Especially when eating out.
I can’t tell you how many times a waiter has given me weird looks or called me picky when I tell them to hold the vegetables. I’ve literally had a woman at Subway shake her head at me and say “teenagers.”
Most of the time I find this funny, although it does get insanely frustrating when just finding something to eat on a menu is incredibly difficult.
I’ve burst into tears at a restaurant from frustration when my meal came covered in things I can’t eat. In my effort not to bother anyone or seem picky I tried to scrape things off and just got more and more frustrated until I had to excuse myself from the table and bawl my eyes out in the bathroom. (Thankfully I have a great boyfriend who, while I was in the washroom, sent my dish back for me with better instructions on what I can’t eat.) You would think after almost 4 years of being on this diet that I would be used to it by now, but I’m not.
I have to be more and more careful lately because of the huge health food trend. I have a hard enough time finding something to eat at the cafeteria at school, and now things are in whole wheat without being labeled. The only thing I could find to eat was cheese pizza and when I started eating it I found out it was made of whole wheat crust. This could have caused an obstruction! I know most people don’t know what a low residue diet is, but everything should be labeled. Just because it’s not peanuts, gluten or dairy doesn’t mean that it isn’t potentially life-threatening to someone.
Check out episode 8 of the IBD Round Table Discussion! The show is all about diet and the psychology of eating.
For those of you who don’t know already, the IBD Round Table Discussion is a monthly discussion of a group of IBD activists, which includes our founder, Sarah Choueiry. It’s very informational and comforting to hear about different people’s experiences. If you happen to watch it live, you can interact with everyone on there and they might even answer your questions!
What would it take for the world to start taking Crohn’s disease and ulcerative colitis seriously?
This was my best friend growing up. She saw me through my awkward pre-teen and teenage years, taught me how to kiss boys, helped me shop for “cool clothes”, and so much more. In my world I was the skinny blonde haired, freckled faced dork from private school, and she was everything opposite of that. You couldn’t find a more mismatched pair, but we were BEST friends. It would be nice to see her today and laugh about old times and create new memories, but we can’t. We can’t because she passed away. My friend lost her life after surgery for her Crohn’s disease.
This week we lost another member of our community. I did not know her personally but she was a member of some of the online groups I belong to. I don’t know full details but Karrie Jacobs died three days ago because of a stricture. This isn’t the first person we have lost online and Jessica isn’t the only close friend I have lost in my life who had Crohn’s disease or ulceative colitis. A friend of mine from camp passed away from Lymphoma cancer. She was on remicade and though they can’t 100% confirm that it was the remicade that gave her the cancer, she was the first one messaging me on facebook when I was deciding whether or not to start it, warning me that she had Lymphoma. A year later another girl from camp passed away from Lymphoma cancer…
This doesn’t even touch on the number of people I know (myself included) who have come close to death but were lucky enough to escape. Friends who have gone septic, friends who have had life threatening infections, etc.
It’s true that most people who are diagnosed with Crohn’s disease or ulcerative colitis are not going to die because of it. But the truth is, some people do. While it was complications of surgery that caused my childhood best friend to pass away, she never would have had that surgery if she didn’t have Crohn’s disease. It was cancer that caused my beautiful friend and co-counselor to pass away, but in my mind I don’t believe she would have gotten that cancer had she not been taking a biologic.
My point. These diseases are serious. This isn’t just a little GI disorder. These diseases are causing major damage to our organs. Patients with IBD can experience bowel perforation, toxic megacolon, malnutrition and malabsorption, fistulas, abscesses, and so on. Not to mention the side-effects of some of the medications we have to take. I don’t write this blog to scare anyone and now that I think of it, it does come off pretty scary. But I really dislike when we are not faced with all the facts. With reality. This is real. We have these diseases and they are serious. It is the loss of patients with IBD that fuels my fire even more to educate the world about Crohn’s disease and ulcerative colitis, and to want to hug you patients tight and support you even more.
I don’t want you to be scared. Don’t be scared. I’m not scared.
Oooh, abscess are tricky, and I had a few of them. Basically it all depends on size and how they respond to antibiotics. If they’re under a certain size they’ll just give you antibiotics and send you home. (I was lucky enough to have this work) but if the abscess is big or it’s stubborn they often put in a drain. This is where they take a CT scan and locate exactly where the abscess is and puncture it with a needle and place a tube that stays out of your body for a few weeks while the fluid inside the abscess drains. It does leave you with a permanent fistula (a channel in this case from your skin to the abscess) which can cause complications.
Your doc will probably try antibiotics first though, so I hope that works for you!
I’ve been thinking about this a lot. Why do I always feel a strange sense of pride when I have a bruise related to my illness (IV pokes, blood tests, needles, etc.) and why do I feel the need to show it off?
I know I’m not the only one who feels this way, a lot of my friends with invisible illnesses brag about bruises or scars or any other physical indicator of their illness.
My theory is that it is the only tangible sign to the outside world that shows that we really are sick. I can’t even count the number of times someone has told me “but you don’t look sick”. And I know these people think that’s a compliment of sorts, but I think subconsciously, I feel like it belittles everything I’ve gone through. So when I have a bruise, or a scar, or something that I can show as proof that I’m sick, I show it off.. I even take pictures sometimes…
I think we should be proud of our bruises and scars. We should wear them as badges of honour, proof that we are strong. And if anyone ever has some awesome bruises or scars, send some pictures my way haha!
It’s that time of year again, my team Inflamed & Untamed is walking to find a cure for Crohn’s and Colitis.
Please donate to the cause!!!
a rant on the popular saying: “your health comes first!!!!”
