Category Archives: Surgery

We all have an invisible illness

Tomorrow starts off Invisible Illness week. As many of you may know, Crohn’s disease and ulcerative colitis are considered invisible illnesses because you can’t always tell what an individual is dealing with based on what is visible or how they look. The images I included in this post were all taken at times that I distinctly remember how bad I was feeling. You can tell in some of them more than others, but after living with a chronic illness for so many years, I have gotten pretty good and disguising how bad I may be feeling at times.

As I was thinking about Invisible Illness week, I was reminded of an interesting discussion we had at my ostomy support group a few months back. We talked a little about the thoughts that we all dealt with when we first knew we’d have to have surgery to get an ostomy and about the grief that is felt over the loss of a part of yourself. We finished up by discussing what we actually went through and how we made the decision to keep going. It wasn’t a lecture on what’s the right way to handle all of this, but simply a discussion of what we each had experienced.

At the meeting, a couple of people started talking about everything that they had been through and one guy listed off a dozen or so surgeries he had previously had for various reasons and finished by saying that he knows people who are much worse off. A lot of people starting chiming in about how somebody else always has it worse and that provided encouragement to keep going. I know that it is true that others have it worse than me. I fully admit that. On a regular basis I am faced with someone new who has been through so much that my surgeries and medications and hospitals stays and pain all seem very small. But I really don’t think that’s how we’re supposed to feel.

stephanie invisible illnessI think we (and by “we” I mean the patient/health community and maybe even society in general) have gotten too caught up in the “who’s got it worse?” game. First of all, there is absolutely no way that judge that and secondly, I don’t understand why we all feel the need to try to judge it. We attempt to categorize the level of awfulness that each person has to deal with when, in all honesty, we are in no position to make that kind of assessment.  Who’s to say that the person with the severe illness but a strong support system is any better or worse off than the person who has a mild illness and is all alone? All of our stories are so complex and interwoven into so many aspects of our lives that, unless we are in that position, we can never know what it’s like.

There is definitely a certain level of understanding that is present amongst people with the same diagnosis and even in people who are living with very different issues, but can understand chronic illness in general. But there can never be a complete understanding of another person’s journey. Symptoms that are simple for one person to deal with may send another person into a deep depression. I know it’s hard, but I think we need to stop comparing ourselves to everyone else and start seeing what we all really have in common. Part of what I love about being involved in the IBD & ostomy community is that I feel like we all see each other for what we have in common and that creates an intimate bond between us all. But even for those who are not living with Crohn’s disease or ulcerative colitis, chances are they also have something they are dealing with and learning to live with. Just because we don’t know what it is doesn’t mean it isn’t there.

We all have some sort of invisible “illness,” regardless of whether or not it is actually classified as an illness in the true sense of the word. We all have some sort of cross to bear that helps define who we are. It could be a diagnosable disease or an anxiety disorder or a troubled marriage or difficulty making friends. We all have something that we must try to overcome in this life. And whatever it is may be visible to others or may stay hidden, but that doesn’t mean it isn’t there. So regardless of whether you are living with an illness or dealing with some other difficulty in life, I encourage you to not think about who has it worse, but rather to remember what we all have in common.

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.

Featured Again! US News & World Report: Life after colectomy

I was so excited to be contacted by U.S. News & World Report again this week. This was for an article about life after having a colectomy. I think they did a great job with this article, explaining more about the surgery and what to expect, but also showing that it’s not something that will inhibit the way you live you life. The subtext says it all: “What can people do once they have an ostomy? Anything they want.” Check out the full article.

us news world report colectomy

Intestinal blockages during pregnancy

I have known all along with this pregnancy that I could have some complications because of my ostomy. I even mentioned in my post on the second trimester that I was concerned about the possibility of blockages as things progressed. Turns out, it was a valid concern.

Sorry if this is a little long, but I’ll try to tell this story as succinctly as possible. It started last Monday evening. I started feeling a little funny at work and by the time I got home, I was having a decent amount of pain around my stoma. I also realized that I really hadn’t emptied my bag much at all that day. I tried to take it easy that evening, drinking a lot of fluids and staying away from solid food, putting a warm compress around the area, massaging it the best I could and eventually taking a warm bath, all of the old standbys for dealing with a blockage. But this all becomes a little more complicated when you’re pregnant, since you have to be careful about heating your body up too much, plus it’s just hard to submerge a big belly in a bathtub. But hospital ERafter the bath, I was feeling a lot better. I tried to sleep it off and told myself that if things weren’t better in the morning then I would go to the ER. Well, in the morning I was feeling better, but still was having very little output. I decided to go to the ER out of an abundance of caution since I’m also responsible for another life now.

