Saturday, May 24, 2014


So, I've been pretty negligent about writing here or over at Dear Evangeline as of late, mostly because I've been sick. But, like all the other times I've been diagnosed with something strange and snarly, I'm coming here to reach out to all of you IBD gals and girls to hopefully connect with someone else out there that is going through similar crap (why is it so difficult to avoid puns when talking about IBD?).

So three hospitalizations so far for 2014, but thankfully the last one yielded a definitive diagnosis: Peritoneal Inclusion Cyst. Here's the issue: they are exceptionally rare and even in the vast metropolitan area of our nation's greatest city I am having trouble finding a surgeon/doctor that has experience with PIC. In fact, my surgeons and doctors have spent the past two weeks passing the problem along from one to the other and then back again. GI thinks its in colorectal and GYN court, but neither GYN nor colorectal surgeon want to take it on and keep passing me along like a hot potato. GI and radiologist think this enormous tumor/cyst (measuring 12 x 11 cm. and containing 500cc's of fluid) is causing my bowel blockages and rectal bleeding as it is causing major displacement and distortion of my J-Pouch, while pushing against the site of anastamosis and seemingly causing loops of small bowel to twist. Colorectal and GYN don't agree and believe I have additional adhesions higher up in the bowel causing these recurrent blockages and have diagnosed me with "chronic small bowel blockage." All agree something needs to be done about the PIC, though, but no one wants to take care of it.

So, IBD brethren, I come to you for help. I am on my way to Interventional Radiology to see if it can be drained percutaneously (though I have been told there is a low probability of this being effective as I have many adhesions in the way). Next step is another major laparotomy. Problem is, no surgeon wants to touch me. The cyst is occupying my right abdominal cavity, shifting my organs over to the left and is interfering with many different systems, making it easy for my GYN and colorectal surgeons to wash their hands of it. If IR doesn't work, I'll need a surgeon. Anyone have any NYC recommendations? My docs have been consulting with GYN oncologists, but they too want to bounce it back to colorectal. So who the hell will do this surgery? Anyone? Anyone? Of course crossing my fingers big time for a successful IR intervention.

In my brief research on PIC, I noticed that almost everyone out there that is so lucky to encounter one also has IBD, usually Crohn's. So- any of you Crohnies out there know anything about PIC?
It seems as though only 228 cases have been reported in the past 19 years, but hoping one of my readers is one of them.

And lightening strikes again…..

Wednesday, May 21, 2014

Team Challenge Rides at SWERVE Fitness for CCFA

For those of you in the NYC area- Team Challenge is coming to SWERVE Fitness on June 8th! 

Come ride at NYC's hottest new spin studio, SWERVE, at 1pm on Sunday, June 8th! 100% of the proceeds from the class will be donated to the Crohn's and Colitis Foundation through Katie Pearce's Fundraising Campaign. What YOU need to know:

*$35/person (100% tax deductible donation to CCFA)

*Sign up by making a $35 donation here. If you would like to donate more than $35, please email Katie to let her know that part of your donation is to reserve a spin bike.

*50/50 raffle to be drawn with super special prizes awarded to the winning team! SOUTHDOWN COFFEE will also be selling their COLD BREW coffee post-class with 100% of sales going to CCFA!

Gather your friends and sign up to compete on the RED, BLUE or GREEN team and get your SWERVE stats after class (and during!). Visit SWERVE's website to learn more about their innovative approach to spinning!

ALL welcome. Hope to spin with you on June 8th! Together, we can ride to a cure.

Saturday, May 17, 2014


January 2011: It's 9am and I finally feel well enough to make my way to the kitchen. I have spent the past three hours in excruciating pain while also losing significant amounts of blood. The longest I was able to avoid la toilette all night was one hour and Prednisone had my mind racing for the time in between. I slept an hour or two. Hell, better than last night at least.

I look in the fridge and find myself frightened of everything I see.

"Do I eat the strawberries for their anti-inflammatory effects?

"No, they could cause a mechanical blockage."

"How about an egg with Spinach to help with my iron deficiency?"

"No, the spinach will have me in the bathroom every 20 minutes instead of every 40."

Today: I feel hurt that friends and family think I bring this on myself by what I eat. If they only knew how much excruciating thought went into everything I put in my mouth. If they only knew the cost of my organic grocery bills, probiotic bills, aloe vera pill bills. If they only knew that diet has oh so little effect on this genetic assault of my mind, body and soul. I know this because I haven't eaten in three weeks. I know this because I've tried every so-called "ulcerative colitis-friendly" diet under the sun. I know this because there is not possibly one more book I could read or one more diet I could try. This disease runs deep inside me. It's at my core. In my DNA. There is no running from it. There is no eating it away.

There have been many medically necessitated fasts in my decade with ulcerative colitis. Not because food is the cause, but because my digestive system was simply too wrecked to put anything into it. This time around, I can't eat because of the pain. I can't eat because of the fear. I can't eat because my mind won't let me. Each time I put something into my body to nourish it, I am punished with mind-blowing pain and a fear that it won't make its way through. That I'll land myself another trip to the hospital to have yet another surgery to save my life from yet another small bowel blockage. This is no way to live. I don't wish this disease on the dead.

IBD is not IBS. IBD is not just diarrhea. IBD is not caused by the patient. IBD has deadly complications. This is why, after 9 years of silence, I decided to speak up in 2011. No one knows how horrifying IBD is because we patients rarely have the guts to face our disease and almost never have the extra strength to publicly discuss its brutish consequences on our daily life, our family and our conscience. IBD is a cancer without the sympathy. We IBD warriors have done chemo, we've been through the endless surgeries, the nausea, the pain, the fear, the vomiting, the complete disruption of life, of self, of sanity. But IBD and Team Challenge aren't ringing in the research funds like Susan G. Komen because the misconceptions about these diseases run deep. Sure, some Crohn's and UC patients with mild disease can achieve remission with diet and alternative therapies, just like some cancer patients. But IBD isn't caused by food anymore than cancer is. And I don't encounter too many cancer patients who are asked to undergo fecal transplant. IBD really is such a "shitty" disease.

But the point is, these stigmas run so deep. Perhaps the most painful part of this disease is not the physical suffering, but the uneducated and downright cruel assumption that we do this to ourselves. That my disease is caused by me. It's like having cancer, but having everyone look at you like there is such a simple fix. Like YOU are the cause. YOU are the problem.

But,  the simple fact remains that there are too many adults and children living in fear every day. Too many of us are unable to live because there is no cure. Until a cure is found, IBD patients will live with the consequences of these diseases from the moment of onset to the moment of our death, with often nonexistent periods of remission.

Of course we should be raising money and awareness for the diseases that have high chances of sending us to the grave. But shouldn't we also give thought to the diseases that have so many trapped in a living grave?

Donate today.

Thursday, May 1, 2014


Hello, fellow IBDers! I've started a "different" blog, which is why this one has been so neglected as of late, but today's post was on running with a j-pouch. If you'd like to check it out, click here.

On this topic, however, I'm wondering if any of you out there are runners and have a j-pouch? If you're willing to comment publicly on here, that's wonderful! If not, please reach out to me via email! I would love to be in touch with someone who is in the same running "shoes."

Hope to hear from some of you!

To health and happiness for all,