This is IBD

I am spending this World IBD Day in the hospital. This was definitely not my plan for this day. But I suppose it’s kind of appropriate since those living with Crohn’s disease and ulcerative colitis never get a break and they can be fine one day and hooked up to a bunch of IVs at the hospital the next. And that’s pretty much what happened to me.

stephanie hughes hospital surgery colectomy stolen colon ostomy blog recovery ostomies advocacy stephanie hughes bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy blockage obstructionLet me say first of all, though, that I am not in the hospital for a Crohn’s flare. But I am in the hospital as a result of Crohn’s disease and the surgeries I’ve had because of it. I’ve been dealing with some bowel obstruction issues since Sunday and they got even worse last night. When I woke up this morning, I still was having very little output, so out of an abundance of caution, especially considering my pregnancy, I decided to go to the ER. It’s now 11 hours later and I’m still not having a lot of output, or at least not anything substantial.

stephanie hughes IVSo here I lie… hooked up to some IV fluids and willing my ostomy to fill up with anything besides liquid! But you know what? This is one day for me. I am one of the lucky ones who has been put into remission because of those surgeries and my ostomy, but there are millions out there who are living with the ramifications of inflammatory bowel disease every day.

World IBD Day is supposed to be a day to set aside some time to raise awareness about Crohn’s disease and ulcerative colitis. But these diseases do not affect us just one day of the year. They affect us every single day of our lives, whether the disease is active or not. That’s what keeps me going when blogging and advocating seems difficult and exhausting. These diseases are difficult and exhausting, so I will keep doing what I can to make sure the world understands what IBD is and what it means for those who are diagnosed.

Yes, World IBD Day is a great thing. But no, it is not enough. And that’s not to say that every person out there should create some kind of platform and become a full-time activist. I just hope that we all remember the people who have suffered from and are living with IBD the other 364 days of the year and that we continue to fight for awareness and for a cure. And I pray that in my lifetime we will find that. And I hope that’s what this day stands for: a reminder of what we are fighting for and why we should continue fighting… every day.

My thoughts on having children when you have IBD…

On three separate occasions in the past few weeks, I’ve been confronted with the discussion of individuals who have been diagnosed with a chronic disease, specifically Crohn’s disease or ulcerative colitis, deciding to have children. I realize this can be a controversial topic and, as you probably know, I am currently 8 months pregnant with my first child, so I understand the process that you go through when making that sort of decision. I understand why there are those who might decide not to have children themselves, whether due to their personal desires or due to concerns about their own or their children’s health. And while all of this played a role in our process, I wanted to share some of the reasons why my husband and I made the decision we did. And that’s not to say that this process should look the same for everyone else. This is a deeply personal decision, one that no one else can make for you and one that no one should ever pass judgment on.

I have always wanted kids and have never really considered not having them. Since I was much younger than I am now, I have wanted to be a mother and to have a family. Both my husband and I come from family-centric homes and we’re still very close with all of our family members. I don’t think I have ever truly considered not being a mom at some point in my life, whether through natural means, medical assistance or adoption. I think it’s something that is built into who I am and what I desire out of life.

pregnant ibd
I was healthy and not on any medication. I am thankful that I have been in a good place over the past few years. I went off medication nearly immediately after my surgery in 2012 and have not gone back on anything longterm since that time, so there are fewer complications from that to consider. My recent blood work shows that all of the markers that are monitored in individuals with Crohn’s disease are within the range that they should be and I’ve felt great for the vast majority of the past three years. I also have only had two major surgeries, and both of these were done laparoscopically, so they were minimally invasive and less likely to produce scar tissue. So essentially, I knew that I had lower risk of issues with the actual pregnancy, while at the same time knowing I am in a good, healthy place to be able to care for another person.

I did not want Crohn’s to take this from me. Crohn’s disease has taken a lot away from me over the years, and this was something that I was firm on not wanting to give up. I was very aware that pregnancy might not happen easily or me, or at all, and my husband and I were prepared to explore other options if that was the case. But I did not feel that I could give up my dream of being a mother because I’m living with IBD. I just couldn’t let it have that, too. And I don’t think any man or woman deserves to be told that they shouldn’t have kids because of an illness. These people have already compromised enough in their life that if they desire to be parents, I don’t think anyone has a right to tell them otherwise.

We don’t know what causes IBD. And therefore, we don’t know how it is passed on. While studies have shown that people who have an immediate family member (parent or sibling) with IBD are more likely to be diagnosed with IBD, we don’t have any solid genetic evidence of it being hereditary or explaining why one child might have it and another does not. What I really mean by this is that we don’t have any particular gene that we can test for and know if it will be passed along. Still, many people who are diagnosed with IBD do not have any family members, immediate or otherwise, with the disease, so we know it’s not a strictly hereditary disease. I hope that this is something we continue to find out more about and can better prepare us for making sure our children have the best chance of leading a healthy life.

I have faith and I do believe in God. However, I do not believe that God gave me Crohn’s disease. I think that sickness and disease are simply a byproduct of the society in which we live. But I do believe that God has used this disease to shape me into the person that I am and has helped me to still lead an amazing life even with this disease. So I pray every day for this child to never know what it’s like to live with Crohn’s disease, but even if he does, I know that God will help him through, just as he’s done for me.

I never wished I wasn’t born. I have been through some really tough times and some depressing times, but I have never once thought that I wished my parents had never had me. I love my life and I would hate to think that my parents would have considered ending it before it even began simply because I would have Crohn’s disease. Even if my parents had been told 100% that their next child would have IBD, I hope they still would have had me. So how could I not offer the same thing to my child? And while I know it would be one of the most difficult things I would ever have to deal with if I found out my child had Crohn’s disease, they would have the world’s biggest advocate in their corner, who would be there to help them through it, every step of the way.

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.

In the end, I am so thankful for these past 3 years and everything that has happened in that time. I’m thankful that I had the surgery done early enough to have the time that I did to enjoy some freedom, before moving on to this new phase of life. And I’m so excited about this part! I look forward to being able to spend time with my family without feeling sick or tired. I’m so glad that I was able to have those years to get healthy and have my body be ready to carry a child.

So really, more than anything, celebrating another “stomaversary” just makes me more excited about the future. If these past 3 years are any indication of the next 3, then I can’t wait!

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