Find Autonomy through Depends

Autonomy

We all strive for this - the ability to choose what we do and when we do so.

I have always reasoned that I changed myself for myself, not for my Crohn's disease. Changing my diet to eating healthier and exercising everyday, I did that to feel better, not because my disease took control of my body. I chose to take the necessary steps to feel better and to live a more fulfilling life.

The past nine months have tested my ability to find happiness within a flare-up. From a summer of a liquid/soft diet to no longer running due to my constant need for a bathroom, Crohn's disease has tested my positivity, and definitely gotten the best of me at times. After 11 years of telling myself that my disease will never dictate my life, I am forced to buy depends.

Since my diagnosis I have always considered myself fortunate enough to rarely have an accident. I have found some interesting objects to use as a bathroom, but the point is that I usually save myself from the need of changing clothes.

This last month has taxed my patience with Crohn's. Weeks have passed since I have had bowel movements in the single digits throughout a day. My activities must involve nearby restrooms, just in case. I am too scared to run because the jostling will cause my bowels to become angry.

The decision to wear depends has been long and difficult. For whatever reason, I have continuously told myself that as long as I can make it to the bathroom, I have successfully kept autonomy even with a chronic illness.

Thinking about how I have lived this last month, I think that wearing them will help me regain control. Although I will still try my hardest to make it to the bathroom, I will no longer have restrictions to stay close to the bathroom. I will run again and have no fears about going for walks.

For many people managing Inflammatory Bowel Disease, having an accident can make the most significant negative impact on a person's life. Most people associate an uncontrolled bowel as someone who cannot truly live life. I am not proud of my need for depends, but I will not be ashamed that they will make my life easier.

The most important lesson I have taken from this decision concerns openness about your situation. I am fortunate enough to have a supportive boyfriend that will go with me to the store to buy my first set and has lifted me up through this difficult decision. My friends at school have helped me through the rough periods and provide constant encouragement. This is not something a person should keep to themselves to save face. No one should feel shame for using something that will make their disease more manageable.

Humans of Mayo Clinic

My school has started a "Humans of..." and it's been really cool to learn about what people are thinking and how those experiences affect their lives.

For anyone that knows me, they know that I love talking to strangers and learning about their lives, ambitions, etc. My favorite place to talk to people is Mayo Clinic because you never know where the people are going to be from and usually they have very powerful stories. I usually try to share those stories, but it doesn't always happen. I think it's important for people to realize just how strong we can truly be.

A couple months ago I saw a woman in the waiting room - she was painfully thin and had an IV line placed in her arm for easy access. I sat next to her and asked why she came to Mayo. She said that she came to live. Back home, she was told that she had two months left to live. They had taken out so much of her intestines that they couldn't remove anymore. She weighed less than 100 pounds and the medicine wasn't working. For the last few months she had been taking nutrients intravenously because she could no longer eat. Mayo was her last hope, but it had to work - back home she had a daughter that was counting on her and she was going to keep fighting until she was strong enough to be everything that her daughter needed her to be.

Talking to this woman was inspirational. While she was telling me that she didn't know how much longer to live, I saw a fierce desire to not only survive, but to come out stronger. She wanted health not only for her, but for her family. No matter what the cost was for her, she would do whatever it took to make life easier for her daughter.

This last week I sat behind a family. They started talking about his colonoscopy that was happening the next day and how that would affect what happened next. I excused myself for eavesdropping and asked if he was possibly going to be diagnosed with IBD. Turns out - he actually was diagnosed with Colitis 20 years ago without a flare-up until last year. Then things got real bad really quickly and he had his colon removed. He was having chronic pouchitis and they were looking at possibly doing a permanent ostomy. We talked for a bit and I told them about the Great Bowel Movement and then about camp when the wife said her niece has Crohn's disease. They seemed really excited to be able to talk to others about IBD so I'm not sure if it's something they really talk about.

During this talk, his family was the most inspiring. Throughout my eavesdropping the wife and boy seemed to be very supportive of the man. They didn't make the visit into a huge deal, but were letting him lean on them as much as possible. So often, we focus on how difficult the disease can be on the patient and lose sight of how it can affect the family dynamics. Many times, patients' families are the unsung heroes. Them and friends. I don't know what I would do without my friends who sit with me and distract me when I'm having a hard day.

I'll try to share the stories of others more often - I don't always have time to chat with people, but I like to.

An Unhealthy Relationship

Most of the time, I have a pretty good relationship with my Crohn's. We have fun together - we go out on dates to CCFA events, go to camp together, and we have lots of great inside jokes about my digestion. On the surface, it seems like we belong together.

However, things are not what they seem in the private aspects of our relationship. Crohn's can be very abusive - from the gut-wrenching pain to the early morning vomiting - Crohn's doesn't like to leave me be for very long.

But after a day of beating me up, Crohn's always apologizes. I get to talk with my awesome boyfriend who I met through Crohn's or I get to hang out with some Crohnies. I can never really be mad at Crohn's because I see all of the things that it has brought me.

Some weeks, however, it takes all of my strength of will to not want to break up with my disease. Days like today, where it holds me back from completing my running goal. The days where I can't walk because I'm in so much pain.

Some days, Crohn's is just a huge pain in my ass. It won't let me sit for long periods of time. 

And don't get me started on the abuse it wreaks on me when I have to go to the bathroom! When I have poop running through my intestines, Crohn's gets really mad and starts to become abusive again. It's getting to the point where I'm scared to eat because I know Crohn's isn't going to like me going out and putting that stuff inside of me.

