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Where Did I Go? (Sept 2018 Update)  

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VeganOstomy
(@veganostomy)
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Joined: 5 years ago
Posts: 1896
September 12, 2018 2:42 pm  

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. To start....

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.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


dawncw and john68 liked
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Linda
 Linda
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September 12, 2018 3:01 pm  

I am so sorry that you have been struggling with so many devistating things. I really understand and appreciate you sharing such personal information with the people you have been helping for so long! You have been an inspiration to so many and we appreciate you more than you probably realize. Please put your health first. I will be thinking about you. Thank you for being such a caring person and helping so many of us with our Ostomy journey. Sincerely Linda Fleig.


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cheathamguy
 cheathamguy
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September 12, 2018 3:13 pm  

Thank you so much for the update. I am very sad to hear about all the struggles you are having to live with. You are such an inspiration for the ostomy community and for those of us who might be joining that community. Put your health first and we will be thinking of you.

Sincerely

cheathamguy


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john68
(@john68)
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Posts: 1093
September 12, 2018 3:14 pm  

Hi Eric, Never thought I would have to tell Eric off! :-) Firstly their is no need for an apology! and secondly am so sorry to hear you have not been feeling well, and pray that an answer will be found soon. Events we have no control of are really hard to deal with and if taking some time back from making new content helps you to rest and give more thought to those personal circumstances you do it. VO carries so much information that the help still goes on! We are all united by a common bond and when one hurts we all hurt. Rest easy, take one day at a time and the very best wishes to all concerned.

ileostomy 31st August 1994 for Crohns


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Bago
 Bago
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September 12, 2018 3:56 pm  

Eric, no need to apologize for anything.  You have already served many ostomates with good information and a place to share ideas.   Hopefully there is a fix for your problem in sight soon.

I got a shinglerx vaccination  yesterday and they asked if I had any allergies to vacations.  I wondered if many people do and today I find that a friend has it.  I hope that you can beat this one too.

 

Bill
Ulcerative Colitis... Ileostomy June 2016


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Flynn Myers
 Flynn Myers
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September 12, 2018 4:03 pm  

Praying for you and yours! You are very good, brave and strong. May the good Lord bring you through these trials with His Grace, Love and Strength.


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Dawn
 Dawn
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September 12, 2018 4:27 pm  

Your first priority is your health and family. Prayers the doctors find answers and you have total healing physically and emotionally. I too am dealing with loved ones with crippling substance abuse. It’s Hell. Thank God you have great healthcare and try to stay positive. Thanks for sharing your struggles.


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Marcie
(@shulmjs)
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September 12, 2018 5:46 pm  

Eric, I have re-read --------  you have to many spokes in the fire.. and u did not put them in there!! take a f ew days off and get out and away a good week!!  a softer place-- your heart is broken in ways that you can not heal.. your illness and the mental being of life around you will continue-until one of them resolves itself.  Hopefully this is the shots that u received and has taken over...….. YOUR RESPONISABILTY is to YOUSELF !  you know this-- so your excused to exit for awhile-- you have to much pressure…….  let the tears flow-release some stress.....your exhusted my friend!! Time for a time out for you---------  

We will behave ourselves!!!!!!!!!! :-)  

ANd I am sure that others can answer my question………….  and I have a Dr.  

Sweet dream to you.  Marcie...……….

 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Raine
(@raine)
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Posts: 31
September 12, 2018 5:47 pm  

You  don't have to apologize,  we understand that life happens.  Your health has to come first and I hope you get some resolution soon.  Sending good thoughts your way.

Raine


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Marcie
(@shulmjs)
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September 12, 2018 5:59 pm  

after reading this------ I am NOT getting the hep-b or c. vaccine.  I have heard of issues of them-- this may be it Eric--?????? the flu yes. the pneumonia yes. but this is as far as I will go-- shingles?? been thinking to this one for awhile. 

this is horrible reactions Eric..... you got wiped out!!!!!!!!  hugs! M. 

 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Bubbles
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Posts: 244
September 12, 2018 6:08 pm  

Wow Eric so sorry you are going through all  this . 

 

I was told that peeps with autoimmune disease ( I have Crohns and AS ) that we should never get any type of vaccines etc..  An infectious disease doc told me this over 20 years ago . We should spread the word to help others . 

Big hugs , Bubbles 


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Dona
 Dona
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September 12, 2018 6:24 pm  

Eric, You have my ( and I know) all of our support. You have done so much for this community that it is impossible to ever thank you enough. Take all the time you need for yourself and your family.

