I’ve probably talked about my moon face to every one of my friends and none of them really knew what I was talking about until I explained it.
Prednisone is a steroid that of which will help with the pain and inflammation temporarily while a different treatment plan is underway, usually.
Well, I’ve been on Prednisone since late November, and let me tell you, it’s nice to have some help with the inflammation in my gut, but the constant eating, and changes in my body are driving me nuts.
For starters, I’ve been getting these bumps on my forehead and my shoulders. They aren’t even pimples, just little annoying bumps. Also, I’m almost always hungry, and everything tastes good. I can’t think of a single food I wont eat. And lastly, moon face. While, I haven’t experienced much weight gain except maybe a few pounds, my face has turned into a literal circle. I see myself and think ‘Human or hamster?’ because I look like a little rodent that kids keep as pets whenever I smile. It’s kind of insane and I absolutely hate it. I have an ileostomy bag at the moment, and I’m more insecure and concerned for the roundness of my face and my puffed out cheeks, rather than the bag full of poop on my stomach.
Now, you may think I’m overreacting, but people have actually noticed this change. So figured I’d provide some photos from when I was first diagnosed with Crohn’s in August of 2018 to just a few days ago in January of 2019, for reference.
Now, it may not look like a lot, because it really is just my face that’s gaining the weight, but I mean, COME ON, I totally look like a little hamster or something. And it’s fine, because I know once I’m off Prednisone in a few weeks, it’ll go back to normal, but wowza, gotta love modern day medicine and the lovely side effects!
So when you hear someone refer to moon face, this is what they mean. Medicine can have lots of negative side effects, and it sucks when the thing that’s helping your pain is also the thing making you look a way you don’t necessarily like. It’s hard to be positive or feel good about yourself when you can literally see this change happening right in front of you. There are days I just feel so insecure, whether it’s because of moon face, or the little bumps on my forehead, or the bag, I just miss the confidence I used to have and I’m trying so hard to get it back, but it’s hard when medicine is contradicting you. I just remind myself that moments are temporary. I can and I will get my groove back, I just need to keep patience in mind. Nothing happens overnight and right now my health is the main concern.
But damn, I am SO ready to start feeling AND looking good at the same time. So let’s hope when I get my reversal surgery in March, I will be.
Also, remember, if you have a bag, or moon face, or just anything you feel insecure about, try not to stress too much over the little things. We all are trying our hardest and I know sometimes things like this can be very discouraging and frustrating, but honestly, we all are beautiful no matter what. We all have things about ourselves that we consider flaws, but try to focus on it as a unique part of you. It’s what makes you, you. And we need to learn to just embrace ourselves and love every part of ourselves, because that’s the key to being not only happy, but healthy.
So ladies and gents, embrace that moon face, because it’s the only face you got and there’s no point in dwelling on it!
Many of you may have heard the words ‘Colostomy’ or ‘Ileostomy’ thrown around. And you probably just didn’t even think of what that could be. Now some of you may have heard the phrase ‘Poop bag’, and you most likely giggled to yourself or made some sort of joke about how that’s disgusting. Don’t worry, most of us have. But I’m here to inform you all about everything you may, or may not, want to know about these wonderful bags that often get placed on those of us who can just count ourselves lucky.
The G.I System
So let’s get started, Crohnies.
Ostomy, Colostomy & Ileostomy
Ostomy is a type of surgery in which a surgeon creates an opening in the abdomen. It is a small hole near the belly button that is used for, you guessed it, pooping.
The small intestine opening that the bag goes over and covers.
Colostomy is the opening created by a surgeon to bring the colon (large intestine) to the surface of the belly. There are various kinds of colostomies (Ascending, transverse, descending and sigmoid colostomy). All of which are very similar just with minor changes. These procedures can either be temporary, meaning you may only have the bag for a short period of time, or they can be life-long.
An example of when you take the bag off the stoma
Ileostomy is the opening created by a surgeon to bring the ileum (third portion of the small intestine) to the surface of the belly.
Let’s Talk About Stoma, Baby
A stoma is the end of the large or small intestine that can be seen sticking out of the abdomen wall. It’s that little pink thing you see in the pictures above. You usually will only see the stoma when changing the bag or when you remove the bag. So don’t worry to all you non-baggers, you don’t have to shield your eyes in fear.
Most stomas will: stick out of the body usually an inch above the skin, they vary in size and can be oval or round shape, the color is red (similar to the inside of your mouth) and moist, and last, they do not have feeling.
Stomas can bleed easily if they are rubbed or bumped but it should resolve quickly, so don’t panic unless it doesn’t stop.
The Pouch
So now that we’ve taken care of our intestines and lovely little stomas, we’re going to go over some things about the Colostomy (Poop) Bags. What you all have been waiting for!
