Going to my first support group I was a bit nervous and I didn’t know what to expect. When I think of support groups I think of people sitting in a circle, like in the movies, speaking about their troubles and all saying, “Thank You [INSERT NAME]”, after each person has spoken. It looks and feels more awkward but that’s how I imagined it might be. In fact, in real life it’s a lot different.

If you have never attended a support group for any reason I would recommend from personal experiences to try it out.  In this case I am talking about ostomy support groups. In any case, for whatever type of support group, I’d say give it a try. You may really like it!

My first support group felt really welcoming and I met a lot of amazing people. I went in December, so it was their holiday potluck. I had first walked in not knowing where to sit or who to first approach, but I knew I would get something out of this experience. I am not a shy person, but I think anyone would relate in this kind of a situation. I really didn’t know where to start.

After I sat down, right away the three ladies sitting next to me started to ask me questions. ‘What’s your name?’, one asked.  ‘Where are you from?’ stated another. ‘Oh, you’re so young what kind of ostomy do you have?’  I was so relieved and happy to share all about myself. I told them my name, age, that I had an ileostomy, and that I just graduated in May and found a great job!

“Smiling doesn’t necessarily mean you’re happy.

Sometimes it just means your strong”

We ate and then went to the lobby of the building and the President’s Tap Dancing Group gave us a show! It was so cute and when they asked for volunteers of course someone called out “Kristen wants to join.” So, there I was tap dancing in front of all the new members of the support group that I would later be a big part of. Well, at least I hope so!

This month I returned, and the group had a speaker from Convatec give a presentation. She gave out samples for us to try and told us about each product and what insurance covers it. This was great for those of us who did not know what products to choose or those who are looking to try something new. Your support group can help you with this! There’s always someone who has tried something else and can share their experiences.

We then separated into groups based on what ostomy we had and spoke about whatever we wanted. It was so refreshing to hear that others had similar problems and I also helped a patient who was having leaking problems like I had in the past. Towards the end of the meeting I saw a table in the back filled with supplies that were welcome to anyone! They have it there for members to bring if they don’t use them anymore. I went and grabbed a couple products I needed/ wanted to try and was visited with a kind lady who wanted to hear more about my job.

There are support groups of all kinds offered online, in person, or even on social media. If you don’t feel comfortable right now to attend in person, maybe you can try searching for a virtual support group that offers discussion forums from people all over the world sharing their experiences. Or if you would like to meet in person I’d recommend going to the UOAA website and typing in your zip code to find the nearest support group to you! The people you meet at support groups are there just for that; to fully support you. It’s someone to talk to that knows what you are going through and can help.

I personally only know two ostomates that I don’t see often so it was nice to go and talk about what I have gone through and hear their stories and their struggles as well as their successes.

I have often felt completely alone. I felt like I was the only one who was going through getting a bag at 19 in college and having to deal with it while trying to make my life normal. Now, I don’t even want a normal life. Normal isn’t always the best. I have found a way to live my life the best I can, and I am happy. Find happiness, keep smiling, and surround yourself with people who are there for you. This can be your best and most rewarding gift.

I’d like to hear from all of you! Have you tried attending a support group? Share your experiences with me in the comments. Or if you have joined an online group, even through Facebook, please share anything you would like! I don’t want any of you feeling alone in this! Everyone deserves a chance to share their story with someone just like them!

-Kristen Furey, Patient Champion

I feel like a guinea pig when it comes to doctors giving me medications.

From the age of 12 I was diagnosed with Crohn’s disease and from there on I was thrown medication after medication to try and “fix” me.

I couldn’t swallow pills at that age so naturally I gave up and didn’t take the medication. This was not the smartest thing to do but I was fed up with the medications giving me zero results and making me feel no better than when I started.

I remember the doctor giving me a medication called Pentasa. They were these long green and blue capsules and they wanted me to take 8 capsules 4 times a day. Yeah that’s 32 pills on top of other medications I had. Long story short I was switched to a new drug in no time.

Eventually I graduated from taking pills to the more exciting stuff! Yeah so exciting it involved needles and IV’s. These were the infusion and shot forms of drugs offered for Crohn’s disease.

 

So, let’s start with Remicade.If you have read my past blogs I spoke about taking Remicade and it being my own form of a “miracle drug” (SEO Blog-Being positive). Remicade is a two-hour infusion you receive through an IV at an infusion center.

This was the drug that worked the best for me and didn’t take long to start working.

The one thing that I did discover when getting Remicade was that I’m allergic to Benadryl. The nurses at the infusion center give you a shot of Benadryl before giving you the infusion to prevent a reaction. But of course, when they gave it to me I stopped breathing and was immediately given a mask to help me breathe. Other than that horrible memory, Remicade worked wonders for me! This was the drug to give me my hope. No matter what you go through when switching medications, you need to remember that having hope and a positive mind towards the new drug will really help your experience and time on the drug better. I learned this the hard way by being very somewhat negative and pessimistic. After Remicade I knew from now on I needed to give each medication a chance!

