Category Archives: Inflammatory Bowel Disease

Extra-intestinal IBD symptoms

I had someone ask me recently what symptoms I have experienced from IBD and, y’all… the list is long. An important part of IBD awareness is sharing knowledge about the different ways these diseases can affect any given individual. There are the typical symptoms of urgent-and-often bathroom trips, malnutrition and weight loss, and fatigue. But the physical manifestations of inflammatory bowel disease go far beyond this. There are symptoms due to the presence of inflammation in the body, as well as symptoms stemming from the medications taken for the treatment of IBD. Here is a rundown of a few of the potential manifestations outside of the digestive system, but is by no means an exhaustive list. 

stolen colon crohn's disease ulcerative colitis inflammatory bowel extraintestinal manifestations symptoms

Eyes

Inflammation in the eyes is often called iritis or uveitis. This is something that I have dealt with multiple times in the past. The symptoms of this inflammation are eye discomfort, redness, sensitivity to light and decreased or blurred vision. For me, it usually started by feeling as if there was something stuck in my eye, usually bothering me when I would blink, and soon my vision would begin to blur. It is most often treated by a steroid eye drop that can be prescribed by an ophthalmologist. In my experience, after a diagnosis by the eye doctor, the inflammation would clear up quickly after I began using the drops.

Joints

Outside of the intestinal IBD symptoms, joint pain has been the most difficult part for me to deal with. This pain may be caused by inflammation in the lining of the joint (arthritis), but sometimes the pain occurs without inflammation (arthralgia). The most commonly affected joints are the knees, ankles, wrists, elbows, and hips. As opposed to rheumatoid arthritis, the arthritis most commonly seen in IBD patients is not degenerative.

Skin

One of the strangest IBD-related symptoms I’ve ever experienced has got to be erythema nodosum, which manifests as painful red lumps. It’s actually caused by inflammation in the fatty layer of your skin. The lumps can appear on almost any part of the body, but are most common on the front of your shins, as mine were. Erythema nodosum is most often treated with the same methods as IBD, so usually your current treatment will help to reduce these lumps.

Bones

Your bone health can be affected by IBD. Like the rest of your body, parts of your bones are continuously broken down and regenerated. Osteoporosis occurs when the regeneration can’t keep up with the breaking down, causing your bones to become brittle and weak. I have been told I have osteopenia, which is often a precursor to osteoporosis, where your bones are weaker than average, but not to the same extent. This manifestation of IBD is not as directly related as many others are. It most often occurs as a secondary symptom due to either malnutrition or prolonged use of corticosteroids or a combination of both. 

Circulatory system

Anemia is probably one of the most common extraintestinal manifestation of IBD. It means that your blood is not carrying enough oxygen throughout your body and is usually due to low levels of iron, B12 or folate. Patients with IBD often become anemic due to blood loss, malabsorption by the intestinal tract, and diet. Anemia is a major cause of fatigue in IBD patients, and can also cause dizziness, increased heart rate, poor circulation, even hair loss. 

Mental health

Patients with IBD are at a greater risk for mental heath conditions, specifically depression and anxiety. It’s not a surprising statistic, especially considering everything discussed thus far. Depression often involves feeling persistently sad or “empty”; feelings of hopelessness, worthlessness, negativity; loss of interest in activities once enjoyed; difficulty concentrating; insomnia or oversleeping; restlessness and irritability. Anxiety is often experienced as feeling nervous or on edge; not being able to control worrying; trouble relaxing; constant dread. These mental health conditions are commonly underdiagnosed in the IBD community, which is very sad considering they are often treatable, either via therapy or medical treatment. I was one who dealt with a lot of depression as a kid when first diagnosed, but I never spoke with anyone about it or entered into any kind of treatment. I regret not seeking out help at the time. 

As you can see, there is so much more to inflammatory bowel disease than just symptoms of the digestive system. And this is just a small sampling of symptoms that I have experienced personally, but there are other symptoms and manifestations that I have not covered here. Any time you are dealing with a strange symptoms outside of the digestive tract, I urge you to bring it up with your gastroenterologist, because there may be a link between that symptom and your IBD that you may not have realized.

Citations:
Levine, J. S., & Burakoff, R. (2011). Extraintestinal manifestations of inflammatory bowel disease. Gastroenterology & hepatology7(4), 235-41.
Loftus, E.V., Jr., Guérin A., Yu, A.P. (2011). Increased risks of developing anxiety and depression in young patients with Crohn’s disease. Am J Gastroenterology, 106(9), 1670–7. 
The Crohn’s & Colitis Foundation. (2017, April 10). Signs and Symptoms of Depression. Retrieved from http://www.crohnscolitisfoundation.org/resources/depression.html
The Crohn’s & Colitis Foundation. (2016, December 5). Stress and Anxiety. Retrieved from http://www.crohnscolitisfoundation.org/resources/stress-and-anxiety.html

Surviving the holidays with an ostomy

Y’all, I love the holidays. I love how the world transforms into a different place for one month of the year. I love finding reasons to celebrate with family and friends. I love all the yummy food there is to eat. I love being intentional in thinking about what we are thankful for.

