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Jattzl
(@jattzl)
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Joined: 2 years ago
Posts: 59
May 8, 2017 3:08 pm  

I was following the thread on blockages and the more I read the more scared I became. I had my ileostomy surgery almost three years ago.  It went very well and i have been very fortunate with the lack of complications since.  I suffered indescribable misery for 15 years from progressive nerve damage of my digestive system because of the anxiety I have about the hospital and surgery.  I have a lot of anxiety about hospitals etc. You'd think the anxiety would improve after multiple hospitalizations and surgeries since I was 17 years old due to numerous complications from long term Type 1 Diabetes but the anxiety has actually increased. 

I get so much information, support and help from websites and forums but also fear. Does anyone else struggle with this?  Any advice on how to continue being involved in the community for the help and support without causing more anxiety? I think is is such an important tool.

48 years Type 1 Diabetes, insulin pump, CGM, neurological complications, retinopathy, and autoimmune CIDP. Nerve damage led to ileostomy in 1/2015. Joanne


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Kae
 Kae
(@kae)
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Posts: 56
May 8, 2017 3:19 pm  
Posted by: Jattzl

 This is really scaring me. I have never been given any information about blockages or hernias after surgery... I have a lot of anxiety about hospitals etc. 

I get so much information, support and help from websites and forums but also fear...  I don't know if that makes sense or if anyone else struggles with this.   

I understand all of this. It is really a constant struggle for me. I want to be made aware so I can use caution, but on the other hand I end up worrying constantly. I don't know what else to say other than that I understand as struggle with it too. 


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VeganOstomy
(@veganostomy)
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May 8, 2017 3:47 pm  

Many of us who've gone through chronic illness for years have developed PTSD. If you feel that could be the case, then a counselor or therapist might be able to help you.

One tip that I use for other forums is to only view threads that are relevant to my current situation. As an example, I'm not on medication, so there's no reason for me to view threads about horrible side effects (unless I feel I could add something valuable to that conversation). But at the same time, I may be reading about these bad side effects but might have never experienced them before - just like with blockages or hernias, not everyone will be at risk.

I also find that approaching forums is kind of like approaching news: We could read all the news in all the world and get upset about all the negative stories, but only a fraction of those stories actually have any impact on our own lives. It's better to narrow down which topics are relevant to you and explore them for entertainment. 

If you have questions about something you've read that's worrying you, just ask! I didn't know about most of this ostomy and illness management stuff until I started asking - but things were a lot scarier when I was NOT an active participant in the conversation (i.e. lurking). With clarification, some of these worries ended up simply being things that would never affect me.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Jattzl
(@jattzl)
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Joined: 2 years ago
Posts: 59
May 8, 2017 5:27 pm  

Kae -Sometimes that's all it takes is someone acknowledging and understanding.  Thank you

Eric, your insight and empathy as someone going through this has been and continues to be a great help to me.  I have seen a counselor through my chronic illness for most of my life and your diagnosis of PTSD is the same as the professionals lol!  It's all a part of our experience I'm afraid.

Again, someone acknowledging and understanding is another reason for the importance of this medium.  Thank you!

48 years Type 1 Diabetes, insulin pump, CGM, neurological complications, retinopathy, and autoimmune CIDP. Nerve damage led to ileostomy in 1/2015. Joanne


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Dona
 Dona
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Posts: 641
May 9, 2017 2:28 pm  

Jattzl,

I just wanted to offer my support. It is a challenging road. I find this place very helpful indeed.Its great  to have a place where one can get honest info in a calm manner. What Eric said is true, we do tend to focus on some stuff that most of us will never have to deal with. But, when we need help, its here.

Be well.

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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