Hey IBDers, anyone else notice that they’re forgetting words? I know what I’m trying to say but the word is just out of reach and it started around the time I went on Humira.
Welp! It’s that time of year again. It’s holiday season! The time where you spend quality time with your family, eat loads of food, open gifts, be thankful, and carry out beliefs and traditions passed on from generations. Sounds like a great time doesn’t it? It can be, but with IBD, it can be a little difficult. Between needing a custom menu, being bombarded with questions, or maybe an unexpected hospital stay. I did a thanksgiving post a year or so ago that you can checkout HEREto sort of pair with this one. I wanted to do something a little different on this post and i hope it helps you all out. Here are a few tips on how to get through this fun, yet stressful time.
We all have that one relative that means well but asks A TON of questions. Sometimes this is just a genuine search for knowledge, other times, it’s that person being nosey. So what do you do? You don’t want to be rude, especially if they’re older, so what you can do is make it a learning experience. You can tell them the basics of what’s going on with you and even direct them to some place where they can read up on it. If they seem to be a little pushy, just be honest and tell them how you feel. If you don’t want to talk about it, DON’T and tell them that. A lot of the stuff we deal with is pretty personal and it’s ok to not go into it. If they are still persistent after you’ve told them that you don’t want to talk about it, you can either ignore them, or tell them something pretty graphic about the illness to see if that shuts them up. Ignoring them may be the best bet tho lol.
Not Feeling Well
Sometimes you may start to feel bad in the midst of all the fun and if you’re not at home, this can be a bit nerve racking. If you’re not going to be home, make sure you’re prepared. Have your bathroom survival kit that we talked about a few posts back, with you. Also make sure you pack any medicines you may need and a backup set of clothes to keep in the car. It may sound like a lot, but it’s better to be prepared and not need any of this stuff, than to need it and not be prepared. If you came with your parents or a boyfriend or friend, etc, let them know that you’re not feeling too well, so that they’re aware in case anything happens or if you need to go home. This may bring up some questions from other relatives, but you don’t have to answer them. If you do decide to answer, you don’t have to go into detail if you don’t want to. You can simply say “I don’t feel well”. If you don’t have a really supportive family, just do what you need to do and take care of yourself.
It’s time to eat! Sometimes the things that are available to us aren’t that safe. This is where being prepared comes in again. If you’re not going to be home and you know that you won’t be able to eat something that is prepared, or if your family has a set standard for meals that doesn’t vary, then bring your safe foods. It doesn’t have to be the whole fridge, but just enough where you can feel comfortable. If you can, try and see if there is a way for the person cooking to prepare something special for you. If that’s not an option, again, stick with your safe foods.
Spending the holidays in the hospital sucks. It can even get a bit depressing but if you have a strong circle of friends and family, things can turn around. One of the things that you can do is have your family come by and have your own celebration there. Spending that time together can really boost your spirits and even help you get better faster. Another thing you can do is put yourself in the festive mood. Watch holiday movies, listen to upbeat music, write the things you’re thankful for, something that puts you in the mood.
Being in the hospital sucks and it’s not something we’d want to do no matter the time of year. The reality of it all is that it happens some times and you can’t always control it. Putting yourself is a positive mindset and thinking beyond the hospital can help. It may take some time to get to that point of changing your mindset, but it can help. Being upset isn’t going to change the reality of what’s going on and it can cause your symptoms to stay where they are. If anything, you’re alive and that’s something.
Overall, the main thing is to not feel ashamed or embarrassed about what’s going on with you health wise. This is what you live with on a daily and you will have to adjust some things in your life as well as inform people about what you have from time to time. Don’t let anyone make you feel bad about it or uncomfortable because when it’s all said and done, as much as they may care or try to understand, this is something that YOU deal with. Their insight can be helpful at times so be aware of that, but if ignorance presents itself, you don’t have to let it get you down or hurt you. Enjoy yourself and take the good out of the day. This disease, family and friends, it doesn’t have to get you down. You decide how you want to feel and it’s up to you, no one or nothing else. Enjoy the day, your family and friends, and have fun.
