by on Monday, April 19, 2010 10:01
This entry is filed under: Coping/Support

Humpty Dumpty had IBD,

Humpty Dumpty said, “Shit! Why me?”

Humpty took drugs, said, “Man, this sucks!”

and opted to get sur-ge-ry.

Hi, all! It’s me again, back with an update. The past four months have been one fun test after another. The first was my ass-reaming (pouch scope) in January to determine what was causing my tummy problems (sick at my stomach, incomplete emptying, etc. after stopping the Xifaxan I’d been on for 2 plus years). The pouch looked good, so the next test ordered was a barium small bowel study. This required me to do something I hadn’t done in years-Drink glasses of thick, nasty barium while sporting a stylish hospital gown (one in front, one in back) and roll around on an x-ray table for about 3 or 4 hours while the doc took picture of my insides. The study was reviewed and revealed a narrowing of my intestines next to the J-pouch connection site. Afraid my stricture was back, I was referred to a surgeon who reviewed the films, scoped me in his office and found no stricture, but some weird, “white stuff” in my pouch. (Not barium though, he hypothesized.)

This is a photo of some barium I was recently downing.  I find the pretty pink straw makes it seem more like a pina coloda.  😛

Test 3: CT scan requiring even MORE barium and IV dye injection. This revealed no sinus cavity as suspected because of the “white stuff” (great news!) but indicated that I have one whopper of a J-pouch. (Insert my-j-pouch-is-hung-like-a-horse joke here). Evidently when I had my horrible first stricture that I didn’t notice after my takedown 4 years ago (how am I supposed to know what a J-pouch poo ‘should’ be like?) it caused my pouch to stretch to accommodate my accumulating poo. Evidently pouches can “retract” but mine liked being the big pouch on the block, so it just stayed large and in charge.

Test 4: Defecating video pouch-o-gram. Translation: This time I don’t drink the barium, it’s enema-ed up my ass, I’m given IV dye (again) for contrast, and I roll around on a table for 2 hours while they video me crappin’ it out. This should tell my surgeon if my big-daddy pouch is not emptying properly because of its size and causing constant bouts of pouchitis. This would explain why I felt fine when I was always on antibiotics. – The antibiotics were treating my pouchitis caused from incomplete emptying.
This brings up several new questions…

  • How do I feel about pooping on tape? I don’t feel embarrassed anymore. I’m a little worried I might be radioactive from all the barium I’ve ingested (in one orifice or another) in the past few months, not to mention the contrast dye. I’m also concerned about what options this leaves me. Reconstructive pouch surgery to “shrink” my pouch, doesn’t sound like a lot of fun, and I’m not sure they’d even suggest it after all the problems I’ve had and the Crohn’s diagnosis. (Crohn’s+surgery=bad.) If an ileostomy is suggested (it’s been mentioned more times to me in the last few months than I care to recall), I think I will ask to begin popping perma-antibiotics again.
  • Do I care that it’s probably not that “good” for my body to take 6 antibiotic pills a day? Not really. At this point, I call it a wash. I can’t think that Humira is that great for me, or any of the other drugs I’ve slammed myself with in the past decade to control this disease. Our options suck. All options for sick people suck unless that option is a cure for their disease. At this point in my life, I’m over being bitter about my lack of appealing options and the side effects of our medications. I now just look for the options that will allow me the best quality of life NOW. I try to not worry too much about the long-term or possible super-scary side-effects because I can’t imagine any of them are any worse than anything I’ve already endured. Humira, for instance, MIGHT give me cancer and won’t cure my disease, but it makes it manageable so I take it (twice as much as the ‘normal’ dose.) The cancer thing scared me at first, so much so that I put off trying Humira until I was skeletal thin, unable to eat, malnourished, and absolutely exhausted. I realized that whatever Humira “might” do to me, couldn’t be too much worse than what Crohn’s was doing to me now. I just wanted to feel better, I was desperate, out of options, so I took it. It helped.  The suppositories I shove up my ass every morning and night don’t excite or stimulate me, but they make my quality of life better overall, so up they go! It’s the same with the antibiotics-if they can help me keep my J-pouch longer, feel better, and not have to deal with an ileostomy, or at least put if off a few years longer, that seems like a more appealing option to me.
  • Do I worry about what all of this “might” do to me in the next ten years? Kind of, but not terribly. I try to live in the moment and get the most out of life now. Of course this is not to say I have a fatalistic view. If I find out there’s some great danger with living with the big pouch or reinstating long-term antibiotics, I’ll reconsider. Plainly, I’d rather pop pills than be cut open and put back together again. Enough with the Humpty Dumpty shit.

So I guess this thread has a few themes I’d like you to chime in on.

How do you feel about your medical options as an IBD patient, or as a patient in general? Do side-effects scare the bejesus out of you, or are you just thankful to have an option?

How do you feel about all of the invasive, embarrassing tests we get as IBD patients? Do you, like me, just not care anymore? Is your modesty all but turned to dust?

