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Difficult Aspects of Life with UC

Living with an invisible, chronic disease like ulcerative colitis is no picnic. I am sure those of you reading this who suffer from this form of inflammatory bowel disease (IBD) can definitely attest to that fact. Prior to my diagnosis, my family and I never heard of UC before. When my parents heard the “colitis” part of the diagnosis, I think it was assumed that it was a disease that primarily focused on the bathroom. And while that is the case to an extent, it goes beyond that.

Ulcerative colitis (UC) is an autoimmune disease. At this point, there is no known cause or cure for the disease.

While there are a lot of difficult aspects of living with UC, I wanted to highlight some of the major ones. This list is a combination of what I have found to be true in my own personal journey plus what I have heard from some of our wonderful community members.

Unpredictability and making plans with UC

With a disease like ulcerative colitis, it can be difficult to make plans. It can also be hard to set goals and have dreams in general. For me personally, anytime I would get excited about something or work hard toward a specific goal and my health would get in the way, I would just become more frustrated. As this continued to happen, it became easier for me to not make plans or set goals because I didn’t want to face the disappointment. The unpredictable nature of UC is one that can wreak havoc on the emotional wellbeing of not only the patient but his/her loved ones as well.

Misconceptions/preconceived notions of ulcerative colitis

Many people don’t understand what ulcerative colitis is. They don’t realize it is actually a serious illness. Some compare it to things like food poisoning, or even IBS (which I know can wreak havoc on someone’s life but is an entirely different disease.) There are always those who feel the need to comment on what you are or are not eating. A lot of us hear about how if we just took this supplement or got out more or did yoga we would be cured. The lack of awareness and understanding surrounding inflammatory bowel disease, including ulcerative colitis, can make it hard to be honest with those people in your life. That can lead to isolating or feeling the need to be fake all of the time. Wearing a mask, as many of you know, can be exhausting when we just want those around us to know the real us.

Pain from ulcerative colitis

Ulcerative colitis can come with a lot of pain. And while a lot of time we know where the pain is coming from, sometimes we aren’t sure. There is also very little we can do to help manage our pain which leads to many other physical and mental health issues. This includes but isn’t limited to: lack of sleep, anxiety, depression, unable to work, avoidance of social activities and hopelessness.

Dependence on others

Depending on the severity of a person’s ulcerative colitis, it can make it difficult to work and/or contribute financially. This can cause a person to feel less confident and like their self worth is decreasing. Additionally, when ill, we need people to help us with basic things such as bathing, driving us to appointments, making us food, cleaning, etc. The inability to do these things on our own can be disastrous for us mentally. Yet, we have no choice and are thankful to those willing to help us.

Post traumatic stress disorder

Oftentimes, an ulcerative colitis patient has to be poked and prodded many, many times in their life. The feeling like you are losing your dignity or are being treated as a specimen (not like a human being) can make you feel traumatized. It can dehumanize you, even though I know it is not medical professionals intent to do so. In addition, the constant and repeated acts of feeling violated can cause a person to develop post-traumatic stress disorder (PTSD). While many UC patients suffer from this but don’t know it, the symptoms can definitely impact a person’s life.

Disordered eating caused by UC

There are many difficult symptoms of ulcerative colitis that aren’t included in this article. I wanted to write about some of the lesser-known or thought about topics in case anyone reading this may be feeling alone. The other one I wanted to briefly mention was the mental anguish UC can have on your eating habits. It is not uncommon for disordered eating to develop as a result of living with ulcerative colitis. I have written many articles about this topic if you are interested.

What about you? What are some of the most difficult symptoms of UC for you? Has it changed with time? Please share in the comment section below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Amanda Osowski moderator
    3 months ago

    Such a good post, touching on several cornerstones that need to be talked about more often. Thanks for sharing, M!

    Warmly,
    Amanda (team member)

  • crystal.harper moderator
    3 months ago

    The more these issues are talked about, even just within the community, the less they are stigmatized and thought of as taboo so I applaud you for being so open! A lot of these stem back to mental health and I believe any chronic illness takes such a toll on people emotionally. It’s a conversation that I wish was automatically talked about with a doctor upon diagnosis.

    Thanks for sharing!!

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