Tag Archives: surgery

Bowel obstruction during pregnancy, earlier than expected

Just a few days shy of being 28 weeks pregnant I got a bowel obstruction. Intestinal blockages are something I dealt with during my first pregnancy which resulting in my son being born at almost 36 weeks. (You can read more about my experience with blockages and my son’s birth story.) This time, the issue came up a full month before it had my previous pregnancy, which really threw me off. I had prepared for the possibility of a blockage and had determined to switch up my diet at 30 weeks, in hopes of preventing one from occurring, but obviously this one did not wait that long.

I woke up in the morning feeling horrible and I called my mom to pick up my son because I knew I would not be able to take care of him. I was hopeful that with some bowel rest, physical rest and hydrating that things might start to clear up. I was actually a little unsure as to whether or not it was a bowel obstruction because of where the pain was. With my first pregnancy, the obstruction was just a few inches from my stoma, so the pain was concentrated in the lower right portion of my stomach. This time, it was across the top of my stomach. I ended up spending the entire day in bed, but things only felt worse as the day went on. I was in pain, throwing up, and could hardly stand up. I actually ended up calling an ambulance to take me to the hospital, which was the first time I’d had to do that since my surgery. I had hoped that by traveling in an ambulance that I would get checked right into the ER, but that was not the case and it ended up being a much bigger deal because they did not want to transfer me to the Women’s Hospital at this point, which is where I went with any issues during my first pregnancy. But I won’t bore you with all of the details of finally getting admitted to the right place for both me and the baby.

ng tube hospital intestinal blockage bowel obstruction ileostomy ostomy crohn's disease ulcerative colitis ibd inflammatory bowel disease Once I did admitted to the Women’s Hospital, the first order of business was getting fluids and a fabulous NG tube. (I’ve written about getting an NG tube previously, so I’ll refer you back there for more on that experience, because this one was pretty much the same.) There were lots of tests those first few days, which included a couple of X-rays and a CT scan. As a pregnant woman, this is a difficult decision to make on how to handle the need for radiation, as it can be harmful to the baby. Thankfully, I was already in the 3rd trimester at this point, which means the baby’s internal organs are formed and the radiation poses much less of a risk. I still did not like having to go through that, but I also know that I have to be healthy in order to provide what my baby needs. The CT scan showed just how blocked up I was. The doctor showed me the pictures and my entire small intestine looked like fat sausages (that’s the best way I can think of to describe it). I have no idea what a healthy intestine looks like on a CT scan, but even I could see that this was not what it was supposed to look like. And that explained why I was having pain across the top of my stomach, because that’s how far the blockage extended.

I do not remember a whole lot from the first days, but I know by my fourth day there they tried inserting a catheter into my stoma, which is what they ended up doing with my previous pregnancy. This helped incredibly and I finally started getting some output from my stoma and some relief from the pain. The next day they were able to remove the NG tube and I started being able to consume some liquids and eventually some very bland hospital food. Thankfully, things continued to improve over the next couple of days, and even though I was still in a lot of pain, I was able to function.

Of course during this whole time they were monitoring my baby closely, but thankfully there were no complications in that capacity. I was dealing with some mild contractions while I was there, which is likely due, at least in part, to dehydration and just to the stress of the situation. It was not anything that turned into an actual issue. Honestly, the baby seemed very unfazed by the whole ordeal.

ng tube hospital intestinal blockage bowel obstruction ileostomy ostomy crohn's disease ulcerative colitis ibd inflammatory bowel disease son family pregnancyI ended up spending 7 days in the hospital with this blockage. It is actually pretty amazing that I was able to avoid surgery considering how blocked up my small intestine was. I am so thankful that it was able to pass due to the NG tube and the catheter without having to go through a surgical procedure, especially at 7 months pregnant. Probably the most difficult part was being without my son for that time. I stay home with during the week, so it’s usually just me and him, and it felt horrible not being able to be there for him during this time. He finally was able to come visit me once I started feeling better. I’m grateful to my amazing family who stepped up and made sure he was taken care of during this time. In the end, I left with a new low fiber diet plan and a catheter sutured to my stomach, but more on that later.

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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!

The Stolen Colon turns 4

It was 4 years ago today when I started The Stolen Colon. At the time, I was dealing with some really severe Crohn’s disease symptoms and I wasn’t even sure yet what I was going to do as far as surgery or treatment or anything. I say I wasn’t sure, but really, I think I knew surgery was inevitable, but I wasn’t able to fully admit that quite yet. (I mean, why else would I call my blog “The Stolen Colon” if I didn’t know what was coming??) I remember after leaving the consult with my surgeon to set up the surgery, I asked him how soon I needed to let him know if I wanted to cancel so as to not mess up his schedule too much. I knew I wasn’t going to cancel, but knowing that I wasn’t 100% committed just yet gave me a little peace of mind.

I started this blog because I was scared. I was scared of the surgery and what having an ostomy bag would mean for my relationship, my self-esteem, and just my life from that point on. I can’t remember the particular moment that I decided I wanted to start a blog, but I remember searching for people who had been through this surgery before me. I found a few brave individuals out there who were sharing their stories and I will always be grateful for them. But even then, I didn’t find enough. I remember thinking, “If I have to go through all of this, I at least want it to be helpful to someone else.”

the stolen colon blog post ileostomy crohn's disease inflammatory bowel ulcerative colitis stephanie hughes

I felt very alone during this time. I felt like no one could understand what I was going through and the decision I was having to make. So I started writing about it. It was partly to help myself process everything, and partly because I didn’t want other people to feel as alone as I did. I had no idea at the time the world it would open up to me.

My first post was titled: The blog I didn’t want to write. And that still rings true. I never wanted any of this. I never wanted to be “that girl who blogs about her ostomy.” But in doing so, I realized how many other people could understand what I was going through and had dealt with the same uncertainties I had.

You may also notice that I focused on Crohn’s disease in that first post, because that’s what I knew and what I was already comfortable with. I don’t know that I had much to say about ostomies at the time other than I didn’t want one! It’s amazing to think about how much has changed in just 4 years.

By starting The Stolen Colon, I have been given an opportunity to use what I have learned and experienced and help others not feel the same way I did when I was going through with my surgery. I am so happy that there are many more advocates writing and talking today, and there is a much bigger support network for those living with an ostomy. And while I may not have wanted this, I am glad for where starting this blog has led me to today. And I look forward to where it will go from here.