Category Archives: Out of the Bag

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy
All of your ostomy questions answered: What is an ostomy? How do you shower with one? How is a colostomy different from an ileostomy? What about sex with an ostomy?

Everything you wanted to know about living with an ostomy, we’re letting it all out of the bag!

For all the mothers—whatever that might mean

I have mixed emotions about Mother’s Day. Part of me sees the immense value of taking time to thank and appreciate those who gave us birth, who raised us, who taught us, who loved us—whatever motherhood has looked like in your life. These women are strong, brave, and loving and, damn it, they should be celebrated! As a mother, a daughter, a woman, I definitely think that the role mothers play is often undervalued and underappreciated. But part of me feels this day merely sets women up for disappointment, as we are bombarded by social media as to what Mother’s Day is supposed to look like and how your day is just not measuring up.

And that’s not to mention all of the emotions that this day brings up for some. There are many who have lost their mothers, to death, estrangement, or mental illness. There are many who have found the road to motherhood to be more challenging than they had imagined. There are those who have chosen not to become mothers themselves, and find themselves having to defend the personal decisions they make.

Sometimes we forget that motherhood takes on a variety of forms. There are those with more kids than you can count on your fingers. There are those with sons, daughters, or a combination of both. There are those who hope to be mothers one day. There are those who desire to be mothers now, but have had difficulty in their journey. There are those who are mothers, but have never been able to bring their child home. There are those who have had to bury their children, something no mother should ever have to do. There are those who have birthed children, but those children have gone on to live with others. There are those who did not carry a child themselves, but welcomed them into their home. There are those who have joined other families already in progress. There are those who do not desire to have children of their own, but have a mother’s spirit for other children they encounter. There are those who mother as part of team and others who stand on their own. There are those who have used medical assistance to conceive children. There are those who have birthed children through medical procedures. There are endless possibilities for what mothering may look like for you and for others.

As someone who is a part of the chronic illness community and the surgical intervention community, I have seen my share of women who have experienced setbacks and challenges in their motherhood journey.

For those with IBD, there is no impact on fertility and the ability to carry a child, but there are still studies that show these patients are less likely to bear children. This is most often due to concerns over their own health conditions, concerns about the medication they take and also concerns about the heredity of their disease. So even though fertility may not be affected, this diagnosis still influences their motherhood experience.

Thankfully studies show that the risk of passing along IBD to children is low (less than 10%) for couples where one individual has IBD. Furthermore, most medical treatments have also been shown to be safe during pregnancy, and those which are not considered safe can be replaced with other options, if necessary. So if your desire is to have children, talk to your physician about determining the best options for you!

And those who have undergone surgery, whether it be for an ostomy, a j-pouch, or a resection, still have a strong chance of being able to conceive and carry a child, but there is a higher risk of  an impact on fertility. This may eventually require further medical interventions or exploration of other options for becoming a mother.

Fertility is a difficult topic for many women, because the ability to conceive and bear children is often tied to their identity and sometimes their feelings of worth as a woman. I am not saying it should be this way, but this is how it is for many women. I know when my husband and I first decided we wanted to have kids, I was so hard on myself every month it didn’t happen. Every negative test felt like failure.

And in the grand scheme of things, my conception story was much simpler than many women out there. I conceived both of my children following two surgeries: removal of the colon (colectomy) and removal of the rectum/anus (proctectomy). It didn’t happen immediately for us, but conception was not something we struggled with ultimately.

After fairly uneventful first half of the pregnancies, I ended up in the hospital due to intestinal blockages both times. I had to undergo bowel rest, CT scans, X-rays, and strict dietary changes in both instances, and a premature inducement in one. I felt an incredible amount of guilt for feeling that I already was not being able to protect my child and having to make the decision to do something that could be potentially harmful to the baby because of my health issues. It was a deflating feeling and something I have struggled with as a mother.

