High Hopes

New plan.  Post before reading.  I get so into reading what everyone else is writing and then I can’t find the words to post about my own stuff.  So here’s the dealio:  As I mentioned before, I’ve been sort of overwhelmed with some things.  My parents were here a couple of weekends ago, which was great- they came specifically to help me clean up and organize my apartment (Trust me, I needed outside help!).  But I was so sick the whole time.  I didn’t want to eat, I didn’t want to do anything, I couldn’t sleep, and dang it, throwing stuff away is HARD for me.  It was work, just sitting there watching my mom go through stuff asking me if I was keeping this or getting rid of that.  So I was exhausted after they left.  Slept for like 24 hours after that.  (But my apartment looks much better now, less depressing, so thanks mom!)

Anyway, I’ve just been getting sicker and sicker.  Feeling crappy more often than not.  No appetite, losing weight, not sleeping, more pain.  I finally heard back from my surgeon who had taken my biopsy slides and history to a “conference” she has with other IBD specialists in the area.  They all pretty much agreed that I had chronic pouchitis and it wasn’t going away.  I could keep trying to treat it medicinally, but she (and they) felt like it was really only worth it if I needed that peace of mind of feeling like i had exhausted every single option.  They all felt that it would probably end the same way- needing to have the pouch removed and having a permanent illeostomy.

I had already decided after the miserable weekend with my folks, I was having surgery of some sort.  I am just too exhausted to keep going like this and to not be able to enjoy spending time with loved ones.  We moved to this town a year ago and I literally don’t know anyone here because I rarely leave the house.  No friends.  No family.  Just the hubster- who is wonderful and all, but ya know we need more than that.  So I’d been doing the research.  I spent a lot of time over at jpouch.org and I did a lot of research on k-pouches and the BCIR.  These are basically similar in that they still use an internal pouch like I have with my j-pouch, but instead of wearing an ostomy bag, you plug a catheter into it to empty a few times a day.  But no outside appliance to wear.  So it sounds pretty good.  But I can still get pouchitis with it and likely would since I’ve had it already.  The pouchitis might cause symptoms like cramping, stomach pain, and fatigue but I wouldn’t have to worry about urgency and continence anymore.  The other drawback is that there are only a few places that do k-pouches or BCIR.  And if I have a problem then I have to fly to wherever I had the surgery done intially to get it fixed.  So it could end up being costly and still not resolve some of my main issues, namely the fatigue.

So I had a lot of decision making to do there.  But I’ve decided the traditional illeostomy has the best chance to make me feel better so that’s what I’m doing.  (It’s possible I may be able to try a k-pouch later down the road, but that depends on different things.)  So Nov 7 I am having the surgery done.  When I come out of it, I’ll have a hole in my stomach with my gut sticking out and what they call a “barbie butt”.  Yeah.  They’re gonna totally sew up my back end.  Which, I think right now, is bothering me more than anything.  And it’s really hard to put words to it, but I think that when you’ve survived bodily trauma, you become extra protective of your physical identity.  And now, once again, I feel like life is just laughing at me right in the face.  Growing up LDS, you’re told “your body is a temple; that’s why you don’t get tattoos and piercings, etc”  But I feel like “God/life/chance/universe/whatever” has done more damage to my body than anything I have ever chosen to do.  At least when I get a tattoo or pierce my nose, or color my hair blue and green, it’s my choice and it comes from a place of honoring my body and the person who lives in it.

*sigh* I’m delving into a new topic there… anyway, bottom line.  Big life changes goin’ on, and I HATE CHANGE.  Do NOT WANT.  But such is life… mine anyway.

=-=-= For the record, I do know that some people out there have it far worse or have had similar experiences.  It’s not the end of the world for me.  It’s just tough going through and I need to talk about it somewhere!

I’m going to add this video.  The song has been in my head all day… it makes me grieve for lost innocence and lost dreams… and… just makes me feel so many things.

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5 Comments (+add yours?)

  1. kat
    Oct 20, 2014 @ 23:38:40

    im so sorry for all youre going thru. it does sound like you have been given a really heavy burden that you have had to struggle with for so long. im sure growing up LDS was very hard especially with all your physical problems. i think you have come to a very healthy place, where you celebrate you and your body the way you feel it should be done–with the color hair you want, the tattoo or piercing you want, it is because it is for you to decide what makes you happy. keep on staying in that happy healthy place 🙂

    Liked by 1 person

    Reply

    • kmaramarie
      Oct 21, 2014 @ 01:39:18

      Thanks Kat. It means a lot to see comments like yours and know that someone has heard you and cares about what you’re going through. It’s funny, growing up LDS really wasn’t hard, because I never questioned anything. I didn’t feel like I fit, but I always thought the problem was with me. I should maybe do a post about all that someday…! But yeah, I feel like more and more I am coming to a place that is about honoring my true self even if I am still trying to figure that self out! Thanks again ❤

      Like

      Reply

  2. ccchanel41
    Oct 21, 2014 @ 04:50:17

    I am so sorry kmaramarie. I really can’t think of too many situations scarier or life changing. I’m so glad you wrote about it. Please know we are always here. Even if you have to comment on ours and say hey check out this song on my blog. Like code for your privacy. We got this in email tonight so we will stop being overwhelmed.

    You mean so much to us. Sounds like you thought it through for yourself but every bit of support will be helpful. All our love and peace and good thoughts. Always here.

    Liked by 1 person

    Reply

  3. tfoz
    Nov 01, 2014 @ 04:54:36

    It must feel good to have made a decision! It’s tough to not know what to do. I hope the surgery goes really well and that you’ll have more energy and will remember to love yourself even more. : )

    Liked by 1 person

    Reply

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