Number 1: "You don't look sick!"
This one can be really offensive! I know for me personally, I try really hard to look 'normal' when I leave the house. I'm pretty sureI'm not the only one who does that either. After losing so much weight most Crohn's patients have really sunk in eye and/or dark circles under their eyes. Because of the blood loss anemia is a huge possibility for Crohnies as well which means most of us are very pale. Crohn's can't really be visualized from the outside but it'd not easy & it's definitely not fun, so the next time someone tells you they have Crohn's please don't tell them that they don't look sick! Chances are that day they are feeling it & you just can't see how they really feel on the inside.
Number 2: "I totally know what you are going through!"
Please please pleas NEVER say this! The stomach flu is nothing like this disease! Trust me, the stomach flu is like a walk in the park compared to Crohn's. Crohn's is like having the stomach flu & the actual flu at the same time, all the time without a break. Until you have actually lived with Crohn's or Ulcerative Colitis you really don't know what it is like.
Number 3: "I have IBS so I understand how you feel."
Okay once again, please don't say this to someone with IBD. IBS stands for Irritable Bowl Syndrome which is totally different from IBD. According to the Mayo Clinic Irritable Bowl Syndrome "is a common disorder that affects the large intestine. Irritable Bowl Syndrome commonly causes cramping, abdominal pain, bloating, gas, diarrhea and constipation." http://www.mayoclinic.org/diseases-conditions/irritable-bowel-syndrome/basics/definition/con-20024578
Unlike Crohn's Disease or Ulcerative Colitis, IBS DOES NOT permanently alter the tissue that lines the intestines. I understand that IBS sucks! It has to with symptoms like the ones it has, but suffers of IBS don't have to worry about obstructions or losing parts or all of their colon like IBD patients do. So if you suffer from IBS or even if you don't suffer form it, sympathizing is great but please don't tell us that you totally understand or know what we go through on a daily basis.
Number 4: "Oh my gosh! You've lost some weight! That's so awesome!"
Uhm...no! Dropping weight is typically a normal thing for a Crohnie, when in a flare loss of appetite is very common as well as dehydration. What happens when a person looses their appetite for days on end? They tend to drastically lose weight when they really don't need to. I can tell you guys from personal experience that losing weight as fast as you do with Crohn's is a really scary experience. Although some people strive to be as skinny as a twig, some of us really aren't trying to shed the pounds! Most times when people are losing weight from Crohn's the weight loss isn't an impressive thing either. It is drastic & can sometimes look abnormal. It's incredibly hard to put weight back on as well.
Number 5: "An apple a day keeps the doctor away!"
That's not necessarily true when you have IBD. Foods like apples can cause obstructions in the intestines that may lead to major problems. A lot of times when someone suffers from an obstruction doctors will have to go in & remove part of the small or large intestine if not the whole colon all together. You're probably thinking, 'But don't you kind of have to have a colon...?' Well yes for obvious reasons, but when the colon or parts of the colon are removed doctors are able to bring whatever is left to the abdominal region. This is known as an ostomy. So if this phrase ever pops into your head when a Crohnie is talking to you about their died you might change it a little to say "an apple a day bring the ostomy your way." There are ways that you can prepare an apple so that an Crohn's patient can eat it though. The apple would have to be cored as well as completely pealed. The smaller the apple chunks are the better as well. I find the process of eating an apple incredibly annoying. My suggestion is to just stick to apple sauce!
Number 6: "Can't you just wait until the next exit?"
This one annoys me to death! If I say I have to use the restroom I really mean that there is no way that I can wait any longer! What people don't seem to understand about this disease is that those who have it typically have no control over when they have to go or what times they have to go. In this case no I can not wait until the next exit! Please keep this in mind if you are ever taking a road trip with someone who has IBD!!
Number 7: "You're looking a little pudgy..."
I personally have gotten this comment a lot since I was on Prednisone. This one is almost as bad as number 4. It is so hard to manage your weight when you have IBD because you are either really sick & never hungry so you drop weight like crazy or you are on a corticosteroid & all you want to do is eat everything in site. Most times it is really good for an IBD patient to gain weight because they are typically so underweight it is almost dangerous, but it's not all of the food that they are eating that is causing the 'pudginess' it;s typically the water retention that goes along with the medications that they are on!
This is just part one guys, I'll post part 2 sometime soon!! Seriously though, I hope that this may encourage you to think about what you say before you say it not only to IBD patients but also to everyone around you! I mean come on would you tell someone that they were getting a little chubby & that they might want to cut back a little bit...? I wouldn't! That would be little rude!!
~Kaylee <3