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

7 thoughts on “Journey to getting an ostomy and back

  1. Vickie Homelvig

    I was diagnosed in 2010 with stage 3 anal-cancer took chemotherapy and radiation for 6 months, my doctor said it will never come back but in which 2011 Halloween I had the surgery to get the ostomy bag . in 2012 when back to surgery for a hernia surgery because she did not in force the wall . in 2013 back to surgery for the removal of my tail -bone due to cancer. in October 2014 one more surgery due to cancer. now in 2015 I have a blood clot in my left lung.
    Vickie Homelvig

    Reply
  2. Lori Russell

    I was diagnosed with Chrohns disease at 17, at 22 i ended up with a perforated bowel. After 9 hrs. In surgery my family was told i wouldn’t live through the night. God had other plans I had a temp. Colostomy for three yrs. After it was reversed Iwas ok for 8 yrs. My symptoms returned like a bangee and I asked for an illeostomy best decision I ever made. I am healthy been married 15 yrs. and wouldn’t want it any other way, ostomy is a scary word for some people but for me it was worth it with less bathroom runs, steroids, and endless stomaches. I hope my story helps people deal a little easier about having an illeostomy. Good luck and God Bless.

    Reply
  3. Amber

    A friend of mine is having an ostomy next week but unfortunately for her it’s going to be permanent as its not for crohns it’s for stage four cancer that and another surgery are her only hope for survival as chemo and radio did very little.

    Reply
  4. BG

    Lindsey and all of you who have been down this road more than once,
    My story is similar to some of those I’ve read here. I had UC, not crohns, that developed cancer after 15 years. I had a full colectomy and left the hospital with an ileostomy in July of 1997. My doc was a leader in performing a “J-Pouch” procedure, and a little over a year after my colectomy, I started the process that would lead to the reversal with a “J-Pouch”. The surgeries were tough, and the pouch did not perform as advertised. Frequent irritations and infections prompted the overuse of antibiotics, and it appeared I had introduced unnecessary complications into my life. Almost 8 years after the reversal, the very small area of colon that still remained in me, for the purpose of connection, also developed cancer. When my doc offered solutions that would still allow for a reversal, I was confidently able to refuse in a heartbeat. The second time around was not at all daunting, and recovery and life since have been great (10 years this December).
    Just thought I’d offer my story as a testimony to support anyone facing this surgery. You will hopefully find that the days in your recent past will soon fade from your memory when you start to experience the new chance that awaits you. An ostomy is often a way to extend your life. Even more amazingly, if you are flexible and determined, you will get your life back.

    Reply
  5. Cindy bonnet

    I have stage 4 colon cancer. I’ve had an iliostomy for 9 months. Chemo has been working and right now I’m disease free. My ostomy is a pain sometimes, but seldom leaks anymore. I’m concerned about when to reverse the ostomy. I’ve read a lot about people having complications with the surgery. I have diarrhea a lot, but with the ostomy, it’s no big beal. Do I risk it and have it reversed. Does anyone know the % of reversals that have complications?

    Reply

Sit down, stay a while. I'd love to hear from you.