What I don’t love is all of the obligations, stress, and complications that often arise this time of year. Things like over-eating and stress can take what should be a joyous experience and turn it into a nightmare, especially for those with an ostomy or any chronic condition. I put together a quick survival guide for getting through the holidays and trying to enjoy the season.

1. Eat wisely.

Don’t eat all the food that is put in front of you. I know it is so yummy (and plentiful!), but overindulgence always leaves me feeling icky. My mom makes the best turkey dressing I’ve ever tasted. It’s one of my favorite parts of Thanksgiving and I look forward to it every year. The downside: It contains walnuts. And nuts are the number one thing that gives me blockage issues. So while I’d love to eat the entire dish of dressing, I make sure to put a reasonable amount on my plate and take extra care to chew it well. For anything else that may cause an issue (like my grandmother’s corn casserole) I take a small amount. Even though I avoid corn most of the time, allowing myself a small scoop helps me to not feel deprived of my favorite foods, but also to not regret eating it later.

Another things is to try stop eating before you are completely stuffed. This always leads to a large amount of output later, usually overnight, which can then lead to leaks. For this reason, try not to eat too close to bed time. Give your body time to digest the food before you turn in for the night, even though I know that turkey just makes you want to sleep right away!

2. Hydrate, hydrate, hydrate.

I sound like a broken record with this one, but it’s the biggest issue I deal with on a daily basis. I am constantly dehydrated, and it leads to so many other issues (fatigue, headaches, joint pain, dry skin, frizzy hair, thick output, bag leaks). It’s especially important to keep in mind during the holidays when alcoholic drinks are readily accessible and events often involve mingling, making it difficult to keep track of how much water you’ve had to drink.

Try drinking extra water before arriving at the event, so you’re already hydrated when you get there. For every alcoholic drink, drink a full glass of water after it. I always have a bottle of water in my bag and my car, so I never have to worry about finding it when I’m somewhere new. The winter months can also mask how dehydrated you are since you’re not sweating as much or feeling exerted, but trust me, it’s still happening!

3. Lose the stress.

This one is not specific to having an ostomy, but with having IBD, I know for me personally that my symptoms have often worsened during times of high stress, and the holidays are often full of that. One of the hardest parts of the holidays is simply how much there is going on. There are parties to attend, parades to watch, Santa to visit, family members (who may not be your favorite people) to entertain, and many, many presents to buy. I have been learning how to say “no” more often and with more conviction. I try to pace myself, get plenty of rest, and to not stress out about all of the things that I have to do.

My son is 3, so we’re at the age where he’s starting to enjoy different experiences. Last year, I wanted to try out several events  in our area to figure out what might make a nice tradition going forward. Ultimately, I found I wasn’t enjoying any of it because it was all just too much and I felt we ended up losing so much of the joy of the season. This year, I am scaling back. 

If you are feeling stressed already, try to find things that you can cut out. Maybe it’s hosting dinner, traveling, or going to 30 different tree lighting events and parades with your kids. Cut out what’s bringing you down, and maybe try to find some time where you can do something that you want to do, and not just what you feel obligated to do. Whatever it may be, try to find a way to enjoy this time and let the season be magical and not a burden.

Potty training your kids when you have an ostomy

Potty training. This is definitely one of the things that did not cross my mind when I was making my decision to get an ostomy. But it goes to show that there are plenty of ways that having an ostomy will impact your life that you will not immediately imagine.

I currently have a 3 ½ year old and a 16 month old. We just went through the whole potty training experience with my son just before his third birthday. It was an interesting experience because, as I realized, I do not pee or poop like he does! How in the world was I supposed to teach him to how to transition from diaper to toilet?

I mean, seriously here, I have not “pooped” now in more than 6 years and I honestly don’t even remember when I last had a solid one, but it was quite a while before that! And wiping bottoms again?! I thought I was past that stage in my life!

But just as with so many ostomy-related things, it’s something that I was able to deal with by preparing and taking a little extra care. toilet potty training ostomy children IBD crohn's disease ulcerative colitisUltimately, I do not believe the ostomy really affected the potty training process to a large extent. We still both sit on the toilet (at least for the time being), so he could grasp that part. But I made sure to take the time to explain to him that I poop differently and it comes out of my bag, rather than my bottom. It gave us a good opportunity to talk about the process, what he could expect, why we do it and all that. I have not gotten too deep into a discussion of my ostomy with him, but he knows that I was sick and it made me feel better. I’m sure that conversation is coming in the not too distant future and I will be sure to update when I do!

