Welcome to UCVlog.com! Here you will find TONS of information about living with inflammatory bowel disease, an ostomy, a J-pouch, and other bowel diseases. Take it from two young people who have been through it all and aren’t afraid to share their stories.
Laura from Ostomystory recently had a blockage requiring hospitalization. Her blockage was more intense than my last blockage! She talks about what she experienced and how the blockage was cleared. The video is a little choppy, but contains a lot of useful information!
A routine trip to the doctor turned into a drawn out ordeal this past week when a regular 45 minute office visit lasted nearly an entire day. I was sent into a long series of tests and CT scan of my abdomen over the suspicion of another abscess. It would not have been so bad, nor would I have been so impatient, but today I had plans; plans that were interrupted by this unexpected detour in my schedule. Shouldn’t I be used to this by now?
At this point, I should remember to chalk this up to “normal for Nadia,” and shake it off. However, this disturbance in my day not only affected me: I was supposed to be meeting someone for the first time, and I had made a commitment to meet them around noon.
Well, noon was long gone by the time I shuffled my way around the clinic, to the lab, to the hospital, to the waiting room, to drink the contrast needed for the CT scan, another hour wait, and then finally off to radiology. The entire time I was thinking that this was not the first impression I wanted to make today to this individual. A frazzled and frantic rush out of the hospital to my car and finally I was on the highway toward my destination–not bad. I am only about a half a day late.
Better late than never
I guess it won’t matter if I am on time or hours late–I was now on my way to meet a young woman around my age that I was introduced to only through the pages of Facebook. She has Crohn’s disease and is facing possible permanent ostomy surgery, and we had agreed that today we would finally meet face-to-face.
There is always that feeling of apprehension that comes with first meetings and first impressions. Will this be awkward? What will she be like? Will we understand each other? Will we be fast friends?
I didn’t have to worry at all. Instantly, we clicked. We bonded over the mutual understanding of this disease and from all things women our age think and feel about wanting a life outside of the entrapment of all that is tied into our illness. I decided I can’t keep this introduction and meeting to myself. She is someone that I want to introduce to everyone here on the UCVlog.
Why? Because meeting her was like looking at myself. The feelings she is having right now are those that I, and many of us, understand all too well. We are not only in the powerful grip of a disease we cannot control, but when this disease has taken a turn for the worse, the only way to overcome the progression is to take that dreadful step into life changing surgery. Those are the feelings we have when we run out of options. So, with that being said, I want to introduce Jordan.
A brief look at Jordan’s journey
Jordan was misdiagnosed with ulcerative colitis when she was an infant. She was eight months old when she began her journey. It was hard for me to imagine that she has lived nearly her entire life without knowing anything different than this. Jordan had a total proctocolectomy at 11 years old, lived with a temporary ostomy, had takedown surgery to use her j-pouch, and now, 10 years later, is facing possible j-pouch failure due to misdiagnosis and living her life as a permanent ostomate.
This was all too familiar territory for me. I know exactly what the emotional upheaval of being where she is at in her journey feels like. It kept hitting me during our visit that my journey began only a mere six years ago, and I tend to describe events in my life as “before” or “after” getting sick. It was difficult to comprehend living a life where one never knew a “before,” and how long Jordan has been going through all she has to face. She also battles hyperthyroidism and Celiac disease.
Let’s talk poop and life
There is this instinctive part of our human nature, I believe, that instantly connects us with people who are going through similar physical and emotional circumstances. That connection increases and becomes stronger when one can recognize and empathize with someone sitting right across from them who just “gets it.” Those that have gone through this know that facing permanent ostomy surgery is not an easy place to be. Some of us are thrust into this because there is no other choice: it is a life or death situation. Others are faced with this because the alternative is a depleted quality of life; again, there is no other choice.
No matter what, this feels like one of the most difficult situations to be in. The anxiety that accompanies surgery is off the charts; all the questions, all the what-ifs, the “how will I live the rest of my life this way”, and the big one: why me? The list goes on and on. Meeting someone who you can confide in and talk with candidly over topics that otherwise would not be discussed in casual company is an invaluable gift. There is no shame and no topic is off limits. Truth be told, I RARELY EVER show anyone my ostomy/appliance. Well, with Jordan, there was an understood, no holds barred rule, and before long we were comparing scars, I was flashing my ostomy bag, we were openly talking about poop and how we are learning to accept this fate.
Aside from the obvious topics of poop, intestinal troubles, ostomies, and j-pouches, topics such as: dating, college, employment, our futures, and living life independently were talked over in great depth with laughter and a few tears. It was as if Jordan and I had been friends for so much longer than just a few hours.
We find strength in numbers
There is immense value that comes with identifying others who do know and do understand all the ups and downs you are going through. I have the honor of having met so many others out there who do get this. I wanted Jordan to know and understand that she is NOT alone. There are so many groups, individuals, and friends that have impacted my journey. I have passed those all along to her, so you may see her from time to time on our page as well as others. We all benefit from support and share a common link that has brought us here.
