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

Just like there were steps to take in preparation for surgery, there are steps to take post-surgery. By doing these, you can help reduce your admission time, complications, and better your outcome with your new stoma!

Have a Positive Attitude

Alright, harder said than done. It’s easy for someone to say “lighten up” to you, when they are not the one going through surgery. When I talk about having a positive attitude, I mean looking for the light in the dark. Your pouch may not be sticking, your skin may be getting irritations, but you finally remembered to close the end of your pouch! You may be having pain post-surgery, your appetite hasn’t quite come back, but you’ve walked farther around your hospital unit today than any other. There may be many things to look down on when having ostomy surgery, but finding those small pieces of something going right is how you will work your way through the process of healing. Soon, you may find more light than dark.

Refuel

We all know appetites are not the greatest in the post-op period. A big, greasy cheeseburger may not sound as appealing as it did before, and that is to be expected. You need to keep in mind however, that the body needs fluids and food to fuel healing. Without these, your body is going to adjust to having an ostomy much slower than it otherwise would.

Move

If your nurse wakes you up at 8am and tells you to go on a walk, do it. Not only does walking exercise your atrophying-muscles and keep those lungs clear and able to breathe, but it also wakes up your intestines! After abdominal surgery, the intestines are slow to start, which makes keeping anything down impossible. Moving helps those intestines get back into their regular routine.

Expect Pain

Unfortunately, part of having ostomy surgery is pain. It is always important to advocate for yourself in the setting of pain. Letting your nurse and doctor know your pain level is key to good pain control. How can they help you if you don’t tell them you need it? A tip for assisting in mild abdominal pain is to hold a hug pillow against your abdomen. It acts as a support, so if you need to move or cough (which may increase pain), it creates security.

With all of the above tips, it is essential to follow the plan you and your healthcare team have created post surgery. This means no sneaking food if they tell you “no eating”, no Olympic level abdominal exercises right after surgery, and getting out of bed when you need to. The idea is to get you back to as normal a life as possible, and although it may seem as if they are pushing you too hard, they only want your outcome to be the best that it can!

Maggie

-Maggie Baldwin

Patients’ Champion Coordinator

 

I’d like to start by telling you that you are important. No matter what your role in life is; a mother, sister, husband, caregiver, friend, or coworker, you are important. For YOU, the patient, the one going through this disease or this life changing situation; you have support. If you don’t see it now, if you don’t see those around you searching for ways to be there for you and to tell you everything is okay, please think about it now. You are not alone. I’m telling you this because I thought I was alone. When I woke up in that bed after my surgery; a female teen with a bag on my stomach, I thought I would never be the same. Who would ever accept someone with a bag, someone who wasn’t the same as other girls, someone like me? I want to tell you now, give people more credit, they may just maybe surprise you. YOU are beautiful in every single way. YOU WILL get through this and make it out on top. I promise.

Kristen

My story from here has a bunch of ups and downs. I’d like to start with some positives. Some things that changed after my surgery for the good.

After making it home from the hospital and getting situated at college for my second year I was ready to take on my classes and my new experiences waiting to happen. This year I moved into the sorority house. I am a Delta Zeta and at the time there were 13 girls living in the house. Sounds crazy right? I loved it! There was always someone there to hang out with, someone to do homework with or watch a movie on our down time. I would walk to school and instead of coming home to my room to just lay down alone, I stayed on campus and went to events with friends. I was happy.

My classes were great. I switched from a theater major to a film major because that was more my forté. What I really needed was to find a place that I fit in, but all along I did fit in. I always had friends and support, but it was a matter of letting them into my life. I tend to push people away when I get scared and afraid of losing them. So, there I was, a second year into college, a sorority girl living in the house, and I was finally going out with friends.

Then I relapsed. One night I woke up in the middle of the night tossing and turning in pain. I believe I was the only one home in my room so that was a bit better because no one knew I had a bag. As the pain got worse it turned into screaming. My stoma had prolapsed from my body. It had completely fallen out and there was nothing I could do to fix it. I called my mom crying and told her we needed to get to Cedars immediately. I had to have my bag off the entire way and if you have a stoma, you know that is not an easy thing to do. I remember getting into the room and everything was just so sudden. No one was speaking to each other. The nurses were rushing in, then other help, then my surgeon. In that confusion I wasn’t given any pain meds. They put salt on my stoma because that was a way that could help shrink it, but it was not successful. Then Dr. Fleshner came in suddenly and tried pushing it back in. Yes pushing it with his hands with force. Remember I told you they had forgotten to give me my pain medication? So yes, there I was lying in a bed having my stoma pushed on with no meds. I would say this was the worst feeling I’ve had awake. He realized after I was screaming “bloody murder” that I had not gotten anything for the pain. He was not happy. Minutes later I was asleep and Fleshner did a reduction and revision to my stoma.

The surgery was successful, and I was out after three days. This was in mid-November of 2013. I returned to my house and returned to school. I was put down and angry once again. Why did things keep happening to me? Three surgeries in four months. I hoped I was finally done.

Things in life don’t always happen the way they’re planned, the way you want them to. I’m still always told till this day, “everything happens for a reason.” What twisted reason would this be in my case? Maybe it was bad luck, or maybe it was something to make me stronger as a person. Or maybe this happened so I could live to tell my story and help other people just like me. Whatever the reason I’m thankful for my life, my family and loved ones, my friends, and my new job at 11 Health. I wouldn’t be the same person without any of these amazing people.

Kristen 1

-Kristen Furey

Patient Champion