Sunday, February 22, 2015

If You're the Next Person to Say This, Be Ready to Lose an Eyeball

I just came across a short read that everyone (with or without IBD) should take one minute to read. After 13 years of living with IBD, I've heard it all, not excluding the 11 items mentioned on this list. I think that often people are nervous and just don't know what to say and end up saying the wrong thing. We've all done that, and I try to be understanding of "foot-in-mouth" disease. But the one thing that really hits me on this list is all the mention about dietary concerns. I have been told hundreds upon hundreds of times (not once by an actual expert in Inflammatory Bowel Disease) that I brought this disease and all its flares upon myself by my diet. It's the single most infuriating/obnoxious/ignorant thing you could possibly say to me. And not that it's any of your business, but the following are just a small sample of dietary approaches I have taken:

1. Gluten Free for 6 months: didn't do shit
2. Vegetarian for 1 year: didn't do shit
3. Dairy free for 6 months: didn't do shit
4. No food at all: I have been on eleven different fasts lasting anywhere from 7-14 days (it's amazing how I saw my symptoms get aggressively worse during this time, despite the fact that I would be only on IV fluids)
5. Caffeine free for 7 years: didn't do shit
6. Aloe pill supplements for 3 years: didn't do shit
7. Fish oil for 4 years: didn't do shit
8. I haven't drank a sugary drink (other than perhaps some fruit juice when on the verge of passing out) since I was eleven
9. I eat almost exlusively organic, and have since college ended 8 years ago
10. Refined sugar has been very near absent from my diet since the age of 12. You can call me "salt tooth" if you'd like, but sugar has never been my thing
11. No alcohol for 2 years (Since college, I drink sparingly)

I've tried many combinations of the aforementioned methods, as well as many others. As the article does mention, I cannot eat raw fruit, vegetables, nuts, seeds or corn during a flare as they make my symptoms much worse. Alcohol during a flare is a no-no, as is caffeine. But I would be willing to bet that I live a healthier, more active lifestyle than most people that offer me this super dumb advice. My lifestyle has always been accompanied by exceptionally healthy eating habits. Sure, I'll have a piece of cake for a celebration but that is far from a daily norm.

I have one close blood relative with IBD, and many other relatives with related autoimmune disease. It's genetic (note: in my case, but not in all). So, do me two favors:

1. Read this quick article about what to never say to me
2. Understand that I by no means brought this disease on myself, as I would have to be clinically insane to willingly sustain such chronic suffering

I'd like to sign off by saying that of course diet plays an exceptionally important role in ALL of our lives. Dietary changes have helped alleviate the symptoms of almost ALL diseases and it cannot be understated how crucial the role our diet plays in preventing and treating all illness. But unfortunately it does not cause nor cure everything. My yogi friend who eats religiously healthy did not cause her heart disease. My vegetarian-since-birth bestie did not bring thyroid cancer upon herself, and my 85 year-old grandfather who chain smoked for 25 years and ate nothing but refined sugar and carbs and never exercised more than walking between his house and his driveway was blessed with a long and full life (who would have thought- RIP Pops, you know I say this with the utmost respect).

Let's stop beating one another up and start doing things that matter, like looking for the real cause of IBD and then looking for a real cure.

Thursday, February 5, 2015


I've been feeling about as pretty close to dead, emotionally, as one can get this past week, until I woke up this morning, tapped my beloved FB open and saw a picture of a new IBD friend's belly, with the hashtag #getyourbellyout. Don't ask me how this campaign has escaped me, but when I touched the hashtag I found a facebook group, 7,000+ strong, painted with pictures of IBD sufferers' bellies: ileostomies, colostomies, scars, staples, stitches, stomas and all. I caught a quick breath, and for a moment felt a thump of life. I'm not alone. There are others. There other survivors in these treacherous waters.

IBD is a disease that is so complex, so misunderstood. So difficult. Isolating. Challenging.... Lonely. I have more or less hidden my belly from the public, not because I am ashamed, but because so many find it shocking, offensive- disgusting, even. For those of us with IBD, this is the body we live in day in and day out, we have no choice but to accept and embrace. As a fellow IBDer told me recently, "I hated my ostomy so much until one day I woke up and realized it had saved my life. I realized that something that saved my life could not be anything but beautiful." It's a romantic concept, I'll admit. Perhaps seeing the shock of an ostomy, or stoma, does not follow our normalized conceptions of aesthetic beauty, but this idea of it, the semiotics that stand behind the symbol of the stoma, or the scars: I may not see them as beautiful, but I do see them as bad-ass. They are my battle wounds. My stars. My stripes. They symbolize, more than anything else on my body, my survivor-ship, my fight, and my story.

So, as you may have guessed, I am here today to "get my belly out." I won't apologize if it offends you. I won't offer any discretionary cautions. Because this is me. It's who I am. It's what I'm made of. And it isn't something that deserves an apology. #getyourbellyout

Katie after laparotomy #4 (abdominal surgery #6)

Sunday, February 1, 2015

Surgery Report & Little E


Apologies about the pretty big fail at updating here over the last four days. My sweet little Eva was hospitalized on Friday with a very high fever and dehydration and, as you can imagine, our world's have been flipped a bit upside down. Eva should be heading home sometime today, so everything is on the upswing over here!

As far as an update on me, my surgery did not go very well. My surgeons were very upset with the outcome, but the good news is that I came out alive and without major complication. The cyst was much larger and more complex than they had foreseen and, so, they were not able to remove it. The only way to remove the cyst is to remove the entirety of my gynecological systems, as well as creating a new j-pouch. The risks of doing this were much too great and so they decided to cut a hole in the cyst, drain four liters of fluid from it, and more or less hope for the best from here on out. The chances of re-accumulation of fluid and further complications due to the cyst are very great. The other downside is that removal of these gynecologic  systems would not guarantee that a totally different peritoneal inclusion cyst would not form, it would only guarantee that the current cyst would be cured.

Of course, this news brings a whole new host of health issues and decisions to tackle, but for now I am just focusing on healing over here. Been running fevers and my heart rate has been very high, plus I am not back on food yet, so I will be in this place for a minimum of another 1-2 days. It would be a great understatement to say that I am itching to get home to my baby girl.

So- in short, been a pretty terrible few days but it's only up from here!