Category Archives: Surgery

Three years an ostomate

Three years… 1095 days… That’s how long I have now been living with my ostomy. As usual, it’s one of those mixed feelings of “seems like forever” and “feels like only yesterday.” It’s amazing to look back over these past years and realize how much my life has changed. In a lot of ways, I feel like 3 years ago is when my life started.

Prior to my surgery, I felt so trapped and afraid. I feel like I lost so much of my 20s, which is supposed to be the time where you are able to be free and to experience all that life has to offer. But I feel like I didn’t have that chance. Now don’t get me wrong, I had a lot of really amazing things happen in those years, but I also missed out on a lot of things. So after I had my surgery, it truly felt that I was in control of my life for the first time in a very long time.

pregnant baby conceive ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy second trimesterWhen my husband and I first started talking about having a baby, I was hesitant. I remember thinking that I had been robbed of much of my 20s and I finally felt like I had my life back and I wasn’t sure I wanted to give up that freedom so soon. At the same time, I knew that surgery can complicate getting pregnant and I didn’t want to wait for too long. But once we decided to go for it, I was ready and I wouldn’t change a thing now that it’s all actually happening. But there is still this small part of me that feels like that time was too short.
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If I never had Crohn’s disease…

if i never had crohn's disease

If I never had Crohn’s disease, I would never have known how much pain one internal organ can cause.

If I never had Crohn’s disease, I wouldn’t have missed out on so many nights out with friends.

If I never had Crohn’s disease, I wouldn’t know so well the awful sounds and smells that fill a hospital ward.

If I never had Crohn’s disease, I may never have known how far my family would be willing to go and all that they would be willing to do for me.

If I never had Crohn’s disease, I would never have filled my body with medical-grade poison, because it was the lesser of two evils.

If I never had Crohn’s disease, I wouldn’t have spent so many nights crying when I was in middle school because I felt so alone.

If I never had Crohn’s disease, I may never have learned to have true compassion and empathy for what others might be going through that you don’t see.

If I never had Crohn’s disease, I may have spent a good deal of my life wrapped up in petty arguments because I never understood that there are more important things in life.

If I never had Crohn’s disease, I wouldn’t have sped home so many times hoping I could make it to the bathroom.

If I never had Crohn’s disease, I definitely would have had far fewer times where I didn’t make it to the bathroom.

If I never had Crohn’s disease, I may never have realized what a blessing each and every day is.

If I never had Crohn’s disease, I never would have gone through two separate surgeries to remove my colon and my rectum.

If I never had Crohn’s disease, I never would have met so many amazing people who inspire me every day.

If I never had Crohn’s disease, I never would have found my voice in a world where people don’t want to talk about pooping into a bag.

If I never had Crohn’s disease, I wouldn’t have spent a month of my 13th year in the hospital, where I never would have met a wonderful nurse who told me all about China and I never would have become fascinated with that country and its language. Which means I likely never would have attended the University of North Carolina (since I only applied for their Asian studies program… which I didn’t end up doing, but that’s another story for another day) where I never would have met so many awesome people or had such incredible experiences. And I never would have gone out dancing with one of those friends one night and met a guy named Jarrod, who I never would have married and I would not be carrying this incredible gift of a child right now. And only God knows what’s in store for this child and all of the things that will happen because of this new life.

So you see, even if I had the choice to go back and live a life free of Crohn’s disease, I couldn’t do it. This disease has played such an intricate part in the creation of who I am over the past three decades that I do not know who I would be without it. Would I be happier? Maybe, but I doubt it. I have a family and friends who love me and have stood by me through some very difficult times, so I know that they will always be there for me. I have found an incredible community of people who have lived through so much and come out stronger on the other side, and I find them to be the most beautiful people in the world. I have learned that you never know what someone is dealing with behind the scenes, and that has given me patience and taught me to not always take everything at face-value. I have learned to be thankful for everything that you have been given, because you never know what tomorrow will bring. I have learned that sometimes shit happens and life sucks, but it’s what you do in those moments that matters most because that’s what makes you who you are

I realize that what I am saying may be controversial, so if you don’t feel the same way, I completely understand and I can’t blame you one bit. There’s nothing wrong with that. I realize that my story is not everyone’s story. I’m not belittling anyone else’s experience. This is just one girl’s opinion and is by no means a commentary on what anyone else should or shouldn’t do or feel. In fact, not feeling the way I do is probably a much more normal reaction than mine. But this disease has taught me so many things… about myself, about other people and just about life in general.

This disease takes a lot away from you: your energy, your ability to go to the bathroom on your own schedule, your dignity, your immune system, your blood, your feeling of safety, your desires, your goals, some friends, your health, your freedom. But it has also brought me to where I am today and I am so thankful for that. Yes, this disease takes a lot, but I have found that it has given me many things, too. And the things it has given me I would not give up for anything. Not even a healthy colon.

