Ostomy Awareness Day!

2014 I was diagnosed with Crohn's disease and started the biologic Remicade every 6-8 weeks. I've never had the “usual symptoms” that most Crohn's patients have, but 5 different GI docs I've seen say IBD (the first NP said Ulcerative Colitis). 

December 2018 my colonoscopy showed no active Crohn's and things were looking good! 

I switched insurance providers for 2019 to save some money. I had to go to a less reputable place for my infusions for my old insurance to save them money and they dropped the ball getting my pre-authorization going. My next infusion wasn't until May of 2019. I started getting weird symptoms like more sores all over my body. At my next infusion they wanted to hold off until I saw my doctor. I ended up going to Convenient Care and they started treating it like it was MRSA, but never tested me for anything. I was given antibiotics and flagyl. My feet got super swollen and my GI doc thought it was from the flagyl and put it on my allergy list. I resumed my infusions and was referred to a dermatologist for my sores. She said they were just folliculitis and to take bleach baths every once in a while... The end of September I started getting a little cough. I had my last Remicade infusion in October. In November I still hadn't shaken the cough and it had gotten worse and I kept getting pain in my sides. I went to my family doctor and she gave me antibiotics after seeing my chest xray. After finishing them up I had a repeat chest xray and was admitted to the hospital for pneumonia. While there they found a giant mass and 3 smaller masses in my right lung. Turned out to be just inflammation (no cancer) and they have since shrunk down and gone! I finally got the all clear from the lung and cancer docs to resume my Crohn's meds in May 2020. 

However, when I saw my Indiana Colon & Rectal specialist (who I had been seeing as needed since 2014), she recommended with her heart of hearts (her words) that I get a temporary diverting loop ileostomy. I cried and she explained that she thought it would help my bottom heal faster and better. I had the surgery on June 12th. Two weeks later I started a different biologic, Entyvio. I just had another follow-up last week (3.5 months post-op) and she said my bottom looked 50% better!!! I still have more healing to go, but I'm on the right track! 

Today is Ostomy Awareness Day! Back in May while trying to decide if I should get an ostomy, I asked in one of my fb groups if anyone had any experience with a stoma. A couple of people messaged me, but one person definitely stood out! She had exactly what I was getting and had it since she was a teenager and now was in her late 20s and had young kids! I'm so thankful that I found this person!! I found out there is a support group that meets at the local library, but haven't had meetings since Covid. But I did find a global support group on facebook that has 14K members in it!!! I can't believe there are so many people out there like me! I've learned a lot from that group!! 

So there you have it folks! I haven't told many people about my surgery, but in honor of Ostomy Awareness Day and seeing how it has saved so many lives, wanted to share my story! Difficult choices don't come easy, but I'm glad I made this decision. Be it temporary or permanent, things are going much better with my disease! I find ways to make it more enjoyable I guess you could say, by wearing cute bag covers sometimes and making lighthearted jokes.