The Architecture of my Ass

by on Monday, February 11, 2013 1:46
This entry is filed under: Coping/Support

Hello!!!  fellow J-pouchers.

http://www.youtube.com/watch?v=K41r5eD0iXM
When Mark and Megan asked me to be the Crohn”s “expert” on Jpouch.net I was honored and excited because I knew I”d have a lot of material to share with you guys. I knew that although most of my blogs would be about research/living with a J-pouch and/or Crohn”s day-to-day, a few would deal with very personal new disease developments related to IBD. I come to you today with a post about the later.

Fear is a Four Letter Word
!@#$&!*&%#   

A lot of my journey with this disease has revolved around fear. Fear of a flare, fear of another surgery or complication, fear of a rare medication side effect. Unfortunately, most of my fears have come true. I seem to be one of the cases that just gets the full gamut of the disease, and good or no, I”ve come to expect complications. When these began after my J-pouch surgeries, I was frustrated and devastated. I”d lived my life as a very sick girl with a diagnosis of Ulcerative Colitis, with an “it-could-be-worse” attitude, my mantra being, “At least it”s not Crohn”s…” So, when I was diagnosed with Crohn”s less than a year after takedown, I felt hopeless. Eventually, I got a grip on it until a few other bizarre surgical complications arose and I had a mini-breakdown. I started seeing a therapist who helped me deal with the fear and paranoia that goes hand-in-hand with chronic illness.  With a new perspective, I trudged on, and my life was more full and wonderful as a result.  I”ve somehow managed to hang on to that way of thinking-Deciding to control my mental and emotional reactions to the deception of my physical body, choosing to be pro-active with regards to my attitude and medical care, and generally,  choosing to deal with my disease vs. snuggling into a heaping pile of denial.   So, when I noticed air online casino australia coming from my vagina recently, I knew the thing to do was investigate and deal, not dive into the woe-is-me pity party or choose the, “I”ll just ignore this and see if it goes away” route.  I”ve started listening to my body when it tells me something is wrong instead of being a stubborn, stoic, control freak. So, after about a week of this…air passage… I e-mailed J-pouch Jesus (Dr. Bo Shen) and he recommended a pelvic MRI to rule out a Pouch/Vaginal Fistula.  (Here”s where my oh-so-clever architecture pun comes in.)  For those of you unversed in fistulas, they are, essentially, a tunnel from one organ to another.  They are often a complication of surgery or Crohn”s disease, so naturally, they are something that had been on my paranoia radar in the past.  I remember the first time I learned what a fistula was, and what happened most of the time when woman had them (Poo comes out of your V).  I vividly remember thinking, “Oh GOD! I do NOT want that.” Not that I wanted any of the other stuff, but for some reason, a fistula sounded extra icky, to use the phrasing of my inner teenage girl.  Air was something I could deal with, but when it became regular, I knew something was “off” downstairs and that it was time to investigate.   And the weird thing? I wanted to investigate.  While lying strapped down to a plank inside of a tiny cylinder for an hour with a lovely soundtrack of magnets scanning my insides was not my idea of a good time, I knew it had to be done, so I did it.  I wasn”t sure what to expect of my results. Part of me just KNEW I had a fistula way before Dr. Shen was ever contacted to investigate this, and part of me was still hopeful that I just had a magically windy vagina.  (Insert sound of a gusty prairie. Cue tumbleweed.) So, when the radiologist noticed a sinus or fistula I thought, “Well, he”s not J-pouch Jesus…Maybe he isn”t correctly reading my extra-special insides, maybe this isn”t anything significant.”  Yet, when Shen e-mailed me confirming the fistula, I didn”t feel as defeated as I thought I would. Perhaps this calm is what comes from being  a seasoned sicky, but I haven”t cried about it. I haven”t thrown a hissy fit. I”m just, dealing with it. With a lot of grace, I might add!  Dr. Shen is referring me to Dr. Remzi, colo-rectal surgeon to the stars, to perform an investigative surgery.  While I can deal with a gusty lady, I will probably be much less sane when she completely switches careers with my J-pouch, so I”d rather deal with this now than later.  As many a zoning committee knows, it can take years to get approval for, much less build a tunnel or bridge.  Who knows how long this has been going on in my nether regions, but Madam Mayor is gonna do her damnedest to put a stop to the current construction and see that the appropriate repairs are completed ASAP.