Featured in US News & World Report

I had a great experience being interviewed by U.S. News & World Report for an article on pregnancy with a chronic illness. I hope I did the IBD & ostomy world proud! Here’s a link to the article.

pregnant baby conceive ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy second trimest 27 weeks

Second trimester of pregnancy with an ostomy

Over the weekend, I officially moved past the second trimester into the third trimester. It’s crazy to think that we’re already in the final stretch of this pregnancy and waiting for our little one to come in less than three months! pregnant baby conceive ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy second trimest 27 weeksThings are getting real and I am definitely feeling the pressure of everything that we need to get done and all of the decisions that need to be made. It is a lot to take in and can be quite overwhelming, but we are excited and trying to not get ourselves too stressed out. Just being the planner than I am, it’s hard being in a position where I have no idea what to expect and there’s not a whole lot that I can do to truly prepare myself, since I know that each pregnancy, birth and child is different. But I wanted to talk about some of the things I have experienced over the past three months and what I have learned during the second trimester.

What I have experienced so far:

  • I have been pleasantly surprised to be able to keep my ostomy bag on for a fairly normal period of time. Even with my stomach growing and stretching, I don’t feel like I’m having to change the bag constantly. I definitely have to pay a little closer attention to it, but I’m thankful that I’m not having to change it every other day.
  • I’m also glad that my ostomy is a little higher on my stomach (just a little lower than my belly button) because that has made it easier for changing the bag. If it was lower, I could see it being on the underneath of my belly, which would make changing the bag more complicated.
  • pregnant baby conceive ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy second trimesterMaternity pants are awesome! Like seriously, I had never thought about pregnancy pants for someone with an ostomy before, but it’s a great idea. They have the built-in panel, they don’t restrict the flow of output in the bag and they are really comfortable. (I’m planning on doing a little more about what to wear during pregnancy soon.)
  • Regardless of what I wear, my ostomy is more visible through my clothing than it is normally. This is due in part to it protruding farther forward, but also because most maternity clothes are fairly tight-fitting. It doesn’t bother me too much, but I’ve had a couple of comments so far of people noticing it and thinking it’s something baby-related.
  • I have been incredibly blessed to not have dealt with sickness and nausea during this pregnancy. I have still been tired, but not nearly to the extent that I was during the first few months.
  • I am ceasing to be comfortable a lot of the time. Whether it’s sitting at work or sleeping at night, it’s a struggle. I have one of those awesome pregnancy pillows which has helped tremendously at night, but laying on my right side is a little awkward with my bag sometimes.
  • This kid has been kicking up a storm, which is so crazy! I can’t describe what a strange feeling it is having something moving around and kicking inside of you.
  • I have an anterior placenta (meaning the placenta is attached at the front of the uterus, rather than the back, which is more typical) so this usually makes it a little harder to feel the kicks, at first. But what’s interesting, is that I’m pretty sure it’s right where my ostomy is, which I think has kept the baby from kicking right at my stoma spot. Just recently have I gotten a couple of quick jabs right at the ostomy. Thankfully nothing too bad yet, but I can see that becoming a bit more uncomfortable in the future.
  • My stoma has definitely changed shape and is a bit prolapsed (or pushing out farther). It’s close to 8mm larger than it was prior to pregnancy, so it’s good that I’m using cut-to-fit wafers for now, especially since the size keeps changing.

Things I am nervous about in the future:

  • I have been pretty worried about people touching my belly and therefore my ostomy bag. Since I know people have some odd desire to go touching pregnant women’s bellies, I would really prefer people to not go feeling on my bag, but I’m afraid it might be inevitable at some point. Thankfully, no random people have grabbed my belly yet! (Although I’ve had some family who has and has gotten confused about my bag…)
  • As my stomach gets bigger, I’m unsure what it’s going to be like having to empty my ostomy bag. So far, it has been find and I don’t feel like my big stomach is making it too difficult, but I can imagine that as I move into these final weeks that logistics could get tricky.
  • I know that blockages can become an issue later on in pregnancy, as the belly gets bigger and the part of the intestine that forms the ostomy opening can get pinched or restricted in some way. I am trying to be extra cautious about what I eat and making sure that I chew really well and drink lots of water, but it’s hard to think about that all of the time.
  • I’m hoping my stoma doesn’t prolapse more than it already is. I’m not entirely sure what to do if it continues to push forward.

Things I am excited about in the future:pregnant baby conceive ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy second trimester

  • I’m excited about these final months and everything starts coming together. I’m looking forward to getting the nursery set up and ready and having some time to celebrate our new little one in the coming weeks!
  • I’m not sure there’s a whole lot to “look forward to” in the third trimester (you know, other than backaches and swelling and contractions), since the fun stuff like getting to find out the gender and feeling the baby kick for the first time is already past. I do enjoying feeling the movement, so I’ll continue to be excited about that, but more than anything I’m just excited about getting to meet the little one! I feel like these final 12 or so weeks are simply about making all of the final preparations and then waiting for the little one to arrive.

For any other mamas out there who have been through/are going through pregnancy with an ostomy, what was your experience like? For those who have not, what are some of your concerns if you decide to do so?

Here’s a little more about my experience getting pregnant with an ostomy and my first trimester with an ostomy.