What Your Friends With Crohn's Disease & Ulcerative Colitis Want You To Know

Date: December 12, 2016 at 9:42 am- by Ali- Comment(s): 10

Hello from the other side of what was a crappy — ugh, partial pun — week last week.

I had every intention of sharing all kinds of posts in honor of Crohn’s & Colitis Awareness Week, but instead I was too busy actually having Crohn’s disease. Not only was my disease particularly humbling last week, I also got smacked with what was either a gnarly cold or a flu (Google was not helpful in differentiating between the two since I seemed to have every symptom of both), and I could barely move for the entire week — except when I had to hustle to the bathroom. I was in rough shape.

Nurse Ellie to the rescue...

Nurse Ellie to the rescue…

And then, because life wasn’t fun enough yet, I got a call from my doctor on Wednesday saying he wanted me to come in for a colonoscopy Friday.

This marked my fourth colonoscopy, so I’m not new around here, but the prep for the procedure still always sucks. The upside — I found one! — was that being super sick all week meant I hadn’t had much of an appetite, so between that and the Crohn’s, I didn’t have to do much prep to get to the point of being empty inside. I slugged as much Miralax Cocktail as I could, and the actual procedure was a breeze. (Yay anesthesia!)

Today's colonoscopy was a breeze! (Thanks to Stacey the Anesthesiologist who knocked me out beautifully so I didn't remember or feel a thing! I love anesthesia so much.) Prepping for a colonoscopy always sucks, but the actual procedure is quick and easy — and important. My doctor confirmed what I already knew: that I'm in the midst of a pretty serious Crohn's flare. I have 23 centimeters of active Crohn's in my rectum (cute) and large intestine, plus some little patches of disease and a few polyps scattered around. The doc said what he saw inside definitely explains how I feel on the outside, and that "even a first-year intern would be able to look at your intestines and see that you're sick." Next up: getting my next round of Stelara a few weeks earlier than planned, and continuing to wait… (And thanks to @briancristiano for being my "escort" all morning and to @mbsthinks for visiting me in recovery. I felt very popular.)

A photo posted by Ali Feller (@aliontherun1) on

Afterward, my doctor explained that my insides look as bad as I feel, and that I currently have 23 cm (around 9 inches) of super diseased intestines. My Crohn’s is located primarily in my rectum and large intestine, and I had some “mini-polyps” and other little patches of disease scattered around. It was nice to get confirmation that I am, in fact, as sick as I know I am, but unfortunately there’s still no insta-fix for Crohn’s. Instead of waiting the full eight weeks between infusions, I’ll get my next Stelara injection sooner in hopes that’ll speed up my road to recovery.

As for why I’m sick? I assured my doctor that I really haven’t been overly stressed lately — which tends to be a trigger for Crohn’s flare-ups — and he said he’s not surprised I’m flaring. I came off the study drug back in April, and his thought is that my body “saw an opening in the defensive line and ran for it.” I don’t really follow sports, but basically my body realized I was off medicine and was like, “Cool, let’s get her sick again!” How rude!

Anyway, the point of this post…

By now, the world has heard me babble about having Crohn’s for a long time — so I figured I’d bring in some reinforcements. I reached out to four of my fellow IBD-inflicted runner friends and asked them, “What do you wish people understood about Crohn’s and ulcerative colitis?” Unsurprisingly, they had so much wisdom to share. I’ll let them take it from here…

Caitlyn Pilkington, an editor at Women’s Running who just hit the 10-year remission mark with her ulcerative colitis!

  • Just because I’m in remission doesn’t mean the symptoms and hard days go away. There are still struggles with cramping and bloating and diarrhea. There is still the mental struggle of worrying when you feel the need to go to the bathroom. Remission, to me, means the doctor can’t see any active signs of inflammation or colitis in my gut, but it’s still forever in there.
  • Don’t question my need for a restroom. Think of it this way: We are a walking laxative that can be set off at any minute. That said, we also know enough about our bodies to know when we can wait and when we cannot. So when we say now, we mean NOW.
  • I didn’t do anything to get this disease. In fact, doctors don’t always know where it comes from (although there are a lot of studies and hypotheses out there). I love offering support based on my experience, but know that every situation and body is different. What sets me off isn’t a specific thing that will set someone else off. You can’t put this disease, or any other one, in one blanket definition.
  • Running is equally good and bad for my disease. It’s good in the sense that it literally keep me normal, sane, fit. It’s bad that all that jostling can really work a gut over, especially in the depths of marathon training. I appreciate when people remember that about me. If I run a 20-miler, I might not have the energy to do anything after.

Abby Bales, a mom of one who has had numerous surgeries to keep her ulcerative colitis at bay (and we have the same doctor!)

  • Keep inviting them to do things. They may say no 9/10 times because they’re too sick to go, but knowing people still think of you and want to be your friend means more than you’ll know.
  • Ask them how they’re feeling. Ask about their disease. Ask about their symptoms. Ask about the side effects of their drugs. Ask and don’t be afraid.

Robyn Mayerwho is a fellow November Project-er from Denver, CO, and is a seriously badass runner with Crohn’s disease (and her puppy, Mona, looks like Ellie’s twin!)

