Crohn’s Disease and Ulcerative Colitis are both forms of Inflammatory Bowel Disease (IBD), an autoimmune disease that causes the immune system to attack the digestive system. Despite being an increasingly common disease in Canada and many parts of the world, IBD is rarely discussed and generally misunderstood. As a parent to a child with IBD and a member of various online support groups for families like ours, I am often faced with comments that show a general ignorance about the disease. There was a time that I didn’t understand IBD either and I knew people living with it. Once our son was diagnosed and we learned more about it, I wished I had really understood in the first place. Here are some common statements made to people with IBD (and their parents) that you should never say.
1. My brother/sister/father/neighbour has that and it isn’t that bad.
You can not look at someone and tell if they are suffering with IBD. Unless there were honest discussions about the disease, you can not determine the severity of someone else’s IBD. However, they could be doing just fine. That’s the thing with IBD; it is different for everyone. While one person may be able to manage with oral medications, another will need injections or IV medications. One person will need surgery and recover well while another will have surgery after surgery without seeing very much improvement. It varies from person to person.
2. You just need to stop eating wheat/dairy/sugar and it will go away.
There is some validity to adjusting your diet with you have IBD, but it is important to understand the difference between a CAUSE and a TRIGGER. Nothing that you eat causes IBD. However, there are some foods that irritate the digestive system particularly during a flare and avoiding those foods can help relieve some symptoms. Just like all people, there are some people who have IBD that are also gluten intolerant or lactose intolerant, etc and those people have found some relief (but not cured) by avoiding those food groups.
3. I completely understand. I have IBS.
I get it. IBD and IBS sound similar and they both involve bathroom habits, so they must be the same. No, they are not. They are two very different conditions.
IBD = Inflammatory Bowel Disease. IBD is a chronic, lifelong and debilitating condition that requires lifelong medical treatment and possibly surgery. It is incurable and in some cases it is life threatening. Inflammatory Bowel Disease can be accompanied by a myriad of problems including fatigue, joint pain, and anemia.
IBS = Irritable Bowel Syndrome (another acronym IBS-D = Irritable Bowel Syndrome with Diarrhea). It is an uncomfortable condition caused by something functionally wrong in the digestive system. It is a challenging disorder but it is not medication dependent, debilitating, or life threatening.
4. What do you mean you need the washroom, you just went.
On a bad day, a person with IBD may need to urgently get to a washroom a dozen or more times a day. On a good day it may only be once or twice, but the urgency is the real challenge. When a washroom is needed, it is needed immediately and there is no time for discussion about it.
5. You look fine to me.
I am sure that every person with IBD has wished that they could show what is happening on the inside when someone makes this statement, but there is no way to display your inflamed and bleeding digestive system. You can’t see fatigue or joint pain either. In the middle of a severe flare you may see that someone has lost a lot of weight, or you may see weight gain from the steroids used to treat the flare, or you may see no changes in weight at all.
6. Aren’t you afraid of the side effects from those medications?
The medications used to treat IBD range from steroids to biologics and they come with side effects like weight gain, behaviour changes, organ damage and even some forms of cancer. Of course I am afraid of the side effects as a parent, and I’m sure anyone taking these meds are also concerned about the side effects. However, I am more afraid of the reality of IBD. Untreated flares increase the chances of cancer at a much higher likelihood than that from the medications. These medications have given life back to many people.
7. My friend/cousin/mother cured her IBD with oils/shakes/vitamins.
There is no cure for IBD. Remission can be achieved (usually through medication) but that doesn’t even mean being symptom free for everyone. Since the digestive system of a person with IBD is diseased, it is important to consult a doctor before trying any alternative treatments. One person’s cleanse can be the beginning of a flare that leads to surgery for someone with IBD.
8. Why don’t you get the surgery to cure Ulcerative Colitis?
There is a misconception that removing the large intestine will “cure” Ulcerative Colitis since this is the only place where the disease presents itself (unlike Crohn’s where the entire digestive system can be affected). This is a surgical route that has given many UC patients their lives back but it doesn’t always return them to perfect health. Joint pain and fatigue can still be a problem. In this surgery a colostomy bag is placed and can possibly be removed through a couple more surgeries over the years. Obviously a colostomy is not the end of the world and people can and do live ordinary and healthy lives with them, but it is a consideration. Another possibility is the appearance of the disease in the small bowel, leading to a Crohn’s diagnosis. For these reasons (and the obvious risk that comes with surgery), this surgery is generally reserved for patients who are not responding to other treatments.
9. Maybe if you got out and exercised every day you wouldn’t be so tired.
Exercising every day may be healthy but it doesn’t reduce the fatigue caused by disease. Many people with IBD push through pain and fatigue every day and they need to choose what is necessary and what is tolerable. No one else can determine what that is for them.
10. Have you tried meditation/prayer/relaxation therapy to reduce stress?
While stress can be a trigger for some people with IBD, it is not the cause. We find our own ways to manage stress.
And things you should never say to parents of kids with Inflammatory Bowel Disease…
1. Your child is so thin. Doesn’t he/she eat?
Parents of kids with IBD will go to great lengths to get their kids to eat. We cook special meals, make protein shakes and buy Ensure by the case. Some kids end up needing feeding tubes. Trust me, there is nothing you can say about my child’s weight that I haven’t considered myself.
2. At least it’s not cancer.
Of course I don’t want my child to have cancer, but I don’t want my child to have IBD either (and equally as much). My son gets IV biologics every month in the same ward as the kids who are getting chemo. In fact, his medication (Infliximab) is considered a chemotherapy drug. He will continue to get this medication for the rest of his life, or until it doesn’t work for him anymore. Also, IBD increases the risk for cancer.
3. Did you bottle feed/take medications during pregnancy?
There is not a reason to try and place blame on the parents. Trust me, they are doing this to themselves enough.
4. When will he/she grow out of it?
Never. Inflammatory Bowel Disease is a lifelong disease.
5. You shouldn’t let your kid miss so much school.
I would prefer to send him to school where he can hang out with his friends and learn, but if he can’t leave the washroom that isn’t going to happen. If his fatigue is so great that he can’t get himself down the stairs, he won’t be getting through gym class. He also has treatments and appointments, and sometimes we just feel like our kids have had to deal with so much already, they deserve a break if they ask for one.
6. I could never put my child on a liquid diet. They need to eat!
If your child was diabetic, would you allow him to binge on candy? It could be just as damaging. There are times when a liquid diet is the only option to heal the digestive system. There are no parents out there who actually want to deny food to their children. It is medically necessary.
7. Why do you get so down?
Having a child with a serious illness is hard on the entire family. Spouses deal with things differently from one another. Siblings struggle with the change in attention from their parents and their own worries about their sibling. More distant family members don’t necessarily understand what is happening and can inadvertently add to the stress. PTSD can be brought on by dealing with a child’s illness, and I believe that to be true for Inflammatory Bowel Disease. Educating yourself and others about IBD is the best support that you can be to a parent dealing with Inflammatory Bowel Disease.
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