My son’s first Ostomy Day

My son will grow up in a different world. He will grow up in a place where having an ostomy is a normal thing. I mean, 1 out of his 2 parents will have one!

waylon ostomy 2He’ll know what a stoma is. He’ll understand there’s a difference between a colostomy and an ileostomy. He will celebrate World Ostomy Day. He will probably at some point blurt out to some stranger that mommy poops in a bag. He will know that an ostomy is not disfiguring. It is not gross. It is not debilitating. And he will know that it saved his mom’s life.

I pray that in knowing these things, he will understand that sometimes people are different from us and that’s okay. I hope he will always remember that you don’t know what’s going on in someone’s life below the surface, and that he will have patience and show kindness to everyone.

I hope some day he will meet someone with an ostomy or who may need to get one and he will be able to relate to them and let them know that it’s not something to be afraid or ashamed of. And if someday when he has a wife, if she ever has to deal with anything remotely similar,  I pray that he will support her and stand by her in the same way his father has stood by me.

waylon ostomy 1And while this is the world my son will grow up in, it’s not the world most of us do. Most people don’t have someone who can tell them that ostomies are not just for the old, or that they don’t make someone less of a person. We don’t have someone who is willing to show us that they are different and to let us know that it’s okay. That’s why when those of us who need an ostomy are faced with having to get one, we get scared. We run away. We learn to live with the pain. All because we are worried that our bag will show our weakness and others will think we are gross or weird.

But this is what I think the point of World Ostomy Day is: to make this world more like my son’s world. To help make it a world where our differences are celebrated. To let everyone out there know they are not alone and that they will get through this. And there’s a whole community of people out there who are going to help them do it.

World Ostomy Day Twitter chat

I have loved seeing all of the ostomy love this week! It’s been great being a part of the sharing of information and spreading of awareness. And it’s not over yet!

This Friday, October 2, I have the awesome opportunity to co-host a Twitter chat with the CCFA as a precursor to World Ostomy Day. We are going to have a great panel of participants, including a colorectal surgeon, a dietician and representatives from the United Ostomy Association and the Crohn’s and Colitis Foundation.

World Ostomy Day Twitter Chat

We will be discussing everything from basic ostomy information to details about surgery and recovery, as well as chatting about what it’s like to live with an ostomy. I would love it if you could join us. The chat will be held from 1:00-2:00 PM EST this Friday. You can follow along using #OstomyChat. You can also follow me on Twitter to see all of my tweets.

Please feel free to join in the chat by submitting questions or sharing some of your experiences using the same hashtag. And spread the word! I’d love for this to be able to reach some people who might not know much about ostomies and they can come away with a new understanding of what one is and what it’s like to live with one. After all, isn’t that what World Ostomy Day is all about? Chat with you Friday!


We all have an invisible illness

Tomorrow starts off Invisible Illness week. As many of you may know, Crohn’s disease and ulcerative colitis are considered invisible illnesses because you can’t always tell what an individual is dealing with based on what is visible or how they look. The images I included in this post were all taken at times that I distinctly remember how bad I was feeling. You can tell in some of them more than others, but after living with a chronic illness for so many years, I have gotten pretty good and disguising how bad I may be feeling at times.

As I was thinking about Invisible Illness week, I was reminded of an interesting discussion we had at my ostomy support group a few months back. We talked a little about the thoughts that we all dealt with when we first knew we’d have to have surgery to get an ostomy and about the grief that is felt over the loss of a part of yourself. We finished up by discussing what we actually went through and how we made the decision to keep going. It wasn’t a lecture on what’s the right way to handle all of this, but simply a discussion of what we each had experienced.

At the meeting, a couple of people started talking about everything that they had been through and one guy listed off a dozen or so surgeries he had previously had for various reasons and finished by saying that he knows people who are much worse off. A lot of people starting chiming in about how somebody else always has it worse and that provided encouragement to keep going. I know that it is true that others have it worse than me. I fully admit that. On a regular basis I am faced with someone new who has been through so much that my surgeries and medications and hospitals stays and pain all seem very small. But I really don’t think that’s how we’re supposed to feel.

stephanie invisible illnessI think we (and by “we” I mean the patient/health community and maybe even society in general) have gotten too caught up in the “who’s got it worse?” game. First of all, there is absolutely no way that judge that and secondly, I don’t understand why we all feel the need to try to judge it. We attempt to categorize the level of awfulness that each person has to deal with when, in all honesty, we are in no position to make that kind of assessment.  Who’s to say that the person with the severe illness but a strong support system is any better or worse off than the person who has a mild illness and is all alone? All of our stories are so complex and interwoven into so many aspects of our lives that, unless we are in that position, we can never know what it’s like.

There is definitely a certain level of understanding that is present amongst people with the same diagnosis and even in people who are living with very different issues, but can understand chronic illness in general. But there can never be a complete understanding of another person’s journey. Symptoms that are simple for one person to deal with may send another person into a deep depression. I know it’s hard, but I think we need to stop comparing ourselves to everyone else and start seeing what we all really have in common. Part of what I love about being involved in the IBD & ostomy community is that I feel like we all see each other for what we have in common and that creates an intimate bond between us all. But even for those who are not living with Crohn’s disease or ulcerative colitis, chances are they also have something they are dealing with and learning to live with. Just because we don’t know what it is doesn’t mean it isn’t there.