My story is just one in a vast expanse of mothers all around the world. We all have a story to share. Our journeys to and in motherhood are all different, and difficult and heartbreaking in their own ways. But we are all in this together. So today, whether you are a mother, long to be a mother, or none of the above—You are seen. You are loved. You are in our hearts.

My ostomy testimony

6 years.

stephanie hughes stolen colon ostomy anniversary inflammatory bowel disease crohn's ulcerative colitis ileostomy ibdThat’s how long it has been since I have been living with an ostomy. That’s close to 20% of my life. Now after spending more than half a decade without a colon, where does that leave me? How do I feel about the new life I have? My outlook last year was fairly grim, after I had just spent a week in the hospital due to an intestinal blockage during my pregnancy. But things are different this year.

Even though I have dealt with a few issues since my surgery in 2012—inflammation in my eyes, having the rectal stump removed due to lingering inflammation, intestinal blockages during both of my pregnancies—I have not had any true recurrence of IBD since my surgery and have not taken any IBD medications since that time. Do I love my ostomy? Nope. My goal here is not to shout out, “Having an ostomy is the best thing ever!” Because it’s not. But last week I had an ileoscopy (think colonoscopy without the colon), and afterwards I received the best news that anyone with IBD can get—no signs of disease activity! And that, my friends, is what makes me want to shout from the rooftops.stolen colon inflammatory bowel disease crohn's

It has not always been an easy road with my ostomy and I still have a love-hate relationship as I continue to grapple with feeling self-conscious or concerned about leaks or worried how others will react to it, but ultimately those pale in comparison to the memory of needing to use a walker to get myself to the bathroom many, many times during the day and spending more nights than I want to count in a hospital bed. I still don’t recommend surgery as a first choice in treatment, since I think most people need time and the opportunity to explore other options before committing to this one. I know I did.

stolen colon sedimentation rate graph ostomy inflammatory bowel disease crohnsBut when my lab results look like this (Sedimentation rate is a marker of active disease. That crazy outlier is from one month before my surgery.) and can keep me off meds and out of the hospital (at least for the most part), I’m going to say that it was the right decision for me. That’s how I have been able to embrace this new life, even with all of difficult parts that come with it. And looking back now, 6 years later, I do not regret it for a second.

A QUICK NOTE ABOUT HAVING AN ILEOSCOPY: This is my second scope since my surgery in 2012. I had one in 2014 and now in 2018. I also had an upper endoscopy performed this time. I have had these done as a preventative measure. We know that if symptoms start to arise, the faster we can start treatment the better your odds of getting back to remission. And often, signs will be seen in blood work or through a scope before they manifest into physical symptoms. So I decided to try my best to stay on top of things and not give any inflammation or disease recurrence the chance to sneak up on me. My GI and I have a plan for annual appointments and blood work and doing a scope every 3-5 years. Thankfully an ileoscopy is a simpler process than a colonoscopy since the prep is not required!

 

 

 

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Learn how to change your ostomy bag in under 2 minutes

This video is meant to show in under 2 minutes how to change an ostomy bag and the speed of the video has been changed to allow that. The timer in the corner shows the actual time of the bag change, which was just under 5 minutes. Please note that I have had an ostomy for 6 years and that may not be a realistic time for someone just starting out. There are some great videos out there that go into a lot of detail on how to change the bag and going step-by-step, but some of us may not have the time (or patience!) to sit through a 10-20 minute tutorial. The hope here is simply to provide a quick guide for getting started.

The process of changing a bag will vary depending on the type of bag you use (such as a one-piece or a two-piece that snaps together or a pre-cut flange) and the types of accessories you like. The accessories shown here are the ones that I have found that work well for me, but they are not necessary and there are plenty of other options out there that may fit better with what you need.

I do not recommend specific products since I believe that different products work for different people and situations, but for your reference, these are the products used in the video:

  • Coloplast SenSura Mio 2-piece flex flange and pouch
  • Hollister Adapt skin barrier paste
  • ConvaTec AllKare protective barrier wipes

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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