Category Archives: Ostomy

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.)

Dealing with intestinal obstructions

I am never not surprised by how debilitating an obstruction is. It’s so much more than an obstructed feeling in your stomach. For me, it makes my entire body ache. It makes me feel run down. More often than not, my first sign of an obstruction is simply feeling bleh. (Yes, I believe that’s the technical term.) Even before noticing a lack of output or stomach pains.

This morning, I woke up not feeling great. Sort of nauseated and tired. It wasn’t until after breakfast (which I didn’t eat) that I noticed my bag filling up with liquid. That’s when I realized why I had been feeling run down, even last night. Now it’s the afternoon and I haven’t eaten anything all day, but I have emptied several bags of liquid output, and everything hurts and I really wish I could curl up in a ball and stay there, praying that it passes. However, I have a 15-month-old, so that’s probably not going to happen.

I have written about blockages a couple of times in the past (See: My first major blockage – which still makes me laugh that I considered it a “major” blockage. After having a major blockage later on, trust me, it wasn’t. And see: Intestinal blockages during pregnancy), but since they are an ongoing concern, I wanted to address them again.

So how do you deal with an intestinal blockage or obstruction?

blockage obstruction intestinalThe first step is doing what you can to avoid them. You do this by hydrating (which I have not been doing well) and by watching what you eat (which also could have used some work this week).

But once you have a blockage of some sort, the next step is to get back to hydrating. Whether you’ve been staying hydrated or not prior to the obstruction, do it after a blockage starts. A blockage can be caused by dehydration and it also causes dehydration by pushing out only liquid output. Hydration can be helpful in getting the blockage to start moving again, as well as simply helping you stay healthy outside of that.

Next, be cautious what you eat. If you’re anything like me, you likely don’t want to eat anything anyways, but if you are hungry, I suggest sticking with non-solids, such as smoothies, yogurt, applesauce, etc. This way you can continue to take in nutrients, but these foods shouldn’t add to the blockage that has formed.

From here, there are a few things you can try… Massage your stomach. This can help get things moving, possibly even break up a smaller obstruction. Use a heating pad. Of course be careful of putting heat on your skin, but the warmth does help your muscles to relax which can get food moving again. Take a warm bath. Another way of trying to relax your muscles. You can also simply wait for it to pass, which it will sometimes.

A lot of blockages can be taken care of at home in these ways, but do be willing to go to the doctor or hospital if things get worse. Severe blockages can lead to more complications, so if you feel that the blockage is not going to pass easily, the hospital is your next option. Only you know your body, so pay attention to the signs it gives you. If you start vomiting or are dealing with extreme pain, it’s time to get medical help. The hospital will make sure you are staying hydrated and getting the nutrients you need, even if you are unable to eat anything. They may opt for using an NG tube, which is not pleasant at all, but it really does work. If a blockage gets too severe, they may consider surgery, but that’s a last option.

Once a blockage passes, you may still deal with some lingering issues. I like to call it an “obstruction hangover,” because the next day I usually still don’t feel quite right, even if I am feeling a lot better than before. I try to take it easy, drink lots of water and stick with either liquids or easily digestible foods. And usually after that, I feel back to normal.

I hope you never have to deal with an intestinal blockage, but if you do, these are some of the things I have found along the way that have helped me get through them. For those who have been through an obstruction, what has your experience been? Do you have other tips that might help somebody get through a blockage?

Will run for ostomy awareness

In just a few short weeks, World Ostomy Day 2016 will be here. And yes, it’s a day for raising awareness, but I think I have found a better way to celebrate the day… And that’s by doing things that I wouldn’t have been able to do prior to getting an ostomy. For me, that has been running.

will run for ostomy awareness 5k resilience

For the past 2 years, I have taken part in the WannaWearOne Ostomy 5K. The first year I did it from out of town as a part of the virtual race and last year I was able to compete in a local race in Durham, NC. (But that isn’t the only local race! Keep reading for more info!) ostomy run race resilience wannawearone This year, the race is taking on a different name: Run for Resilience Ostomy 5K. And I think that’s a very fitting title, because it’s about showing that having an ostomy does not have to stop you from doing whatever you want to do.

Last year’s race was not an easy one for me. I was about 3 months postpartum and I hadn’t been running in a very long time. But it was important to me to take part in this race and to do what I could to show myself and others that having an ostomy was not going to hold me back. I figured I was probably the last person in the race, but amazingly I was not, and I actually ended up winning 3rd place among ostomates in the race! (Check out my LIVE IN ACTION video below!)

So I encourage you this World Ostomy Day to get involved. The Run for Resilience is a great opportunity to do so. (And here’s a Where’s Waldo? opportunity for you: Can you spot me on the Registration page??) The run features races in 5 physical locations–in both the US & the UK–and a virtual race available for everybody to take part. Basically, the virtual race allows you to run wherever you are, while still being a part of the event and the awareness raised. Just be sure to post pictures using #IAmResilient! The races take place on different days during October, so check out the website for what’s happening near you.

Even if running isn’t your thing, find a way to do something. Think about things you couldn’t have done before your surgery. Maybe it is eating a certain food or sitting through a whole movie or going hiking. Find whatever it is and do it! Show yourself and the world that you are resilient and an ostomy is not going to hold you back!

ostomy run race resilience wannawearone