Tri-ing for a Cure: Katie's Crew Tackles TriRock Clearwater!!

Perhaps you read my last blog post about my obsessive focus on ensuring that my little miracle baby does not get this brutal disease. At almost six months, we are still breastfeeding, largely because this practice reduces the incidence of Crohn's Disease and Ulcerative Colitis by close to 40%. Sadly, it's not a foolproof method. Considering Eva's genetic predisposition to this disease, I often feel my heart skip a few beats throughout each day as I ponder the very real possibility that she might too have to fight the same battle as her mother. I can't say whether Eva will be faced with these challenges, but I can say that Crohn's Disease and Ulcerative Colitis are affecting more and more children each day and pediatric diagnoses are on the rise. Breastfeeding my own child is not enough.

My husband, Billy, and I have decided that we need to help ALL of the children and adults affected by these diseases. We need to make sure that no more little boys and girls spend their days hooked up to IVs in hospitals. That no more young adults need to take semesters off for surgeries. That more men and women can start families and not have to fear about whether or not their children will fight a long and brutal battle with their health. We need more effective treatments. We need a cure.  

Billy and I are training for the TriRock Triathlon in Clearwater, Florida on November 10th to raise money to fund vital research for Crohn's Disease and Ulcerative Colitis. 82 cents of every dollar we raise will go toward this cause. If you're unfamiliar with these digestive diseases, here is why our mission is so important (and my story is just one. There are more than 1.4 million more. I'll try my best to keep it short):

In 2002, at the age of 17, I walked through the doors of my high school and crapped my pants. That is probably cause enough to throw a dollar or two our way, but I can give you quite a few more reasons. I kept crapping my pants for the next ten years. At work. At school. In the car. At the grocery store. You get the idea. Not only could I not control my bowels, these episodes were excruciatingly painful (both physically and emotionally) and would occur up to 40 times each day.

I was suffering from severe Ulcerative Colitis, an inflammation and ulceration of the large intestine. After years of hospitalizations and potent medications that caused me permanent kidney damage, dysplastic moles and arthritis among many other things, I was put on a drug called Remicade that was infused through an IV over the course of several hours. In February of 2011, my body went into anaphylactic shock during a Remicade treatment. I had become allergic to the last drug that was available to me. 

In March of 2011 I underwent a five hour-long surgery to remove my large intestine and rectum. My surgeon also created a pouch out of the end of my small intestine that would act as a substitute large intestine. An ileostomy was also created to allow the pouch to heal over the next few months. In June of 2011, I was faced with a second surgery to reverse the ileostomy so I could live with my new pouch. While I am grateful on so many levels that these surgeries were available to me and have allowed me to live a healthy life, it has been a very difficult road and living without a large intestine is far from ideal. I spent almost two months in the hospital in 2011. After my first surgery I had an extensive Portal Vein Thrombosis requiring months of anticoagulation. I also suffered an ileus and bladder infections. After my takedown surgery, I was re-hospitalized due to an abscess at my old ileostomy site and, in November of 2011, I needed a third major surgery due to the scar tissue that had developed from the first two surgeries. It's been a long road. And it's a road that will never end for me.

In November, Billy and I are running a course in Florida that does have an end. As I cross that finish line, I will know that I have won. It has been more than ten years since my diagnosis and since I have been healthy enough to even dream of completing such a race. Because of the research funded by the CCFA, these surgeries have brought me to a place where this is not a distant dream, but a reality. Let's make sure that the children diagnosed in 2013 don't miss out on decades of their lives. Help us run. Help us heal. Help us cure. Donate at http://www.active.com/donate/trirockTRISTATE13/TRI13KPearce.

A big thanks for helping us along this course to a cure!!!!

Giving My Breast Effort

It took me eight weeks to stumble upon the recipe that saved my breastfeeding relationship with Eva. It's top secret, but I'll let you in on the key ingredients: nipple butter and coffee. Breastfeeding for us has, unfortunately, been at risk since Day One. First it was a latching problem. Then it was mastitis, a breast infection that attacks your body much like a vicious flu, the only startling difference being a delirium-inducing pain shooting through your breast every time you feed your child. Think stabbing your nipple with a sharp object, then shoving it just a few inches deeper into the depths of your breast. That's mastitis. Then it was mastitis again- only this time my fever reached an apex of 104.5 degrees and included a cheery trip to the ER. "Give that shit up already," seems to be the motto of family and friends. Though I can understand why they see "sadomasochist" stamped on my forehead, I just can't give it up. I am as incapable of stopping breastfeeding as Charlie Sheen is of being a douchebag. 