So you may be wondering what all goes down in that little secret bag displayed on your belly. Basically, it’s a pretty simple thing. Stool aka poop, will almost immediately after eating in some cases, make its way as far as it’s able through your intestines and then instead of exiting out of your butt, it’ll exit out of the stoma which is the front of your stomach. The stool will then slip into the pouch that is connected to you through a very thick adhesive sticker. These pouches can last up to four days until you need to change it out for a brand new one.
You wont be able to feel or control when your poop exits you. Some people don’t even realize it. The smell is concealed within the bag so don’t worry about others smelling you, it’s more hidden than when you pass gas through your pooper.
When the bag is about 1/3 or 1/2 full, you will sit or stand over a toilet and at the bottom of the pouch, empty the contents into the toilet, and all done! You can now seal that bad boy back up and exit the restroom, carrying on with your daily life.
Multiple pouch size examples
The pouches are very lightweight and they lay flat against you. With many clothes, you can’t even tell it’s there! They come in all different shapes and sizes. Not only that, but you can buy all sorts of pouch covers. I happened to purchase a few lace ones, which I personally call my “Sexy Covers”. I plan to wear my bag with pride, so don’t be surprised when you see me rocking some crop tops with a cute little black laced pouch connected to the tummy.
Confidence is key, you beautiful people. Don’t be ashamed of your bag!
There are several pouch types:
One Piece System
In a one piece pouch, the pouch and skin barrier are attached together.
Two Piece System
In this system, there is a skin barrier and the pouch can separate from it. The barrier sticks to the skin by n adhesive and protects it. It is convenient to be able to change your pouch more frequently without having to remove the skin barrier each time.
Drain-able Pouch
This pouch is opened at the bottom to expel the stool. You don’t need to remove the entire pouch when emptying. It can remain in place for several days. Usually a best option for people who need to empty their bag multiple times a day.
Closed End Pouch
Used when the pouch doesn’t need to be emptied often, traveling, during sex, or while swimming.
You can pick which ones to wear whenever you’d like. It’s all up to you!
Tips, Not Necessary, But Greatly Appreciated!
Now that we know all about our pouching systems, I’d like to offer some tips and advice for daily activities.
Sleeping: Make sure you empty your pouch before bed and try to refrain from eating/drinking beforehand. Sometimes people find it easier to use a larger pouch at night.
Bathing: You have the option to shower with or without the pouch on. It’s all about personal choice. Some change their pouch during their showers or they remove the entire pouch and barrier prior to bathing. But remember, if you shower without the pouch, don’t be surprised when some visitors decide to shower with you through the stoma, because like I said, you can’t control when it decides to make it’s exit.
Sex: Empty the pouch beforehand. Don’t worry about an odor, the odor is concealed. If you want, wear some lingerie or a lace cover for your bag to make it a little more sexy. Smaller bags are also options for convenience.
Food/Diet: Make sure you work with a dietician or nutritionist! They know what’s up. But don’t forget everyone’s bodies are different, so what may hurt my stomach, could not hurt yours. When you eat, make sure you FULLY CHEW YOUR FOOD! I cannot express this enough. It will help with digestion.
Traveling: It’s usually not much of an inconvenience. But make sure you are always prepared. Bring extra supplies like pouches and bags. For airlines, pack all your supplies in a carry-on or purse. Make sure you pre-cut your pouches at home since scissors aren’t allowed on places. For road trips, just make sure you are careful where your seat belt is placed. Irritation and discomfort is never fun.
Exercise/Activity: Heavy lifting could cause a hernia. For the first 2-6 weeks after your operation, take it easy and do not lift anything over 10 lbs. Heat and sweat may decrease the barriers adhesive so be consistent with checking it’s in place. You are able to swim and use hot tubs with your pouch! Don’t worry, the fun doesn’t end. Just make sure it is protected and supported. If you want, wear a swimsuit with a high waistline or a full body suit and use a close end pouch.
My Thoughts
Now, I am very confident with myself, but it hasn’t always been that way. When I first found out about getting a temporary ostomy bag, which will be happening in two days, on Monday, I was very insecure, embarrassed and discouraged. I thought to myself, wow, who wants to date a girl with a poop bag? And I realized, why in the hell would I ever want to be with someone who wouldn’t want to be with me due to something that is helping me live healthy, happy and essentially, having less pain? Please, if you are getting a bag or worry about what others think of the bag, DON’T! We spend far too much time worrying about what others think of us, and yes the pouch isn’t an ideal situation, but if you can come to the terms of loving yourself and being confident, you will be so much happier. It took me so long to have this confidence and feel this way, but now that I do, even though I haven’t had my pouch placed yet, I know I will be okay. We are all human and even though we may not have those perfect mod-bods, doesn’t mean we aren’t beautiful. Learn to love your bag. Some people even name their bags, which yes, I have already done.