We all have some sort of invisible “illness,” regardless of whether or not it is actually classified as an illness in the true sense of the word. We all have some sort of cross to bear that helps define who we are. It could be a diagnosable disease or an anxiety disorder or a troubled marriage or difficulty making friends. We all have something that we must try to overcome in this life. And whatever it is may be visible to others or may stay hidden, but that doesn’t mean it isn’t there. So regardless of whether you are living with an illness or dealing with some other difficulty in life, I encourage you to not think about who has it worse, but rather to remember what we all have in common.

Waylon’s birth story – Part 3

Read Part 1 and Part 2 of Waylon’s birth story.

After Waylon was born that Friday evening, one of the first things they want you to do is to feed them. I was able to get him to feed pretty quickly, but we had one complication that came up. He had low blood sugar, which is non uncommon for premature babies. So I fed him again in hopes that it would go up, but it actually dropped even further, which meant we were in for a bunch of monitoring that night.

waylon2It took about 3 hours to get us out of the delivery room because of this and everything else that needed to be done. We ended up giving him some formula to help, since breastfeeding wasn’t cutting it at the time. By this time we were settled into a room on the postpartum floor. We were told to keep feeding and supplementing and giving him as much skin-to-skin contact as possible to help with the low blood sugar. Needless to say, there was not much sleep to be had that night as I had him laying on my chest just about the whole time. Each time they checked his blood sugar they had to prick his foot for the blood test. And we had to get three good readings in a row in order to be out of the woods. It honestly didn’t seem to bother him too much, but I was a wreck each time they had to test his blood. Thankfully by the morning, we had gotten three good readings for his blood sugar and we were able to stop monitoring it.

The first day was filled with lots of family stopping by, lots of nurses and doctors checking in on us, and a ton of just trying to figure things out and getting to know our little guy. But the down side of the whole thing was that I still was on a no food, no water “diet.” Trust me, there are few things worse than giving birth to a child and them being told you’re not allowed to eat anything. Although having a new little baby does help distract you from that, at least. But the good part was that I was already feeling a million times better! The pain I had been feeling before was immediately gone and I was starting to feel more like myself and able to enjoy time with our son… even if I felt like I was starving.

That day was a little overwhelming with everyone stopping by, but it was nice seeing everyone so excited to meet Waylon. And he did great. Since he was born a preemie, he slept a ton. Even more than full-term babies. It was a rare occasion while at the hospital to catch him with his eyes open. Even so, I don’t think that entire day the little man ever laid in the bassinet they give you, since he was either in my arms or someone else’s.

waylon1That was pretty much our whole day on Saturday. A normal part of those couple of days in the hospital is running tests on his bilirubin level (yah, something I’d never heard of either) and basically it measures the level of jaundice. Waylon’s levels were a little high, which is also common among premature babies. Thankfully it’s treatable, but it is something that can cause problems if left untreated. The treatment, however, is being set under a UV light for 24 hours. They told us this during the night Saturday and said they could either take him to the nursery and put him under the lights there or they could move one of the lights into our room. Of course I was told them to leave him in our room rather than taking him away.

In order to do this treatment, they have him only in a diaper (which we quickly had discovered he hated being naked!) with protective glasses covering his eyes and you have to leave him under there and can’t pick him up. So they bring him in with this light and he just screamed and screamed. And there was nothing I could do. I just sat there and cried, feeling so helpless that there was nothing I could do for my son. My husband and I eventually agreed that he should be taken to the nursery, because I could not handle listening to him crying knowing I couldn’t help. They would bring him back to me every couple of hours for feeding and I got to hang out with him about an hour, but that was all I got to see him for the next day.

Waylon6At least by Sunday morning they allowed me to start eating again and everything went great. The blockage was completely gone after having given birth and I was having no further issues or pain. It was fairly quiet day and I actually got the chance to shower and get ready and go outside for a little bit. It was good to finally start feeling human again, but it was hard only getting to see Waylon every few hours. My husband went home that evening to check on everything at the house, so it was just me that night, making it harder not having my little guy with me the whole time. At one point, I knew they were supposed to be bringing him to me soon for a feeding, so every time I heard something moving outside my room I would perk up, hoping it would be him. Once they finally brought him to me, I had my first emotional postpartum breakdown and starting crying just because I was so glad to see him again. (Silly mom.)

By Monday morning we got the good news that his bilirubin levels were getting lower and we would be able to go home that day! So even with being born 4 weeks early and under 6 lbs., we only spent 3 days in the hospital, which is only one day longer than the typical hospital stay for moms giving birth, and didn’t spend any time in the NICU. At our follow-up appointments at the pediatrician, he gained weight really well, nearly doubling it by his 2 month appointment!

This kid is my little miracle baby. I was so nervous in those weeks beforehand about how much he would weigh and if he’d have to spend a lot of time at the hospital or have any other complications. And while those last few weeks of pregnancy and my labor and birth did not happen the way I had planned, I am so thankful to have a perfectly healthy little boy who is already one of the most amazing people I know. I can’t wait to see the person he becomes.