Wednesday, August 13, 2014

Another year has started, Good bye.

I'm a bit emotional today.  My daughter's first day of school is today.  She's a sophomore now.  I feel like she just finished second grade.  I can't believe she is so grown up.  Taking advanced classes like geometry and biology.  Taking her third year of Chinese - a college course of Chinese so she will get college credit.  She is so smart and I am so proud of her.  She has an internal drive to well; to be her best. I admire that.

So it's a new school year and I've started the school year off by having blood work, stool samples and a CT scan of my abdomen and pelvis.  All came back normal, of course.  Well, sort of normal.  My CT scan showed that my colon/bowels are "flat" which is consistent with someone who has inflammatory bowel disease.  I asked my nurse practitioner about it and she said that it means my bowels are weak; worn out.  That kind of scared me.  It got me to thinking.  I'm sure this is because of the mass amounts of diarrhea I have, the cramping, the gas pains and stretching my intestines endure.  What will my bowels be like in another 20 years?  What if they cease functioning all together, what then?

My Crohn's is in remission right now.  I still have to go to the bathroom 7-12 times a day, but I guess that's just par for the course with me.  No one can seem to figure out why and they aren't treating it with anything other than Imodium, Lomotil and hope.  I continue to have stomach pain which has no cause and no treatment. They won't even give me pain medication for it. So that's it.  This is how I am supposed to live.  I'm done with tests, I'm done with doctors, I'm just done with it.  I'm sick of fighting and struggling and dealing.  I am just going to have to accept that physically, this is how I am going to have to live  If the stupid disability people would just get me a court date and give me my disability things would at least be a lot easier financially.  We'll see what happens with that - next year.

I realize I sound a little less than positive and encouraging and maybe I am.  But when faced with the knowledge that my life will physically never get any better, there is no treatment, no drugs, no surgery, nothing they can do to improve the symptoms,  it is less than encouraging.  It's downright sad.  I'm worried about how my body will continue to deteriorate over the years and how much worse I will get. 

I'm probably not going to blog much anymore, but I'll definitely keep the blog active so people can read it.  I know I have a lot of good posts that may help someone feel not quite so alone.  I just feel like since they cannot pinpoint exactly what is wrong, and can only tell me "It's not your Crohn's", it's a little silly for me to continue a blog about Crohn's.  So many others with actually flaring and active Crohn's/Colitis have blogs that are great.  They can discuss new meds, old meds, new treatments and diets, and all those kind of things that I can't.  I can only say "I don't feel good" and "I have diarrhea", so many times and so many ways before it gets old.  And I really have nothing else to say but that.  So this is the conclusion (for the most part) of Jenni's Guts.  I may post a few things now and then but unless it's something more than my not feeling well, you won't see anything new on here. 

I love you loyal readers.  I am so proud that this blog has had over 55,000 page views.  I'm grateful to my 118 followers.  You've made me feel important and loved.  Thank you for reading and be well.  Much love to you all!!

Jenni Schaeffer - author of Jenni's Guts Blog

7 comments:

Heather Varndell said...

Hi Jenni,
I'm so sorry to read this post. I'm sorry that you seem to be stuck in a kind of limbo with your health and I'm sorry that you won't be blogging anymore.
I've only just found your blog and was inspired to start my own because of you. All I can say is that I hope find some answers and relief
Heather

Jenni Schaeffer said...

Hi Heather,
I'm so glad you've started your own blog! Congratulations! My blog will always be here as a source and I will post new and exciting things happening - just not weekly/monthly posts. Thank you for such kind words. I wish you all the best and hope you are well. Much love - Jenni

Rachael E said...

Hi Jenni! Would it be possible to email you directly? -Rachael (Crohn's Dx Sept. 2012)

Jenni Schaeffer said...

Absolutely Rachael! You can reach me at lpnjls at gmail dot com anytime. Thanks for reading the blog. Be well!!!

naturally said...

Let me be the one to say that I apologize for all the pain, the doubt, the unrelenting trips to the doctors that you have to go through.

I understand every feeling that you are going through. My son dealt with bowel issues at the age of 5. And has for 5 years. It's been a long, long journey.

And there were days when I wanted to just throw my hands in the air, punch a doctor in their face, and just put the entire hospital on fire. But I didn't.

I learn that I had to take things into my own hands as his mother. And I started by taking him off the steroids. And that was the start to a beautiful journey to healing.

You have to believe and you have to know that there is an answer for you. You have to not give up.

You have to stand strong, walk by faith and work to make that faith come to. It's not going to be easy baby, but it can happen for you.

lori Harrison said...

Hi Jenni, I just found your blog and your goodbye post was the first one I read. I have been diagnosed with Indeterminate Colitis. If the symptoms return after I finish this cycle of steriods, my diagnosis will be changed to Crohn's Colitis. On behalf of all of us who are in limbo, I'm asking you not to stop blogging. We need someone to speak for those of us who who have no idea where they are, where they need to go, or what the next step will be. There is so much wonderful material available for Crohn's that sometimes I feel like the red headed step-child. Your post made me feel like I'm not the only one who doesn't have it all figured out yet.

Los Angeles Hospice Palliative Care said...

Hi Jenni, I have read your blogs hope you are doing well now. Things will get better for you and will go uphill