The Adventure Continues

by on Friday, October 10, 2014 12:12
This entry is filed under: Coping/Support

Hey, all. I was planning to write an update much, much later, as an attempt to wallow in denial and preserve sanity, but since it”s been about 8 months already and I”m laid up and bored out of my mind, I figure now”s as good a time as any to tackle this.

Last we “spoke”, I had written about the hell-on-Earth that was the J-pouch reconstruction, so I”ll just go from there.

About a month after the surgery, I went back to Cleveland Clinic for a barium enema study to be sure the pouch didn”t have any leaks.  I flopped my ass on the chilly exam table, sandwiched between X-ray equipment and a medical baby pool to catch the runoff, and presented tush for the invasion with full confidence.  After all I”ve been through, surely this test would reveal an immaculate pouch.  Perfect, nay, reborn from the ashes of the former and we would all revel in its glory, right? In the immortal words of Wayne Campbell…NOT!

My Brian Cranston-esq radiologist [insert Breaking Bad joke here—->] he is the one who tests, redid the enema himself when an anomaly popped up on study done by his minion.

“This is for Remzi, right? Let me do it.”  Maybe Remzi is the one who knocks.

He talked me through it, pointing to the tunnel just off my J-pouch heading into lady land.  He even took me back into the secret bunker-style room full of humming monitors and miscellaneous medical equipment to show me a comparative study of prior non-fistulized images to the current.  No doubt about it, there was a fistula, specifically, a sinus cavity in the anterior of the pouch (that”s towards my lady parts for all you layfolk).

My first reaction wasn”t surprise. I”ve had too much gnarly shit happen for surprise at this point.  At first, I”m just numb.  That”s the safety valve in my psyche opening up so I don”t go running head-first into ongoing traffic.  I get quiet because the processor is trying to wake up and do its job, but really, what is there to do other than head up to my next appointment with the bad news and put the burden on the doctor”s plate, not mine?  Oh right, I have to tell my amazing, supportive, been through hell-and-back mother that once again, something is wrong with her baby.

When I got cleaned up and passed the waiting room on my way into the changing room, I was starting to feel again.  The lump in my throat was becoming more obvious to me, but I wasn”t ready to spew forth this truly shitty news just yet, so I just told mom I had to change first and I”d tell her what happened.  Something about seeing my poor, young face in that changing room mirror brought me down from the clouds of denial.  I looked myself in the eye and I felt sorry for the girl I was communing with.  There have been too many disappointments in hospital waiting rooms and though I was sure I was too used to this, too numb for it to register anymore, tears welled up in my eyes for the millionth time upon realizing that once again, something was wrong with me.

When I stepped out I could see mom”s heart drop.  As we left the basement of the clinic”s imaging area, the famous Cleveland Clinic trash robots buzzing around us, we hit for the elevator and I told her, “There”s a fistula.”  On the way to the appointment with Dr. Remzi we exchanged unsavory frustrated phrases.  I had to stop midway down the sky bridge to go into a bathroom and curse God, apologize to God, kick and scream a little more, then get my shit together because we were already late.

As soon as we walked in the room, I knew Vicki, Dr. Remzi”s NP, had received the bad news too.  At this point, I had ostomy number 4 or 5, a very high-up, persnickety loop ileo who loved to keep me dehydrated.  The fistula was going to prolong our love affair.  Takedown wasn”t happening until we could get that tunnel closed.  Why do they always do road work in the summer, huh?

Sweet Dr. Shen came in and we discussed his magical fistula healing serum (glucose and sometimes doxycycline) and wondered if he could juice me up while we were there.  This procedure would require me to have general anesthesia for the billionth time, and require the crem de la crem of the J-pouch maesters (Shen and Remzi) to combine their powers and infinite ass wisdom to fix this thing.  Problem is, they”re only in the OR together one day a month.  I hopefully asked with an accompanying princess Liz smile if Monday could be one of those days.  J-pouch Jesus and Rock Star Remzi made it so.

Did I mention that I live nowhere near Ohio?  That these visits require me to get on a plane, get a hotel, a caregiver, etc.  So to have these guys who have packed schedules as it is, work me in on Friday for an operation on Monday, was pretty damn amazing.  To boot, they had to order an MRI so they could find the fistula. Gotta have a road map before you go in to do repairs.  So, I headed down for the MRI. Luckily, I had a really sweet tech who played me Queens of the Stone Age to help block out the sounds of the magnets reading my messed-up insides.

