Category Archives: Pregnancy

5 years: The resentment anniversary?

It has been 5 years since I had my surgery to get an ostomy. It’s funny, I’ve been looking forward to this day because 5 years seems like such a good marker of time. And my ostomy has made such a profound impact on my life, that I felt like it would be a time to celebrate. Five years of not living with active Crohn’s disease; five years of being able to take part in the activities I want to; five years of not living in fear of finding the closest bathroom. But this has ended up being an interesting anniversary for me.

If you look back at my previous anniversary posts (One, Two, Three, Four), they are mostly filled with gratitude and hope. This year, I feel a bit more resentful and not wanting to celebrate my ostomy or what it has given me the past few years. I have not gotten into it yet on my blog, but I will soon tell you the full story of my second pregnancy and the complications that I have been having due to my ostomy. In a nutshell, I just returned home from spending a week in the hospital due to a pretty severe intestinal blockage. It’s actually pretty amazing that I did not end up requiring surgery in order to relieve it. Currently, I have a catheter inserted into my stoma to help ensure it does not collapse or get squashed between my uterus and my abdomen. It’s painful. It’s uncomfortable. I feel exhausted.

And now I am on a nearly entirely liquid diet, which is not only boring, but I’m hungry pretty much all of the time. Plus, I’m worried about getting enough calories during the day, not only to support myself, but to support my baby, too, who is not due for another 11 weeks. Top it off with a 2-year-old who I am home with much of the time and just don’t feel I have the energy to keep up with him, and it’s also difficult to move too much without hurting myself.

Suffice it to say I’ve been feeling pretty sorry for myself recently. I think I’ve been going through a mourning period of having to let go of the plans I had for this pregnancy and the hopes I held onto for a spontaneous birth close to my due date. I had wanted to spend these final weeks relishing the time I have with my son before he’s joined by a sibling and enjoying our life as a family of three. But none of that is going to happen the way that I had planned.

But you know, I’ve also realized that life usually does not go the way you planned. I am not the first woman to deal with complications during pregnancy or concerns about taking care of her other child. I also see how blessed I am that we’ve been able to handle the issue with this catheter, despite how uncomfortable it is. I am blessed to be home with my family, able to move around, and I’m not confined to bed rest at the hospital for weeks, as many women deal with during pregnancy. I am blessed to have amazing family and friends close by who have dropped everything to help us out and make sure that we have everything we need.

So instead of being resentful today, I am trying to focus on the many positives that I have going on in my life: I have a beautiful new baby on the way that I am so excited about and my ostomy played a huge part in me being able to do that, other than dealing with the blockage issues I am healthy, I am not confined to a hospital bed, I have amazing support to help me get through the coming weeks. And I know whenever this baby arrives and in whatever fashion that we will cherish the time we have together. When I think back to when my son was born, and the four weeks I had expected to continue being pregnant, I am thankful for that extra time we had together. And I’m glad to live in an area with some of the best doctors and hospitals who I know will take the best care possible of my little one, no matter what happens.

This anniversary is a little different from the ones previous, but it may end up being one of the most significant ones I experience. Life is not always going to go the way that you want, and it has a way of trashing many of the best laid plans, but that doesn’t mean that all is lost or that we should just give up. My ostomy has given me a great 5 years, and I look forward to what it will allow me to accomplish and experience in the future, despite the discomfort it may be causing me for the time being.

The second time around

And how I plan to better manage my pregnancy with an ostomy

Here we go again! We are excited to announce that we are expecting our second child this July! My husband and Waylon and I are so excited to grow our little family. (You can see W showing you where the baby is!)

new baby pregnancy stolen colon ostomy ileostomy colostomy urostomy ibd inflammatory bowel disease crohn's ulcerative colitis

It’s amazing the difference already between the first pregnancy and the second in as much attention you devote to it. With my first, it was pretty much all I thought about, all of the time. This time around, between chasing after a toddler, finishing up my master’s degree and just everything else I have to accomplish in a day, I feel that I’ve had very little time to really just think about it and what all it means. I, myself, am a second child and I suddenly have a whole new appreciation for what that means and my place in my family…

For those of you who followed along with my first pregnancy, you know that I had complications in the end—specifically an intestinal blockage—that led to a series of hospitalizations, a dreaded NG tube, and ultimately to my induction just before 36 weeks when I gave birth to my son. So obviously, we had some things to consider when we discussed the idea of having another child.

