Stupid semi-colon anyway…

Frustrating day!  My husband was off work today.  (BTW, I finally decided how to refer to him on this blog- he will now be known as Smikel, which has a fairly uninteresting story behind it, but it works for the purpose of this blog, yay!)  So anyway, we had big plans to work on the house.  And it needs it because I take care of my house like I take care of my issues.  (Press IGNORE.)  But I slept all day instead.  He played Diablo 3.  Which is ok because he needs a break sometimes too, but it’s hard not to feel a tad guilty at the end of the day.

So then I finally got around to checking my voicemail.  A message from my Colo-rectal Surgeon.  Wait.  I need to back up.  I’ve written some of the history in previous blog entries, but long story short- I have Inflammatory Bowel Disease.  I had a series of surgeries starting 2 years ago to remove my colon and create what’s called a J-pouch.  I’ve done ok, but have not been able to return to work, start a family, or generally get out of the house very comfortably most of the time.  I’m on a lot of medications just to get the functionality I have, but it’s still not letting me get back to a semi-normalish life.  So I’ve been pushing my docs for that.  My GI doc says that I should be doing better, so 2 weeks ago I had a scope of my pouch.  We both expected it to show tons of inflammation and problems, but it actually looks pretty good.  Best it’s ever looked.  So he said that it might just be the way my pouch is, but he didn’t see any pouchitis- which is basically inflammation of the pouch.  He’d taken some biopsies and said we’d go from there when we got the results.

He called me last week and said the biopsies are showing some pouchitis.  I’m already taking the meds they would treat that with (Humira, Buedesonide, and Flagyl/Vancomycin/other antibiotic) so he said we could try switching from Humira to Cimzia or it might not hurt to check in with my CRS to get a surgical opinion.  So I called her office, and she was actually able to get me in right away.  (BTW it’s a 4 hour trip one direction to see my GI and 4 hours in another direction to see my CRS.)  She initially didn’t think she could help surgically unless I was ready to opt for an ostomy.  She said that any biopsy of a pouch would show pouchitis, so she didn’t feel that was really a concern.  Then she did the good ol’ “finger-check” of my pouch and decided that I still had a lot of rectal cuff left.  They used to take these out completely and hand-sew the j-pouch, but now the standard practice is to leave a few centimeters of cuff and staple it.  For some people this means they can still have Ulcerative Colitis in the remaining tissue.  So she said it was possible that doing a “pouch-advancement” – going in surgically to remove that last bit, then hand-sew- might be helpful.  She warned me that it is a difficult surgery and recovery.  And from what I’ve researched on it- yeah, looks painful.  But I was ready to commit to it if it might help.  It is possible that this surgery can cause problems with incontinence, but I figure if I’m only steps away from an ostomy at this point, there is little to lose anyway.

So I’ve been feeling pretty optimistic about this surgery for a few days now.  We had it scheduled for Nov.  TODAY she calls me and the message is that she talked with my GI doc who feels the problem is with my pouch and pouchitis and so they’re not sure the surgery is going to help.  To be clear, I feel like my doctors have generally been pretty great.  And I actually appreciate that my CRS felt like she wanted chat with my GI before fully committing to the surgery.  My frustration is in being told- “Nope.  No pouchitis.”  “Well, maybe a little pouchitis.”  “Pouchitis is the whole problem!”

So now, I am frustrated and confused, have no idea which direction I should be looking to get healthy.  And it takes these guys so damn long to do anything.  Appointments are always scheduled “in a month”, etc. etc.  And I just feel this clock ticking away.  I’ve already decided pregnancy is probably not the best option for me.  I’m 37 years old and at this point, whatever health I can regain I don’t want to do anything to throw off the balance.  So we plan to adopt.  But I don’t want to be too old and tired to take care of the poor kid!  And most days anymore I just feel like I’m failing on all fronts- my husband, Smikel 🙂  is super supportive, but I rarely feel like I’m able to offer that back.  I spend like 75% of my time in bed (or the bathroom) and I’d like to be able to look forward to something else, ya know?

So now I wait, again, to hear back from my doctors.  alkdfjksafjkajhgoaitg;oawieojrakjdnf

 

On the bright side, I had 3 new videos to watch from www.Markwatches.net– which, if you’re a TV fan, you should check out.  It’s the best ever and made my night!  (also www.Markreads.net.)  I don’t have a link to any of his markwatches videos, but you should check him out (FYI you can find free downloads of the videos at http://markspoils.blogspot.com/2014/06/the-black-market.html.  Anyway, his site is pretty much my bright spot every week so I have hopefully shared some joy with some of you!  Better to end with this than talking about butts, I suppose… G’nite y’all.

 

 

Advertisements

3 Comments (+add yours?)

  1. tfoz
    Sep 24, 2014 @ 06:02:38

    Smikel!!!! Gotta go to work, but will comment more later.

    Liked by 1 person

    Reply

  2. kat
    Sep 24, 2014 @ 14:18:27

    i hope you get the surgery thing sorted out sooner, not later. maybe an ostemy would actually simplify all the issues. i took care of ppl for 20 yrs, and several had ostemies and is was very simple to take care of, and removed all the issues with inflammation, and restored their independence to go around without worry as all they had to do was empty it when it was full.

    i dont know your full story, but i hope you find the right answer for you soon.

    Liked by 1 person

    Reply

  3. kmaramarie
    Sep 24, 2014 @ 20:22:31

    Thanks kat. I’m actually pretty open to having an ostomy- I didn’t really mind the temporary one during my jpouch surgeries, but I had some skin irritation issues and my fear is trading one kind of pain for another and knowing that once I move to a permanent ostomy there’s really no going back! But it’s definitely something I am willing to consider if it means I can get out and have my independence back.

    Like

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 69 other followers

eurobrat

Surviving The Trumpages

markwatches.net/reviews/

Mark watches full runs of television series.

Budget Bytes

My stomach is full, and my wallet is too.

Sage Goddess

The path to healing is not a yellow brick road...

Praying for Eyebrowz

Doing the best I can with what I have

The Pursuit of Badassery

Live bold || Seek truth || Own your story || Never surrender || Be fucking brave.

Colitis To Ostomy

Punk Rock Ostomate

At The Dance Floor

you might find crazy, funny, beautiful & inspiring people and their dance moves

Gemineye Whole Health & Wellness

Holstic Lifestyle Made Real

Writing my Waves

learning to cope with mental illness

Runtu's Rincón

popular culture no longer applies to me

Cup of Mo

An irreverent celebration of coffee mugs and--well--irreverency.

Miss Apostate

"If a kid asks where rain comes from, I think a cute thing to tell him is, 'God is crying', and if he asks why God is crying, another cute thing to tell him is, 'Probably because of something you did'." ~ Jack Handey

Lumos.Nerd

fandom, funny, superwholock, assassin's creed, video games, nerd

Cobweb Queen

you were singing in your sleep

Old Road Apples

A Magnificent Fountain of Gurgling Wit, Wisdom, and Intriguing Insights. Some Other Stuff, Too.

Dearest Someone,

Writing about wellbeing

the liminal life of m

poems. prayers, and ponderings

%d bloggers like this: