An Open Letter: From an IBD Sufferer to IBS Sufferers

Dear IBS Sufferers,

I am sure most of you reading this don’t know very much about me and for good reason! I don’t write very much on this website for a couple of reasons. The first being, I don’t feel as educated about irritable bowel syndrome (IBS) as I do inflammatory bowel disease (IBD) and know how important it is to hear from someone who has been in your shoes and is living your life. Granted, none of us go through exactly the same things but there is obviously a tremendous amount of overlap. The second is that not only do I not suffer from IBS, but I suffer from IBD. I know there is a lot of misunderstandings, confusion and comparison between those two. So, I guess, I felt like an outsider in a way because I never wanted to invade your space. I know we all need a safe place to share, vent, and see we are not alone in our struggles. I was honestly afraid my presence on this site might impede on that.

I read a lot of the articles from the amazing IBS advocates who write here and they blow me away. So many of your comments on the associated Facebook support page also shock me because I get a much more in depth perspective of how living with irritable bowel syndrome can impact a person. I have spoke to a couple of the wonderful contributors of this site privately and have learned an enormous amount. I also realize how much we all click and have in common. Our diagnosis might not be the same and consequently, some of the things we each have to endure may be different but at the end of the day, the similarities are enormous.

I found a post on Instagram about eight months ago from a person who suffers from IBS saying that they wish they had Crohn’s disease or ulcerative colitis. The post went on to say that the reason for this was because at least people with IBD have a community. There are more medications out there to possibly help than with IBS. Doctors take IBD patients more seriously than those with IBS. The public and even loved ones also think because it is “just IBS” that it isn’t a big deal.

This has stuck with me for almost a year.

A disorder that doesn't show up

In addition to inflammatory bowel disease, I suffer from chronic migraines and fibromyalgia. I know a lot of people who suffer from irritable bowel syndrome also have to endure migraines and fibromyalgia as well.

My saving grace in terms of doctors taking my migraines and fibro pain seriously has been that I have a formal diagnosis of IBD, have undergone a ton of surgeries, and live with a permanent ostomy. I believe it is for that reason that I am believed a bit more than your average person.

This made me think about people like most of you reading this who suffer from a disorder that doesn’t show up in blood work or imaging tests. My migraines and fibromyalgia pain have impeded on my life beyond anything I could have imagined. I have suffered from chronic migraines for fifteen years and was diagnosed with fibromyalgia a couple of years ago. I also feel like most people believe migraines are just headaches that can go away with Tylenol, and fibromyalgia pain may suck but if you just got your stress under control and ate a better diet, all would be okay.

I see a pain management doctor who is able to help me because of all I have been through with my IBD. If I was just someone who suffered from migraines and fibromyalgia, I know I would be treated differently.

Never forget how strong you are

I can’t imagine living with a condition, or multiple conditions, that impeded on my life so much, but all medical tests point to me being fine. I can’t imagine living with not only an invisible illness, but an invisible illness where there is no real way to confirm a diagnosis. I can’t imagine the heartache and mental anguish that most of you must feel living with IBS. I do have a taste of it because of my other chronic illnesses but like I said previously, I believe those are taken more seriously because I do have an underlying condition that does show up on exams and is known to be severe.

I wanted to share this with you because while I may not understand exactly how it is to live with irritable bowel syndrome, I do feel like I am getting more glimpses of it each day from my own experiences coupled with reading the experiences of others. You all are so damn strong! I sincerely mean that. Please never forget or get down on yourself if you have emotional reactions to living with something that is so misunderstood and not looked at as a “serious” condition.

Love,
Marisa