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

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