Support group

I just returned from an Ostomy support group meeting at Fox Chase Cancer Center. My mom and brother work there, otherwise I would have had no idea they even met there. The center is only 5 minutes from my house and I figured I had nothing to lose. Other ostomy groups only meet every other month so I wanted to jump on the opportunity to get to a meeting now, especially with how I've been feeling lately.

I've had some unexpected bumps in the road and it turns out I'll need to more aggressively pursue a treatment for my Crohn's. I was hoping for a few months of being med-free and not worrying about which crazy drug I will have to experiment with next. I feel like my surgeon really didn't explain some of the problems I could still experience after the surgery. I guess it isn't turning out to be the cure-all I thought it would be. Since I opted not to have my rectum and large bowel removed, my disease is still somewhat active there even though, hypothetically, nothing should be passing through (that's a whole other story). So now I must go back to see my GI and discuss more treatment options. No need to worry, however; I'm certainly not as sick as I was before, just experiencing some crappy symptoms that make life a little bit more challenging. Nothing I haven't dealt with before but definitely frustrating considering how well I felt post-op.

Anyways, I found the support group somewhat helpful and I think I'll go back next month. The people were all extremely nice and open to sharing their experiences. I think they all pitied me because I was the only young person there. But really, I felt more bad for them because most of them had their ostomy surgeries due to cancer. Most of them had Urostomies and there were actually two people with BOTH a Urostomy and Ileostomy. I couldn't imagine! There was only about 3 other people with Ileostomies but they happened to be the most vocal people in the room, so I got a lot of insight and even found myself nodding along to their stories because I knew exactly what they were talking about.

I was glad to meet the ostomy nurse at Fox Chase just cause she seemed a lot nicer than the one I dealt with post-op in the hospital. Not that mine was mean or anything but I think it takes an exceptional person to be able to make someone with an ostomy feel comfortable enough to talk to them. I'm the kind of person who would rather endure the difficulty of trial and error rather than just seeking someone out so its nice to know there is a nurse I would feel comfortable talking to.

They had a speaker who was the Vice President of the United Ostomy Association. His talk was very informal and consisted of him sharing information about the association as well as his own stories from living with an Ileostomy for 20 years. Again, this was helpful because as far as I know, no one else in the room but him and me had Inflammatory Bowel Disease. He really didn't say anything I hadn't already known but I guess it's always helpful to see first hand that it is possible to live a normal and happy life with this condition.

Anyways, that's it for now. Hopefully I'll have some better stories to share soon!


JoAnna said...

That sounds great. I just now found a support group that starts this month. I haven't been yet so I will report back. I know one of the ostomy bag reps told me that it was hard to keep a group going because of the lack of young people. Sounds like you might be a great addition to the group. Stay strong. For me I was still adjusting for a few months at least. Once you do it will be so much easier. I'm thinking of you and if you just want a shoulder to cry on please email me.
Also, I have yet to find a great ostomy nurse. I would like to have one who actually has an ostomy. I bet that would make a huge difference.

Anonymous said...

Hey Ellen,

I always keep up on your blog. You are such an inspiration and you are so strong. You are always in my thoughts and prayers. Keep going...Sam Adams octoberfest is pretty amazing :) Katie Verdi :)

Ellen said...

Thanks Katie. That means a lot! I'm looking forward to some Octoberfest, too!

Anne said...

Hi Ellen.

I'm not sure when or how I first stumbled upon your blog, but it's probably been at least 6 mos. I think it caught my eye because I'm also a Philly area (and Penn Presby) Crohnie. But I continued to follow because you're an incredibly talented writer who has completely sucked me into your story of this f-ing disease. I was only dxd with this a year or so ago and I was lucky enough to make it through my young adult years before I got sick. I can't imagine what it would be like to be dealing with this in my twenties, or to be as sick as you've been. Your honesty, your wit, your courage, and most of all your abilty to rock the gown and socks have been a great inspiration to me. But I really ache for you these days and this post broke my heart. You're in my thoughts, girl. Hang tough.

Ellen said...

Hi Anne,

Thank you so much for reading my blog and your kind words. Even though I know I'm not alone with this disease, it's easy to forget in times like these, you know? Again, your message made me smile on a day that hasn't been so great. Hope you read this message and that you are well.