Post-Op/Pre-Op Op Ed

by on Tuesday, April 2, 2013 8:16
This entry is filed under: Coping/Support

Post Epic Poo

Guys, it’s been a crazy few months. For a while I was seriously starting to doubt the universe and its plan for me.  Things have been “not right” since December, and got noticeably worse by February. Cue MRI, CT, ER visits re: fistula. By March, it was clear I had to move up my exam under anesthesia (EUA) with Dr. Remzi at Cleveland Clinic.  Travel arrangements were made and I went up with my mom for pre-op appointments on March 20 and the EUA on March 21. My first appointment on the 20th was a barium vaginal x-ray (complete with barium vaginal goo) to try to locate the fistula. After getting pumped full of this stuff, being on my period and it leaking out all over the x-ray table and on me, I got cleaned up, flipped over, and did the other end. The enema test didn’t clearly reveal a fistula, rather a bulge at the connection/stricture site. The post-enema poo was just…EPIC. I don’t know if my pouch has ever been empty before. OMG. I was relieved but exhausted. I drank about a gallon of fluids to regain clarity and headed for the lab to get blood work. After that, I saw Dr. Remzi’s NP, Vicki, and Dr. Shen sat in on that appointment. We discussed surgical options, non-surgical options, IBD treatment, etc. When I got to the EUA the next day, I was more anxious that I’d let on. I hadn’t been sleeping much since I found out about the fistula-maybe two hours a night. I was also excited to have a great distraction in my new position as Development Director at Girls with Guts (GWG). After getting recently fired, it was a savior to me mentally to have something to do that I was passionate about and also really good at! So, I kept my brain occupied with exciting/positive things for GWG, and tried to be patient with my own health. When I got to Cleveland and heard every physician I saw say how much they “hate” fistulas, I got kinda nervous…

I cried a lot that week. I think I was exhausted and overwhelmed, and it was truly cathartic. When they wheeled me back to the OR, I just thought, “How is this happening to me again? How am I doing this and not completely falling apart?” I prayed, I took deep breaths, I joked around with the nurses and the team of doctors. I made BFF’s with the anesthesiologist all the while wondering when I was going to get my freaking anti anxiety meds!!! They juiced me up right before Dr. Remzi came in. I dunno if it was the drugs, but his voice sounded incredibly deep as I looked up to him with hopeful eyes and he explained what he would do while patting me and saying, “I will take good care of you.” When I woke up, I pestered the nurses and staff for information about what was discovered. Knowing I’d remember only portions of the answers, I requested pen and paper to record all of my inquiries/answers and before I knew it had 5 pages full! Mom and I went back to the hotel, I slept, had dinner, slept some more. I’m happy to report I’ve been sleeping well since the surgery.

Pre-Op

So what happened? No one got a visual on that sneaky fistula, which is good? But they still can’t rule it out based on my symptoms of air and off-colored discharge.  Dr. Remzi said what I already knew-that my pouch was not properly constructed. Dr. Shen told me this back in 2010 when I first went to see him, but with the help of his “bag of tricks” I was able to postpone a reconstruction for three years. I was the healthiest I’d felt in years. Although I was SURE I was having a flare when this all started up in December/January of this year, the EUA proved otherwise. My IGG4/Crohn’s was in remission, it was my pouch causing all that pain, swelling, and nausea. That really hit home for me and made me realize that I have to get this sucker repaired. That’s not to say I’m looking forward to the two surgeries required to reconstruct it. I’m not. I am not excited to devote a year of my life to surgeries again. I’m not excited to have a year for my pouch to adapt again. I am kind of weirdly excited to have an ostomy again because I can get some fab Vanilla Blush goodies. The thing I’m wrestling with the most is, do I try the J-pouch again? Do I get it fixed, have a temp loop ileo for 6 months, then have takedown? Remzi has an 85% success rate with this surgery, but let’s remember how I’ve been in the 0.6% before…Still, is it worth a shot?  The other option is just to scrap the whole thing, get a permanent ostomy, and get rectum and anus removed. I have friends who have opted for this route, but both of them still have some problems. If I could just go back to an ostomy knowing it would fix all of my problems, I’d do it in a heartbeat, but as with all things, there’s no guarantee. I have no problems having an ostomy. When I had the colectemy and the end ileo when I was 22 or so, I had major doubts about proceeding with the rest of the surgeries because my quality of life was so much better. I’m happy with myself; an ostomy doesn’t change that.  The only issue with going directly to the permanent ostomy and having rectum, et al removed, is that there’s no going back from that. In an effort to not “burn any bridges” my gut is telling me to try for the reconstruction. Still, I’m tired. I’ll be 30 in less than a week, and that marks 15 years with IBD.  It’s been basically non-stop with disease activity/surgeries since diagnosis. Is 85% good enough to put myself through more surgeries?

Again, I don’t have MUCH of a choice. Of course, I always have choices-how to react, which surgery to do, but whether or not do so SOMETHING, isn’t really an option now that I’ve seen how poorly this sucker works. I can’t go on living on pain pills looking 5 months pregnant because I can’t poop. I want to live my life. I want to give myself a chance, and I guess 85% is pretty good.

