So Much Variability in IBD - Part 1

We often talk about how inflammatory bowel disease is very individual and a spectrum disease, to an extent. Everyone reacts to medications and other treatment options differently. People’s personal views impact the way they go about managing their disease. A support system, or lack thereof, can play a huge role. Having the right doctor is also a must for people suffering from Crohn’s Disease or ulcerative colitis.

Many IBDers talk about how complicated their life and body are because of their diagnosis and I could not agree more. It is so difficult for a physician to understand the best way to treat you unless they are highly trained in inflammatory bowel disease and/or they have been on the journey with you for a while. Since there are a lot of doctors out there who are simply gastroenterologists and don’t see many IBD patients, this can be frustrating for a lot of people. When we aren’t feeling well, we of course want help and we want the person caring for us to understand all of the past trial and errors, how our individual body works, and respect the way we feel about certain things.

I see a lot of people asking questions or posting comments on support groups (which is awesome) but I often wonder if those people understand that what works for one doesn’t work for all. It takes a while to understand that you really need to know someone’s history before asking certain questions like “what is it like to have an ostomy?” or “how is it living without a colon?” or “how did such and such medication work for you?”

Below are some things I wanted to highlight to show why every IBD patient should be looked at differently and why it is so frustrating for not only patients and caregivers, but for physicians as well, to help us.

Removal of Large Intestine

When a person has a colectomy, the effect this has on him/her is very individual. Meaning, not everyone who has their colon/large intestine removed will feel the same way after the operation, or even months and years down the line. There is so much at play with inflammatory bowel disease and the outcome of this type of surgery is difficult to predict.

Some things to consider with this particular surgery:

1. Did the patient have a total colectomy (meaning, the entire colon/large intestine has been removed) or were parts left in?
2. Does the patient have an ostomy following the surgery? If so, is it a colostomy or ileostomy? And if the patient has one of these types of ostomies, is it permanent or are there plans for a possible reversal?
3. Has the patient’s rectum and anus been left in? If so, why and will there be issues in that area following the surgery?
4. How was the patient’s overall health going into the surgery and how have they been bouncing back?
5. Have there been any postoperative complications? If so, what did the patient have to endure in order to get back on the mend?
6. Did the patient have a J-pouch, a pull-through, a kock pouch/BCIR (continent ileostomy?)
7. Does the patient have Crohn’s Disease or ulcerative colitis? Has that diagnosis been confirmed even after the operation?
8. Is the patient blessed with a good support system or will he/she be on his/her own following discharge? This can impact nutrition intake, the amount of physical labor done, among other things.
9. Is the patient in an okay mental place following the operation? Does he/she show signs of depression/anxiety or does the patient seem to be hanging in there alright?
10. Was the surgery done laparoscopically or was it an open procedure?

These are just ten things that come to mind that must be taken into account when a physician or medical professional analyzes an IBD patient who had this operation.

Stay tuned for part 2 of this article where I'll discuss small bowel resection, ostomy surgery and more!