Tag Archives: Crohn’s disease

3 tips to prepare you for ostomy surgery

Regardless of whether you have been talking about surgery for a long time, putting it off for just as long, or it may have just recently come up, but there comes a time where you know it’s inevitable. At least that’s how it was for me. I went through weeks and months of hoping for another option, but ultimately, I knew what I had to do. (You can look back at some of my very early posts to hear a little more about it.) But once I officially knew it was happening and had about 2 weeks until the surgery, I didn’t really know what to do during that time. Having been through it now and looking back, these are the things that helped me prepare before surgery or that I did after surgery and wish I had done sooner.

Find someone to talk to.

So so important! I can’t tell you what a difference it made just talking to someone else who had been through the surgery. I was blessed to be connected with a friend-of-a-friend…of-a-friend… who had an ostomy and had gone through surgery at about the same age that I was. (You can read about my initial meeting with her.) She had lived with it for a while, had kids, and done many other things that I had hoped to be able to do. It was so comforting to hear from her and to see that she did not look any different from any other person.

There are UOAA groups that help to connect individuals who live in the same area and you can also speak with the nurses who are helping you prepare for surgery about trying to find another person to speak with about living with an ostomy. However, not everyone is able to get connected in person with someone else in a similar position face-to-face, but there are many great options for talking to people online. I do, however, advise caution in looking online, because while there are great positive resources out there, there can also be a lot of negative ones, as well. And if you need someone, I always try to be that person to others whenever I can.
ostomy supplies brands coloplast convatec hollister prepare for surgery

Order supplies.

If you know surgery is coming, order some supplies now! All of the major ostomy suppliers have programs where you can sign up to receive free samples of their products. (Links to their request pages: Hollister, Coloplast, ConvaTec) This was great for a number of reasons. First of all, I have said before that everyone is different and the supplies that work for me may not work for you, and vice versa. I think it’s best to try out the many different options and figure out what fits best into your life and what feels the most comfortable. Plus, each of the samples came with a kit and a lot of good information. The companies followed up with me to answer questions and send additional supplies, when needed. When I came home from the hospital, I had a very large, transparent bag on and I felt so uncomfortable. Once I switched it out for an opaque bag I felt much more confident. It was a little change, but it made a big difference and I was so glad that I had the option once I got home. Finally, getting the supplies will last you for several weeks after surgery, so it’s nice to not have to place a large order right away.

Break the tension.

I was terrified before my surgery. I was hopeful, because I had to be since I had run out of other options, but I was still terrified. I booked my surgery for as quickly as possible because I was afraid I wouldn’t go through with it if I thought about it for longer. (I even asked my surgeon how much of a heads up would be appropriate if I changed my mind! I assured him I wouldn’t, but it made me feel better to know that I could.) But the night before my surgery, I was laying in bed with my husband and looking for ideas for what to wear under my clothes with the ostomy. Thankfully today there are some really great and sexy underwear options out there, but a few years back, that was not really the case. I found some really hideous options and I showed them to my husband and we started laughing hysterically. It was one of those moments where if you don’t laugh, you’ll cry, and I really needed to not cry. I realized that I had to break the tension and not focus on everything I was afraid of happening. I encourage you to try to find something like that to help you get through those difficult times.

Going through surgery is not easy, no matter what situation you are in or what your health is like prior. But hopefully, these tips can help you to prepare the best that you can. I know there are things that others have done that can help, too. What is something that helped you prepare for surgery? Or that you wish you had done beforehand?

SaveSave

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!

 

 

 

SaveSave

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