There are a number of different identities I portray on social media: runner, hiker, friend, wife, sister, dog-and-cat lover. Something that I very rarely talk about, though, is that I have Crohn’s Disease. Thanks to the self-selective nature of the internet, it’s something I can choose to not bring up, and due to the invisible nature of the disease, not a lot of people know this about me. But in honor of Crohn’s and Colitis Awareness Week, I wanted to speak up as one of the 1.6 million Americans affected by inflammatory bowel diseases. Not only is there no known cause of Crohn’s Disease, there is also no known cure either. As such, remission-and-relapse is a cycle most people with IBDs experience even with treatment, and many people go years without an effective treatment at all since each patient’s situation is different. Personally, I’ve been lucky enough to have been in remission more often than relapse since I was diagnosed. However, relapse is something that could happen at any time, without much warning, which has helped me remember to never, ever take my health for granted. Your digestive health is inextricably linked to your ability to live comfortably day-to-day, which is something any IBD patient will tell you. While it’s not the prettiest topic to bring to the table – raising awareness for these diseases is instrumental in working toward more effective treatments and ultimately a cure. One of the first steps is for those of us who experience IBDs on a daily basis to raise our hands and start communicating. Connection and communication was so important for me when I was first diagnosed, and I’d encourage anyone experiencing IBDs to reach out into the community for support. The Crohn’s and Colitis Foundation of America is phenomenal, and I recommend checking out their website if you or someone you know is interested in more information: www.ccfa.org. One of my goals for 2017 is to be more of an advocate toward education and awareness of these diseases, so I’m taking the first step of speaking up. #ibdvisible

A photo posted by Robyn Mayer (@rbbirdie) on

  • For me, the worst part about an intestinal disease isn’t the bathroom trips or the inconvenience (although both of those things are hard), it’s the emotional and physical side effects. Physically, you’re so weak from going to the bathroom so much, but also not being able to eat enough, sleep enough, or even drink enough water. I remember not being able to stand up long enough to wash my face in the morning, which was so defeating. Not to mention my sits bones get horribly sore from sitting on the toilet so often, nothing tastes good, and generally my entire body aches. Oh, and my entire mouth gets filled with cold sores. Mentally, the not knowing when you’ll get better or even if you’ll get better, not being able to help your partner or give anything to them, being completely reliant on the healthcare system (would never wish that on anyone), and perhaps more than anything else, not feeling like yourself. At my sickest points, I didn’t even feel like I was in my own body, which makes finding inner strength and motivation that much more difficult.
  • Appreciate your digestive health! I think it’s so easy for people to think of something as ordinary and everyday as going to the bathroom as just that: ordinary. But anyone with IBD will tell you that they’d give anything to be able to “not think” about going to the bathroom.

Gia Alvarez, who is a mom of three and a fitness instructor with Crohn’s disease

  • I would love for people to understand that its not “something I ate.” This disease lives inside me and rears its ugly head no matter how careful I am with what I ingest.
  • I would love people to know how imperative it is to have a supportive spouse or partner when you’re living with this disease. It’s not easy being married to or living with one of us, I could not manage life while managing Crohn’s without my husbands support.  I am eternally grateful for his partnership in managing this disease.

Thank you for sharing, friends!

As for me: I am so grateful to have friends like Caitlyn, Abby, Robyn, and Gia. Having supportive friends is huge, but having friends who actually know what you’re going through with your disease is imperative. If the government is tracking me, they’re going to see some seriously scary stuff in my texts with these women — like that time my doctor prescribed me an enema and I had to ask Abby how to, uh, insert it.

And if you’re a friend of someone with Crohn’s or colitis, know that there are good days and bad days. One day we might completely chained to the toilet and in pain, but the next day, well, we might be able to run a marathon. It’s all unpredictable and scary, but we do our best.

10 Responses to "What Your Friends With Crohn's Disease & Ulcerative Colitis Want You To Know"

I’m sorry to hear you’ve been having a rough time of things! I don’t know anyone personally who has Chrons, but I have a family history of chronic illness and I think the most frustratng thing is that it’s often invisible. Raising awareness is so important!

Beautiful article. My step mom has Crohn’s Disease. I would watch her in an immense amount of pain on the couch. It’s hard to watch people you love be in pain, but you have to be positive for everyone!

https://youtu.be/ibjrEnAZj78

xx!

You still continue to be my inspiration. I don’t have anyone close to me with Crohn’s but I do have a wonderful network of friends. We always run together on Saturdays followed by coffee (because we really haven’t talked enough during our runs). Last time when I was in hospital a few months ago they ran to my hospital and we all had coffee together. Love them all!

Thinking of you Ali – you are incredibly awesome. Sending lots of happy thoughts your way. xoxox

People just don’t realize how quickly you can go from manageable to mammoth misery when living with an IBD. Friends and family can sort of understand, but employers, clients, management, employees, the professional side of life is the perhaps the most difficult to manage.

I don’t live to work, but the job supports the lifestyle (and having some measure of health coverage don’t hurt). Stress goes up, symptoms get worse, vicious cycle engaged. Thank you for sharing this. Empathy can mean the world sometimes.

Yes, yes, yes, and so much YES! As a fellow Crohn’s-er this post is much appreciated!

Hear, hear to asking questions! The best way to increase awareness and understanding of medical conditions. Thanks always for your candor.

So glad you have Ellie as your nurse to look after you!

Love all these responses. I would also add to Robyn’s emotional side effects. It’s usually harder to deal with the mental side of the disease than the physical one (depends on the day I guess). But the mental struggle can be as debilitating as the physical bathroom stuff. Thanks for the post!

Thanks for sharing these stories! It is so admirable to hear that you haven’t let Crohn’s define who you are. Here’s hoping for many more good days than bad days ahead!

So sorry that you and others are going through this. Also kind of horrified that anyone would suggest it’s your diet, or exercise regime, and that if you fixed those you would be cured. Geez.