Category Archives: Guest Post

Journey to getting an ostomy and back

I know there are many out there for whom an ostomy bag is only a temporary stop of the journey. That’s why I’m so glad Lindsey is willing to share her story about living with an ostomy bag and now having her colon reconnected.

Lindsey’s story

I will never forget the day that my doctor looked at me and said, “Lindsey, I think it is time that you consider getting a colostomy bag”. At the time, I had been diagnosed with Crohn’s Disease for 13 years. Sure I had flares, it comes with the territory. But never had I flared this badly. After trying a last-ditch effort with more steroids and other medications, I was sent to a consultation appointment with an Ostomy nurse. That day was a game changer for me. I saw my first stoma and it began to set in with my “practice bag” that part of my insides would soon be on the outside of me. My mental health was spiraling downward with my physical health.

I was literally devastated at the scheduling of surgery and I had no idea how to process what was going to happen to me. I was not involved with any support groups and didn’t know a soul with any sort of diversion bag. Feeling very much alone, coming to the decision to get my ostomy bag was one of the biggest battles with myself to date. I had full support from my husband, family and friends but I just couldn’t shake the thought, “Who would ever elect to poop out of their belly?” I felt that no matter what my decision was – bag or no bag – I would have always wondered what would have been if I had chosen the other choice.

Lindsey Russell colostomy jpouch crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colon

But for me, I eventually got the other choice. On February 9th of this year, I had my ostomy bag reversed. What was the one thing that I was most excited about you ask? Well, farting of course! I actually asked my doctor after surgery when I will be able to trust a fart again. He laughed and reassured me that in time, it will come. In a way, I underestimated the reversal surgery. My rectum was very malnourished from not using it for almost two years. Some of the symptoms that I experienced were rectal spasms, urgency, multiple trips to the bathroom, anxiety over leaving the house and pain at my incision sites.

Lindsey Russell colostomy jpouch crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonBy the time I had my reversal surgery, I had three major abdominal surgeries under my belt with not a single complication. This time was different. One of my incisions became infected and it resulted in a trip to the trusty ER. They had to re-open parts of the incision site which resulted in two open wounds. Both open wounds needed to be packed with gauze twice a day. It by far was not my favorite thing in the world, but slow and steady wins the race. Although we were seeing progress with the infection and healing of the surgical sites, I continued to lose a lot of blood and my persistent symptoms didn’t let up.

Confused as to whether to get my GI back in the game… or stick with my surgeon’s advice, that all of these symptoms were normal… I went with my gut. All it took was one phone call to my favorite nurse and an honest conversation about what I was experiencing. My doctor at the University of Michigan got me a record-breaking colonoscopy date within a week. Sadly, he found ulcers and a narrowing in the intestine, and also discovered that the last 25 cm of my rectum/colon are severely inflamed with active Crohn’s. I began to go all the way back through the grieving process. This reversal surgery was supposed to be a good thing and we were all convinced that I was healthy enough to go through with this. No one could have ever predicted what cards were dealt next. Now my Crohn’s is back full force and I am trying to navigate my way through this winding journey. I don’t know what the future holds for me or my bowels but I do know that if one day I end up with my colostomy bag back, it won’t be nearly as hard as the first time. In fact, I might actually welcome that trusty bag!

Lindsey Russell colostomy jpouch crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonLooking back on my nearly two years with my ostomy, I wouldn’t have changed it. Although it was a literally a life changer, I was able to meet some of the best people who are currently in my life. Having my ostomy opened doors and allowed me to grow as a person in ways that I would have never dreamed of. My desire to help others, especially those with IBD is so strong that I can feel it in my bones. My husband and I started a Facebook page to help patients and their caregivers who deal with IBD. We believe that education is power and that this silent disease deserves a voice!

Always know that no matter what hand life deals you, you will come out the other end stronger and wiser for have lived through it. I look forward to seeing where life takes me next!

You can find Lindsey on her new Facebook support page: A Semi Colon Life

#OstoMYstory

My ostomy became my blessing

Philip’s story

I recently passed two important days in my life, not the most important, but important nonetheless. One was on November 14th. That was my birthday. I turned 39 and the countdown to 40 has officially begun. The other was October 4th, which was the day I had what was essentially life-saving surgery that forever changed my life in so many ways.

I was diagnosed with Crohn’s Disease in middle school. I fought off-and-on battles with the disease throughout middle school with many different medication, treatments, etc., with not-so-nice side effects. In high school, I was fairly fortunate because the disease went into remission and I was able to enjoy most of my high school years free from any major flare-ups.

That was definitely the calm before the storm. Shortly after graduating from high school, the disease came back with a vengeance. The Crohn’s began manifesting itself in ways that are not very appropriate to be detailed about. Over the next two years, my physical pain and malnutrition had increased to the point where my life was confined to a bathroom or a bed. I had lost close to 50 pounds in the span of about six months. I was dying.

