Here's a little snapshot into why it seems like no one can figure it out, or why we, as patients, often feel like it is all trial and error:
Irritable Bowel Syndrome (IBS) & Irritable Bowel Syndrome with Diarrhea (IBS-D) are not the same as Inflammatory Bowel Disease (IBD; Crohn's, Ulcerative Colitis, etc...).
Being gassy and/or bloated is not the same as IBS.
Some people with IBD go into Remission and have few to no symptoms at all.
Some people with IBS or IBS-D have symptoms so awful that they are continually watched and tested for IBD in case of a misdiagnosis.
Some with IBD require surgical intervention.
Some people with IBD or IBS cannot eat carbs, dairy, or fresh fruits and vegetables. Some people with IBD or IBS thrive on eating carbs and dairy.
Some people with IBD respond best to immunosuppressant therapy. Some respond best to antibiotic therapy. Some respond best to only dietary changes.
Some people with IBD can have BOTH Crohn's Disease AND Ulcerative Colitis, which seem the same categorically, but are quite different physiologically, and many have to treat them as two different illnesses with two (or more) different treatment protocols.
Some people with Crohn's Disease experience illness anywhere from their mouth to the other end. Some patients experience polyps, others do not. Some patients experience fistulae, some do not.
Some patients with IBD can be put on a heavy-duty medication temporarily to induce Remission, then be removed off of that medication and only deal with the occasional flare-up. Some cannot manage to be removed completely off of medication for years or ever.
Some IBD patients may require a temporary ostomy, a permanent ostomy, or an internal pouch. Some patients have an internal pouch fail and have to resort to a permanent ostomy.
Some IBD patients experience blood in their stool on a regular basis, some rarely do.
Some IBS patients suffer from incessant intestinal cramping and gut motility changes. Some IBD patients rarely experience intestinal cramping. Yet the damage in the intestines can be seen with IBD, though not always.
IBD is considered worse because there is physical damage to the organs. Symptoms are generally worse in IBD, but not always.
To recap:
Irritable Bowel Syndrome is NOT the same as Inflammatory Bowel Disease, but symptoms can be similar. Gas/bloating/episodes of diarrhea are not the same as Irritable Bowel Syndrome, but the symptoms can be similar.
No two patients have the same experience even if they have the exact same diagnosis.
So the next time you hear a friend speaking about their diagnosis (think beyond the intestinal diseases), think twice before uttering the phrase 'oh I know exactly how you feel', especially if it is simply an acquaintance or social media friend.
No one has the exact same experiences in life. That is why we call it "empathy" or "relating" to another's experiences. We all have very subjective versions of similar experiences.
The best way to support each other is to do just that. Express concern, express a sense of empathy, but attempt to refrain from relaying an experience you believe was 'exactly the same'. Comparisons make people feel less seen.
What may seem like an effort to relate to another person can actually make the other feel less understood, paradoxically.
Our best method of offering support is to actively listen, curiously ask questions, and (if appropriate) say "I believe you".
Many people with chronic illness are scrutinized 100% of the time because everyone has their own version of what a specific illness might look like. If our bodies do not behave like a textbook says it should, we are often questioned and doubted by not only the general public, but my medical professionals in charge of our care.
Let's not pit people against one another because of differing experiences, and simply understand that our doctors are doing everything they can to find the most suitable individual treatment, and that every single person has a different experience.
💜❤
*P.S. I mention IBD more only because it is the diagnosis I have.
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