Happy Holidays guys and better days
"You don’t look sick"
Why does someone have to look sick to be sick? This is Alex. She is only 20 years old and is currently in hospice living the last days of her life BECAUSE OF CROHN’S DISEASE.
Before I go any further I just want to take a moment to share with you her fundraising page and ask you to visit it. Donate to her family if you can, they are being forced out of their home and that is the last thing this family and this girl needs during the last days of her life. She needs our love and support and they need a miracle. http://www.youcaring.com/medical-fundraiser/beautiful-beyond-the-pain/104060
With that said, this story hits me really really hard right now. Perhaps because Alex is a fellow Camp Oasis counselor. Even though she does Camp Oasis Georgia, and I do Camp Oasis Michigan, I feel like we are all one big family. Perhaps this story hits me so hard because I read it two days after the two year anniversary of losing my friend Katie, who was my co-counselor at Camp Oasis. Right now I have a close friend in the hospital (love you Mally!) and I just had a close friend get out of the hospital (love you too Beth!), and maybe it hits hard because it seems like I am seeing these stories all too often.
This could be me, it could be any one of us.
And when I look at the pictures of Alex who looks young and beautiful and vibrant, I can’t help but think that she has probably been told the words “You don’t look sick” too. Invisible illness is real. A person may look fine on the outside but their insides do not match. To all of you reading this that do not live with a chronic illness yourself, please know that. I lost a friend just months after she danced with me, sang with me, and gave herself to sick kids who needed us, with me.
I titled this blog Gaining Another Angel, but to be honest I don’t know what I think about what happens after life. I know what i’d like to think.
To sweet Alex, you are making a difference right now. 20 years is not that long but you are not going without a purpose. Right now everyone in our Crohn’s disease and ulcerative colitis community is holding each other a little tighter and we are working even harder to get the word out. We are sharing your story so that more people know just what IBD can do! I wish you peace and comfort in your last days and hopefully some laughs too. Camp Oasis Georgia will now have an angel just like our camp does. Say hello to Katie and Jessica for me. <3
**I just want all my readers to know that we can’t let this scare us. We have to be strong. Look life in the face and take it on, you can do it! I don’t know how many days I will have here on earth (no one does) but you better believe I’m gonna werk werk werk (that’s my inner drag queen speaking) until the day that I die.
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 don’t think healthy people understand how offensive this phrase sounds when you say it to a chronically ill person.
Thanks for reminding me that I don’t have the most important aspect of life.
To piggyback on my post on Hospital Must Haves, I wanted to do a post on the things I do when I have to stay in the hospital. A lot of the time I’m in my room, in the bed, feeling like crap and watching TV or sleeping. Other times, I’m looking for things to help curve the boredom. Here are some of the things I do.
Go for walks
Everyday the nurses and techs come in the room to check your signs and to give you a shot to prevent blood clots from forming since you’re in the bed a lot. To prevent those shots, they’ll tell you to move around during the day to get your blood flowing. This is where the adventures come in and where you can explore the building. If you’re feeling up to walking around for a little, the first place I would go would be to the gift shop.
When people come to your room with teddy beats, cards, candy, or sometimes clothes, this is where they probably got it. The gift shop is pretty cool because if you’re in a well known hospital, they’ll have a ton of stuff to look at and buy. It will be kind of expensive but there’s nothing wrong with window shopping. The next stop on our walk would be the food court & cookie stand.
The Food Court
The hospital cafeteria has a bunch of stuff to choose from but some hospitals will also have a food court similar to your favorite mall. This can be torture if you’re NPO or simply can’t stomach food or the smell of it. If you CAN eat or just want to roam around a feel like you’re at the mall food court, this is the place to go. SOME of the restaurants will even understand dietary restrictions and can tell you what may be ok. If I can’t eat real food, my mom and I always go to the cookie stand and get Snickerdoodles since cookies and junk food work well for me lol. After that, we’ll walk around until we find somewhere to sit or go outside to a garden.
