The Unfortunate Reality of My IBD

As a young woman, it can be hard for me to accept the reality of living with IBD.

While I’m grateful for how far I’ve come and how good my health is now, it’s hard to live and be positive when I am constantly dealing with this huge burden. Because I had my colon removed, people love to throw around the word “cured.” That’s an argument for another day. My doctor said it best at my last visit, “you have a very severe form of Ulcerative Colitis, most patients don’t have your symptoms, very few of mine do.”

It’s hard to get people to see past surgery.

Although I had my colon removed, I still have problems. The reality of my IBD is this: I will likely always have symptoms. Until an actual cure comes along, I will likely always be on some form of medication. Is this a reality that I like? Absolutely not. Is this one I wish I didn’t have to face? Yes. I wish the reality of my IBD were as simple as the outside world views it: eat a carrot, have a cure. I wish diet were the problem. I wish I could pray away my fistula. I wish my abscess was “all in my head.”

At the Advances in IBD conference back in 2017, Dr. Rubin (a digestive disease expert) explained how IBD has no cure. How having a colectomy is a treatment option, but patients still have IBD and may still experience complications. But for some reason people don’t see this. I’m forced to continuously explain why I am not cured. How I am still autoimmune and the removal of my colon doesn’t correct that  or a lot of other issues that occur in my digestive tract.

I wish surgery was the magical be-all, end-all that people think it is. For some patients it can help tremendously, but unfortunately for me that’s just not the reality of my IBD. I try to understand that, but somewhere behind my fake smiles, endoscopies and empty Calmoseptine tubes, lies a lot of build up frustration. Frustration with having to explain my condition, frustration with having to explain why I cannot take a certain medication, frustration with new prescriptions when I was initially promised having surgery would take care of most, if not all, of my issues.

The reality is: every case of Inflammatory Bowel Disease is different and should be treated as such.

Currently, there is no cure for IBD and patients should not be led to believe otherwise. The reality is patients should not have to explain what  IBD is to doctors, but unfortunately for us, at times we have to. The reality is that although medications, surgeries and other treatment options are improving, the only way to know (for sure) what works for you is by trial and error. The unfortunate reality is hard for me to accept because I want more. I want more for myself and for every patient out there living with IBD.

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.

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