Saturday, November 24, 2012

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….

Sunday, November 11, 2012

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?

Thursday, October 4, 2012

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!

Thursday, August 30, 2012

The Gender Game.. It's a …...

GIRL! Billy and I found out Tuesday evening that we will be bringing a little girl into the world in late January / early February. And we couldn't be more excited. As any parent would be, I am already worried. Worried mostly that she will inherit the autoimmune diseases that run in my family, but I am really just too excited to let that get me down. If I have learned one big life lesson in this last decade it is to live each day to its fullest because who knows what tomorrow brings and it isn't worth worrying about.

The pregnancy is going so incredibly smoothly so far (knock on wood). The Lovenox shots have become so routine that the injections really don't seem any different than taking a pill. Plus, I have acquired some good fat on my body so that I can now actually inject subcutaneously (as opposed to straight into muscle as often happened before I was able to pack on the pounds). I have been having very routine ultrasounds and our little girl has been growing and maturing perfectly. We had our genetic testing done in late July and it all came back A-OK so that is another huge relief to us as we continue this journey. My health has also been great. The pouch is still acting up, as I expect it will throughout the pregnancy, but that is my worst complaint and to be honest, I don't even really notice it. I am feeling little flutters as she moves and it is shocking that I do not feel them more as on the last two ultrasounds she was incredibly active, sucking her thumb and turning in circles as she kicked her feet.

I apologize for not updating more frequently, but because everything has been going so well there was not too much to update on in August. In my next blog (to arrive within a few weeks I promise), I want to talk about natural birth versus C-Section for J-Pouchers. This is an area that is very poorly researched , most likely because of the limited number of women who give birth after J-Pouch surgery (this is not to say that it is not possible, but many woman may already have families, may be over a reproductive age, or simply do not want children. I hope I am proof to those of you with J-Pouches that it is ENTIRELY possible). I have decided to have a C-Section. Next blog, I'll explain why.

Thanks for all the comments and well-wishes on my previous posts! I love being in touch with other J-Pouchers, it makes the journey much less lonely.

'Till next time!

Wednesday, July 25, 2012

The Pregnant J-Poucher: And into the Second Trimester!

We are trucking along into the second trimester! On Tuesday I had a follow-up with my radiologist and, unfortunately, all of the fluid is still around my ovary. What will be done about it is TBD. The fantastic part about my visit is that I got to see my little cutie's face! He/she finally has facial features! It was incredible to see. My husband, Billy, was not able to come to this appointment and he was majorly bummed when I told him that I was not able to bring the picture home! They just got brand-new sonogram machines in that don't have their printers hooked up yet. But, I promise you, the little darling is looking quite human and, if I may say so, prettty adorable. :)

A few strange things have been happening. One, I am showing perhaps a bit more than most other first time mothers would at this stage of pregnancy. I have been told that this is most likely because of my non-existant abdominal muscles. After having three major surgeries this past year, I have still not reached the point of being able to go from a laying down position to a sitting up one without complete reliance on my arms. The second strange thing is that in the last couple of days I am almost 100% certain that I am already feeling this little booger. But just in one place. Right under my old ileostomy sight. Because of the abscess issues I experienced after my takedown, my ileostomy site did not heal the way it was supposed to and has actually become a large indentation in my abdomen. The muscle never regenerated underneath either, and so this 1 x 2-inch scar on the bottom right side of my abdomen is almost like a direct portal to what lays deep inside. It is only covered by some not-so-pretty scar tissue. Now, I could be wrong about this being the little one. But he/she is swimming around in there already and I have been occasionally feeling some very strange and alien-feeling flutters in that one spot.

One other bit of big news is that I decided to leave my job. I worked through my whole first trimester, but ultimately decided that I needed to focus on this miracle in my belly for now. This was a very difficult decision. I take pride in my financial independence and never saw myself as being content staying at home. But between the almost four hours of commuting each day and getting knocked around on the subways while on dangerous blood-thinning medications, I ultimately decided that I couldn't risk the health and viability of this pregnancy. After all I have been through, it's just something that I cannot take for granted. As mentioned, I have also been experiencing extreme fatigue, frequency and have had to attend several doctor appointments each week. I of course feel extremely fortunate that I was in a position to be able to leave my job and if I had not been in such a position, I do feel that it would have been possible to be a pregnant, full-time working j-poucher. But it wouldn't have been easy. At all.

Ever since making this decision to leave work, I have experienced many rude remarks about this lifestyle and medically-relevant personal choice, from, "What are you going to just stay at home and be a pregnant princess for the next six-months?" to "I just don't understand why you would leave work six months before giving birth. It seems remarkably stupid." Some of these people do know my medical history, others do not, but this is just another example of how we UC patients and J-Pouchers have to rise above it all and remember that our struggles, angst, worries and personal lifestyle decisions are nothing to be ashamed of. After spending 10 years struggling through college, graduate school, and full-time work, all while very ill, I know enough to realize that having this baby and focusing on making him/her and myself as healthy as possible over the next six months is nothing that I should be ashamed of. And it is far from remarkably stupid.

