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!


  1. BABY P is grow grow growingggggg!!

  2. Hi Katie,

    My name is Taylor and I was diagnosed with UC last April. I had a total colectomy in May of this year and my ileostomy reversal was last Wednesday. I just turned 18 two days ago and dealing with all this plus graduating high school at the same time has been a bit rough.

    I really want to thank you for your blog. I can't even read one post without being reduced to tears. I'm in that post-op depressed state right now so most things do that, but really your words have seriously impacted me. I haven't had nearly as many problems as you had, one partial blockage with the ileostomy and everything else has gone smoothly, so hearing how great you're doing despite all that is truly inspiring.

    I especially want to thank you for posting about your pregnancy. I struggled a lot with accepting the surgery because I knew about the decreased fertility. I felt like I was trading in children for a chance at being healthy. I felt horribly guilty about that for a while. Hearing about your baby is so relieving, it's crazy.

    Even though I haven't had many problems with the surgery, I'm also dealing with leaving home and my family since I plan to start college in late August. It has been an extremely emotional experience for me. Everything is changing, which is super scary. I'm so glad that I got the surgery done, I already feel so much better, but it is still a really difficult thing to go through, as you know. It helps to know that there are people in the world who have dealt with the same thing.

    I noticed in your blog that you were able to sleep through the night within a week of your surgery. Unfortunately, that's not the case with me. I can hardly sleep at all, I have to get up 4 or 5 times a night. It sucks. Do you have any advice about that? I know you didn't really have to deal with that, but I'm asking because I'm sleep deprived and desperate.

    Again, I want to thank you for writing this, and for helping people like me get through the difficulties of living with UC and all that entails. Also thanks for taking the time to read this, I so appreciate having someone to talk to who has been through what I'm going through.


  3. Taylor,

    Thank you so much for writing on my blog! Just as you said, it helps me a ton to talk to other total colectomy patients and is really the inspiration that keeps me writing. I completely understand your concerns about leaving for college. Even as a 27 year-old, I have found enormous comfort from being with my family through all of this. That said, you had these surgeries at a great time and I have no doubt that you are going to enter your college years at your optimal health. The worst is behind you! I wish I had my surgeries earlier as college was a time of extreme medications, frequent doctor visits, tests and flares. The worst of these flares actually happened while I was studying abroad in Rome for a semester and I still regret all that I was not able to do an see because I was largely bound to my apartment from fatigue, dehydration and incontinence. I can with 100% confidence tell you that I have never felt felt as healthy and energetic as I have since these surgeries (with the exception of my pre-UC days, perhaps!).

    As far as frequency during the night, this has been an issue on and off with me. I think directly after my takedown I was probably able to sleep through the night because I was not eating very much, and I also had a blockage that went undiagnosed until November when I experienced an acute onset of symptoms. Looking back, however, I realized that I had symptoms almost since my takedown. I never developed an appetite and experienced pain after eating. Since my third surgery in November when they lysed the adhesions that were causing the blockage, I have had a great appetite and no pain at all when I eat. That said, I do use the bathroom more frequently as well. Especially now that I am pregnant, I am generally in the bathroom every two hours throughout the night (although it was more like one-two times before being pregnant!).

    You are still so fresh out of surgery, so your pouch has so much potential. This is the advice that I practice and would like to preach: 1.Pay careful attention to what you are eating and see what causes frequency (this is different for everyone). 2. Try to not eat after around 7:30pm (or at least 3-4 hours before you go to bed). 3. Especially at first before your system is used to other foods, eat a lot of bulkening agents (white bread, white rice, pasta, potatoes, etc.). As a general rule, if it's not very healthy, it will be good for your pouch (eg. vegetables kill me, cupcakes are just fine :) ). As you get further away from your takedown you can start experimenting and introducing healthier foods into your diet (but I didn't try this for almost 6-9 months). Even just last week was the first time I tried an actual salad. 4. Try to eat small, frequent meals and not large ones.

    Hope this all helps! Let me know if I can answer anymore questions and let me know how everything is going! Be sure to look out for blood or extremely frequent stools as this could mean pouchitis (which is no big deal, especially after having severe UC, but does require antibiotics).

    Best of luck, Taylor! And thanks again for writing. I really hope to hear from you soon!


  4. Katie,

    Wow that was really helpful! I tried eating smaller and more meals and have stopped eating well before bed and I am pleased to say that I have only gotten up once a night for about a week now! That has really helped me feel better too. I'm a dancer and I used to barely be able to take class because of the pain and needing to go to the bathroom, but I went to dance this week and was perfectly fine. I obviously had to mark some stuff since I'm not completely healed yet, but it was so wonderful to be able to move like that even a little bit.

    You are so right about how great the timing was. I feel so prepared for college and I'm so thankful that I won't have to miss anything because of being sick. I am a little worried about how the cafeteria food will be for my pouch, but I'm sure I will adjust very quickly.

    Thanks so much for your advice. You are really an inspiration.