Tag Archives: pain

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.

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.

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.