Lately, my runs have been testing our relationship. At first, Crohn's didn't like them, but after months of begging and pleading for Crohn's to understand the importance of running, it decided to let me reach for my goals. Nowadays, Crohn's isn't being so supportive. It's a bit jealous about the time I'm putting into my runs and has decided to start complaining whenever I head out. 

It's not a healthy relationship - but it looks like we're in this for the long haul.

Winter Blues

I don't know about everyone else, but I definitely get hit with the winter blues. Between the cold, the lack of sunlight, or the lack of really being able to do anything, I always get a sense of futility during the winter. It's almost like a mini-flare. I can't go outside to play, I can't run around, and I really don't want to go places (although now it's because -35 is just too cold to go for a walk in).

Right now I've especially been getting hit with the blues. Because it's so cold, my intestines feel like they're cramping up when I go outside. As well, I'm really hating my diet - I'm not a rabbit, so why would I constantly want to be eating leafy things? However, when I eat something that's not on my diet, my stomach grumbles at me. This morning I had grapes for breakfast, which earned me some quality time in the first floor bathroom in the library.

As great the opportunities have been through my disease, I definitely am feeling the hopelessness that sometimes comes along with chronic diseases. With the clinical trial, I was hoping that I would finally feel good, but I'm tired all the time, even after eight hours of sleep.

I'm not one to bemoan my disease, so I'm trying to think of a way out of these winter blues. There's a support group meeting coming up this thursday, so I'm thinking quality time with the Crohnies will be beneficial. This year I've realized that I've been immersing myself more within the IBD community - between the support group, national council, and just spending more time with the Crohnies on campus.

I think that is a good way to stay away from those sad feelings. Don't try to pretend the disease doesn't exist, but embrace it, and see all of the good aspects that come from it. Although I have to admit, that's not always the easiest thing to do. Some of the Crohnies on campus see the psychologist at school regularly. I've heard that over 90% of people with IBD are depressed - maybe we should all make a committment to finding someone we can talk to about our problems. They're too difficult to live with on your own. Just the other day I had my first accident of the school year. Right afterwards, I texted my Crohnies and we bashed IBD and made poop jokes and then ended up reminiscing about great times at camp. I know I wouldn't be able to do this without them.

I guess that would be my advice right now - talk it out. It's totally cliche, but the burden becomes easier to bear when you share it.

Being an Advocate

What a busy January! I'm finally back into the swing of things after the council trip to Philadelphia. So far, being on the National Youth Leadership Council - or whatever it's now or will be called - has been a great experience. All two weeks of it. I'm learning a lot about what's going on in IBD in the other parts of the U.S., especially with research. Hopefully in the next few years we'll be treated more specifically on the pathways that are being blocked by the mutant genes we have. The Children's Hospital of Philadelphia is also going to be looking into what is the "perfect" bacterial state of a healthy gut, and hopefully determine what kind of diet would help a Crohnie reach the same levels of bacteria.

Although it's scary thinking that I'll be working with entirely new branches of CCFA, it's really exciting. If all works well, I'll be able to work with Crohnies from the University of Minnesota to reach an even wider audience than St. Olaf and the Northfield community.

The rate of IBD is increasing - probably a mix of better diagnosis and whatever environmental cause. However, people still aren't understanding our disease. One of the leaders of the council explained how her professor wouldn't allow her to take a test later even though she had spent the night in the hospital. Things will only get better if we go out and educate people about our disease. I know poop isn't the most glamorous thing, but we all do it. If you don't spread the word, how can you expect others to understand what your needs are?

For more advice/information on living with IBD in college, you can like Campus Connection on facebook, or go to the National Youth Leadership Council webpage on CCFA. If you type those in google search bar, it should pop up. In the next year we'll be revamping the webpage to have more information and better access to all the links/templates provided on the CCFA webpage. Also, we'll hopefully have programs that will help you spread the word about IBD on your campus. The next couple years should bring about a new understanding of this disease, and I'm very excited that we all get to be a part of this.

Telling Your Significant Other

During our IBD talk at Camp Oasis, the teenage girls were asked to talk about how and when they would tell their significant other about their disease. I thought this was a really interesting topic as some people are super open, and others don't tell many people. This can be a delicate subject, and it's up to you when you tell him/her about your IBD.

If your SO didn't know before you started dating, how do you start up the conversation about IBD? "I'm really enjoying this salad. By the way, it may give me uncontrollable diarrhea." Not exactly an easy topic to broach.

The perfect time to break the news is different for each relationship. If you start out strong, it may be easier to get it out in the open right away (probably not during a meal). Honestly, if your SO can't handle the fact that you have a digestive disease and thinks it's gross, he/she is so not worth your time. Telling your SO early on means that you can slowly bring up other topics about it - food, bathroom issues, doctor appointments, etc.

However, if you don't feel comfortable telling your SO right away about your IBD, that's fine too. It may be better to tell them before things get too serious - some people are jerks and it's easier to get hurt if you're deep into the relationship. As well, it may be difficult to explain why you have to run to the bathroom several times or have to cancel on several dates. Complete honesty is best to keep relationships healthy.

I've found it to be so much easier when my guy knows about my Crohn's. They understand why I can't eat certain foods and know that I'm not being a party pooper when I say I don't feel like going out. Plus, many people will be truly curious about the disease and want to know more. As great as Crohnies are, sometimes it's nice to talk to someone without IBD just to get out your frustrations.

Telling someone that you have IBD can be a truly terrifying ordeal, but so rewarding as well. Most people will be on your side and so eager to help you fight your battles. Don't be too scared - they care more than you think.