So how do I plan to make this pregnancy different from the first? Well, in all honesty, I’m not sure that I can, but I sure as hell am going to try. While I was being cautious with the foods I ate later in my first pregnancy, I realize now that I was not being cautious enough. There were a couple of times that I ate things that were probably a little too risky. Knowing now what the consequences of that can be, I will be sure to be more vigilant in making sure that I avoid problem foods and make smarter decisions. I have already noticed a time or two that I have felt a little blocked up, although nothing that some extra hydration and careful eating couldn’t fix, but it does make me wary about how the next few months are going to go.

I have bandied the idea of going on a mostly liquid diet during the final weeks, but the reality of living for 10+ weeks on a liquid diet when you’re pregnant would not be an easy task. At the minimum, I will be employing a some sort of low residue diet during that time, in hopes that I do not run into the same issues I experienced last time.

But other than some extra caution and some food avoidance, I can’t say that I have done anything differently this time than I did the first time. I have been trying my best to stay hydrated, but that’s a constant struggle, pregnancy or no pregnancy. I am prepared with some larger sized wafers for once my stoma grows, which I expect it will again, and potentially prolapses.

Even with the complications last time, I am still not considered high risk by my obstetrician. I do know they’ll be keeping a slightly closer eye on me, especially as I progress further along in the pregnancy, but the ostomy really doesn’t change any of my treatment, unless there is another complication.

For now, I am focused on trying to eat healthy, but smart from an ostomy stand-point, drink lots and lots of water, and hopefully enjoy a complication-free pregnancy.

(You can read some about my previous pregnancy, as well: All about pregnancy with an ostomy.)

A new meaning for World IBD Day

I realize that today is World IBD day, but that is no longer the significance that this day holds for me. It was one year ago today that I was first admitted to the hospital with an intestinal blockage during the third trimester of my pregnancy. It was the beginning of the end of my pregnancy.

world ibd day inflammatory bowel disease crohn's ulcerative colitis ileostomy stephanie hughes anniversary pregnancyTwo days before, I had sent out a tweet about feeling a little blocked up. Honestly, at the time I didn’t think it was that big of a deal. It felt like the number of other times I had a mild blockage that would clear on its own if I drank a lot of water and stayed away from fibrous foods. Even when I went to the ER last May, I really only went because I was pregnant. If I hadn’t been worried about my son, I seriously doubt I would have gone to the hospital. It was more about being extra cautious than actually thinking there was a problem. After about a day in the hospital, I already was feeling better. I remember my surgeon coming in to talk to me and telling him I felt great and didn’t see a reason I needed to stay any longer.

this is ibd postLittle did I know how much worse it would get over the coming days and weeks. Two days after being released from the hospital, I was in tears over the amount of pain I was in and would end up taking myself back to the hospital in the morning. And three weeks after that, my son would be here.

For me now, this day is a reminder of how much IBD can impact your life and the lives of the people around you. My pregnancy and my son’s birth did not go as I had planned. Thankfully, everything turned out well in the end, with a healthy baby and a healthy mom, but it could have gone another direction. I know if we decide to have more kids, I will go about things differently in the hopes of preventing another blockage. But truth is… with a disease like IBD, you never know what’s going to happen. And that’s why awareness is so important. So people have the information they need in order to make the best decisions. So others understand, even just a little bit, what it’s like to live with an unpredictable disease. And so one day a cure can save others from spending World IBD Day in the emergency room.

Pregnancy with IBD Twitter chat

I know a lot of you followed along with my pregnancy with having an ostomy and IBD, so I am excited to take part in a Twitter chat discussing pregnancy, birth and parenthood while living with IBD as a part of the IBD Social Circle. I will be co-hosting with Amber Tresca of About.com, so we will be able to discuss our personal experiences with our families. Dr. Loftus of Mayo Clinic will be joining, as well, to give us the more scientific and medical perspective.

The Twitter chat will take place next Wednesday, March 9, at 12:00 p.m. EST. You can follow along with the hashtag #IBDSC and by following our Twitter accounts: @smlhughes@AboutIBD / @EdwardLoftus2.

I hope you’ll join us for this chat! We’d love to hear about your experiences and to answer some of your questions, as well.

IBD Social-Circle-TwitterChat 1 Final

**Janssen Biotech Inc. is paying for my time to advise on this chat. All thoughts and opinions expressed will be my own.