My name is Sam and I was recently diagnosed with ulcerative colitis in July 2014. Lucky me! I am 25, a recent graduate, and science educator for a small science museum. My diagnosis has changed my life in some unsuspecting ways (I never expected my life to revolve around bowl movements, but here we are!).
Some more about Sam:
I am an outdoor enthusiast and Oregon native. That being said, I do enjoy a good netflix marathon (good thing too, I’ve had more than my fair share since my diagnosis).
A little background info: I was raised by two inspiring people who’s hearts are always in the right place. They instilled in me my biggest values: love, loyalty, a respect and awe for the natural world, and to question everything. Since my diagnosis every one of these values has been tested in inexplicable ways, and it has only been a few (albeit very long) months! I graduated about a year ago, took the winter to play while working at a ski resort, and recently moved to a small town in northern Idaho, chasing love.
Current Colitis Symptoms:
I ignored my symptoms for a shameful amount of time, not wanting to face a diagnosis. In the long run though, denial probably made things worse, and I have a lot of healing to do! I currently go once or twice a day, and usually do not see blood (a very recent phenomenon). I do have some bloating/cramping/pain in my left colon pretty regularly. To top it off every month while I’m menstruating, my symptoms worsen, and I have to really watch what I eat.
I cannot do cow lactose, period. Occasionally I will eat some very, very aged cheese (super low in lactose). I have made a complete transition to goat-only dairy, and no fresh goat cheese. I also cut out gluten for the most part, and the only starchy food I eat is rice. Changing my diet has drastically changed my life! I was food obsessed before my diagnosis, always experimenting with new things. Now, its a few basic staples like goat yogurt, fish, chicken, squash, and almond/coconut everything. I have a relentless sweet tooth, and am always on the prowl for a treat I can easily digest. Coffee has been the most difficult to let go of, and is the first thing I go to when I feel well.
Although I am taking daily medication for my UC, if I deter from my simple diet too often, I begin slipping back into diarrhea/cramping/bloating/bleeding.
My biggest concern is that although my symptoms are mild, I still have pain and discomfort in my lower left colon, and my doctor is saying my blood work still indicates elevated inflammatory proteins.
New to this World!
I had just gotten back from a month-long hiatus from life traveling in France when I decided to face my symptoms. Traveling, although amazing and exciting, is packed full of stressful experiences from jet lag to sleeping on trains. In addition to travel stress, my partner-in-crime had just moved to another state pursuing his career. Before I left for France, I wrapped up an amazing season working at a ski resort, where I regularly pushed my body to the limit, meanwhile living off bad food (I left for work around 5:00am and often didn’t get home until 7:00 or 8:00 in the evening, I quite literally LIVED on that mountain, and ate what it had to offer a poor snow bum: discounted fast food). I personally believe this combination, a trifecta of physical and mental stress, triggered my inevitable flare up. As brutally honest as this sounds, I was all blood, pain, and tears for a few weeks before and after my diagnosis. My GI doctor was as weste rn medicine as it gets, but was supportive enough (side note: my primary doctor was a halfwit. I had actually reported bleeding YEARS ago, which she chalked up to a cut and sent me on my way with the instruction to eat more fiber, knowing full well my family history. I was eager to believe I didn’t have UC, so I didn’t question her diagnosis). Getting into my primary doctor for a referral, then getting into the GI office, then scheduling a colonoscopy took a month. In that month I lost a lot of blood, a lot of weight, and a good deal of my pride. At first, my GI doctor said it looked like I had isolated inflammation in my lower left colon and rectum, and I would likely only have to go on medication for a few months (hurray!). However, after examining the tissue samples from throughout my colon, she informed me I had a good deal of inflammation in my entire colon, and would have to be on medication for the rest of my life. This moment was by far the hardest, and I d on’t think I will ever forget it. This was the moment I finally realized my life was changing forever.
UC runs in my family, both my dad and his brother are diagnosed, and his 3 other siblings all have some form of IBD/IBS. Many of my cousins (all on my dad’s side) have IBS as well. Having a support system who understood my experiences has been a saving grace, but also a terrifying reality of what I have in store for me. I’ve watched my dad go in and out of hospital visits and doctor’s appointments, and on and off some terrible drugs. I watched different doctors tell him his only option was removing his colon, that NOTHING else would work. I’ve seen him tell those doctors how wrong they were and get better on his own, without medication. What’s worse? Watching my dad experience Lymphoma, a known side effect of imuran, the only drug that ever successfully kept him in remission. Now, he is a cancer survivor and has been in remission from his Colitis for almost two years without medication.
There is hope for me in his story, but also terror. I constantly ask myself if I have the strength to tell any doctor their prescribed treatment is wrong. My dad is a peaceful person, whose grace and wisdom has followed him through each trial.
But I struggle every single day trying to understand how my old self fits into the box UC has created for me. Forever is the hardest word for me to digest. Six months ago, forever was a fleeting concept, not even remotely close to belonging in this 25 year old adventurer’s vocabulary. Now, forever haunts me. It follows we around, constantly reminding me with each rumble in my gut: you will always have this. Spontaneous trips are no longer an option, because I have to plan everything down to the T unless I want to pay for it later. Now, normal is the word that doesn’t fit anywhere in my vocabulary.
My biggest questions for my fellow UC’ers are:
When does the acceptance kick in? It’s been about 3 months since my official diagnosis, and every day is still dictated by colitis thoughts. I’m struggling to find the confident, adventurous, driven person I was before my diagnosis.
Success with diets? I have read a lot about AIP, SCD, GAPS, etc. I understand each person is different, but should I dare to hope I could survive without medication by finding a diet that works for me? I hate the idea that I will be dependent on medication for the rest of my days, especially since my prescriptions cost me hundreds (that’s with insurance).Overall, any advice is welcome.
Medications / Supplements:
Lialda (Mesalamine) – 4 horse pills daily (check out the Lialda reviews page on this page)
Slippery Elm (Brand: Oregon’s Wild Harvest) I actually notice a difference with this supplement, even between brands)
Claritin-d(started taking it for allergies and noticed a HUGE difference in my UC when I didn’t take it) I did some research on this, and found similar claims, the general consensus is if it helps, only take it to help reduce flare up symptoms.
written by Sam
submitted in the colitis venting area
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