More next week. :)

Sunday, July 15, 2012

When Tough Health News is Overshadowed by the Happiest News in the World

Last week I received a phone call from my hematologist with a bit of disheartening news. She informed me that I have a (rare) blood clotting disorder called Protein S Deficiency. This disorder is, shockingly, congenital, and so I have been walking around with it since birth. With the exception of a fairly extensive Portal Vein Thrombosis in 2011 which was attributed to the trauma of my first surgery, I have had no symptoms. Why were they testing me for this disorder now, you might ask? Well, that is much happier news. Billy and I are expecting!! And we couldn't be more ecstatic. After being told that we would likely be faced with fertility issues due to scar tissue in my abdomen from my previous surgeries, we feel truly lucky to be have conceived without the aid of fertility treatments. A truly big bright light in an otherwise somber year of health-related news.

Because of my blood clotting disorder, I will be giving myself Lovenox injections twice daily for the duration of my pregnancy, and possibly longer. This will cause no harm to the fetus, but I will have to be especially cautious being on anticoagulants during pregnancy. The risk of bleeding will be high. I am also being followed by a radiologist. After my first ultrasound my OB found a large mass of fluid around my ovary that needs to be monitored closely. The radiologist believes this was caused by my last surgery and has not been picked up on because I have not been subjected to any radiation/ultrasounds since the surgery. At first, I was upset to hear the news about both of these issues because I want more than anything to have a healthy pregnancy and a healthy baby. But, I am looking at both the Lovenox and the radiology visits as optimistically as I can. If I did not have great doctors that knew to test me for genetic blood clotting disorders, I could have been subjected to a possibly fatal pregnancy for both me and my baby. The Lovenox will keep us both safe. And this little one is already watching out for me. If it wasn't for him/her, they never would have found this fluid mass (or it would have at least gone undetected for quite some time).

Now to the important stuff. Pregnancy after undergoing panproctocolectomy and ileo-anal pouch anastamosis is an area plagued by a dearth of research and has a scant amount of information available, even with the world-wide web. This isn't surprising. There are only a few thousand people that have undergone these surgeries. Considering approximately half of them (this is an assumption) are female and only 13% of females that undergo these surgeries go on to have children, one can understand how information can be difficult to find. While my experience will only be one example of many, I want to chronicle this pregnancy as best I can for those of of you out there that have dreams of having a family after these surgeries (and for those of you out there going through it already!). I will give weekly updates.

As for Week 11, all is well and the pregnancy looks perfect. With a rough start and some tough news about my own health, I have gotten the first little dose of what it means to truly put another human being's needs before your own. In short, as long as my baby is healthy, nothing else matters. From a more practical standpoint, the pouch is already in full-on battle mode and has been since about Week 6. My frequency has increased to about 15 times/day and there is no reprieve during the night. I have also seen blood here and there. I know all pregnant women experience fatigue in their first trimester, but I can't help but wonder if my extremely low energy levels are exacerbated by these other symptoms. More to come next week, but for now here is little Baby P at the end of Week 10… And if this doesn't give all of you J-Pouchers a good feeling, I don't know what will!

Friday, March 30, 2012

For all you other IBD brothas and sistas!

This post is coming one day earlier than I had anticipated but, just like life, sometimes we can't predict our most inspired moments. Over the next few days, I will have two major UC-related moments. Tomorrow, March 31st, will be my 1-year anniversary of my pouch's creation. It was a rough year, but I made it!On Monday, I will have my second pouchoscopy. The first was done just before my takedown surgery to ensure that my pouch was ready to be used. A pouchoscopy is essentially a colonoscopy of the pouch. Since I no longer have a colon, the camera will look for leaks, poylps, fistulas, and any other issues in this man made, substatutive organ. I will have this procedure annually.

I guess the primary reason I am writing today, though, is not celebratory, nor is it to provide informative updates on my condition. Today also marks my eighth month at my new job, an environment and position that I am just beginning to become comfortable in. It hasn't been easy. At this time last year I was forced to leave my position at Morgan Stanley as I became too ill to work and was about to undergo the most trying period of my life; undergoing two major surgeries (that came with unexpected and serious complications and, then, a third massive surgery on my intestines). I had friends at Morgan Stanley. Friends that provided emotional support in the workplace, a locale where I spent the majority of my time. And let me tell you, I needed that.