I”ll keep you guys posted on the whole affair.  In the meantime you can send get well cards to:

Lizz”s Vag
c/o Lizz”s J-pouch
Fistula Way
Dallas, TX

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10 Responses to “The Architecture of my Ass”

  1. avatar

    jim says:

    February 13th, 2013 at 3:17 pm

    Hi ,like your advice / opinion on J Pouch and crohns !! I had a sub total collectomy at least 5 years ago with hopefully a j pouch in the future but unfortunately my then consultant decided i had crohns instead of UC to which i was 1st diagnosed with !
    Since changing consultants and hospitals and having loads off tests my new consultant has thankfully in a way not found any sign of crohns  .
    I’m due surgery within the next month or two for a hernia around my stoma and I’m thinking whether I should ask to have a j pouch formed,I know its risky but is it to late to have one formed 

    [Reply]

  2. avatar

    jim says:

    February 13th, 2013 at 3:19 pm

    Question i forgot to ask is would my tail end muscle be to lazy after the length of time i’ve  had  pouch ???

    [Reply]

    avatar

    Lizz Reply:

    Where are you going to the dr/for surgery? If you still have your rectal cuff, technically, it should be possible to have a J-pouch, but that’s a discussion to have with your GI and surgeon. I often wonder if I had known then what I know now if I would have stuck with the end ileostomy or opted for the pouch. The ileo was annoying b/c of dealing with the bag, but I’ve had a lot of complications with the J-pouch, plus it’s more surgery. Having said that, you could have no problems and absolutely love having a Jpouch! So, my advice is to do your research, speak at length with your physicians about it, and weigh the risks and benefits. Unfortunately, that’s all you can do :) As for your sphincter control, I really don’t have an answer to that. There are tests they can do to test your muscle tone in that area. Mine’s not great and I have some incontinence as a result, but that usually only happens when I’m flaring.

    [Reply]

  3. avatar

    Doug says:

    February 16th, 2013 at 2:31 pm

    Liz,

    It sounds like there are a lot of reasons for you handling new problems better today than in the past? It’s sad that you have another problem but good that you decided to act on it so soon. If you have 100% confidence in your doctor, it’s just a huge relief as a patient. Hang in there and keep us posted.
    dougl

    [Reply]

  4. avatar

    Denise says:

    February 22nd, 2013 at 11:58 am

    Hey lizz.
    so sorry to hear about your fistula. Remzi is my CC surgeon. I absolutely luv him. In  fact, I just had another EUA surgery with him last week. My darn wound from where the jpouch was removed just won’t heal. So I’m a frequent customer in his operating room!

    Anyways.. as you know.. they are the best there. And he is the best colorectal surgeon there. So as you know.. not much you can do.. other than to wait and see what he thinks. Better to get that taken care of, before it gets worse. hopefully you are getting in to see him quickly.

    If you don’t mind, I’d like to meet you if we happen to be at CC at the same time. I am currently there about once a week it seems!
    best wishes.
    denise

    [Reply]

    avatar

    Lizz Reply:

    Thanks, Denise! I know I am in good hands so not terribly concerned at this point. Not making the trek until April. They offered to get me in sooner but I wanted to wait until after the GRE/my 30th Bday! Would be fun to meet up. I will get in touch when it gets closer to time and see what we can do :)

    [Reply]

    avatar

    Denise Reply:

    wise choice. Wait for remzi to probe your nether regions after you turn 30!!! 

    [Reply]

  5. avatar

    大きい says:

    June 27th, 2014 at 11:59 pm

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    日本人にとって英語は神の言語だが中国人にとって英語は簡単な道具だ。 このコードの理解の重要性が全く分かっていない。
    中国  アジアの権益を中国に返還してください。  それケースが不衛生だっただけじゃね

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