When the tests were through, Mom and I tried to relax in the hotel, update friend-folk and kin-folk on the disappointing news, then put it out of our minds.  I forget if it was Saturday or Sunday that I woke up with high ostomy output, decided I could online casino keep myself hydrated, had a little breakfast, then started vomiting.   Long story short, I passed out in the hotel bathroom, mom got help from the hotel to rush me around the corner to the ER where I was tachycardic and becoming unresponsive.  Through the daze, I remember wilting onto a gurney in some shape resembling a parenthesis, a team of doctors and paramedics surrounding me, wrapping me with blood pressure cuffs and putting monitors all over my body.  Someone wrote my blood pressure on the bed sheet, but I don”t remember what it was, only that nothing seemed to be good.  I remember getting multiple IVs and not really feeling anything.  At some point, I started seeing a hazy white light off in my upper left field of vision.  I was still conscious enough to know what this meant and that it probably wasn”t good, but it wasn”t scary, in fact, it was quite tempting and I considered for a moment how nice that option could be for me.  However, the multiple bags of saline started pumping through my veins and I woke up in a room with a cute doctor doing an ultrasound of a vein on my right forearm and another doing an ultrasound of my heart and other vital organs to be sure they weren”t totally FUBAR.

This was at the high point of my patient advocacy efforts and I”d enlisted mom to help me document every gory detail, so before I passed out on the bathroom floor in the hotel, while she was calling for help I signaled for her to take a picture.  I did the same while coming to in the ER.  Only now do I recognize how truly and utterly fucked up that was.  Was I so in need of a distraction from my own shitty life, so in need of validation of what my disease did to me, and to others, that during an honest to goodness near death experience I had to be an unpaid ass reporter and ask my mom to document, once again, the suffering of her baby girl?  Was it so important that the world know what IBD patients go through that I immediately post this to my Facebook page?  Yes, and no.  That”s why you haven”t heard from me for a while, because I”m trying to get my shit straight.  I”m still trying to accept all the bad health stuff that happens to me, and instead of distracting myself with advocacy and things that do legitimately help others in my same situation, I realized that I don”t have to make the worst thing about my life my purpose too.  I realized that I, and my family and friends, may need me to just focus on getting better.  I realized that a normal, healthy reaction to a near death experience and devastating surgical complication is to feel it, to deal with it, and to take the time to take care of yourself instead of trying to take care of everyone else.  In trying too hard to be selfless, I was, quite frankly, being a selfish idiot.

To summarize the following months, I had three total surgeries to fix the sinus cavity, had a wholly uneventful takedown surgery, and have had two stricture surgeries since takedown, the most recent of which happened on Monday.  I”m flaring and back on steroids and high doses of antibiotics and have been sitting on my sick ass, snuggling with my dog, binge watching Seinfeld.  And that”s exactly what I”m supposed to be doing.

The only reason I”m writing this update is because of your sweet comments and concerns.  I haven”t wanted to relive this yet, but I think every day, I”m getting to a place where I”m more and more okay with my life and learning, day-by-day, how to best take care of myself physically and mentally.  Sometimes, that”s helping others.  I am one of those do-gooder types who believes it”s important to be active in your communities and take action for causes that are near and dear to you.  I”m still doing that, but I”ve had to take a back seat with the IBD advocacy for a while because it was frankly just more than I could deal with.  My entire life was revolving around this thing I absolutely loathe, and for my physical and mental health, I had to put it on the back burner.  This year has been a doozy and there”s no sign of it letting up yet, but I have plenty of fun things planned, and have managed to sneak in some fun between surgeries this year.

As always, I”m so grateful for the love and support of this community, and of my wonderful friends and family who see me through this every day.  It”s not an easy life, but it”s the one I have, and I”m determined to rock this shit.


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20 Responses to “The Adventure Continues”

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    Los Angeles Hospice Care says:

    October 12th, 2014 at 10:11 am

    Great Article! Thanks for keeping such a positive attitude.. Its all uphill from here on


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    Harry says:

    October 26th, 2014 at 6:37 am

    Hi there,

    My partner has a J-pouch. The surgery wasn’t very successful. She’s in chronic pain. It’s hard to watch. It’s hard on the heart. I can’t tell her that though. I don’t want her to feel guilty for something that is in no way her fault on top of what she is already trying to handle. I guess I just want to know what you (as someone who has a J pouch and may know about chronic pain and what it feels like) think is the best thing a partner could do? I’m just sort of flailing. Any help would be really appreciated.



  6. avatar

    phoenix says:

    October 28th, 2014 at 5:01 pm

    sitting my tush on pillows for a stricture where my jpouch attaches. ugh! read your post and feel for ya!


  7. avatar

    Becky Jones says:

    November 18th, 2014 at 11:11 am

    Lizz –
    I am so sorry that you story continues in such a way. I was so hoping that it would be successful and you would bounce back quickly.

    My son is facing a decision of a redo or excision. He keeps leaning toward the redo – but to be honest, with all the problems he has had, I wish he would just get rid of the damn thing and get on with his life. The last few years have been a nightmare. So many trips to much anesthesia, his career may just be lost… my heart breaks….(Please tell your mother, I have thought of her as well. It’s a mom thing.)