So, what do you guys think I should do? Try for the reconstruction or say sayonara to this thing once and for all? No guarantees with either, but one option presents one less bridge to burn.

Update: Guys. It’s THREE surgeries. Not two. :( First is to give me diversion or  ”loop” ileostomy. Second is reconstruct pouch. Third is takedown. BLAH! I’m grumpy now.

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10 Responses to “Post-Op/Pre-Op Op Ed”

  1. avatar

    Doug Larimore says:

    April 4th, 2013 at 11:45 am

    Funny…”post epic poo” pic?  Sounds familiar?  lol.

    my 2 cents?  85% is a dang good percentage.  With my condition, I hear the number 50% thrown around a lot.  Gets a bit old but an 85% success rate is pretty dang good in my book.  It might be prolonging the inevitable or might give you a totally new start?   My arrow would point towards the “new start”.   That’s just my opinion…

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    Lizz Reply:

    I think you’re right, Doug. I’m def. leaning towards the re-do. I’m hoping for the fresh start! How awesome would that be? I’m hopeful, but apprehensive…Just the idea of going through all this again makes me nervous/nauseous. Lol. I just have to garner my strength and do it, I think. Waiting will just prolong it-health will probably get worse, and probably best to do it while I’m young so recovery/surgery is easier. I just haven’t mustered up the courage to schedule it yet. I continue to mull…
    Thanks for your reply! I appreciate it! 

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  2. avatar

    Kelly says:

    April 6th, 2013 at 7:53 pm

    Liz, I had my large colon removed from ulcerative colitis 2006, and then suffered until 2011 with severe rectal pain, so lived on Vicodin forever. Finally headed where the big boys are at the Cleveland clinic a nd they removed my rectum with temporary ostomy for suppose to be 12 weeks then have takedown where they attach the j- pouch and that was suppose to be it. Well ended up in surgery at Cleveland clinic in 9 weeks instead because I was so miserable. My bag fell off constantly. I was going thru bags every two hours, horribly painful site. It was awful. So did takedown which went good. It’s bean a year and mostly problems with night leakage and anal pain like a diaper rash. But everything else is great . Cleveland clinic is the best at this, they do make mistakes like we all do but they got your back. Wish you Gods blessings, their coming at you. Love from a J – Pouch client Kelly

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    Lizz Reply:

    Thanks for the well-wishes, Kelly! I’m ready for something to be easy! Do you try Calmoseptine for the rash? It’s maybe my favorite pouch product. Who was your surgeon? xoxo

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  3. avatar

    Seattle Molly says:

    April 14th, 2013 at 6:02 pm

    Hi Lizz. First, thanks for writing as honestly, humorously, openly and creatively as you do. You have a great gift and we folks out here in gut scambled world are fortunate to read your work. We can relate. I have not been in your exact shoes or hospital sox, but after a series of setbacks, I did go through a long period of thinking I wanted my j Pouch removed and instead go with the permanent ostomy. My GI guy suggested I give the jPouch a little more time before making my decision, so I did, and now I doing okay with the j Pouch. I’ve learned what to eat, what not to eat, what triggers it acting up, what calms it down. But that’s not your road quite yet – you need to get a functional jPouch in you. Feeling or being sick bites. Surgery bite bites. Recovery time bite bite BITES. But being better shows up, and lasts longer than any of the rest of it. I trust you are going to be okay, and the Cin-Cin folks are going to take really good care of you, and you will be so dang glad to get that disfunctional broken down jPouch out of you and a better one engineered just for you. I trust they will take extra, extra good care of you, knowing what you’ve been through.

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    Lizz Reply:

    Molly, thank you so much for the lovely compliment :) That’s obviously very nice for a writer-nerd to hear! (PS I might be scheduling my surgery around Neil Gaiman’s book tour…) Thank you for sharing your story and for your support! I’ve finally reached the point where thinking about the surgery is no longer fully nausea-inducing. IN FACT!!! I’m about to e-mail Dr. Remzi to ask my final list of questions before I bite the bullet. Here we go! xoxo

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    Pramod (India) (PSA) says:

    April 14th, 2013 at 7:24 pm

    Hi Lizz. Don’t worry. Have patience. I am sure that the things would improve over period of time. You have stay strong. I have had my J pouch in April 2006.

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    Lizz Reply:

    Thank you for the supportive words, Pramod :)

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  5. avatar

    Christal says:

    April 24th, 2013 at 5:27 pm

    I thoroughly enjoyed reading your post. I too have been a patient of the Cleveland Clinic for the past two years and they are AMAZING! I also have Crohns (IBD since I was 15; I will be 30 in June) and a j pouch constructed by Dr. Kiran (who is leaving the clinic in May :( ). I am so thankful for individuals like yourself who are willing to share their story :)

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    Lizz Reply:

    Thank you, Christal, for the lovely comment! How are you doing with your Crohn’s?

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