 

The next drug is Stelara.This was the last drug I was on that worked for a solid 4-6 months before I started to get sick and flare up again.

Stelara is a shot that the pharmacy of your choice sends to your home and you give it to yourself.

My shot was given every 8 weeks and it wasn’t very painful. It came in a syringe and you could control how fast the medication went in. I was lucky and had my roommates give me the shot because I didn’t feel comfortable giving it to myself. It helps to take the shot out and have it sit in room temperature for 30 minutes as well as ice the area you decide to give your shot nt, so it becomes numb. The shot started working after around a month I believe, and I was healthy and symptom free. Then a couple months in, the drug started to wear off after 4 weeks. Shortly after my doctor decided to up my does to every 4 weeks. Everyone is different obviously with dosage, but I did find Stelara to be successful. The side effects I did notice were headaches toward the end. I noticed myself getting horrible headaches. Other than that, I don’t recall any significant side effects.

 

The final drug, the one I am currently taking, Cimzia.

I know since I have not been on it long enough I can’t share too much but I would like to share initially a little I have learned. This is because when I started taking it I really didn’t find too many discussion forms or websites that talk much about people’s experience with it. This is another shot that can be given at an infusion center or sent to your home. After getting my one Humira shot last month and having a horrible experience of pain and torture, yes Humira I would say is torture, my doctor suggested Cimzia. She said I could get a lidocaine shot then the actual shot. It has been successful and not a lot of pain at all! This past week I got shot 5 and 6 so I am done with the starter shots and now will be going once a month. Crossing my fingers it helps because this is the last and final drug I have to take.

One way that has made getting these shots, infusions, and many trips to the hospital better is taking my mom with me.

Do you bring anyone with you to doctor’s appointments or to get your medications?

If not, maybe consider bringing a friend or family member. Having the support of someone with me and there to hold my hand or keep me company really has helped me over the past few years. You don’t have to be alone in this disease and you are allowed to ask for help.

When you go to your next shot, or infusion, or appointment ask a friend or a family member to go then maybe have a cute lunch at a nearby café or take pictures like my mom and I like.

LA art picture after doctor apt. at Cedars Sinai

It is something that takes your mind off doctors and pain and makes your experience a little easier and fun!

Thank you so much for following my blog and feel free to comment and share anything you would like! What medications have been most successful for you and what medications have been not so successful? Share your stories and experiences in the comment section and have a wonderful week!

-Kristen Furey

Patient Champion

Arriving to the college dorms sick and full of anxiety was not the best way to start my new journey into college but that’s where I was at. My Crohn’s disease was the worst it had ever been when I started college in 2012 at Cal State Fullerton but do you think I let that stop me? No way! College, schooling, getting an education is so important and I would like to share with you how I survived it and ways that made it easier for me to feel more comfortable.

I pulled up on campus with my car packed and ready to find my dorm, and my first concern was, where’s the bathroom? That was usually the main thing I thought about all day…every day. If you have read my past blogs I got my ostomy later in school so just to remind you I did not have my ileostomy yet. So, my day consisted of walking through campus and learning where all the restrooms were. After learning about the disability program when signing up for college I registered right away, and I never regretted it. I advise you to do the same because Crohn’s or UC or any chronic illness is a disability and the college will accommodate you as they should. I made sure to let all my teachers know my situation by introducing myself in person and through email. I had special privileges of leaving the classroom whenever and however long I needed to with no questions asked. As well as getting a note taker for days I had to miss class, and if I was absent I wasn’t penalized. These kinds of things really mattered to me because I did not think it was fair for me to lose points because I was home in bed sick from a flare, or from a bad day with Crohn’s. Do not feel embarrassed signing up for disability or for communicating with your teachers. They will understand and if they don’t, simply have the disability advisor take care of it.

First Year 2012
First Year 2012

After my surgery in 2013 many things turned around for me. I gained 50 pounds and I no longer was rushing to the restroom as often and now I could enjoy school and get out of bed. Throughout my years in college I did have several surgeries missing weeks at a time, but I still stuck with school. I had to take one semester off, but I did finish in 5 years. I advise those ostomates out there living away from home, on campus, or even at home, always have supplies with you when going to school. Then you are fully prepared for a possible leak and prevent any problems. I remember one day in class I had a leak and I had to up and leave. I remember the teacher glaring at me and I felt so rude for leaving but there was nothing else I could do. I ended up emailing him later that day to tell him I had a medical emergency, but I never really think he understood.

Graduation 2017
Graduation 2017

There will be a lot of people in your life who don’t always understand what you are going through. Some may be your peers, you teachers, managers at work, family, or close friends. It’s how you adapt and develop a sense of understanding that not everyone will accommodate or understand your struggles and how you go about overcoming them in your own ways. I am so proud of graduating college with this disease and I hope you will keep going and keep up the good work. It is doable to finish a 2, 4 or however many year university you choose to go to. You just have to believe you can do it and that will be your motivation to succeed.

Kristen Furey - Patient Champion
Kristen Furey
Patient Champion