How do you feel about being young person with an ileostomy or a j-pouch? How do you feel about having had multiple surgeries before your 30th birthday?

How do you feel about how the diseases affected your family and your achievements in life? Have they limited you, caused riffs in your family life, or have they inspired you to fight more and achieve more successes?

Lots to think about. Lay it on me.
I’m off to go poop in a cup and let someone examine it. Just joking :)

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3 Responses to “Crap-O-Gram”

  1. avatar

    Jenny says:

    April 26th, 2010 at 1:57 pm

    I think our options as IBD patients is somewhat limited, but I can’t say they’re not available. As for the side effects, I’ve had lots of people tell me the side effects and how “dangerous” these drugs and surgeries are, and all I can say is… “What’s your point?” If I’m already suffering, and this drug could make me feel better, but it also has the potential to give me a different problem, then I’m going to weigh my options and do what I feel is best for me. Is it something I think about on a daily basis, no. It is a consideration when choosing a treatment, definitely!

    I’m under 30yrs old as well, and the procedures and tests were absolutely an embarrassment for me in the beginning. Even somewhat shameful. But through the years with Colitis, I (as I’m sure most of you) have lost all sense of modesty. If I have to go through this, then I’m sorry but I don’t apologize for making y family and friends sick when discussing it.

    I’m 24yrs old, and currently have a temporary ileostomy, and will be having my take down in June and then using my j-pouch. It’s quite devastating at first, to realize that the rest of our life will no longer be average. Not to say that it can’t be normal, but things I do on a day to day basis have now changed. Not dramatically, but they’re definitely different, and they will never be the way the used to be. That’s a hard pill to swallow at 24 yrs old. My takedown will be my 5th surgery before my 25th birthday (2 previous had nothing to do with UC) and although that seems like a lot, and probably an unhealthy amount, I kinda wear it like a badge on my chest. (I literally have tattoos on my upper chest/collarbone area dedicated to my fight with UC) I know it’s not something most people would see as a blessing, but I really believe that, what doesn’t kill us makes us stronger. I have so much more strength than I even thought, and for that I am truly proud.

    How do you feel about how the diseases affected your family and your achievements in life? Have they limited you, caused riffs in your family life, or have they inspired you to fight more and achieve more successes?
    I’m a very independent and ambitious person. Spending the majority of 2009 in the hospital and at home in bed, forced me to let others take care of me when I couldn’t take care of myself, and absolutely made me put my dreams on hold. I was forced to drop out of school, I was fired from my job, and I had to forget about buying my first home, and had no time to start the new business I was planning to start. But ultimately, you work around it. Once I was feeling a little better, I signed up for online classes in my field of choice. I’ve since then completed my courses and become licensed in my chosen profession. I’ve been hired by a reputable company that understands my recovery from this disease is not over, and will take some time, and they are willing to work with me on that. As for social aspects, including family… I’ve grown much closer to my parents who, inevitably ended up taking care of me this past year. I’ve bonded more deeply with the friends who chose to be there for me when I needed them, and I’ve gotten rid of the “friends” who didn’t. I lost a boyfriend due to the disease, (he couldn’t handle the fact that I was sick, and saw it as a weakness) which was very difficult, because I needed that companionship and love from someone, and I was unable to date at all being so sick, that I basically gave up on the idea completely. But I was blessed with meeting an incredible man, just a month after my colectomy, who knows everything about the disease, my ostomy, and everything in between, and still chooses to be with me, and loves me stronger than I’ve ever been loved before. He attends my doctors appointments with me, and spends weeks at a time with me in the hospital for each surgery.

    So ultimately… I haven’t lost anyone worth keeping around. This disease hasn’t prevented me from achieving my goals. I have experienced an array of side effects from the drugs, but nothing that has made my situation permanently worse. All in all, I feel very blessed to be where I am right now, and what I once thought was a death sentence, has turned into a gift. I will never forget what I’ve been through and what I am able to endure.


  2. avatar

    Jackie Z. says:

    May 9th, 2010 at 9:01 am

    Wowsie Lizz…Lots to think about.

    Heres the jist. I feel like I still have some modesty left…maybe an ounce or so but when I get in there…it just goes away. I like to think I still have some…but the reality is…probably not. I dont think you can be embarrassed once youre this far in. I remember the first GI I saw, wanted to do a rectal exam, and I about died. OMG sooo embarrassing….psh If I only knew then what I know now.

    As for the surgeries before 30…yea..that blows. But I think I’m more optimisitic now than I would be then. Also because I’m still young I get the choice to make decisions for the resto fo my life…like husband…kids…and factor them all into this as opposed to just having to deal with it all later. While this sorta makes things more complicated and I do wish sometimes I had already made my choices in life…and the UC was the wild card….eh I think in the long run this is the better way. I also have awesome MS…so stupid diseases and medical ridiculousness was already in my cards. Though so far.. UC has taken the cake.


  3. avatar

    naturvet count vita says:

    October 18th, 2014 at 8:02 pm

    Good way of describing, and nice article to take facts regarding my presentation topic,
    which i am going to convey in university.


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