dc’ed and am receiving home health. My reg nurse is wonderful, with basics. The WOCN I don’t care for.
    With your help from the blogs and videos, I just can’t describe how you’ve helped me, and I’m sure others. You’ve saved my life. I’m great now after surgery and a crohns flare 6weeks post op.
    Thank you!!!

  3. Dear Eric

    Among the things I’ve learned from you is there will always be setbacks of some kind, but your problem solving strategies and first hand knowledge in dealing with all sorts of Ostomy issues is what has been a guiding light for all of us. For that reason, I support your need to step back and figure things out for yourself and heal. I know the pain of watching a love one self destruct and reject all help. But find comfort that despite their difficult struggle, they knew you gave a damn. So be kind to yourself. I sent you words of encouragement and thanks for all that you have shared with us. This pause will hopefully serve as an opportunity to regroup and perhaps start a new venture for you.

  4. Hi Eric, sorry to hear about your troubles. You will get better. I am coming up on my 5 month ostmiversary, and you have been with me for all those months with tips and advice. Well I am here for youtoo. Hang in there, you will get better


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