In the hospital, I was able to try on one of the bags BEFORE surgery and here is the result. I will admit, I did cry at first, but accepting it will get you the happiness you deserve.
The love we contain for ourselves, make it easier to love others. If you fear judgement, you need to accept that people will always judge you. It’s all about learning not to judge yourself. I wake up every morning and tell myself I am enough, I am beautiful, I am me. And it has made such a difference. I’m the happiest I’ve ever been and that’s coming from a nineteen year old single mother who suffers from Crohn’s Disease and is having a poop bag put in place. Remember who you are and just know that you are beautiful to not only yourself, but others as well.
I will be posting a post-op article later this week on how I am doing with my temporary bag and the challenges of those first few days along with pictures. I’m also working on a few new Youtube videos that will be uploaded within the month. And reach out to me on Instagram, Facebook or Twitter!
Hey, Crohnies! I’d like to introduce you to a friend of mine, Matt Dalton. Matt and I went to high school together and I never knew he had Crohn’s Disease up until he reached out to me when I first announced that I had it! I decided to ask him a few questions about his journey with Crohn’s. So please read up on his experience throughout his life and how he’s been doing!
Matt Dalton. Maumee, Ohio
MJ: When did you first discover you had CD?
MD: I first discovered I had CD when I was 8 years old. I was in Memphis and I couldn’t eat anything without experiencing severe pain. I ended up losing about 45 lbs because I couldn’t eat. Eventually, I went to the doctor and had a colonoscopy done and they found severe Crohn’s throughout my intestines.
MJ: What were the next steps for treatment after you were diagnosed?
MD: At first, I started on pills and those did not work for me at all, so then I moved on to Remicade which has kept me in remission for 10 years now.
MJ: Have you experienced any issues with Remicade?
MD: No, I haven’t had many problems with the treatment. I just had my last infusion about seven weeks ago to see how I could handle it. I’ve had a few bad flare ups but was never hospitalized for them . A few times I would end up vomiting from it, but that was rare for me. Since I’m in remission, my doctor and I have decided to take me off Remicade completely!
MJ: When was your last flare up?
MD: My last flare up was about 2 years ago.
MJ: That’s amazing! How are you feeling now about stopping the medical therapy?
MD: I am a little nervous to stop treatment but I made the choice because I feel ready and I’m going to stick with it. I hope it works but other than that, I am feeling great!
MJ: I know in high school, you did football. How did CD affect that?
MD: During football, I never really had any problems. I did have to miss practice a couple of times for my treatment and I did have one on a game day, so that was no fun, ha ha. But I was going to play football no matter what. I even went to practice a few hours after a treatment.
MJ: I’m so happy for you! So last question, is there any advice you’d give to someone struggling with CD?
MD: Try to find something to distract yourself during all of it. No matter what it is. Mine was sports and it would keep my mind off of the bad times during all of this.
Hello, everyone. Welcome to the blog portion of the site. Within each blog I will talk about tips when dealing with Crohn’s, personal experiences, hair loss, self image, depression and even sometimes funny interactions with others. There will also be interviews with others and their experiences as well. I make Youtube videos as well which are posted under my “Videos” page on here. Those take a little longer to be posted, so chances are there will be more blog posts than videos.
I am very involved with writing and absolutely love doing it so I figured why not start a blog as well! My whole life has changed since being diagnosed and I’m going to be very positive and really just want to help others while they deal with it too. Crohn’s is a very difficult and frustrating disease. I personally see a therapist and I’m in a support group and if you are suffering from Crohn’s and struggling, I highly suggest doing the same. My support group ison facebook and for women only, and truthfully, I’m not sure what I’d do without those beautiful lovely ladies. They have some amazing advice and I’ve met some wonderful people. Everyone with Crohn’s experiences different things. We all have our own story, so please feel free to reach out to me with yours if you’d like to just talk to someone or if you want me to publish it! I’d be happy to do it under anon as well if you don’t feel comfortable with your name on here. Just let me know. We all have a story and they should be told. You are not alone!
I’ll also be tackling some depression subjects for I have suffered from depression since I was twelve. So I’d love to talk with you about that as well. People with Crohn’s are 3x more likely to suffer from depression and anxiety. I also will go into talking about my infusions. Every 8 weeks for the rest of my life I receive infusions from an oncology center where the pump medicine into me for a few hours. I happen to be on Remicade.
I’m not a professional anything. I’m just merely a young girl wanting to share her experiences and journey through a sickly life. Thank you for following along with me and I hope I can help. (:
Crohn's Chronicles 