Some hospitals have gardens that patients and visitors can check out. They’ll either be really small or super big. Gardens can be pretty peaceful and are a great change of scenery from the hospital rooms and hallways. Once we’re tranquil and one with nature, we go back inside and see what else we can find, sometimes babies!
The Maternity Ward
I don’t think you’re really allowed to just roam through the maternity ward but you may be able to find a window close enough where you can see the babies in the nursery. Who doesn’t love a cute baby? After all the cuteness, it’s time to walk back to the room and maybe see some other things.
I absolutely HATE walking around. ESPECIALLY AT NIGHT and the little R2D2 medicine and computer thingies start following you or just strolling by on there own. I used to like it until it caught me off guard. Now they’re creepy.
Sometimes we visit other nurse bays to see some of my old nurses on different floors and catch up. Since my drs office is in the hospital, we go up there and talk to some of his staff.
You know where all of those grape juices and graham crackers and cups of ice come from? A pantry. There’s this room on your floor where they have allllll of that stuff. If you have food that you wanted to save or if someone that’s staying with you does, you can put it in one of those fridges or warm it up if need be. You can even get extra juice and crackers if the nurses like you. It all depends.
The hospital that I usually go to is always doing some kind of renovation or getting a new building so what I like to do is go see the new wings or where the construction is happening. I’m a rebel lol.
Those are some of the places that I go when I’m in the hospital. What are some of the things you do? Let me know!
Going to the hospital sucks and depending on what’s happening, the visits can be more than a day and they can be pretty boring. We don’t go to the hospital expecting it to be fun or anything but it does help to have some of your favorite things with you. Whenever I go, i try to pack the things that I need as well as the fun stuff so that it’s more like home. Here is my list, and feel free to share your own!
I don’t always take my laptop with me but if I do, it’s usually because my stay will be pretty long or I may have a roommate that isn’t so friendly with the remote. Having a computer comes in handy not only for entertainment but if you’re in school and have homework or need to get some documents for the hospital, you’ll be able to handle the things that you need to.
A way to keep in contact with family and friends to keep them updated or just to talk. My phone also doubles as my iPod which is really important for me. Music helps me drown out the hospital sounds, especially at night and depending on the song, it can also help me get to sleep.
Ninja Turtle Snuggie or favorite throw blanket.
Hospital blankets can be itchy and too “hospitally”. Having your own blanket can make things more comfortable for you and they may even be warmer. When my techs would come to make the bed while I went for testing or a walk, they would make my bed and put my blanket and bear on it for that special touch. Not all of them do this but if you get one that really connects with you they might just do it.
Stuffed partner in crime
Stuffed animals are just awesome. If you’re staying at the hospital by yourself, roaming the corridors with a stuffed companion can be pretty fun if you use your imagination. They’re also good to sleep with and add that touch of home.
I hate the hospital gowns soooo much, so whenever I have to stay, I make sure that I have some of my favorite pjs with me as well as something comfortable to wear when I leave.
When I go to the hospital, I try to make it fun and make it less of a hospital experience as much as I can. I’ll make it sort of an adventure or I’ll pretend I’m in a fancy hotel on business or something like that. Sometimes I think nothing of it and see it as something that’s now a part of my life. Taking my mind out of it has helped me and it has even made the doctors and nurses question how sick I am because I never appear to be sick until they look. It’s all how you go about it tho. Going to the hospital isn’t fun and staying in it isn’t like a hotel at all. It is however something that happens pretty frequent in our lives and it may or may not change. It can be pretty scary and you may not even be thinking about having fun or even care about any of the things I listed. That’s perfectly fine. But I do hope this offers some kind of “good something” for you and it helps the process become easier.
As always, better days
I think we should all try and buy stock in our favorite toilet paper brands.
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!
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