It is an even rarer gift to have the pleasure to meet ostomates, j-pouchers, and IBDers face-to-face. I had this happen a few times in my life, and all of you online have impacted my life in a thousand positive ways. These are relationships and friendships that have made this unpredictable, painful, and crazy journey so much more bearable. I hope that I can make that same impact on others too.
It feels comforting to me that my journey through illness is not without reward. Taking this negative and trying to do something positive helps me on my path to acceptance. I have been trying to understand that everything happens for a reason, and the friends we meet along the way become the silver lining on dark cloudy days. Thank you to Jordan, and all of you, for being my silver lining.
“We enjoy warmth because we have been cold…We appreciate light because we have been in darkness…By the same token, we can experience joy because we have known sadness…” Unknown
Share a story about someone you have met through your journey with IBD that you feel understands everything you are going through. It can be someone you met online or in person.
Nadia and I get asked a lot about drinking with IBD: can you drink? How much? Can you drink after surgery? Questions you’ve likely asked yourself at one point.
Sara gets those questions a lot, too, and has a great video here sharing her perspective. Basically: if drinking doesn’t cause you any problems, have at it. If it bothers you, don’t do it. Simple as that.
Question: What are your thoughts and experiences with alcohol and IBD? Share your story!
Ostomy Lifestyle, a UK-based charity for people with ostomies, has excellent and inspiring videos about life after ostomy surgery.
Paul, 45, suffered from Crohn’s disease and now has a colostomy. In this video, he talks about his return to basketball, and how his ostomy allows him to live normally again.
Bo Parrish, a semi-professional triathlete, writes today’s guest post. Bo has made incredible strides in overcoming Crohn’s disease and surgery, and his story is very inspiring. Check out his website at Change Your Mind for more info!
Allow me to encourage you to alter your vocabulary in the slightest of manners. Rather than asking yourself “why” finish the thought with “why not?” If it’s one thing that a near death experience taught me is that “now” is all I’ve got!
I believe in my heart that human beings were created to thrive not simply survive. My life is a prime example of this observation and my only regret is that it took so long for me to discover. If there is one thing in your life that is keeping you from thriving, let me assure you that it is YOU. I understand that this is a tough realization to come to, but I offer my story as proof of this conviction….
I was diagnosed with Crohn’s Disease at the age of 13. My life became a vicious cycle of fever, weight loss, anemia, stomach pain, chronic diarrhea and bone loss. I missed out on my life as a carefree teenager and adventurous college student. My days were spent in hospitals and sitting outside classrooms in fear of the next inevitable trip to the bathroom. Surgery was recommended on multiple occasions but I resisted. As devastating as the pain had become it was familiar and therefore predictable. Surgery was out of the question and I willingly continued on my pathetic path.
In 2006 my large intestine ruptured and my decision for surgery was stolen forever. If I wanted to continue living, I had no choice surgery was the only option. Miraculously, the last 7 years have been nothing short of incredible. Not only have I made a full recovery and embraced my life with an ostomy but have reached the pinnacle of physical fitness. To start, I married my marathon coach and wife of my dreams. I have become a semi-professional, nationally sponsored triathlete and runner and have had the tremendous honor of building a platform creating awareness for an organization that I owe my life too. My personal vision now is to encourage and inspire others too see change as a blessing and not a burden. If I could have known how great life could be on the other side of surgery, I would have volunteered for it rather than resisting it.
If there is anything I would hope that you glean from my story is that anything is possible so “WHY NOT” do something about it today!
Ostomy Lifestyle, a UK charity for people with ostomies, always has inspiring videos. In this video, Michelle, a 27-year-old with ulcerative colitis, talks about her passion for triathlons, and how she manages them despite having an ostomy.
It sounds like she was an athlete when she was diagnosed, so she didn’t want the ostomy to stop her from doing what she loves. But don’t think you can only be a triathlete, or any kind of athlete, if you had the skills before being diagnosed. I’ve known many people who were never physically active before surgery, and after their surgery they go on to complete amazing feats, like running a half-marathon for the CCFA’s Team Challenge program.
What’s great about these sports stories is that they show that with dedication, perseverance, and a little luck, you can do quite well after surgery.
FAPulousTV posted this excellent video about weight fluctuations following J-pouch surgery. Nadia and I have talked about our weight here on UCVlog before, and how often with IBD your weight can fluctuate up and down based on many factors, like flare-ups, poor nutrition, side effects of medications, surgery, and more. This woman provides another perspective. Even though she doesn’t have IBD (she has Familial Adenomatous Polyposis), her experience might be similar to those of you who’ve had surgery.
One of the very relatable points she makes is that sometimes it can be joy to gain weight, even though weight gain is usually something people want to avoid in our culture. I think many people with digestive diseases realize the importance of having a healthy weight.