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

Getting into a situation you don’t always like or want is never really your decision in life. It’s never easy and there are ways about going at it that can and will make it better. In this specific situation, I want to talk about getting admitted into the hospital.

I’d like to take a small break from my story and share some updates of my current health and what happened to me last week after seeing a new doctor. My health has been slowly getting worse since August after the medication I was taking, Stelara, stopped working. I decided to see a new adult doctor at Cedars and was able to get a rush appointment because my results from my pill cam were severe. After seeing Dr. Ha on Thursday and having her listen to what has been going on with my stomach flare, severe back pain, and low appetite she wanted to admit me into the hospital then and there. Unfortunately, Cedars had no available beds and a 19-person ER wait time, so she allowed me to go home and reserved a bed for me on Friday. Before I went home she sent me for a CT Scan for my back and took some needed blood tests to speed up the process for tomorrow.

So there I was again with no time to prepare for another hospital stay both physically and mentally. I headed home alone after my appointment to pack and get some rest that I knew I would need before the week ahead.

Hospital stays are never easy. I’m going to tell it to you straight. In all honesty, there is a way to make it a bit more positive. I may always talk about how making things “positive makes me have better experiences” but not all the things I’ve been through such as surgery has had positive outlooks. I want you to read this and look at my mistakes and maybe this can help you prevent a bad situation or just make it easier for you in general.

Kristen 4

A way to change your mind and attitude while staying in the hospital no matter how much you hate or despise being hospitalized are things you can bring to make it more comfortable. This week I was brought in for a five week IV steroid dose so I made sure to pack some of my own clothes to wear while I was in the hospital. No one enjoys wearing a gown so when admitted tell them you have your own personal clothes and ask if it would be possible to wear those. I also bring my own pillow and large warm blanket and that makes a huge difference with my comfort. I bring board games and my laptop to keep my mind off the pain and distract me from thinking negatively and I also was free to go on walks, so I made sure to take advantage of those.

While in the hospital I had to get several IV’s because they kept going bad. I had a total of 3 IV’s in three days. My last night I also had an ostomy nurse come in to help me with my bag because it has been leaking daily. She tried a skin prep called Marathon on my skin and instantly I started to burn. After already putting the new bag on for my second change that day I decided to give it a bit of time to see if it may cool down. That was a huge mistake. It didn’t, and for those of you that do not have a bag I would compare the pain to pouring acid on an open wound. HORRIBLE. Some advice I can give to those ostomates out there reading, if something is burning your skin MAKE SURE to get it off as soon as you can. So, I returned to the room in severe pain having to peel the marathon off me in the shower. This was awful and that was just the start. After letting the nurse know that this was going on I asked for a solution called “Domeboro” that you can pour on your skin to help heal it enough to put your bag back on. I waited a total of 3 ½ hours for this solution to get delivered to me in my room waiting with my bag off. The wait felt like days. After getting the solution on and my bag changed the doctor agreed to opting out on the last steroid shot so I didn’t have to go through the pain of another IV. The pain I hoped was finally over.

I was discharged Tuesday right before Thanksgiving. Sometimes even having a positive attitude and support may not change your whole experience but for me it helped me get through this week. I will be sent home with Prednisone for two weeks and then on to Humira. My inflammation went down significantly the first day of steroids so that was some good news I received. Please think about what I said on your outlook on your health. Having a good attitude and determination will help make you strong enough to overcome anything you put your mind to.  Like I mentioned in my first blog, don’t ever hesitate to ask me any questions or reach out! Hope your Thanksgiving went well last week. I sure am looking forward to mine!

Kristen 1

-Kristen Furey

Patient Champion