For the actual potty training process, I’m sure it was pretty much the same as it is for anyone. Early on I got one of those stand along toilets so we could start a conversation and he could get an idea of what it’s like. He would occasionally want to sit on it, but other than one random time, he never actually used it. And that one time completely freaked him out. Around 2 ½, we started the actual process of sitting on the toilet and used one of the smaller seats that goes over the regular toilet seat. He did great for a week or two and would sit on the toilet and pee in it when I asked him, but he would not tell me he needed to use it and would not poop in it at all. After that first week or so, he was over it and refused to sit on it again. So we held off for a couple of months.

We tried again and had a similar experience, where he did great with peeing but would not poop in the toilet. It became frustrating for me because either he couldn’t wear underwear or I ended up cleaning up a lot of poop accidents. (And let’s be honest, I’ve dealt with enough of those in my life!) So I decided to wait a little longer.

Right around his third birthday, we gave it another shot and this time I loosely tried the 3 day method where you stay home, no pants, drink a lot of water and going to the bathroom is literally all you do those days. At this point, I think he was just ready. Of course we had some accidents those first few days, but they were mostly overnight or when I was taking care of his sister and unable to help him out. Within 2 weeks, he was set. Only the occasional accident that you can expect from a newly potty trained child.

To be honest, I was a little anxious about how to handle this process with him, since you are encouraged the let them see you use the bathroom, so they can understand that others do this and can see it firsthand. Even though I do things different, it was a good opportunity for us to talk about using the bathroom and get into at least a surface level of my current situation and how I got here. I have never shied away from letting him see my bag and to answer any questions about it, but I don’t think he’s been to the point of being able to grasp what it means just yet, but I do think he will start being able to understand more in the not too distant future. In the meantime, I’m glad to share with him some of what makes me different and to celebrate those things that make us who we are.

3 tips to prepare you for ostomy surgery

Regardless of whether you have been talking about surgery for a long time, putting it off for just as long, or it may have just recently come up, but there comes a time where you know it’s inevitable. At least that’s how it was for me. I went through weeks and months of hoping for another option, but ultimately, I knew what I had to do. (You can look back at some of my very early posts to hear a little more about it.) But once I officially knew it was happening and had about 2 weeks until the surgery, I didn’t really know what to do during that time. Having been through it now and looking back, these are the things that helped me prepare before surgery or that I did after surgery and wish I had done sooner.

Find someone to talk to.

So so important! I can’t tell you what a difference it made just talking to someone else who had been through the surgery. I was blessed to be connected with a friend-of-a-friend…of-a-friend… who had an ostomy and had gone through surgery at about the same age that I was. (You can read about my initial meeting with her.) She had lived with it for a while, had kids, and done many other things that I had hoped to be able to do. It was so comforting to hear from her and to see that she did not look any different from any other person.

There are UOAA groups that help to connect individuals who live in the same area and you can also speak with the nurses who are helping you prepare for surgery about trying to find another person to speak with about living with an ostomy. However, not everyone is able to get connected in person with someone else in a similar position face-to-face, but there are many great options for talking to people online. I do, however, advise caution in looking online, because while there are great positive resources out there, there can also be a lot of negative ones, as well. And if you need someone, I always try to be that person to others whenever I can.
ostomy supplies brands coloplast convatec hollister prepare for surgery

Order supplies.

If you know surgery is coming, order some supplies now! All of the major ostomy suppliers have programs where you can sign up to receive free samples of their products. (Links to their request pages: Hollister, Coloplast, ConvaTec) This was great for a number of reasons. First of all, I have said before that everyone is different and the supplies that work for me may not work for you, and vice versa. I think it’s best to try out the many different options and figure out what fits best into your life and what feels the most comfortable. Plus, each of the samples came with a kit and a lot of good information. The companies followed up with me to answer questions and send additional supplies, when needed. When I came home from the hospital, I had a very large, transparent bag on and I felt so uncomfortable. Once I switched it out for an opaque bag I felt much more confident. It was a little change, but it made a big difference and I was so glad that I had the option once I got home. Finally, getting the supplies will last you for several weeks after surgery, so it’s nice to not have to place a large order right away.

Break the tension.

I was terrified before my surgery. I was hopeful, because I had to be since I had run out of other options, but I was still terrified. I booked my surgery for as quickly as possible because I was afraid I wouldn’t go through with it if I thought about it for longer. (I even asked my surgeon how much of a heads up would be appropriate if I changed my mind! I assured him I wouldn’t, but it made me feel better to know that I could.) But the night before my surgery, I was laying in bed with my husband and looking for ideas for what to wear under my clothes with the ostomy. Thankfully today there are some really great and sexy underwear options out there, but a few years back, that was not really the case. I found some really hideous options and I showed them to my husband and we started laughing hysterically. It was one of those moments where if you don’t laugh, you’ll cry, and I really needed to not cry. I realized that I had to break the tension and not focus on everything I was afraid of happening. I encourage you to try to find something like that to help you get through those difficult times.

Going through surgery is not easy, no matter what situation you are in or what your health is like prior. But hopefully, these tips can help you to prepare the best that you can. I know there are things that others have done that can help, too. What is something that helped you prepare for surgery? Or that you wish you had done beforehand?

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