Why, you might ask? I'm convinced that Eva has a dark power of possession. She owns my breasts and it is something that I cannot control. Aside from black magic, however, there are some logical reasons I am so attached to our breast-milking relationship. A substantial decrease in the incidence of childhood leukemia, childhood obesity, autoimmune disorders and other illnesses in breastfed infants is one. The fact that it provides optimal nutrition for the first six months of Eva's life is another. While I respect those that "love" committing approximately eight hours of each day to allow your child to suck at your teat and exchanging sleep at night for your child's well-being, I'm certainly not one of those idealists. Quite frankly, I don't find it to be very enjoyable at all. Sometimes I break into a cold sweat as Eva approaches my breast. I fear her aggressive latch and the stink-eye she shoots my way as she grabs my nipple like a crocodile shaking its prey to its demise. Actually, it's kind of cute. No, really it is. Painful, but endearing.

Ok, I'll get to my point. I feed Eva from my breast because I don't want her to suffer. Not like I have. Exclusive breastfeeding for at least four months has been proven to reduce the incidence of Crohn's Disease and Ulcerative Colitis by as much as 40%. Taking this preventative measure is worth a lifetime of nipple bleeding, sleep deprivation, delirious fevers and anxiety. If there is anything I can do to save her a lifetime of pain, I will do it. Each time I toy with the idea of quitting, I gaze into her big puppy eyes and cry. Hysterically. No, Eva, I won't give up. I won't give up on you. I'm your Mama, and I'll do everything I can to protect you from those vicious poop diseases. Every. Damn. Thing. 

It's been almost nine weeks now and breastfeeding is far from kink-free for us. Each feeding is a new attempt. A clean slate. If I ever slept, I would dream of a pain-free, illness-free breastfeeding relationship for me and my little one. For now, I focus on the fact that each bleeding nipple and every high fever represents pain that I can endure so my Eva doesn't have to. Maybe it's just a little bit, but maybe it's a lot. Either way, breastfeeding has made me feel like a mother more than any experience thus far. In fact, it has taught me what it takes to be a mother: Big, huge balls and even bigger tits.

Eva's Birth Story

I don't remember meeting my daughter. But somewhere in the recesses of my mind, I can recall the emotion I felt the moment I was told she was perfectly healthy and had made it out alive. Someone took a picture of me and my baby at this moment, and although I look acned and battle-worn, it was a photo that I will cherish forever. The most precious moment of my life was captured for me to remember in a way other than my own memory. That was just fine. She is here. She is safe. And she is mine.

Saturday, January 26th started out as a fairly regular morning. With the exception of some sharp back pain, I felt as normal as any ninth-month pregnant woman might feel. Yet there was a feeling that something wasn't right. An innate instinct tugged at me, telling me to call the doctor. Finally, at 11:30am, I did. We arrived at the hospital in the early hours of the afternoon. After examination and monitoring, I was told that I was four centimeters dilated, 80 % effaced, and contracting quite regularly. I was told that we would be having our little darling that evening, that they just needed to check the thinness of my blood to see if I could get an epidural to undergo the cesarean section. I now knew that my baby was breech, and that there were several medically necessary reasons that I would need to give birth via cesarean. The bloods were fine and we were tentatively scheduled to go in at 6:30pm. I was excited. Today would be the day.

Moments later my OB and several nurses rushed into the room asking why the baby's heart rate had fallen off the monitor. I told them I hadn't moved. The nurses frantically checked the monitor while my OB did a manual exam. I was fully dilated and the baby was in major distress. "We need to get this baby out NOW!...NOW I said!!" my doctor screamed. As he held the baby inside me with his hand, the medical team frantically gathered and sprinted down the hall as they wheeled my bed into the OR. I lost sight of my husband. My cries became so hysterical that my vision became blurry, my whole world was collapsing. Within moments I was in the OR with my doctor shouting directions at the nurses, yelling to the anesthesiologists, "No time for an epidural! She needs to be out, NOW!" I felt the catheter scratch it's way into me, a tube shoved down my throat and the hands of doctors and nurses scrubbing and prepping my body as quickly as humanly possible. The anesthesiologist apologized and explained that they needed to have my body completely ready for surgery before putting me under as they needed to get the baby out before the general anesthesia reached her delicate little body. I gasped between cries and my world went black.

Eva was born at 4:35pm on Saturday, January 26, 2013. Evangeline Virginia Pearce, that is. She weighed 6 pounds, 3 ounces at birth and was 19 inches long. She takes my breath away every time I peer at her magical face. My chest pounds every moment of every day as I think about just how close we were to losing her. To losing our little miracle. Though the cord was wrapped twice around her neck, little Eva let out a raucous cry when she arrived, letting her daddy know that she was here to stay.

