The Moment to Fight (IBD part 3)

So I’m hoping I can get to the present time with the rest of my IBD story in this post.  After the 2nd surgery, I had a really rough time.  I felt sick and weak all the time, like I was going to pass out at any moment.  I also found that the more exhausted I got I would start throwing up or dry heaving.  Even taking a shower was difficult.  After about a month, I found I had an abscess in my stomach.  So I had to start antibiotics for that.  Cipro and Flagyl.  I have since found that taking antibiotics in high or regular doses for an extended period of time gives me HUGE anxiety.  I don’t know why but I want to crawl the wall and rip my hair out.  It’s awful.  My surgeon ended up admitting me for a few days because by that time I was incredibly dehydrated and still had the abscess.  They gave me a PICC line (which is kind of a long term IV that goes up through your upper arm and a tube is inserted right near your heart).  I was able to get fluids and antibiotics through the PICC line daily for a couple of weeks – I’d just go into the infusion center everyday and have it done.  WORLD OF DIFFERENCE.  I finally started to feel human again.  I was still having trouble with my ostomy which now leaked constantly.  I’m not kidding that I figured out what sort of appliances I needed to fix it just about a week before takedown.  I still have so many different ostomy supplies sitting in a box it’s not even funny.  Part of me still worries though that I’ll need them someday and they are frickin’ expensive!  So, not ready to get rid of them just yet.

Anyway, the abscess set my take-down back an extra month but by mid-march I was ready!  I headed into what was supposed to be a short surgery, but because I had so much scar tissue, again, it took much longer than planned.  And I ended up with a VERY large incision in all the way up past my bellybutton.  I used to think it looked sort of like a vine with the staple scars and used to think about getting some sort of flowery tattoo there, but it has faded a lot in the last year.  It again, took me about 10 days for my stomach to start acting right again but I felt like a new person when I left.  They told me the first few months could be difficult and they weren’t kidding.  I still had bowel control problems and a lot of pain.  “Butt Burn” is a common gift you get with a J-pouch.  This is because the Large Intestine no longer absorbs the enzymes your stomach produces and so your stool really irritates the skin.  You don’t travel without Desitin or something, ever.  Lydocaine, Calmoseptine, I’ve tried a lot of creams!

Unfortunately it started to seem like things were getting worse, not better, as time went by.  I was constantly needing pain meds, which no one wanted to give me, but I had fissures and hemorrhoids and just pain all the time.  I finally told the doctor I was about ready for a permanent ostomy.  I just couldn’t take it anymore.  After another exam, she decided she could remove the hemorrhoids, possibly fixing the fissure, and we would give Humira a try, just as one last shot before the ostomy.  FINALLY, things started to get better.  I still have some control issues, but it’s nothing like before.  I don’t leave the house without my emergency kit (change of pants, depends, wipes, and cream) and I still hate traveling.  I usually take a lot of meds to slow things down and stop my bowel action so I can get out and about with a little less anxiety.  It’s never a sure thing, and sometimes I think there’s a good chance I will still have an ostomy in the future.  But right now, the Humira is helping.  Before Humira I was in the bathroom at least 30 times a day, now it’s about half that and it’s possible the j-pouch will continue to improve.  So FINGERS CROSSED!

I know I didn’t go into a lot of detail about the procedures, but that’s because there are much better blogs out there than mine for that- Before surgery, I read http://www.bloodpooptears.com and then I relied a lot on http://www.j-pouch.org.  Both sites gave me a lot of info on what to expect and what to keep expecting as I am still making this journey.

For me this has just been a long, exhausting, confusing couple of years.  Life has changed.  I have changed.  I’m still trying to figure out who I am now.  But I’ve survived this long… I intend to keep doing it!

——————————————

While I was in the hospital and sick at home, I watched a lot of Firefly and Buffy the Vampire Slayer.  A lot of people don’t get why I love these shows, but this is the video that tries to explain it, I guess.  Heroes that keep fighting.  It’s also one of my absolute favorite fanvids ever.  So hope you enjoy…. “The Whedonverse: This is War” by MrMorda898

Advertisements

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: