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!