Tag Archives: ulcerative colitis

Why is it so $@*% hard to get an IV in?

I have never been an easy stick when getting an IV. It most often takes about 3 sticks to get one to work, and that’s usually after 5 minutes of one of the needles being moved back and forth trying to figure out where the vein went. I think my record is 6 sticks before finding a vein, but I know that’s probably low compared to some of you.

img_4310Even the most confident IV … inputters (?) are surprised by how difficult my veins can be to find. I once ended one nurse’s streak of nearly 100 sticks on the first try. I always try to tell the person before hand that my veins are tricky and they like to play hide-and-seek, looking alright beforehand, but disappearing as soon as the needle goes in. They usually somewhat brush me off at first, but by the end they agree with me.

During my recent hospital stay, which started as a blockage, by the real reason I went in was due to severe dehydration. I’m sure you all know how much more difficult it becomes to get an IV when you’re dehydrated. The nurses could tell immediately that my veins were not going to make it easy, so I had 2 charge nurses each give it a try and both miss the vein. Then they called the IV team. And it was the same old story: Came in confident, but then not 1, but 2 blown veins later, we finally got a blood return on his third try, but fifth overall.

But what’s interesting about this, is what he asked me next.
He said, “What brought you in?”
“Dehydration,” I told him.
He replied, “Is that all?”
“I had an intestinal blockage.”
“Due to…?”
“I have an ileostomy.”
“Due to…?”
“Crohn’s disease.”
And he said, “There it is!”

ibd crohn's disease IV insertion veins ostomy stolen colonHe went on to tell me something that I am surprised nobody has ever told me before. He said that people with Crohn’s disease and ulcerative colitis have notoriously difficult veins to insert an IV into. (Please don’t quote me on some of the more technical aspects here, but this is what he told me.) He said it could be due to a number of things such as some of the medications taken for IBD, getting ongoing IV meds and veins being used frequently for blood draws and other IVs, among other things. He showed me how his veins are mostly straight, but when you look at mine, they are kind of curvy and they have extra little bumps in them, what he called valves. From what I understand, when valves are not working properly, they cause blood to pool is small sections of your veins. Basically, the point of all of this is showing that having IBD can make getting an IV inserted more difficult, since the veins aren’t as straight or smooth as they usually are.

He recommended that I let anyone trying to insert an IV know ahead of time that I have Crohn’s disease, because he said it would change his approach. He said he would likely have spent a little more time picking out a vein and would also start with a smaller needle. The needle he ended up using to get my IV in he said he rarely uses on anybody because it’s so small, but he often has to use it with IBD patients

I found all of this very interesting and wondered why nobody had ever told me this before. But now I’ll be sure to always give someone trying to insert an IV a heads up of what they’re dealing with. We’ll see if they take it more seriously than my warning of tricky veins!

Why I freak out when I see one of these

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.

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.

Crohn’s disease & ulcerative colitis meetup

I am trying something new this year. And it’s something that I would love for you to be a part of, as well. You see, I think there’s something missing in the IBD community in a lot of places, including here in North Carolina. And that’s a place where you can meet other young professional and college-age IBDers in your area face-to-face. Yes, there are support groups and those are great, but I don’t know of any place where you can just meet others and building relationships with other people who are going through some of the same thing you are. And yes, there are also many online groups, which I definitely love being a part of and have made a huge difference in my life, but there is something to be said about meeting others in person. So I am hoping to find that place around here.

I have started a Meetup in the Raleigh-Durham area. Like I said, my point is to build a community, not necessarily a support group, but somewhere you can hang out, talk about Crohn’s disease and ulcerative colitis (or not, it’s up to you) and make some new friends.

triangle ibd meetup support group raleigh durham wake county cary apex wake forest chapel hill friends crohn's disease ulcerative colitis inflammatory bowel disease ostomy jpouch blog stephanie hughes stolen colon

I envision this first meeting being a “grab coffee and get to know you” kind of thing, but perhaps ones in the future will revolve around certain activities. The great thing is, since this is starting from the ground up, we can all figure that out together and do whatever we want!

So please, if you are in the area or if you know of anyone in this area, I’d love to have you/them join us! I think it will be a lot of fun and I am really looking forward to getting to meet some new faces. Here is a link to the Meetup where you can RSVP and post any comments you would like. I’m definitely open to any suggestions and ideas. I hope to see you there!