The 26th was both the worst and best day of my life. There aren't too many days that can claim that place in a person's heart. When I think back, I marvel at the utter joy, devastating fear and pure heartache that had touched my and my husband's life in a matter of just hours. I haven't slept much since. Sure, the 12 daily feedings and diaper changes are contributive factors, but mainly I haven't slept because I don't want a moment of my life to pass without being able to look at the little love, the tiny marvel that was conceived just as miraculously as she was born. On January 26th, I won the best kind of lottery there is.

Mommy meets Evangeline

C-Section Decisions for the Pregnant J-Poucher: The Date Revealed!

Where to begin? Much has happened in the almost two months since my last post. The good news is the babe is still cooking. And she now has a "tentative" birthday. My C-Section has been scheduled for Sunday, Feb 3rd at 11am. Thankfully, the Vikings will not be in the Superbowl so Billy can in fact be present for our baby girl's birth. She also has a name. Our little girl will be named Evangeline (Eva for short), and we have big hopes that she will live up to her namesake from Uncle Tom's Cabin. One thing I am certain of is she will be just as much of an angel to me and Billy (until she turns 2). Ha!

We spent another day in the hospital since my last post. I was having constant contractions again and needed another shot of terbutaline. This happened almost one month ago and I have been doing very well ever since. It has been concluded that the pouchitis has been causing inflammation in my pelvic region, and as all of your arthritis sufferers know, inflammation does not discriminate. My poor uterus has become an innocent bystander in my IBD war. Thankfully, none of these contractions have caused any dilation of my cervix, meaning they are fairly harmless, but need to be stopped by medication if they do not cease on their own. 

On the pouchitis topic, a 6-week course of Flagyl has seemed to do the trick. I am now finally off of the antibiotic and feeling well. The doctors still suspect the infection has not completely subsided, but because it is in a very manageable phase, we have decided to halt the medications for the interim, hopefully until at least post-birth. 

Another cause of (mild) concern is the C-Section. I have been followed by my surgeon, GI, OB and hematologist on a regular basis throughout this pregnancy, and all have slightly differing viewpoints on different aspects of my impending surgery. Should my colorectal surgeon be present or just on call? Should the incision be horizontal or vertical? Will there need to be a T-Shaped incision to take care of bowel issues? At what point should I switch to heparin from Lovenox to prepare for the section? These questions, along with several others, have become points of contention. As a chronically-ill woman, I have long been aware of the importance of the agency of the patient. It is so critically important that we are self-educated and aware of our treatment courses and methods of medical care. In defense of my team of doctors, there are no simple, straightforward answers to these questions as my situation is fairly unique (natural pregnancy post-J-Pouch surgery, with blood clotting disorder and previous scar tissue trauma). We have all (yes, I have been an integral part of this decision-making process) decided that:

1. My CR surgeon will not be present, but will be called and on stand-by while I am in the OR.

2. The incision will be made horizontally for two reasons: 1. This heals much more quickly and does not cut into abdominal muscle 2. It is safer. The one cause for concern is that I have a considerable amount of scar tissue in my lower pelvic region from previous surgery/complications from those surgeries. 

3. A T-Shaped incision will only be made if scar tissue or bowel issues are present. I have been warned that this is a distinct possibility, but will be avoided if possible.

4. I will switch to heparin this week. One cannot receive spinal anesthesia while on Lovenox because of risk of hematoma on the spine, which can result in paralysis. Heparin is a twice-daily injection (rather than once-daily) and is not as effective of an anticoagulant or as well-studied in pregnancy as Lovenox, which is why the switch to heparin is delayed for as long as possible. I will switch back to Lovenox post-birth.

I have been contacted by a few other J-Pouchers who are currently pregnant or who have been pregnant post-surgery. If you don't mind sharing in the comments section: how are you approaching your C-Section (or delivery)? I would love to hear from those of you again from abroad, as I find the cultural differences very interesting!

I suspect that my next post will occur after my family has grown to 3 (well, 4. We must count my darling Figgie Wigs). 

Pouchitis in Pregnancy: Our First Trip to Labor & Delivery

Complications. They love me. Anaphylaxis, dysplastic nevi, kidney damage, abscess, Portal Vein Thrombosis, small bowel obstruction, thrush. And that's the short list. Now it's premature contractions. I  found myself hospitalized once again on Tuesday after being sent there by my OB. I had pretty bad cramps, but didn't think much of it. Thankfully, I have slightly more paranoid family members. After being blackmailed by the hubby, I called the doc, went to Labor and Delivery and, sure enough, discovered that I was having contractions 1-2 minutes apart. After receiving some terbutaline injections, IV fluids and several hours of monitoring, I was discharged home on indomethacin to be taken for the following 48 hours. Both terbutaline and indomethacin are used to stop early contractions from developing into premature labor.

