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. :)


  1. Thank you so much for such a wonderful blog and for sharing your story. I have had UC for 10 years and will be having my ileostomy reversal this Friday. Your story makes me hopeful that my husband and I will be able to have another baby after I have recovered. We have a 2 year old son, and my UC got out of control shortly after he was born. I also have a blood clotting disorder (Protein C deficiency) and had Lovenox injections twice per day. After you have the baby, you'll forget all about the shots:) Good luck with your pregnancy, and I hope everything goes well!

    1. Amanda,

      Thank you so much for writing. It sounds like you and I have had some very similar experiences!! I am sure you and your husband will be able to have children, don't give up hope. After going through these surgeries, I am sure you would agree with me that fertility treatments, if you do happen to need them, should be a walk in the park. Not to diminish the emotional difficulties of that process, but knowing that you will have a very, very good chance at expanding your family should be a great source of comfort. I know it was for me!

      Thanks again and best of luck with your recovery! I hope your takedown went smoothly?

  2. Hi Katie,

    Thanks for responding:) I hope your pregnancy is going well. It has been a week since my takedown surgery. Surgery went really well. Right now I am just struggling with getting used to how my body works with a j-pouch. I feel a little like I did before I had any of my surgeries because I have to go to the bathroom so often. How long did it take before you were not rushing to the bathroom all the time after your takedown? Right now I am struggling to get any sleep at night. I know it will get better, but I'm really hoping it will be sooner rather than later!

  3. Amanda,

    I know exactly how you feel. It can be extremely discouraging coming out of takedown surgery, when you feel as though you are left with a very permanent situation that is certainly less than ideal and you realize that you will use the bathroom almost as frequently as a UC flare. One thing I can promise you is that it WILL get better. You have to remember that you have not used your muscles in that area in months and it will take time to rebuild them. Not only will your muscle control improve, your j-Pouch will also slowly expand and stretch over time, which will help with frequency. Your body also has to readjust to certain foods. Your diet (or at least the one your body will tolerate best) will most certainly be different than it was before surgery. It's going to be frustrating, but it will definitely take time and patience. To be perfectly honest, I still don't usually sleep throughout the night and at best, I use the bathroom 5 or 6 times per day (usually closer to 10 or 12 now that I am pregnant). Things that will help:

    1. Eat a low residue diet. Potatoes, white pasta, white bread. Do not try to branch out just yet. Keep it simple and high carb. Salads, fruits, vegetables will be intolerable to you at this point (as I am sure you are not even allowed to eat them). It took me 6-9 months to really start eating as I used to, and even know I try to make sure I eat some white bread or something easy to digest with almost any meal.

    2. Do not eat after 7 or 8 pm (or at least 3-4 hours before you go to bed). And make sure to empty your pouch right before going to bed.

    3. Eat many small meals throughout the day rather than big meals.

    I break all three of these suggestions all of the time. Sometimes I am at a party at want to pig out, sometimes my husband doesn't get home until 10pm and that is when I eat dinner and other times I am in a rush and grab an apple to eat on the road. As long as you chew VERY WELL, none of this behavior will hurt you, you will just be in the bathroom more often. The big, big thing to keep in mind is your pouch will never cause you pain, you will learn to control it so that you will never have accidents or extreme urgency, and you should almost never see blood. The worst is that you have to use the bathroom more frequently, which in comparison to having UC is not so bad.

    All that said, I am confident that you will be happy with the Pouch in the long run. I think you have to suffer through UC to be able to appreciate a pouch because it will never be the same as a colon, but I think us UC patients have a very "enlightened" perspective on life and that is something that we should all cherish!

    Best of luck and let me know how you are doing and if you have anymore questions!


  4. Hi Katie,

    I just wanted to let you know that it'll be 3 weeks post-op from my takedown tomorrow. I have improved so much since last week! The last 2 nights I have only had to get up once to go the bathroom! It's a miracle!!! I can definitely see the light at the end of the tunnel now. Thank you for your encouraging words.

    I hope your pregnancy is going smoothly. Do you give yourself the shots? I was not so brave, and my husband had to give them to me while I was pregnant and before all my operations. I have only been brave enough to give myself one of the hundreds I have had in my life. I hope you are doing really well:)

  5. Amanda,

    So glad to hear you are doing so well! And things will only get better. You will continue to notice improvements for up to a year.

    The pregnancy is going great! I finally just updated my blog. To answer your question, I did not used to give myself these shots. When I was on Lovenox last year, I only gave myself the shots when I was being discharged from the hospital (which was more times than I would have liked), as they would not discharge me until they knew I could inject myself. My mom was generally the lucky one to inject me. This time around, however, I have found that I am generally alone when shot time comes as we just moved into a new house and my husband works crazy hours (so we don't see much of each other during the week). By the third day I was giving them to myself, and it was not at all easy, but I am so used to them now that it is not much different than taking a pill. :)

    Please keep me updated on your recovery! I love hearing J-Pouch success stories!! What doesn't kill us only makes us stronger…



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