Tag Archives: stoma

What is now in place of the colon that was stolen.

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?

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.

What’s “normal” 4 years after an ostomy?

ostomy selfie stephanie hughes stolen colon crohn's disease inflammatory bowel diseaseHow can 4 years seem so short and so long at the same time? It seems like just yesterday I was scared and feeling horribly sick preparing for this surgery, but at the same time, I almost can’t remember what it was like beforehand. It’s been 4 years… 1461days, to be exact, that I have been living with my ileostomy.

The good news is, throughout that entire time, I have never regretted my decision. Yes, I have had times that I resented having to make the decision in the first place, or wished none of this had ever happened to me, but that’s not anything I can change. Based on where my life has brought me and the decisions I was faced with, I am so glad I made the choice that I did.

Living with an ostomy is a funny thing. Like anything else, after time you get used to it and you stop thinking about it all of the time. It’s like my phoenix tattoo I have on my forearm. phoenix tatI see this tattoo every single day. It is always right in front of me. Yet, there are many times that it will suddenly catch my attention and I will realize that I haven’t noticed it in a while. It has simply become part of the scenery of my life.

I feel the same way about my ostomy. Obviously, I have to deal with it every day, multiple times a day. It’s impossible for me to go a day without me thinking about it at all, yet I still find at times that I have “forgotten” about it for a little while. Or at least I haven’t paid any more attention to it beyond the usual daily maintenance. It, too, has slipped into the background.

Obviously it’s not like this every day. I still have times where it very loudly announces its presence in the form of a leak, or itchy skin, or a literal loud noise. But after 4 years, it’s so ingrained into me as part of my normal routine that it often takes something like that to make me pay a little extra attention.

And that is what my normal has become. I truly don’t remember what “normal” is—at least normal for the majority of the population. I don’t remember the last time I had a normal poop and I definitely will never have one again. And it’s thoughts like this that still freak me out a little bit. Never. It’s such a big word. It’s so… final.

Despite how much of a blessing my ostomy has been and how much it has changed my life for the better, I still struggle with the nevers and forevers. I wonder if I will ever get used to them. I don’t honestly know. Ask me in another 4 or 40 years and maybe I can tell you then, or perhaps I’ll still be wondering.

This is a major reason I try to simply take it a day at a time. When I think about my future, I don’t think about my ostomy. I’m not sure if it’s a good or a bad thing. I think it’s good because I’ve never wanted it to consume my life to the point that it’s all I think about and it’s a constant, painful reminder of how my normal compares to other people’s interpretation of normal. The fact that I don’t automatically think about it when I picture the future makes me feel I am holding to that. But I also realize that when I do consciously think about having an ostomy for the rest of my life, it still hits me kind of hard. It’s almost like there’s still this small part of me hoping that one day I would no longer have it. (Trust me, though, there’s nothing left in there. It’s not going anywhere!)

Even so… while it may be difficult imagining the rest of life with an ostomy bag, I will always be thankful for it and how much it has changed my life. The past 4 years have absolutely been some of the best of my life and I am so thankful that my ostomy has allowed me to live it much more fully than I had been previously. So I guess here’s to the next 4 or 40 or 400 years with an ostomy!