I would have died had it not been for God’s kindness to me in giving me a mother who refused to bury her son and a doctor who pointed us in the right direction. Long story short, the only way to save my life was to remove all of the organs that the disease had ravaged. Therefore, on Friday, October 4, 1996, I had all of my large intestine removed (along with a few other things) and woke up from an eight-hour surgery with a permanent ileostomy. Although things didn’t get immediately better because I was so sick going into the surgery.

I stayed in somewhat of a remission for the next 10 years. Then in 2007, the disease returned and I had a second surgery to resect a small part of my small intestine and relocate my stoma. By God’s grace, I have been in remission since then.

Philip Blinson crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonAs October 4th came around a few months ago, I realized that in two years I will have lived as long with an ostomy as I lived without one. That realization led to me thinking about the past 18 years with an ostomy and my battle with Crohn’s. And somehow I stumbled upon the #ostomy and #crohns hashtags of social media. You have to remember that eighteen years ago there were no Facebook or Twitter or Instagram. As I searched #ostomy and #crohns, I found this world of people of which I am a part. I think seeing their statuses and pictures gave me the courage to post one of my own. So, I posted this picture on Instagram with the following: “My every-four-day routine for the past 18 years. Hard to believe that in only two years I will have lived life with an ostomy for as long as I lived without one. It has been a blessing of eternal proportions. It has been God’s kindness to me.” I believe every word of that post.
Continue reading

Double trouble

profileI am so excited to have the fabulous Thaila Skye as a guest poster for OstoMYstory! Thaila is an amazing advocate for ostomates. She had surgery in 2010 and later started blogging and has a very active YouTube channel with tons videos on living with an ostomy, reviews of products, as well as talking about health and fitness. Her OstoMonday series is great! (Links to everything below.) So thank you, Thaila, for sharing your story on The Stolen Colon!

Thaila’s story

Having a stoma can be difficult at times. But having two stomas? Yep, that’s definitely twice as complicated.

I remember when the stoma nurse visited me before my operation, where they prepare you for what’s going to come. “You might wake up with one bag, you might wake up with two, we just don’t know yet.” Great, that’s exactly what a 24-year-old woman wants to hear. She marked X on my right-hand side, and then another X on the left-hand side. Y’know, just in case.

I woke up in the recovery section of the colorectal surgery ward. It wasn’t just one bag. It wasn’t even just two bags. When I looked down under the sheet for the first time, it was like I was hooked up to the Matrix.

thaila ostomy bagsI had:

  • an ileostomy bag
  • a colostomy bag, just for the mucous in my remaining colon (known as a mucous fistula – how very glamorous!)
  • a huge dressing covering the 16cm laparotomy wound
  • a drain for where my colon had perforated (the reason for my surgery in the first place)
  • an indwelling catheter
  • a morphine drip (temporarily the love of my life)
  • an oxygen tube down my throat

Continue reading

Fighting the fight

Andrew’s story

When I was first diagnosed with Crohn’s in 2007, I wasn’t worried. Maybe it was the “always fight for what you want” mentality I was raised with. Maybe I felt like I had an advantage as I was dating a really cool nurse at the time (my now-wife, by the way). Maybe it was ignorance. In hindsight, “all of the above” would be the best answer. Regardless, I would fight.

My diagnosis came during my freshman year. I was a Music Education major and a member of the ECU Drum Line. I was taking more classes than I could manage and spending every waking moment occupied with music, sports and having fun. Life was a bit stressful, but extremely enjoyable. I was able to maintain my symptoms for a few years. I fought.

Things suddenly changed in the summer of 2011. I had a sharp pain in my abdomen that caused me to miss a week of work. I had lost 20 pounds within 2 weeks and I had no idea why. My medicines didn’t change, my diet wasn’t altered, I was still inconsistently active. My now-wife and I couldn’t afford the expensive biologic treatments that were recommended, so I started on a combination of Tramadol and Dicyclomine. This helped for a short amount of time, but I knew taking painkillers just to get through a normal day was in no way a long-term fix. I adjusted to what would be my new “normal” and continued the fight.

Fast-forward 18 months – I had graduated and gotten married. Everything seemed like it had changed, except for the hell I was going through with my disease. At this point, I had already failed Cimzia and decided to switch doctors. I began Remicade treatments and felt better for a few months, until I slipped back to reality. Next it was Humira, paired with Mercaptopurine. Again, I felt great for a few months until I fell back to “normal”. I was still fighting.

Andrew-Boyd-hospital-ostomyI learned at that time that everyone has a breaking point. Just like in battle, you get to a point where you are tired of the status quo for fear of losing. Up until this point, I didn’t think I could lose. I was fed up and tired of just maintaining the current symptoms. I wanted better. I wanted the pain to be over.

I still remember the day I decided to go through with the surgery. It was January 2014. If I wasn’t firmly planted in the real world before, I definitely was at that point. I had obtained licenses for work as a Financial Advisor, had purchased a new home and truck the previous summer, and had a new puppy. I was tired of what I thought was my “normal”. I was tired of having to know where every single restroom was in every place we would go. I was tired of being limited as to what I could eat and having it dictate where I could eat. I was literally tired of being malnourished and watching family and friends be able to enjoy activities that would leave me exhausted.
Continue reading