This was all very frustrating. I finally called the GI doc and my surgeon the next day, per the request of my OB, as apparently it is not "normal," even for a J-Poucher, to be using the RR 25 times/day. I guess the bleeding was also of some concern to them. As a J-Poucher, I very honestly thought it was just the pressure of the baby causing the bleeding and frequency. It's just become such an unexceptional part of my existence over this past decade. Unfortunately, I do have pouchitis, a bacterial infection of the J-Pouch. Symptoms are very similar to UC, I would say only that the bleeding is not as severe and pain is very minimal with pouchitis, both welcome attributes of the infection. They believe that this infection is causing inflammation, and possibly dehydration at times, that could have led to these premature contractions. The problem? Treatment.

The antibiotics used to treat pouchitis are more or less off the table for we preggers ladies. They have put me on Canasa to try and minimize the inflammation, knowing that it will not treat the infection. Antimicrobials are the answer, but anti-inflammatories are the only safe treatment for now. The indomethacin, an NSAID, has also aggrevated the pouchitis, but after conferring with the GI ward at the hospital, it was decided that preventing labor at 28+ weeks was more of a priority than exacerbating the pouchitis symptoms. Nothing is ever straight-forward.

For now, just trying to get these symptoms under control as to avoid another onset of contractions. Between the lovenox monitoring, the pouchitis and the high-risk pregnancy, my trips to the doctors are becoming quite frequent! If any of you J-Pouchers out there have any au naturale treatments for pouchitis, dietary advice (I was put on a low-residue diet), or any comments at all I would love to hear. I do trust my doctors, but I believe sometimes as patients we can gain important insights.

Hoping Baby P can stay cooking for quite a bit longer! 29 weeks now and hoping to give this little girl a healthy start….

Baby Pearce: Her Spin on Soccer & Surviving Sandy

It's been a while since my last update, but I blame Sandy entirely. She left us without power for eight days and scrambling to organize our lives until today. Her wrath lasted a full two weeks, but we're certainly the lucky ones as many have lost everything in our region. I was unable to reach my OB for seven days and the path to the hospital was ridden with fallen trees. Not a good two weeks to say the least. Thankfully, baby, Billy and I are all safe and healthy.

We are officially into the third trimester and this is nothing short of shocking and scary. Baby is coming soon! I've developed an irrational paranoia, topped with a debilitating anxiety disorder. Nesting instincts are also at full capacity. I suppose all of that is normal! However, in light of these new developments, I would make three recommendations if you happen to come across me:

1. Refrain from commenting on my spotty, acned skin. It makes me cry. A lot.

2. My weight is congregating in my ass. There is really no need to point this out.

3. I have developed ideas on parenting, breastfeeding, birth, and pregnancy that are based on well-researched medical advice. I believe these approaches to be the healthiest and best for both myself and our baby. If you disagree, keep it to yourself. Being lectured makes my eye twitch and my fists clench.

The baby is in perfect health and I am beginning to think she has inherited the Pearce and Orelli genes. These are the two sides of her family that don't get sick. Ever. This is really great news. She is still growing ahead of schedule, her anatomy is perfect, and she is keeping heart-healthy by practicing kickboxing from 8pm - 8am. Kickboxing is usually preceded by a four to five hour session of soccer. Not insignificantly, her makeshift soccer ball is my J-Pouch. This causes trips to the bathroom every 20 minutes and, often, great but fleeting pain.  I'm so relieved that she already has a healthy appreciation of the importance of cardio exercise, I just hope that when she is born she decides to readjust to a diurnal workout schedule. And get herself a real soccer ball.

The pouch-pouncing has even caused some bleeding at times, but all of these uncomfortable symptoms subside when she decides to take a nap or try a different activity. I have also been experiencing fairly severe sciatica pain and even some very unpleasant calf cramping. I don't think either of those common pregnancy symptoms prey on the J-Poucher in particular, but they suck nonetheless. I have had to cut back on my daily walking routine and I believe this is causing my hormones to rage. Endorphins were the only chemical keeping my body sane. I am told that almost everything else is off-limits.

Well, enough of the guff. The important thing is that my body is proving to be as resilient as ever. Being a J-Poucher has prepared me for these challenges more than I could ever hope for and these 6.5 months have been my healthiest in ten years. As moody as I am, I get ashamed when I find myself being ungrateful for this opportunity to carry life within my own. It was just last year that I was fighting to keep my own systems up and running and now I am strong enough to not only carry this little girl, but to allow her to thrive. My J-Pouch and my scars are daily reminders of just how lucky I am.

