Something that seems to be said to me again and again is, “You don’t look like someone who would have an ostomy.” What is someone who has an ostomy supposed to look like? Are they supposed to look a certain way? Many people have stereotypes for all different things. In my case, I received an ostomy due to complications with Crohn’s Disease. Several people I meet and find out that I have an ostomy assume only older people could have one. This is not the case. Any person, any age or size, can have an ostomy. They can have it due to a stomach disorder, cancer, or in one case a mother whose son got in a car accident and had to get a temporary ostomy. I hope whoever is reading this and didn’t know, learns something and maybe shares this with others so more people can be educated on this topic.

I’d like to share with you something that happened to me that changed a lot of how I look at myself. It sounds dumb saying it out loud, but we as people put a lot of importance on how we look. We often worry that looking a certain way or standing out from others is a bad thing and not the norm. My story of my health journey has a bunch of ups and downs. At this point in my story, I would say it hit the all-time low. The one thing I always thought would happen is that I would have my reversal and I could go back to living my normal life. That is what I was told and is what kept me going. This was not the case. I had run out of medications to take and my colon wasn’t getting any better. It was time to make my ostomy permanent. When it got close to my surgery I was in denial; I did not want the surgery, so I kept telling myself I was okay. This did not last long. It resulted in being in the kind of pain you think about that you never imagined you could have. When the time came I told my doctor I was ready and back to the hospital I went.

This procedure was unlike others. I got my colon removed, but since I had a very bad case of perianal disease I had to have a plastic surgeon come in and do a flap surgery on my bottom to close the area so that it could finally heal. Back to when I was saying I was self-conscious about one of my body parts, I meant my bottom. After this surgery I would no longer have the same shape, or just a normal looking bottom as most people do. I was 21 at the time and I was mortified to see what it would look like. This is normal of course, just like when all of you “ostomates” out there who got your surgery. You no longer look the same and this was not an easy thing to accept. There were many days I spent worrying about not having a normal stomach, or a normal bottom which I think were totally a waste. I can walk with no pain, I can live my life normally as any other healthy person does. I just look different.

Having an ostomy doesn’t change who I am as a person. It doesn’t change how I act or feel or live my life. Changing your appearance doesn’t change you as a person.  Consider this every time you have a negative thought about your appearance. Any thought like I mentioned in the video whether it’s your feet are not the size you would like, your hair isn’t long enough, your nose isn’t the perfect shape, throw those ideas out. You are perfect just the way you are. That bag on your stomach has now become a part of you; accept it and be proud of it. The opportunities you have in life are endless. Take advantage of that and always stay positive.

  • – Kristen Furey
  • Patient Champion

Let’s talk about the Alfred Alert Sensor. There may be some tips and tricks you are learning as you go along using the sensor. We want to make sure you have the best experience using it, so let’s go over some do’s and don’ts!

One thing to keep in mind when attaching your sensor to your pouch is that the battery (the round part of the sensor) and the sensor strip are within the limits of the bag. That means neither the battery nor the strip are hanging over the edge. If it is not completely attached to the pouch, it may not be reading its contents correctly.

Something else to remember about this sensor is that it is not waterproof. This means no showering or swimming with it! Try to remember to peel it off each time you enter water, that way the sensor continues to work.

For the sensor to continue reading correctly, you want to keep it free from damage. Protecting it from scratches, avoid bending it, and not rubbing it will extend its life. It’s a good idea to keep it in a sleeve, even when not in use! If you feel it needs cleaning, gently wiping it with a dry cloth can accomplish this. Don’t use cleaning fluid or water – like previously mentioned, liquids and the sensor do not go well together!

One last note when it comes to wearing the sensor; loose, non-restrictive clothing works best with the sensor. If you wear tighter clothing, it may push against your pouch, changing the readings the sensor receives. Don’t worry, this doesn’t mean a new wardrobe! Just avoid those skin-tight outfits that squeeze your pouch!

By following the above tips and avoiding the “don’ts”, you are helping your Alfred Alert Sensor help you!

-Maggie Baldwin

Patient Champion Coordinator

I think one of the most important ways to live a happy and full life as an ostomate, or as a human in general, is to fully accept yourself. What I mean by this is to be able to look at yourself in the mirror and love the person looking back at you. I’d like to say I am a positive, open-minded individual, but I honestly can tell you that I have not fully accepted having a bag on my stomach permanently.  I have come far in my four and a half years and by just writing and sharing this with you I have taken a step up from where I was before. I look at myself differently and have felt a sense of support and love for myself that I never thought I could have. This bag on my body is permanent, but I will not let it define who I am as a person nor let it hold me back from what I want to do with the rest of my life.

So, two weeks ago after coming home from the prolapse surgery, I was in pain and feeling discouraged once again, but the feeling didn’t last long since I had school to keep my mind off things. I did go home often to see my mom, but I also was continuing to stay active in my sorority. I kept in contact with my doctor, Dr. Dubinsky, and we began discussing the process of starting Remicade, an IV medication I would go to the hospital to get once a month. I started seeing Dr. Dubinsky at the beginning of June 2014. She laid out my plan of action for the upcoming months. Looking back on what has happened to me and how things were handled when I first moved to Southern California with my health, I can’t help but smile and be thankful. When I first saw Dr. Dubinsky she knew right away what had to be done, and she acted quickly. I say with upmost confidence that she saved my life that day. Dr. Marla Dubinsky saved my life and I have nothing but respect and full gratitude towards her. She helped me become the person I was meant to be, and I want you as a patient, a parent, or a supporter to see that in your physician. No matter what, they are there to help you and if you’re lucky enough to have such a caring doctor like I have then you’ll remember and be grateful for them for the rest of your life.

We discussed starting Remicade and Imuran at the end of the month and that came to be the most successful drug for me. I went in to the infusion room once a month and within days I would feel great! It was my own personal miracle drug that kept me healthy and living a normal life.

Then what I thought would never happen again, did. My stoma had prolapsed. Pain had struck, and I found myself in the car on my way to Cedars with my mom by my side.  It was now September 29th. I had been admitted into the hospital and Dr. Fleshner did an ileostomy revision and small bowel resection. The surgery was successful with no complications and I was out in four days.

Looking back on it all, most of these surgeries are a blur,  but I do remember something that changed my stay in the hospital. When I found out I was having this surgery I called my Dad. The same night he jumped in his car and drove 8 hours to get to me and I remember waking up with him in the room holding my hand. I will never forget what my parents sacrificed to be there with me and how much they showed me I wasn’t alone or was never going to be alone. I wouldn’t let any of the nurses help me out of my bed. It’s kind of funny to think about it now. My dad had a system of getting me out of bed and it was the only way to keep me from being in pain. He was the one to walk me up and down the halls holding my IV pole and my hand. I would be nowhere without the support from my parents and my brother.

Now I always tell you to think about things as you read my blog. This is to help you relate and find things we may have in common with our care that will hopefully give you help or hope in the future. If you are a parent, friend, caregiver, supporter, or someone looking to be educated, you too can find things to help others just like me. Think about how the support you have from your doctor, or parent, or child helps you and maybe thank them and smile knowing you have them in your life. I know I do every day!

-Kristen Furey

Patient Champion