At the ER, they checked everything out and decided it would be best to admit me in order to give me some IV fluids since I was dehydrated and to keep an eye on my output. Normally when someone has an intestinal blockage, the doctor can sort of thump on the belly to listen for certain sounds, and they will usually do an X-ray or a CT scan to find out if a blockage actually exists and where it is. But none these are options when you’re pregnant. The belly thumping is pointless and the X-ray and CT scan can be potentially harmful to the baby because of the radiation, so really all I could do was wait. Not eat anything and wait.

I ended up staying for 2 days, getting lots of fluids and keeping a close eye on the baby during that time. By then my output was getting back on track and I was able to eat solid foods again. So home I went on Thursday.

We had a family wedding going on that weekend, so it was very busy. I felt fine all day on Friday and even when I woke up Saturday morning, my output was completely normal. But about noon, I started feeling blocked up again. At the wedding, I was in a decent amount of pain, but this time it was not focused around the stoma, but rather right between my uterus and my ribs, which is where your small intestine gets smushed up when you’re pregnant. I was also very nauseous. I tried to stick it out as long as I could, but I couldn’t touch any of the food there and was honestly concerned I was going to vomit at any moment. I couldn’t even get water down at this point. I left the wedding early to go home and go to bed.

I felt better being in bed, but when I woke up Sunday morning, I was still in a lot of pain, I hadn’t had any output for close to 24 hours, and I was still nauseous. I knew I needed to go back to the hospital, no matter how much I didn’t want to. This time, as soon as I arrived they took me straight to Labor & Delivery. They checked for any signs of early labor, but the baby was stephanie hughes hospital blockageperfectly content to stay put. While thankfully everything looked great with the little one, I was in pretty excruciating pain. I was literally scared that I could get a perforated bowel that could put both me and baby at a huge risk. I got some more IV fluids which really seemed to help at first, but then the pain and nausea came back just as strong. This time, I did actually throw up some horribly vile looking stuff, which is the first time I’ve actually thrown up from a blockage. I was again admitted to the hospital.

By now I hadn’t eaten anything in over 30 hours, yet I was burping repeatedly, but thankfully did not throw up again. Since I was still having at least a minimal amount of output and I wasn’t throwing up anymore, the doctors figured it wasn’t a complete obstruction, but likely a partial one due to a kink or something like that in my small intestine.

I was still in pain the next day, even after 2 days of not eating and lots of fluid, but it eventually started to subside. They put me on a clear liquid diet and by day 3 I was getting more output, and the cramping was down to a minimum. Still causing a little discomfort, but nothing as frequent or intense.

stephanie hughes pregnant bellyOne upside was I went down for an ultrasound that morning to check on the little one, who seemed to be completely unfazed this entire time, which helped me to relax. It was difficult not knowing what was going on with the baby this whole time. I was on a prenatal floor the entire time, so I was glad knowing we were in good hands and that they were keeping an extra close eye on both of us.

I was able to go home by day 4, feeling a lot better, even though a little worn down. All of this to say that blockages are a real concern when you’re pregnant. And I assume even more so when you’re short like me and there’s just not a lot of room for all of the baby and uterus and bowel and everything else. I would think this would be true for anyone who has had bowel surgery, whether you have an ostomy or not. My surgeon told me that the baby itself is rarely the cause of a blockage and it’s usually due to scar tissue. So I take that to mean that it’s most likely an area of my intestine that has scar tissue that also got jammed up because of my growing belly and the lack of available space.

After spending 7 of the last 10 days in the hospital, I think I’ve decided that I need to stick to a low-residue, mostly liquid diet for the remainder of this pregnancy. (I do not recommend doing this unless you speak with your doctor or nutritionist first!) Both my OB doctor and the dietician said that it should be fine for me and for baby, especially since I’m as far along as I am, but I need to make sure that I am getting enough protein and enough good calories, not empty ones from sugar and such. I know it will be hard, but thankfully it’s only for a limited number of weeks. We will see how it actually goes in practice because I really love food! But I also really love not being in the hospital.

Have you dealt with intestinal blockages while pregnant? Are there any tips you have found for avoiding them? Or for helping them to pass once one starts?