Starting this new job at the time I started it has felt like an emotional marathon, requiring constant efforts at making friends and offering niceties when, in reality, I have mostly felt unstable, both physically and emotionally. I have struggled to be both cautiously open and  gingerly discreet about my chronic medical condition. Of course, I had to explain why I was abruptly absent for three weeks shortly after taking the job (an acute onset of a complete bowel blockage, requiring extensive surgery and a nearly two-week hospitalization). I had to answer questions about how I had lost fifteen pounds in three weeks, fend off inquiries as to why I don't want to try the salad, and have been required to offer explanations of frequent requests to leave early to attend doctor's appointments. And that is all fine and good. But there has been one thing that has really been bugging me. Actually, it's been eating away at me like a preying mantis feeding on an innocent bumble bee. Disturbingly insidious.

The problem is, talking about your digestive tract is taboo. How can I explain my sudden absences, my drastic weight loss, my inability to help lift heavy boxes, or eat most of the company-supplied lunches? How do I deflect questioning without seeming elusive or feeling dishonest with myself? And, most importantly, how can I get the word out that Crohn's disease and Ulcerative Colitis can be two of the most debilitating diseases on the illness spectrum when it is too f&*king taboo to even mention indirectly? When people say to me, "You had to have your large intestine removed just because of colitis?" I am not surprised. We, IBD patients, are not allowed to talk about being sick without being shunned, ostracized and detested.

I am excited about my pouchoscopy on Monday. I am excited because I have been undergoing annual and bi-annual colonoscopies since I was a 17 year-old child. This is the first year that I will not have to fast. I will not have to drink that disgusting concotion that tastes worse than dog shit (oh, and  yes, UC patients are now being asked to to swallow worm eggs from other people's shit to assuage their symptoms). But let's not talk about that, because even though this somewhat disgusting practice might offer life-changing results for millions of people across the globe, we wouldn't want to talk about shit, now would we?

So, now that I am finally feeling comfortable with some of my co-workers, I said to the woman who sits beside me, "I am so excited for my three-day weekend. Even though I have to have this procedure on Monday, I am so glad that I don't need to fast! See there are good things about not having a colon!" She shot daggers at me with her eyes and said, "Please don't talk about that around me." Now, this was the first time that I dared to mention something about my medical condition in front of her since an incident in December, when, during my first week back at work after my surgery I said to her, "I think I may need to leave early as I am having trouble sitting in my chair. My incision is not quite healed." She had given me the same intimidating glare and the exact same verbal response as she did today.

Obviously, my attempts at being more open and honest about a physically and emotionally debilitating illness that has consumed almost every aspect of my life for the past ten years have been met with insensitivity and even scorn. And today I'm feeling fed up. Do cancer patients get treated so indignantly if they talk about nausea from their chemotherapy? Do masectomy patients get ridiculed because they are flat-chested? Ulcerative Colitis and Crohn's disease sufferers have an added challenge put on their plate. How do we stay emotionally stable when people diminish and vulgarize our disease?

My name is Katie Pearce. I have no colon. I have no rectum. And feces, shit, poop, crap, bowel-movements, and excrement are a major factor in my day-to-day life. But, please, keep in mind, I do have feelings.

Tuesday, February 21, 2012

First Run-In with Pouchitis

Yuck. Got pouchitis. I am not sure how or why, but I began showing symptoms about 12 days ago. Pouchitis is an inflammation of the ileal pouch (or j-pouch) and presents with urgency, bloody diarrehea and an increase in frequency. I first noticed urgency, then blood. As I have mentioned before, frequency is an ongoing issue for me, pouchitis or not. Pouchitis becomes a chronic issue for about 10% of pouch owners, so I am just hoping I am not one of them.

After ten years of suffering from UC and spending the last year in a seemingly infinite state of convelescence, I'm sure you can understand why I am not too psyched about having pouchitis. Antibiotics seem to be helping and I have also been taking the potent probiotic, VSL #3. For now I am feeling much better, but I am concerned that I may need long-term antibiotics to keep the pouchitis at bay. Hopefully not. But in reality, if that were the case I would be lucky. Worst case scenario is "bye bye pouch" (ie permanet ileostomy). Still not terrible. Perhaps living with an ileostomy bag or pouchitis is not ideal, but one thing I am sure of is it is better than the alternative.

On Thursday the bank I work for will be hosting a bone marrow drive to see if we can find a match for a six year-old Acute Lymphocytic Leukema patient. The boy, Colin, was diagnosed shortly before Christmas and spent the holidays and the entire month of January hospitalized undergoing intensive chemotherapy treatments. Reading about this was the equivalent of ripping my heart out and stomping on it, and I truly hope that I or one of my coworkers will be able to make a life-saving donation to this truly heroic child. Colin refuses to tell his younger brother of his disease because he does not want him to worry.