Like John said above, VO has so much great content already that if you go awhile without posting  new stuff, it will still be better than anything else out there ( by a mile).

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Dona
 Dona
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Posts: 550
September 12, 2018 6:27 pm  

P.S. I just got the Shingex vaccine too, no problems. And I do keep up with all my other vaccines too. So thats not much help I guess. UC is also an autoimmune disease, so maybe it is something else.

All the best.. 

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Heidi
 Heidi
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September 12, 2018 7:36 pm  

Eric, no reason to apologize! You and your family are most important right now and I pray you all will find comfort and healing soon. Your content that you already posted was beyond amazing to help me Dec of 2017- may 2018 when I ruptured my bowel and emergently had a Colectomy and colostomy with no prior issues. Your content gave me the language to use with my doctors and nurses and understanding of products and their uses and helped me to advocate for myself in a world I was unfamiliar with. For that I am forever grateful and I have since had a reversal. As I work in a hospital, I have linked many others to your content and videos. I am sure there are countless others who are still being helped with your materials and we’ll look forward to when you are healthy again to resume. In the meantime, know that you are appreciated and thank you for the gifts you have already shared with us. Praying for you to feel better!


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sjlovestosing
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Posts: 105
September 12, 2018 7:52 pm  

Hi Eric,

I just came on board and read what's going on. Please take time to take care of  yourself - that is paramount. You cannot help others until you take care of your own physical issues. I do suspect that because of the Crohn's, the vaccines could be wreaking havoc on your immune system. 

It must be so difficult to watch someone you love go deeper and deeper into addiction and not be able to help in any way. I understand the situation you are in, but in a different way. Watching your loved ones die or suffer is not easy - you feel so helpless. All you can do is be there for them and pray that God will intervene.  I will keep you and your loved one in my prayers. 

Stella


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Carol McKenzie
 Carol McKenzie
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September 12, 2018 10:42 pm  

Hi Eric,
Please no apologies. You need to take care of your body, first and foremost! Your help to others has been invaluable...and I know will continue once you get your health sorted. I am so very sorry to hear of the family member who you so wish to help, but can’t. It is emotionally exhausting and painful. Please know that thoughts are with you!


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Valerie
 Valerie
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September 12, 2018 10:43 pm  

When I was sick, but before my UC diagnosis, I had a typhoid shot. The shot site turned into a horrible abscess and I got a 105 fever and was very sick. Be careful! Good to hear from you!


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Mrsmac
(@mrsmac)
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Posts: 1
September 12, 2018 11:02 pm  

Dear Eric,

No apologies, please!  You need to take care of the awful things happening to your body right now.  You have been such a remarkable support to ostomates in the past, and will continue to be (I’m sure) once your own health is under control.  Do not worry about about us now.  It is so very sad to hear of a family member who cannot be helped...or does not wish to accept help.  I am sorry for the pain this causes you.  Please know that my thoughts and best wishes are with you.


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Fred
 Fred
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Posts: 31
September 13, 2018 2:13 am  

Hi Eric,

It sounds like you are going through very difficult times and facing some big challenges. Your health, recovery and family are your number one priority right now and must be the center of your focus. We are here for you as you are always here for us and can provide you with support as you so generously do for us. Don't worry about us we understand.  I will keep you in my prayers. 


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VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 1896
September 13, 2018 11:25 am  

Thank you all for the love and support. 

I wanted to clarify a few points about the vaccines and reaction I had.

Firstly, I encourage everyone to have their regular vaccinations. At this point, my doctors simply don't know what specifically I've had a reaction to - maybe a specific ingredient is triggering things to go crazy, or maybe it's just my body not taking the shot very well. 

I've had Hep. B shots over the last few years without any problem - the two outlying vaccines that possibly caused a reaction need to be tested further, and I'll be doing that at a special clinic beginning in November. 

I will say that all physical signs (x-rays, MRI, blood tests, physical exam) show NO problems. Pain is there, but there is no apparent inflammation (i.e. Nothing indicates that my immune system is active). 

So we are still investigating what's going on, but I did not post what I did to scare anyone about having vaccines! The health department has been contacted both times I had a reaction, and both times they urged me to continue to have my regular shots. I agree with them, but I would like to identify which vaccines are more likely to cause a reaction in my body before I get any more shots in the future. 

These problems don't appear to be Crohn's related (i.e. I'm not in a flare), so that's a good thing. 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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