Tag Archives: family

Adventures in mommyhood (with an ostomy)

I have a hard time believing, at the moment, that my tiny little baby is going to be one-year old in just two months. Everyone always told me how quickly times goes by, but I am still shocked at how quickly it does. This week, we were blessed with the arrival of my first nephew, and when we went to meet him at the hospital, I was taken aback by how tiny he was and how I could hardly imagine my son being that size just 10 months ago.

These months have been a growing time for me, as well, as I learn what it means to be a mom. And while I know I having an ostomy has no bearing on the kind of mom I am, I do see some areas that are a little different for me. So I thought I’d start a new series. An OstoMOMmy series, if you will.

Ostomommy-Logo

I will plan to talk about any instances I find in my life as a mom that have been impacted by my ostomy and consider ways to deal with it or things I have learned from it. And I’d like your help, as well. In a series like this, I want to make sure I am writing about things that actually impact other people’s lives. So I’d like to know about your questions or ideas for topics.

What questions do you have about being a parent with an ostomy? Are there certain activities that concern you about raising a child or that you’ve already experienced? Are there things that you think will be different as a parent with an ostomy? Are there certain scenarios where you, as a parent, have had a different perspective because of your ostomy? What other parenting topics would you be interested in hearing more about?

I have a couple of topics in mind, but I figure this will be a series that I will write about as it happens, whether it happens often or only sporadically. Please comment below or on my Facebook page with your questions or topic ideas!

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.

My son does not nap…

And that’s a big reason that I have not been around for a while. I apologize that I sort of fell off the face of the world for a while there. If I’m being totally honest… I think I was kind of hiding.

w no napIt started in October, when my son decided he no longer liked sleeping. (The 4-month sleep regression is real!) I was exhausted in every way possible. Thankfully, he has started sleeping through the night, but he still refuses to nap more than 30 minutes at a time and usually only twice, maybe three times a day. I left my full-time job to stay home with him, but I do have a part-time, work-from-home job, so any time I got him to go down for a nap, I’ve felt like I have to spend that time working. And even if I wasn’t working, there were a million things around the house to do. And then I sometimes just needed a little time for myself. I don’t like that it happened, but my blog kept getting pushed further down the list.
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On the other side of the curtain

I spent some time earlier this year on the other side of the hospital curtain. My best friend went in for emergency surgery. I was thankful that it was a day I was already planning on working from home, so I was able to drop everything to go see her when she woke up in recovery. It brought up a flood of emotions seeing her in that hospital wing, a little loopy from the anesthesia, but still looking beautiful.

hospital surgery recovery ostomies advocacy stephanie hughes bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomyThankfully, it was a successful surgery and she is doing great and was even able to leave the hospital just a few hours after the surgery. I spent those few hours there with her and her husband and the nurse who was monitoring everything.

This was one of the few times in my life that I was sitting in a waiting room, unsure of what was happening or going on with someone I really care about. When I went home later, I just crashed. I felt like I had been hit by a bus and there was nothing left. I tried to do some work the best I could, but mostly just curled up under a blanket on my couch and watched Gilmore Girls and eventually fell asleep.

It made me realize how much it takes out of you being the support for someone who is going through this sort of thing. I got a glimpse of what it must have been like for my husband and parents and sisters and friends every time I was admitted to the hospital and after each of my surgeries. It hurts me to think about all of those nights my husband stayed with me at the hospital, or when he had to return home while I was still there. I think about those 25 days I spent in the children’s hospital when I was 13 and can’t even imagine what that must’ve been like for my parents. And while It makes me sad to think of all they went through, it also makes me so thankful. I am thankful that I have such wonderful, loving people in my life that are willing to endure that and to be there for me, no matter how hard it is and no matter how much it takes out of them.

I realized at the beginning of the year that 2014 was the first year I hadn’t had surgery in three years and the first year I had not been admitted to the hospital in over five years. I had a period there where about every other month I was spending at least a night in the hospital, if not more. At that time, I don’t know that I could’ve imagined a period in life where I wouldn’t have to worry about when the next hospitalization might come.

Of course just a couple of months ago I had to deal with that again as I checked myself into the hospital 4 times in 4 weeks due to an intestinal blockage that was complicated by my pregnancy. By the third time I told my husband that I needed to go back to the hospital I could see how difficult it was for him. At times, I think it was harder on him than it was on me.

But during those times, both recently and in years past, through overnight stays and surgeries, I always had an army around me, helping to hold me up and get me through it. And now, I do know that I will never take for granted those people who have put their lives on hold and spent long hours waiting for news from the doctor on behalf of me or sleeping in the most uncomfortable chairs known to man.

Caring for someone with a chronic illness is not an easy thing. Those people have been through a lot. They live in a land of unknowns. For those of us who are dealing with an illness, we at least have a better understanding of what’s going on and we know our bodies well. But for those on the other side of the curtain, there’s little comfort they can find as they wish there was something more they could do, something to make the other person feel better. But they can simply sit and wait. Those of us with a diagnosis are not the only ones living with that disease. Our loved ones are impacted just as much sometimes, just differently. And these people are stronger than we sometimes give them credit for. I, for one, do not know where I would be without them. They give me strength to keep fighting and something worth fighting for.