Rock Out With Your Pouch Out

by on Tuesday, July 9, 2013 22:15
This entry is filed under: Coping/Support

So, I had my surgery to create a loop ileostomy to divert stool from my bratty J-pouch!  Pre-op went down Monday, along with some exciting Girls with Guts (GWG) goodness

Alicia & Liz at Cleveland Clinic

that evening. (Top secret!)  Hubbs accompanied me and we met up with my mom, along with some IBD buddies for aforementioned GWG goodness.   I knew I had a sinus infection brewing, so mentioned this during my pre-op exam with internal medicine.  He rx’d Augmentin, my go-to sinusitis drug.  This was not a significant enough reason to postpone the surgery, thank goodness, as we’d traveled a long way to Cleveland and I had long since made my peace with the decision to give the J-pouch a break or redo it all together.  This surgery has been a long time coming.  I’ve had non-stop problems with the pouch, pretty much since its creation.  Getting my colon removed in 2005 was a no-brainer, and a good decision since my surgeon said the lining was completely stripped out.  As a 21 year old college junior who spent her days in excruciating pain, pooping bowl fulls of blood, sleeping in the bathroom floor, and praying for relief or death, it wasn’t much of a life.  I couldn’t eat. I couldn’t swallow my medications because I’d vomit them up.  I had taken multiple medical leaves from school, which was frustrating to a highly-motivated Dean’s List student.  When I’d failed a version of every IBD drug or herbal remedy available at the time and was unable to participate in new drug trails because I couldn’t keep the pills down, I knew it was time to submit to the surgery I’d resisted since my diagnosis of severe ulcerative colitis at age 16.  When I found and met with a surgeon I liked, the options were clearly laid out for me.  The “gold standard” was an end ileostomy, which would leave me with an external bag to catch my feces.  21 year old Liz was okay with this, but thought, “if there’s an option for an internal pouch, I’ll opt for that.” So I did.  I had a three-step surgery because I was steroid-dependent and still very ill.  I felt great after the first surgery to remove my colon.  I waited the suggested six months for the J-pouch creation surgery, but had serious doubts about proceeding with it.  I felt so great, so what if I had a bag?  Why risk another surgery?  Well, the statistics were in my favor.  Most of the complications were in the 5% and I thought, “No way will that be me!” My surgeon was first-rate, did an average of 150 of these procedures a year.  I felt like I’d made a well-informed decision.  The second surgery included the creation of the J-pouch and a loop-ileostomy.  I had a difficult recovery from that surgery. I lost a lot of weight and moved in with my mother for several months because I wasn’t able to care for myself on my own.  I also had a hard time with the loop ileostomy because I had a high output, which caused dehydration and leakage issues.  The connection or “takedown” surgery was a breeze compared to the last and I spent the next few months adapting to what I thought was a first-rate pouch.  When I went in for my 6 month check-up, my surgeon found a stricture at the anastamosis site that would not go away despite office dilations and multiple surgical balloon dilations.  He seemed shocked that I hadn’t noticed it because it was severe, but I felt so much better than I had with the colon, plus, how was I to know how a J-pouch should function?  After that, it prolapsed (ie came OUT of my “hole”).  Then the pouch twisted, two separate times.  The first requiring emergency surgery to untwist it, and later, surgery to untwist it and tack it in place.  After the pouchopexy surgery, I thought, “Surely this is it.” Nope! Of course I had pouchitis, later a Crohn’s diagnosis, then a rare complication from a Crohn’s drug.  Immediately after the takedown, I had severe lower back pain, localized at the top of my pelvis.  It was a dull, aching, radiant pain that never went away, but occasionally worsened.  My doctors had no idea why that was happening, but did note that my pouch was “bigger than most” probably because it stretched when I was unable to empty fully because of the stricture.  The low back and pelvic pain was so constant that I eventually got used to it and just thought of it as something I had to deal with.  When we moved to Oregon and new surgeons and GIs evaluated my case, I got slightly closer to an answer, but most blamed my problems on Crohn’s, put me on more meds or referred me to another doctor.  I saw a pelvic floor therapist who massaged my anus, inside and out. I took muscle relaxers to try to help the pelvic floor muscles relax so I could empty the pouch. I had a defography where I ingested barium orally, anally, and vaginally then pooped it out while being X-rayed.  (Surprise, it didn’t empty properly.) Eventually, I got to Dr. Shen at Cleveland Clinic

