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.
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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
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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.