Category Archives: Pregnancy

A new meaning for World IBD Day

I realize that today is World IBD day, but that is no longer the significance that this day holds for me. It was one year ago today that I was first admitted to the hospital with an intestinal blockage during the third trimester of my pregnancy. It was the beginning of the end of my pregnancy.

world ibd day inflammatory bowel disease crohn's ulcerative colitis ileostomy stephanie hughes anniversary pregnancyTwo days before, I had sent out a tweet about feeling a little blocked up. Honestly, at the time I didn’t think it was that big of a deal. It felt like the number of other times I had a mild blockage that would clear on its own if I drank a lot of water and stayed away from fibrous foods. Even when I went to the ER last May, I really only went because I was pregnant. If I hadn’t been worried about my son, I seriously doubt I would have gone to the hospital. It was more about being extra cautious than actually thinking there was a problem. After about a day in the hospital, I already was feeling better. I remember my surgeon coming in to talk to me and telling him I felt great and didn’t see a reason I needed to stay any longer.

this is ibd postLittle did I know how much worse it would get over the coming days and weeks. Two days after being released from the hospital, I was in tears over the amount of pain I was in and would end up taking myself back to the hospital in the morning. And three weeks after that, my son would be here.

For me now, this day is a reminder of how much IBD can impact your life and the lives of the people around you. My pregnancy and my son’s birth did not go as I had planned. Thankfully, everything turned out well in the end, with a healthy baby and a healthy mom, but it could have gone another direction. I know if we decide to have more kids, I will go about things differently in the hopes of preventing another blockage. But truth is… with a disease like IBD, you never know what’s going to happen. And that’s why awareness is so important. So people have the information they need in order to make the best decisions. So others understand, even just a little bit, what it’s like to live with an unpredictable disease. And so one day a cure can save others from spending World IBD Day in the emergency room.

Pregnancy with IBD Twitter chat

I know a lot of you followed along with my pregnancy with having an ostomy and IBD, so I am excited to take part in a Twitter chat discussing pregnancy, birth and parenthood while living with IBD as a part of the IBD Social Circle. I will be co-hosting with Amber Tresca of About.com, so we will be able to discuss our personal experiences with our families. Dr. Loftus of Mayo Clinic will be joining, as well, to give us the more scientific and medical perspective.

The Twitter chat will take place next Wednesday, March 9, at 12:00 p.m. EST. You can follow along with the hashtag #IBDSC and by following our Twitter accounts: @smlhughes@AboutIBD / @EdwardLoftus2.

I hope you’ll join us for this chat! We’d love to hear about your experiences and to answer some of your questions, as well.

IBD Social-Circle-TwitterChat 1 Final

**Janssen Biotech Inc. is paying for my time to advise on this chat. All thoughts and opinions expressed will be my own.

2015 at The Stolen Colon

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
Continue reading

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.