Crohn’s Disease: ‘Beyond the Bathroom’ Series, Part One

Crohn’s Disease: ‘Beyond the Bathroom’ Series, Part One

It Could Be Worse - A Column By Mary Horsley
Editor’s note: This is the first in a series of columns by Mary Horsley about IBD-related symptoms that are “Beyond the Bathroom.”

Crohn's Disease Symptoms - 'Beyond the Bathroom' Series
Crohn’s Disease Symptoms – ‘Beyond the Bathroom’ Series – Joint pains

Bowel diseases like Crohn’s and ulcerative colitis often are just assumed as being “bathroom diseases,” or all about the poop. Usually when IBD patients mention their diagnosis, the first assumption is that we suffer only when in the restroom. It is commonly believed that our problems come only as bathroom-related issues, and that once we “go” we are okay.

In my experience, a lot of times “outsiders” think the only issues I suffer are in the restroom. This cannot be further from the truth, as many IBD patients can tell you, it is SO MUCH MORE than just a bathroom illness.

With any diagnosis, there are a number of ways it will affect your body. And with any diagnosis, each person will suffer symptoms individually. Some will experience more problems than others, and just because one person has a symptom, does not mean all IBD warriors suffer with the same.

With an autoimmune disease like Crohn’s, problems come in a lot of different ways. Some are manageable, others still questionable, but none are 100% curable considering there is no known cure for Crohn’s or colitis.

Having suffered myself for more than three years now, I have quickly learned there are quite a few symptoms and issues that come outside of the restroom.

For my third series with IBD News Today, the theme and focus will be on Crohn’s disease symptoms that are “Beyond the Bathroom.” I have suffered a number of these problems, and they are not as widely known as the bathroom symptoms.

In this series I’ll discuss the other problems those with Crohn’s or colitis may face. Some suffer ailments such as depression, fatigue, anemia, anxiety and PTSD. Some suffer from insomnia, uncontrollable joint pain, weight gain, weight loss, nausea, vomiting and skin issues.

Some of us carry Depends and baby wipes, and others wear face masks and feeding tubes. The symptoms are truly endless, and no two warriors are exactly alike, which makes these diseases so hard to diagnose, manage and cure.

The list of potential problems that IBD warriors face goes on and on. This puts so many of us in a state of isolation and fear. We fear to go anywhere unfamiliar, or being gone too long from home (our bathrooms), and we NEED to know where every restroom may be located, just in case.

It Could Be Worse - A Column By Mary Horsley
It Could Be Worse – A Column By Mary Horsley – Insomnia

My hands ache. My skin has never looked worse. Although I can’t sleep, I’m overwhelmingly fatigued and exhausted. I worry every time I leave the house, stressed I’ll have an accident in public. I eat and I vomit. I don’t eat and I vomit bile instead. I have blood loss in the restroom, and many IBD patients suffer anemia.

Getting a diagnosis can be a lifesaver, but the realization of what the disease is, and how it affects you every day can lead to depression. You can gain weight with steroids, but you can lose weight for lack of eating (less food means less pain and bathroom visits). We also can suffer malnutrition, dehydration, etc.

There may be many problems your fellow Crohn’s and colitis patients face, and this series will discuss a plethora of these awful symptoms that tend to happen “Beyond the Bathroom.”

My experiences may be different than yours, but you never can be too prepared for what could happen with Crohn’s or Ulcerative Colitis, because for me, It Could Be Worse.

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Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.

2 comments

  1. Julie E. says:

    Absolutely can relate. I’ve had Crohn’s disease for about 11 years. I’ve experienced the skin issue, chronic joint pain, major fatigue, depression and anxiety, memory issues, weight going up and down (need several sizes of clothes) I do sleep, but it’s not a very restful sleep (I use some sleep aids to help) I am lucky that I have a great Doctor, and he’s really helped me keep things from getting much worse. Unfortunately, I seem to have side effects from every damn drug I try. I can’t even take the prednisone much anymore, only very low doses for a few days. My skin reacts really badly to almost every drug I take. I now have Rosacea and it aggravates my psoriasis too. It definitely is a day to day struggle

    • Mary Horsley says:

      I am so sorry that you can relate and you know this struggle. This disease truly takes a toll on its victims, both mind and body, and everything it can get its grasp on. So crappy. Pun intended. I hope for better days for the both of us and the rest of the Crohnies! *hugs* – Mary

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