Since it has been so long since my last blog, I am posting two pictures below. The top picture is of a recent trip to the Nasher Museum at Duke University, taken at around 24+ weeks. The bottom picture was taken yesterday at 27+ weeks. I've really popped these past few weeks, wouldn'tchya say?

The Pregnant J-Poucher: My Choices from Diet to C-Section

Last Tuesday, Billy and I attended our 21-week ultrasound at North Shore University Hospital. We were happy to discover that the baby is still in fact a girl. More importantly, her health is perfect. She passed all of the genetic testing with flying colors and all of the measurements at this mid-pregnancy ultrasound were right on point. Actually, she was measuring three days ahead of her due date! Because I have ulcerative colitis, they would like me to return at 28 weeks to make sure she is still gaining weight and growing as she should. Unfortunately, mothers who suffer from CD and UC have preterm births and underweight babies more often than the general population. I assume this is due to malnutrition and poor nutrient absorption. Which brings me to my dietary approach to my pregnancy…

As I've stated time and again, there is very little information available for pregnant J-Pouchers, especially regarding this issue. I have seen three different OB/GYNs since my surgeries and all three have offered me different advice and conflicting points of view. It's difficult, to say the least, to know how to approach pregnancy in the safest and healthiest way possible. But, as my baby is measuring three days ahead of schedule, I assume I am having some success in this regard and would like to share my methods. I have done a lot of research on the most important foods to eat during pregnancy: spinach, Pacific salmon, eggs, figs, orange juice, yogurt and sweet potatoes seem to top these lists. As a J-Poucher, I have a difficult time absorbing a lot of these healthy fares, especially raw fruits and vegetables. In fact, I am fairly certain my body does not absorb the nutrients from these foods at all. SO, prenatal vitamins have become an absolute MUST. Plus, I try to focus on the foods that my body is good at absorbing, especially ones that may create bulk. Sweet potatoes, salmon, eggs and yogurt have all been added to my diet on a very frequent basis. I still eat spinach (almost always cooked) and other fruits and vegetables, but I try to limit them and I also make an effort to cook them (although it is important to keep in mind that this does alter the nutritional value of these foods). Because these food groups (fruits and vegetables) almost ALWAYS create extremely frequent trips to the bathroom and a loss of fluid that is not a very good thing for a pregnant woman or a J-Poucher, I think it is important to be careful with them and monitor how they are affecting your fluid absorption and frequency and cut back accordingly.

On a similar note, the word on the street (and in the doctor's office) is that pregnant women should increase their caloric intake by 300-350 calories per day in the second and third trimesters. I have increased mine by around 500-600 calories per day. My weight gain is on track (although it's a little scary to think that I now weigh 40 pounds more now than I did 1 year ago coming out of my surgeries). I was able to gain almost 25 pounds back before I became pregnant and have gained about 16 pounds in my first 22 weeks of pregnancy. My feeling is if I gain five pounds more than I am supposed to, that is OK as I feel more comfortable knowing that my girl is getting the nutrition she needs.

Now to the C-Section issue. As mentioned briefly above, I saw three different OBs in the past year and all three had differing opinions on this issue. The first, while a very accomplished OB at NYU, had never heard of J-Pouch surgery and assumed that we should "avoid a C-Section at all costs" as to avoid another surgery on my abdomen. The second believed that I could choose between a C-Section and a vaginal birth (she, too, had never heard of J-Pouch surgery). At this point, I consulted with my surgeon and he referred me to an OB who has dealt with several other J-Pouchers in the past and he has opted for C-Section in almost all cases. My surgeon was ADAMANT about my having a C-Section. During labor and birth, there is a risk of damage to your anal muscles, as well as risk of fistula and need for episiotomy. If anything happens to my (or any other J-Poucher's) anal muscles, our J-Pouch is no longer viable. Yup, you know what that means. Permanent ileostomy. Now, while these risks are very real and frightening, it does not mean these complications will necessarily happen and some J-Pouchers do opt for vaginal deliveries. Personally, I do not want to risk my pouch and, hence, my quality of life. So, C-Section it is.

As the pregnancy progresses, my J-Pouch, blood clotting disorder and abdominal scars are having more of an impact and I therefore have much more to say about issues surrounding pregnancy after total colectomy and J-Pouch surgery. Stay tuned for more on these subjects as I continue to explore this frontier.

Oh, and here is a quick shot of my five-month belly!