I try to stay out of the politics, but this is something very, very near and dear to our hearts. It’s about time they start treating this disease with the respect it deserves.
Force change in the Social Security Disability standards and process for those suffering from Inflammatory Bowel Disease
If you want to sign, first create an account and then press “Sign This Petition”.
In anger this morning I immediately picked up my phone and knew exactly who I had to text about the new ad campaign by the CCFA. If there was one friend who would be on the same wavelength as I am, I knew it would be Marisa.
Marisa and I have been deeply affected by our lives with Crohn’s disease or ulcerative colitis. It has in every way shaped every single area of our lives. It in every way is living life with a traumatic chronic disease. This doesn’t mean that we don’t view ourselves as strong females and that we are just sitting back and feeling sorry for ourselves. But we cannot deny that our relationships, self-esteem, family, money, careers, choices, mental battles, etc. have not been governed by IBD. How could they not? Because of the suffering we have gone through, we WANT people to understand how serious this disease is. It’s important to us to feel validated and it’s important that REAL awareness exists.
To me, I think these ads are a step backward. They show different people in a bathroom stall with a silly little saying about IBD. What this does is fuels the already huge rumor that IBD and IBS are the same things, or at least very similar. It makes it seem yet again that IBD is just like a tummy ache, food poisoning or the flu. That we simply spend more time in the bathroom than most and probably have to watch what we eat. *anger face*
Is any awareness better than no awareness? I have seen so many comments recently that “any awareness is better than no awareness” or something similar. I disagree. Hear me out on this - I would rather have no awareness than awareness that leads me down a path of struggling to make people understand that this disease isn’t the same thing as IBS. It’s not the same as a tummy ache. This just feeds those rumors and makes people who don’t know or understand what Crohn’s disease or ulcerative colitis is think that all we do is spend time in the bathroom. I think this is wrong awareness and leads us backward rather than forward. And to me, the bathroom stall thing doesn’t relate to my life at all. I don’t spend any more time in the bathroom now than a healthy person does. What I do deal with is a motility disorder. I deal with life without a large intestine. I deal with intestinal blockages, bleeding ulcers, damaging inflammation, strictures, infusions of medications, malabsorption, rapid weight loss, terrible pain, arthritis, etc.
Why do people take cancer seriously? Because they do a good job of showing the realities. Let’s get REAL. Why can’t we show ads with patients who have Crohn’s disease or ulcerative colitis hooked up to an IV getting an infusion? Giving themselves a shot? Holding the many pills they have to swallow in a days time? Going in to have all or portions of their bowels removed? With an NG tube down their nose and into their stomachs? Emaciated with weight loss? Puffed up on prednisone? With an ostomy bag? With a central line in? “Eating” intravenous food? What about the many other areas of the body that Crohn’s disease and ulcerative colitis affect? Show pictures of mouth ulcers or what happens to the upper GI system. The often crippling arthritis that comes along with it for so many of us. There is just so much more that needs to be said. Instead of a picture of a different character each time in a bathroom stall let’s have a different picture each time of the different realities of life with Crohn’s disease or ulcerative colitis. Then people will know, then people will take it seriously, and then people will want to donate their time and money to help support us.
Those things would make people think twice about what these diseases actually are. That would raise some real awareness. That would make people understand that this is a serious autoimmune disease that is often debilitating. It’s not just a bride who is sitting in the bathroom stall because she has a case of the shits. That bride is in there because she has damaging inflammation present in her bowel that is probably accompanied by bleeding ulcers. She’s probably in excruciating pain and could be filling that toilet bowl up with blood. She could be too tired to walk down the aisle because of months of bleeding causing her to become anemic and weak. Perhaps her hair is falling out from malnutrition and medication so she doesn’t look her best and feels unconfident on her wedding day. Maybe she was worried about how she would look in her dress because steroids have caused her to gain weight all year. She could be anxious to go on her honeymoon because she fears being away from her doctors and support system while she is sick. Maybe she has an ostomy and is embarrassed about having sex on her wedding night? THAT is the real story.
I know that a lot of you disagree with my opinion and I get that. I love the CCFA, I really do. I get that for a lot of you this ad is something you feel is a step in the right direction. I can see the marketing behind it and all that jazz, but to me I just do not like it. I went to my friends who I know have suffered as much as I have with this disease and asked them their opinion on it too and they feel the same way as I do. I’ve been talking to Marisa and Jaime all morning about this and what we wish would have been different. I wonder how many others out there who have gone through so much are angered that their disease has been trivialized to a bathroom stall. The bathroom stall doesn’t even depict all of our stories, it leaves many of us out. So in a way I get where you all come from but in so many ways I do not.
Find out what Marisa feels about it here: http://keepingthingsinsideisbadformyhealth.wordpress.com/
Here’s to hospital visits. Here’s to doctors that don’t listen. Here’s to doctors in general. Here’s to nurses. Here’s to medications. Here’s to the pain. Here’s to not sleeping. Here’s to side effects. Here’s to being in the bathroom more than not. Here’s to eating nothing. Here’s to pills. Here’s to injections. Here’s to infusions. Here’s to transfusions. Here’s to blood work. Here’s to needles. Here’s to our bed. Here’s to our family. Here’s to getting up each day and fighting again. Here’s to say, “No, I won’t be pushed around by this.”
But most importantly, here’s to us.
Here’s the diseased, young and old, tired and awake, in remission or sick. Here’s to us.
[Image: 6-piece blue colored background with a Siamese cat.Text reads: “Meet someone with same condition as you. New best friend.”]
my friendship with stew
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