Tag Archives: hospital

5 years: The resentment anniversary?

It has been 5 years since I had my surgery to get an ostomy. It’s funny, I’ve been looking forward to this day because 5 years seems like such a good marker of time. And my ostomy has made such a profound impact on my life, that I felt like it would be a time to celebrate. Five years of not living with active Crohn’s disease; five years of being able to take part in the activities I want to; five years of not living in fear of finding the closest bathroom. But this has ended up being an interesting anniversary for me.

If you look back at my previous anniversary posts (One, Two, Three, Four), they are mostly filled with gratitude and hope. This year, I feel a bit more resentful and not wanting to celebrate my ostomy or what it has given me the past few years. I have not gotten into it yet on my blog, but I will soon tell you the full story of my second pregnancy and the complications that I have been having due to my ostomy. In a nutshell, I just returned home from spending a week in the hospital due to a pretty severe intestinal blockage. It’s actually pretty amazing that I did not end up requiring surgery in order to relieve it. Currently, I have a catheter inserted into my stoma to help ensure it does not collapse or get squashed between my uterus and my abdomen. It’s painful. It’s uncomfortable. I feel exhausted.

And now I am on a nearly entirely liquid diet, which is not only boring, but I’m hungry pretty much all of the time. Plus, I’m worried about getting enough calories during the day, not only to support myself, but to support my baby, too, who is not due for another 11 weeks. Top it off with a 2-year-old who I am home with much of the time and just don’t feel I have the energy to keep up with him, and it’s also difficult to move too much without hurting myself.

Suffice it to say I’ve been feeling pretty sorry for myself recently. I think I’ve been going through a mourning period of having to let go of the plans I had for this pregnancy and the hopes I held onto for a spontaneous birth close to my due date. I had wanted to spend these final weeks relishing the time I have with my son before he’s joined by a sibling and enjoying our life as a family of three. But none of that is going to happen the way that I had planned.

But you know, I’ve also realized that life usually does not go the way you planned. I am not the first woman to deal with complications during pregnancy or concerns about taking care of her other child. I also see how blessed I am that we’ve been able to handle the issue with this catheter, despite how uncomfortable it is. I am blessed to be home with my family, able to move around, and I’m not confined to bed rest at the hospital for weeks, as many women deal with during pregnancy. I am blessed to have amazing family and friends close by who have dropped everything to help us out and make sure that we have everything we need.

So instead of being resentful today, I am trying to focus on the many positives that I have going on in my life: I have a beautiful new baby on the way that I am so excited about and my ostomy played a huge part in me being able to do that, other than dealing with the blockage issues I am healthy, I am not confined to a hospital bed, I have amazing support to help me get through the coming weeks. And I know whenever this baby arrives and in whatever fashion that we will cherish the time we have together. When I think back to when my son was born, and the four weeks I had expected to continue being pregnant, I am thankful for that extra time we had together. And I’m glad to live in an area with some of the best doctors and hospitals who I know will take the best care possible of my little one, no matter what happens.

This anniversary is a little different from the ones previous, but it may end up being one of the most significant ones I experience. Life is not always going to go the way that you want, and it has a way of trashing many of the best laid plans, but that doesn’t mean that all is lost or that we should just give up. My ostomy has given me a great 5 years, and I look forward to what it will allow me to accomplish and experience in the future, despite the discomfort it may be causing me for the time being.

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!

Dealing with intestinal obstructions

I am never not surprised by how debilitating an obstruction is. It’s so much more than an obstructed feeling in your stomach. For me, it makes my entire body ache. It makes me feel run down. More often than not, my first sign of an obstruction is simply feeling bleh. (Yes, I believe that’s the technical term.) Even before noticing a lack of output or stomach pains.

This morning, I woke up not feeling great. Sort of nauseated and tired. It wasn’t until after breakfast (which I didn’t eat) that I noticed my bag filling up with liquid. That’s when I realized why I had been feeling run down, even last night. Now it’s the afternoon and I haven’t eaten anything all day, but I have emptied several bags of liquid output, and everything hurts and I really wish I could curl up in a ball and stay there, praying that it passes. However, I have a 15-month-old, so that’s probably not going to happen.

I have written about blockages a couple of times in the past (See: My first major blockage – which still makes me laugh that I considered it a “major” blockage. After having a major blockage later on, trust me, it wasn’t. And see: Intestinal blockages during pregnancy), but since they are an ongoing concern, I wanted to address them again.

So how do you deal with an intestinal blockage or obstruction?

blockage obstruction intestinalThe first step is doing what you can to avoid them. You do this by hydrating (which I have not been doing well) and by watching what you eat (which also could have used some work this week).

But once you have a blockage of some sort, the next step is to get back to hydrating. Whether you’ve been staying hydrated or not prior to the obstruction, do it after a blockage starts. A blockage can be caused by dehydration and it also causes dehydration by pushing out only liquid output. Hydration can be helpful in getting the blockage to start moving again, as well as simply helping you stay healthy outside of that.

Next, be cautious what you eat. If you’re anything like me, you likely don’t want to eat anything anyways, but if you are hungry, I suggest sticking with non-solids, such as smoothies, yogurt, applesauce, etc. This way you can continue to take in nutrients, but these foods shouldn’t add to the blockage that has formed.

From here, there are a few things you can try… Massage your stomach. This can help get things moving, possibly even break up a smaller obstruction. Use a heating pad. Of course be careful of putting heat on your skin, but the warmth does help your muscles to relax which can get food moving again. Take a warm bath. Another way of trying to relax your muscles. You can also simply wait for it to pass, which it will sometimes.

A lot of blockages can be taken care of at home in these ways, but do be willing to go to the doctor or hospital if things get worse. Severe blockages can lead to more complications, so if you feel that the blockage is not going to pass easily, the hospital is your next option. Only you know your body, so pay attention to the signs it gives you. If you start vomiting or are dealing with extreme pain, it’s time to get medical help. The hospital will make sure you are staying hydrated and getting the nutrients you need, even if you are unable to eat anything. They may opt for using an NG tube, which is not pleasant at all, but it really does work. If a blockage gets too severe, they may consider surgery, but that’s a last option.

Once a blockage passes, you may still deal with some lingering issues. I like to call it an “obstruction hangover,” because the next day I usually still don’t feel quite right, even if I am feeling a lot better than before. I try to take it easy, drink lots of water and stick with either liquids or easily digestible foods. And usually after that, I feel back to normal.

I hope you never have to deal with an intestinal blockage, but if you do, these are some of the things I have found along the way that have helped me get through them. For those who have been through an obstruction, what has your experience been? Do you have other tips that might help somebody get through a blockage?

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.