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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.

Waylon’s birth story – Part 2

Read Part 1 of Waylon’s birth story

Things started early the next day, which was Friday, June 12. Since I had done so well over night and I didn’t want to be completely miserable during labor, they removed my NG tube and started all of the preps to more fully induce labor. I was 4 cm dilated by this time.

steph hospitalPrior to being induced, I had considered doing a natural labor with no epidural, but changed my mind for 3 reasons: 1. I have heard that if you are being induced with Pitocin that you’re usually better off with an epidural since contractions are often more intense and closer together. Plus, since it’s not a natural labor, it often takes longer. 2. I hadn’t eaten anything in more than 48 hours and didn’t think I’d have the strength. 3. I had been through so much pain the previous two days that I honestly didn’t think I would be able to make it another day dealing with the same sorts of pains.

They got the epidural in early, so we could start it before the induction medications. Thankfully it went in easy and worked really well for the most part. Around 11:00 a.m. they started the Pitocin, and about 2 hours later one of the doctors came in to break my water, which meant we were really getting things going. I “labored” for about 8 hours but didn’t feel a darn thing. (Except at one point I started feeling the contractions so they gave me a quick epidural booster.) Around 5:00 that evening the doctor came in to check me again and said I was at 9 cm and getting really close. (Cue the freak out!) But they told me to hang tight until I really started feeling pressure and the urge to push. It was about 7:00 when I started feeling like we were close to “go time.” Of course this is right at shift change in a hospital, so it took a little while to get everything ready for that, which I am now glad for since I think it would have been a longer road if I had started pushing right then.

It was a busy night on the delivery floor with, I believe, four other women in the final stages of labor. So it was just the nurse, my husband and me in the room when I started pushing. It was actually really nice, because it was quiet and we had the lights down low and the nurse and my husband each held one of my legs as I started pushing.

I believe my epidural had started to wear off a little by now, because I was definitely feeling contractions. This didn’t turn out to be a bad thing because it helped me better know when was time to push, rather than judging based on the monitor. It still definitely took the edge off, because even pushing never really hurt. It more of felt like a ton of pressure and took an extraordinary amount of energy. Looking back, I definitely don’t think I would have had the strength if I had been dealing with full-blown labor pains all day.

I pushed for right about an hour when we got the point that we had to get the rest of the team in there. After that, there were 5 or 6 other people as a part of the whole process. It was about another half-hour before I finally heard the “here he comes” and Waylon Alan Hughes entered the world at 9:13 p.m.

It’s normal procedure at my hospital to immediately give the child to the mother for skin-to-skin contact for a few minutes before doing all that they need to do. They brought him out and did put him on my chest, but for only a few seconds. I think because he was a preemie and wasn’t making a lot of noise right when he came out that they wanted to make sure everything was alright.

waylon birthI felt so helpless as I had to lay there while the rest of the birthing process continued to happen and they had my baby across the room, where I could hardly see him, but my husband got to stand there with him. I was waiting so anxiously to find out his weight. I knew we needed over 2000 grams to forego a guaranteed trip to the NICU. I was so nervous because just 2 weeks before I had an ultrasound and was told that he was measuring small for his due date. I was just praying that he had gained weight, even though I had been on liquid diet and bowel rest for most of the time since the scan. Then I heard he was 2580 grams, which I had no idea how big that was but knew it was over 2000! Turns out, he was 5 lbs. 11 oz.! I couldn’t believe it. I was just hoping for over 4.5 pounds and he was close to 6! He was perfectly healthy and they were able to bring him back to me and let us spend some time together after they checked him over.

I can’t explain the relief I felt in knowing that he was doing so well and had gained weight in those final weeks and would not need to go to the NICU. It is such an amazing feeling getting to meet this little one that you have anticipated for so long and who has been growing inside you for the past 9 months. He was so tiny and perfect and so much more than I could have ever imagined.

Read Part 3 of Waylon’s birth story

Waylon’s birth story – Part 1

This is the story of the birth of my son, Waylon. It actually started three weeks earlier when I was first admitted to the hospital, then dealt with several weeks of intestinal blockages and other non-fun things like NG tubes. This part of the story starts that week he ended up being born. Since a lot happened during those few days I have split the story up into three parts. 

I had just gotten home from the hospital on Sunday. I went in to work on Monday in an attempt to get back on track, but realized later on that day that it was probably too much at that point. I worked from home on Tuesday and by just having the ability to sleep in a little and not having to worry about getting ready, I was already feeling a ton better and getting my energy back.

preggo bellyI woke up Wednesday morning feeling good and planning on going into work. Shortly before I was ready to leave, my stoma started hurting again and I figured it would be wise to work another day at home. I made myself a smoothie that morning and realized around lunchtime that I hadn’t had any output since I woke up that morning. I tried to focus on drinking lots of water and avoiding food in hopes of flushing anything out. By the time the workday was over, I was having bad pain around my stoma. I tried to sleep it off for a bit, but when my husband came to check on me around 8:00 that evening I was in pretty intense pain and had already thrown up once. He said we needed to go back to the hospital and I wanted to fight it so badly, but I knew he was right. We drove to labor and delivery that evening and checked in for the 4th time in 4 weeks. I spent several really miserable hours getting checked in and checked out by doctors. Baby was looking great during this time, but I was having somewhat regular contractions. At this point, I couldn’t really tell a difference between the contractions and the intestinal pain I was feeling. The doctor checked for signs of active labor, but I was still only 1 cm dilated (which I had been the previous week).

ng tube 2They kept me on the labor floor since I was having contractions and I found out I would be getting another NG tube (joy!). And I couldn’t argue, because I knew it was the only option at that point. Thankfully, this one went in a lot easier and ended up being less uncomfortable while it was in than my previous one.

The next day was a difficult one, as I was on complete bowel rest, lots of IV fluids and (thankfully) pain meds, and continual tracking of the little one. I literally slept the entire day. My husband and mom were there for a while and I slept the whole time. I don’t really remember anything that happened that day until about 6:30 that evening, when I finally woke up. The doctors started talking more about inducing labor, which made me very nervous since I wasn’t even 36 weeks yet. They decided it was best to do a CT scan, which is a normal option for dealing with a bowel obstruction, but one that is not preferred when you’re pregnant because of the radiation. But at this point we were out of options. After we got the results from the scan, the doctors came up to tell me that I did have a massive obstruction right near the end of the intestines and stoma. Basically, my uterus was so mashed up against the stoma site that it was causing a kink and nothing could get through.

I asked if they could show me and they pulled up the images of how large my intestine had become because of the blockage. They said it looked more like colon since it was so distended. They decided to help alleviate the pressure with a catheter through the stoma. Best. Idea. Ever. That immediately started to pull out some output and shortly after I was dealing with a bag leaking output everywhere. It made a mess, but within a few hours I was already feeling about a million times better. I quickly had doctors checking in on me who were saying how much better I looked and that I was actually smiling for the first time.

This was all happening Thursday evening. And even though we were now moving in the right direction and my pain was subsiding, the doctor came in to talk to me about inducing. They said that even though it looked like we had passed this blockage (which I do now believe was the same blockage the entire time), there was really nothing they or I could do to prevent this from happening over and over again for the rest of my pregnancy. They checked me at that point and I had dilated further to 2 cm on my own, as I had continued having contractions that whole day. They inserted a foley catheter just before midnight to help jump-start the process a little further and it was official… the baby was coming soon.

Read Part 2 of Waylon’s birth story