Tag Archives: pain

Why I freak out when I see one of these

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Mouth ulcers. Or canker sores, whichever you call them. 

One way I could always tell when my inflammatory bowel disease was active was when I started getting mouth ulcers. I remember when I was younger and going through a rough patch of symptoms and I would have 20 or more ulcers in my mouth. It made it difficult to eat or even to swallow.

inflammatory bowel disease mouth ulcers stolen colon crohn's ulcerative colitis ostomyEven now, when my IBD is not causing symptoms, whenever one or more these pops up, I get concerned. This one in the picture is actually from biting my lip, but it’s taking a very long time to heal and that also worries me. I also have another on my tongue, that I can’t get a picture of, that has come and gone a time or two over the past couple of months. Also, about two weeks ago I had one of the roof of my mouth.

I know it doesn’t sound like much, but it’s enough to make me think twice about how I’ve been feeling and to get me to pay a little more attention to my health. That’s the thing about living with chronic illness: You’re never out of the woods. It’s never gone, you’re never cured. Sometimes it feels like you’re just waiting around for it to pop back up again.

I am very thankful to have had these years since my surgery without dealing with any major symptoms of inflammatory bowel disease, but there is always this little part of me, in the back of my mind, that worries about those symptoms coming back. It was a big concern during my pregnancy, since your body goes through so much change during that time, it can kick up a reoccurrence of symptoms. Again, I’m thankful to have made it through my pregnancy without that happening. 

We live in this constant state of uncertainty, and it’s difficult to get used to that. Seriously,  how do you even begin to deal with that?? I honestly don’t know. I guess you just eventually get used to that uncertainty and start to mistake it for normalcy. Regardless, this is why I try to live my life in the moment. I will readily admit that I am not always successful at that. I am a major planner and like to know what I’m getting into, but I’m trying to be present in each day. Today’s a good day, so I will enjoy it and try to live it for all that it’s worth. And if tomorrow is not a good day… I guess we’ll deal with that tomorrow.

2015 at The Stolen Colon

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I’m always amazed at the end of each year as I look back and realize all that happened in the past 365 days. Obviously 2015 held even bigger changes than previous years as I announced  my pregnancy at the beginning of the year and gave birth (amid some ostomy drama) to my son. And if that wasn’t enough, in my personal life, we settled into our new home that we moved into just before the beginning of the year, I decided to leave my full-time job in favor of working from home and getting to spend time with my kid, and celebrated 5 years of marriage to my husband.

I thought I’d take this chance to highlight some of my favorite posts from the past year. I actually had a hard time narrowing this down because there were a lot of posts that really meant a lot to me this year. It’s pretty pregnancy / baby dominated, but I’m OK with that!

2015 stolen colon year in review ostomy baby crohn's disease ileostomy ibd inflammatory bowel disease
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We all have an invisible illness

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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

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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.