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    Kelly says:

    February 16th, 2015 at 11:43 am

    I had emergency surgery for UC 12 years ago as a result of a bad reaction to antibiotics that I had taken for an upper respiratory infection.  I was fortunate enough to be reconnected with a jpocuh  approx 6 months after the total colectomy.  After many many bouts of pouchitis with numerous antibiotcs that didn’t really help and lastly, 2 obstructions (strictures) -I am told that I have Chron’s.  (bioposies from pouchoscopy and baloon dialation) I am waiting 6 weeks to see a GI specialist now.  I am so so tired of always feeling awful. I don’t even know how to begin with how concerned I am with this and have no idea what limitations lie ahead.  Please let me know if anyone has experience with this. Thank you!



    maggie Reply:

    Hi, I really feel for you. My husband was diagnosed with colitis in 2010. It was very chronic and aggressive one, he was having flare ups all the time, taking lot and lots of drugs, loosing weight, and spending most of the time in hospital. Then we received a phone call late in the evening informing us that the results showing that he gonna have to have emergency surgery. That was it and we couldn’t do anything about it. It has been over 2 years since his last surgery when his j pouch was connected. In short we have had ups and downs, he is regularly taking antidiarrhoea, lots of vitamin supplements, pentasa and antibiotics as he had some infections. The most annoying thing is that sometimes looks like it’s never gonna stop. He is so tired of this, we both are but I’m trying not to show it, I can’t, someone has to be strong to keep it all together. I always say this is only part of you, part of your life, don’t let it control you and your mood. It’s bloody difficult but with positive thinking you can bring more positivity into your life. Focus your mind on something good, something that will give you joy and happiness. My husband often tells me “how….when I’m in pain and always see blood in the toilet and I can’t sleep…how?” I don’t know the answer to this but i can say even if you can’t control how this is all going you can control your mind. It’s hard but possible. If you can’t fight against it learn how to accept it and live with it. Hope this helps a bit. Keep strong!


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    Lori says:

    September 21st, 2015 at 6:38 pm

    I’m so sorry you’ve had such a terrible time. I had such severe UC in ’97 in was in and out of the hospital with blood transfusions, etc., and never went into remission. I was so sick of the steroids and every other drug I had to take that I decided on surgery. Found an excellent surgeon in Ft. Worth and had the JPouch done in ’98. So grateful to my hubby and friend who helped with our babies during all that.
    I’ve had a few problems–like some strictures, since the take down/closing of the ileostomy 4 months later. But now I really need a hysterectomy, and I’m terrified that I will have adhesions and my JPouch will get messed up. :-(
    I do hope you get to where you can live a regular kind of life. <3 hang in there!


  14. avatar

    btoz says:

    October 17th, 2015 at 7:57 pm

    I loved reading your stories, reminded me of my own..
    In short: I was 22 years old (1995) when I had this massive attack on my gut, much like when you were 15. I was at work and went home and laid in the bath for hours, draining the cold water and adding more hot water every hour or so. After 6 hours my mom took me to the ER and I stayed in the hospital for a month. They removed my entire large intestine after not being able to control what they were calling Ulcertive Colitis. Ended up with a bag and 3 trips to Seattle for a J pouch. It is now late into 2015 and I just got home last night from my 5th seton placement. I was fine (well not really fine but managed to avoid any doctors) until November of 2014. The CT’s, X-rays, MRI’s seemed non stop, pain non stop. I tried remicade for 3 months and got another fistula while on it. Tried humira and got sepsis while on it. That was a close one! I remeber getting put in the ambulance and then getting cpr when they were rolling me into the ER, don’t remember the 3 days in ICU but my wife sure does :(. Sorry trying to make this story short. Bottom line, I don’t know what I did to all of a sudden start getting one fistula after another but I’m trying everything I can now to stop them!! Diet, killer meds (that just about killed me -I’m not on any of them anymore!), dietitians, acupuncture, weird dotera (sp?) oils. No wheat, trying to get off all sugars except honey, no veggies unless they’ve been cooked to mush. I got this powder stuff that’s like aloe vera for your intestines and some other stuff called immuniglobin (sp?). I drink a protein shake at 7am and eat a banana that’s got as many brown spots as it does yellow. The next time I eat is at 6pm and it’s a lot of proteins. I enjoyed your stories and cried through most of them because I felt like I was there. I wonder why it seems like everybody goes from UC to Jpouch to Crohns to fistulas and fissures and the big meds they want to give you? Side effeccts are crazy!! Might as well just say “it might work or you might die or worse” in a really fast voice in a different tone during those commercials when everybody’s out playing golf. PS I hate golf!


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