Liz & Dr. Shen

who ran some very specialized tests and within two days had diagnosed me with efferent limb syndrome (the rectal stump goes at a diagonal vs. vertical causing problems emptying). I also had a chronic stricture at the connection site, my pouch was not symmetrical, and my anal muscles had been re-trained to never relax.  He offered simple, safe solutions and got me off most of my meds, although I took Entocort for the IGG4 autoimmune pouchititis I was diagnosed with.  The next three years were a marked improvement, but he always honestly told me that because my pouch had mechanical issues, it may require a re-do by one of their surgeons.  When I had the fistula scare earlier this year, felt absolutely terrible, ended up in the ER, was swollen and looked 5 months pregnant, I thought the fistula was to blame for my worsening symptoms.  When I had the exam under anesthesia (EUA) with Dr. Remzi, my mind was blown when he told me the issues were due to my poor pouch function.  I guess 8 years of never pooping properly had finally caught up with me.  I also felt so much better after the prep and tests for that exam (see epic barium enema post) that it finally clicked that my pouch never was empty and that my pelvic pain and swelling were due to that.  After months of contemplation-including weekly therapy sessions, prayer, polling of friends and family, and meditation, I decided to schedule the loop ileostomy surgery to give my pelvis, as Dr. Remzi said, “A chance to cool off.”  I was nervous about the surgery for a number of reasons. 1. It’s another freaking surgery! How many of these have I had? 2. I remembered my hate/hate relationship with my former loop ileostomy and was hesitant to get back together 3. What if something went wrong again? Could I take that mentally and physically after all I’d been through? If you read my last post, you know I decided to woman-up and try again.  I decided it’s never okay to give up when you have so much good work to do and life to live, so I told myself, the universe, God, that I’d try one more time, but I made clear that I needed this to work.  I put all the positive energy I had towards it.  I enlisted the good vibes and prayers of my community, family, and friends, and I felt the love!  I had the surgery Tuesday, was released Friday, and am enjoying the distinct lack of pelvic pain.  

Liz & wonderful Hubbs.

I’m loving my ostomy and if I can avoid diversion pouchitis, will probably keep Stella (my new stoma) for as long as possible.  I’m so thankful for the ability to keep going-for the support of all of you, and I encourage you to pay attention to your body and seek answers when something feels wrong.  Years of dealing with chronic illness and the constant pain that accompanies it can skew your perspective and dull your instincts.   We can adopt a mantra of, “this is just how it is for me,” because it seems like part of accepting our illness.  I encourage you to keep seeking answers-to seek the counsel of the best physicians you can find-to try alternative therapies like yoga, acupuncture, as long as you do it as a fully-informed patient.  I have never stopped researching, but I almost stopped fighting.  There’s no guarantee that this surgery will last forever or that I’ll be free of complications, but I can take solace in knowing that right now, I feel better, and I feel better because I didn’t give up on myself, or on the promise of improvement.  

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10 Responses to “Rock Out With Your Pouch Out”

  1. avatar

    Doug Larimore says:

    July 19th, 2013 at 5:53 am

    Liz,
    Phase 1 is done…you sound like you are in good spirits.   Any idea when the next surgery will be?  Just curious.  
    You take it easy!
    dougl

    [Reply]

  2. avatar

    Cassandra says:

    August 23rd, 2013 at 7:55 pm

    Hey Lizz,

    I’m from Oregon as well. I am 29, diagnosed with Crohn’s in 2000 and have had an ileostomy since 2009. I’m still extremely sick but am hoping OHSU will have some answers for me. Anyways, I would love to chat sometime and share our stories. Perhaps you might have some advice for me. If you feel like it, my email is frexygirl@gmail.com I’m also on Facebook. I hope you’re doing well! Take care!

    [Reply]

  3. avatar

    Joey Elmo says:

    August 25th, 2013 at 10:55 am

    Lizz,

    I can’t tell you how much I enjoyed your amazing energy and positive words you share on this blog. I have been battling UC for 8 years now and NEVER have I heard someone who has had a similar story to mine!! I had 12 surgeries total to date 2005 being my 1st – removed my entire colon and rectum (3 stage j-pouch) which ended up being 4,5 & 6. Had it reversed 3 x’s do to chronic pouchitis and fistulas. In 2010 my j-pouch leaked into my spine and caused Vertebral Osteomylytis that was the MOST PAINFUL experience of all. I think your pelvis issues were similar just infected your pelvis vs your spine….. neither of them are fun. I just was hospitalized last week and was diagnosed with Crohn’s. I myself only go to Cleveland Clinic but in Weston Fla to Dr. Steven Wexner….. he is my J-pouch Jesus lol
    I just started seeing this amazing GI doc here in Philadelphia that specializes in UC & Crohn’s, IBD and she is the one that diagnosed me with Crohn’s and wants to take an aggressive approach with Humira or Remicade….. I would love to talk with you or email you a few questions regarding these meds and some other questions that I’m sure we could help each other out with. I never once joined a blog and shared with other people going through IBD issues until I was so moved by your post…. your raw honesty and humor after all the shit you have experienced. I have to say I have been losing my drive and humor recently….. but NOT willing to give up and stop the fight. I’m not sure if this comment will even get to you personally? How can I share my personal email with you? Cell number? 
    Please let me know how I can reach you. I have to start this anti-immune treatment in the next 2-3 wks and would love to connect before. My email is josephelmo@mac.com 
    I look forward in hearing from you and sharing more of our war stories together.
    All The Best
    joey

    [Reply]

  4. avatar

    Lizz says:

    August 28th, 2013 at 9:57 pm

    Thanks for the kind words, guys! You can reach me at liz@girlswithguts.org.

    xoxo!

    [Reply]

  5. avatar

    Dawn says:

    September 20th, 2013 at 4:40 pm

    Hello
    I was reading your story and it sounds so familiar
    i am 35 and had my colon removed in 2005
    my bowel ruptured at the anatasmosis in 2011 and i wore a illieostomy that was reversed and a j-pouch created
    i have been dx with gastroporesis and been having lots of pain
    i am hospilized about every 6 months when they pump my full of pain meds
    stick in a NG to reduce my abd swelling and discharge me
    im tired of the swelling, pain and the incontence that im having

    feel free to email me
    i would love to trade notes
    im also looking for a dr and i noticed you said cleveland
    i live in columbus

    [Reply]

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