Why do I bring this heartwrenching story up in a UC blog? Mostly to provide persepective. If six year-old Colin can hold on to hope and exhibit such selfless dignity in such deeply dire times, I just have to feel lucky, extremely lucky, that my worst case scenario would be a life-enhancing bag that would allow me to live. Colin might not be so lucky.

Sunday, February 12, 2012

Post-Colectomy/Laparotomy Scars

Looking back at my most popular blogs, I noticed that my most popular post was the one I wrote about my scars nearly eight months ago. I realized that I had promised to update on the progression, or healing, of these scars at certain intervals, so here we go. As a fairly vain twenty-something year old, I know I was curious enough to know what my body would look like post-total colectomy. In fact, my surgeon confessed that many women will not use him for this particular surgery because he refuses to perform it laparoscopically. He sees it as simply too dangerous to perform such a major surgery without full view of the abdominal cavity. After having almost lost my father to a robotic surgery gone very wrong for this very reason (the surgeon, one of the "world's best" accidentally, and unknowingly, perforated his bowel while removing his prostate. This went undiagnosed for several days while my father was suffering from peritonitis), I opted for the safer option and the uglier abdomen. A small price to pay if you ask me. 

Now, keep in mind these scars are fairly fresh. I was re-opened in November of 2011 due to a high-grade small bowel obstruction. You will notice a small and very faint scar on the left side of my abdomen from the sump (healing VERY nicely). The ileostomy scar on the right is also healing well and is approximately eight months old. I had a fairly persistent issue with abscesses following my takedown surgery so, unfortunately, that scar has been through hell and back. Though still raw and purple, the main incision is still healing very well and is really fairly thin. The scar continues down a few inches further.

I will be sure to update again with more scar pictures in a few months. For those of you who think you'll die without your bikini next summer, all I can say is I still had a pretty grand time in Bora Bora in a one-piece. 

Monday, February 6, 2012

The Daily Life of a J-Pouch

It's been a while since my last post and I have been thinking that this is perhaps a good sign. Whenever I run into health hurdles, I turn to my blog for self-therapy. As my friend Jen put it in a FB post, "Writing: a profession for introverts who want to tell you a story but don't want to make eye contact while telling it." Therefore, a lack of posts is a good indication of my well-being since there is, effectively, no "story" to tell about a lack of good health. But I thought that for those of you out there that are faced with J-Pouch surgery, it would probably be helpful for me to describe "J-Pouch life at it's best."

It has been almost 11 months since my first surgery, which included a total colectomy, creation of J-Pouch (ileo-anal pouch anastamosis) and creation of an ileostomy. For those of you that follow my blog or know me personally, you know that I had a second surgery in June 2011 to reverse the ileostomy and a third surgery in November 2011 due to a high-grade small bowel obstruction that required an exploratory laparotomy and an eleven-day hospital stay. Now, you might think that running into very serious complications from J-Pouch surgery (extensive Portal Vein Thrombosis, several paralytic ileus, intra-abdominal abscess, several infections and a high-grade small bowel obstruction) might make me quite skeptical about the benefits of this life-changing surgery. That couldn't be further from the truth.

Every morning I wake up and every night I go to bed, I still smile at the fact that I am no longer on ANY medications. I no longer worry about flares, about becoming debilitatingly ill or whether or not I'll be able to go on that trip I booked for the Summer. Of course, I now worry about small bowel obstructions, the chance of J-Pouch failure and permanent ileostomy, global warming and the scary, although unlikely, prospect of Newt Gingrich becoming President of the US of A. I'm learning how to control these anxieties, though, and realizing that life tends to take it's own course of which I have no control. For now, I just feel downright lucky to be living a healthy life.

Daily life with a J-Pouch? I have to empty my pouch around 5-10 times/day. It is highly dependent on what I eat or how convenient it is to access a  bathroom. I say empty my pouch because that is what it feels like. It's a different sensation than before and I'd actually like to describe it as almost sensation-less. You learn how to build your muscles around the area to be able to hold the stool in. The longer you hold it, the more uncomfortable it becomes but I have NEVER had a problem with incontinence, pain, blood, tenesmus (the urge to defecate when there is nothing there, this happened to me often with UC), or extreme frequency (with a bad UC flare I used the bathroom anywhere from 25-40 times/day).

One issue I have had is with gas. I no longer have the ability to pass gas without passing stool. This can cause some discomfort as I try to hold gas in for long periods of time as to not be running to the bathroom too frequently. Overall, though, I see it as a non-issue as the benefits of no longer living with UC and the extreme pain and anxiety that come along with the disease (not to mention the frequent need to take a "time-out" from life and all its acitivites over the past ten years) far outweigh any of the small inconveniences of living with a J-Pouch.

If you are faced with J-Pouch surgery and have any questions at all, please ask! It's a daunting surgery and it's a long road to recovery, but once you're there you will never want to turn back.