The Mental Battle of Ulcerative Colitis

Here’s Kayla high up on the mountaintop!!!

Meet Kayla:

My name is Kayla, and I’m 25 from the Bay Area, CA. I’ve had UC for about 11 years now, and what a journey it has been – much of the struggle just against myself! I’ve lurked here quite a few times over the years, but felt the urge to finally introduce myself today. The physical side of my UC is still a work in progress, though I’m at a much more optimistic place these days, but I also think the mental side isn’t talked about enough on here. I’ve definitely developed some very specific anxieties due to my UC because of my symptoms during flares, but I’ve also gone way out of my comfort zone in spite of my UC – because I refuse to let it stop me from experiencing life the way I want to.

Some more about Kayla:

I’m definitely a homebody, and spend much of my non-working time doing all I can to avoid doing much else besides reading, listening to music, and messing around on the internet. On the other hand, travel is the great love of my life thus far, and for as much Bathroom Anxiety as my UC has given me, it has also made me very good at compartmentalizing my suffering so that I can enjoy the moment!

I’ve managed to spend a cumulative 5 months traveling to 12 countries over the past 5 years, and even while in a bad flare it was always an amazing experience. Recently, there was a thread on Reddit asking about “People who have sh*t themselves during their adult life, what happened?”, and most of the stories made me laugh – because these people just don’t know what we UCers go through, and how normal it becomes to get over an incident like that 5 minutes later! On one of my trips, the urgency pushed me over the edge 20ft. from a train station bathroom – so I threw my underwear away, and moved on with my day!

In hindsight, I think one of the most important lessons traveling with UC has given me is to just do it anyways, because when I look back on those memories I honestly rarely think about moments like that train station incident. Instead, I remember drinking hot wine at a hilltop café in Prague, or the amazing views on a bus trip through Slovakia (which, to be honest though, was a 4 hour bus trip in which I didn’t even have a sip of water for fear of waking up my digestive system, because this bus definitely didn’t have a bathroom, and there were no stops…but still!) – and I’ll always be thankful that I didn’t let my fear prevent me from living.

Colitis Symptoms:

My current hurdles are not necessarily direct UC symptoms, but problems that I have to overcome because of my UC. The main one is my anxiety stemming from the urgency during flares. Even now, I won’t go through a drive-thru window (not Fast Food, don’t worry – just when I pick up coffee/tea) if there are other cars in front of me, because if I do I immediately feel trapped. Similarly, its extremely hard for me to be a passenger in anyone else’s car (unless it’s family, or one of my close friends) for the same reason. I think the most difficult part of this anxiety is that it’s not baseless, so I can’t really tell myself “It’s all in your head” – because when I’ve been driving before, I’ve had to break some traffic laws to get to a gas station bathroom in a flash, and I can’t do that if I’m in a random acquaintances car, or stuck between two cars in a drive-thru line with no escape.

For a long time, I would just try to force myself into situation that I knew would make me anxious, as some kind of prescribed exposure therapy. At the beginning of last year, I signed up to be a driver for a service that was basically “Uber for Kids”, specifically to try and overcome my discomfort with being “trapped” in a situation (because I couldn’t pull over to a gas station with some stranger’s kid in my car), but it really didn’t help. Now, I’ve pretty much decided that putting that extra stress and adrenaline into my system is just not worth it, and I just try to not put myself into those situations for no good reason!

Mental Battles of Ulcerative Colitis

I had my first flare in my sophomore year of High School, and I (and my doctors) had NO idea what was going on. I had to leave school for a couple months, was put on antibiotics and all manner of random drugs before I finally had my first colonoscopy about 5 months in. Was diagnosed with Ulcerative Colitis straight after that, and put on my first round of prednisone (and sulfasalazine). It was just the beginning, because I was an idiot teenager who really didn’t understand the significance of the diagnosis at all.

For years I would go on and off of my meds willy-nilly, have flares multiple times a year (usually I would just try to ignore it, start my sulfasalazine again, and wait for it to end – but a handful times went back on prednisone), and didn’t ever do anything to change my diet at all. A few years ago, after going on my meds yet again, I had some kind of bad reaction to my sulfasalazine, and decided I wanted to switch to mesalamine (Apriso) – and decided that I was never going to stop taking my daily meds again. I would still get month-long flares a few times a year, and I still did not change my diet, but I’d convinced myself that I was handling it well enough.

Then in the Fall of 2015, I was in bad shape. Had been in a flare for a couple months, and it wasn’t going away this time. I was having the full gambit: 10-15 times a day with urgency, extreme nausea from gas pressure every single time I used the restroom, blood, mucus, etc. – and all while I was trying to work a high-pressure job with it’s own stresses. I had a colonoscopy in October 2015, and was put on Prednisone again straight after. Except this time it didn’t work.

I was on 40mg/day for nearly a month with zero improvement, so we upped it to 60mg/day, which I stayed on for almost two months before I started tapering down. I’d never had symptoms during my previous Prednisone rounds before, but this time it was a LOT. Bad acne all over my forehead, and major insomnia – I would sleep for a few hours at most, and then be wide awake at 3AM. And a couple months later, after I had finished tapering off, I was losing chunks of hair every day – which sounds superficial until you go through it, and it turned out to be one of the few UC-related experiences that made me break down crying in the shower.

Still in the midst of a never-ending flare, but done with the Prednisone, I changed insurances and had to go to a new doctor, who put me on 6-MP, which was the worst mistake so far. I couldn’t work anymore, it didn’t help my symptoms, and it literally dropped both my white and red blood-cell levels to nearly zero. It was the weakest I’ve ever felt, and I will never be happier than the day that my grandmother (who I had to move in with after I couldn’t take care of myself anymore) threw those pills away.

Six months later, and I feel like a new person! I still have about 1-2BMs a day, sometimes 3 if I have coffee (which I’m still trying to quit), and some discomfort every now and then, but I’m miles above where I was. I’m sticking with my Apriso still, but am additionally taking fish oil, Vitamin-D, Iron (as I became anemic again last year), and a liquid probiotic (20 billion culture) after every meal. I want to switch to the VSL-3 probiotic, as I’ve heard great things about it, but it’s so expensive!

As for my diet, I’ve finally turned that around and cut out 95% of things that I’m sure were hurting me greatly: no more soda, no more Venti Frappaccinos, no more fast food, no more sushi (which I miss the most, but what can you do). On top of that, I’ve made sure to stop eating things that, though they may be healthy for normal people, really mess me up like: tomatoes (which I used to eat at least once a day, in one form or another), spinach, and most raw veggies/nuts. I eat a LOT of white rice, cooked carrots/sweet potato/brussel sprouts/cauliflower, usually lamb or beef, and sourdough bread, eggs, and avocado every day. I also love sauerkraut, and recently found kimchi at my local grocery store and have been mixing that in with my rice – yummy!

Medications – Treatments

Mercaptopurine was a horrifying experience for me personally, and I’m certainly never making that mistake again! As for prednisone, I honestly don’t think I can ever take it again – and not because of the side-effects, but because it doesn’t work anymore. I know it’s possible to build up a resistance, and my body certainly must have done that if 60mg/day was barely making an impact. This last time it was so hard on my body, so much so that my skin and hair is still recovering a year later, and I don’t think it’s worth it anymore to go on.

written by Kayla S

submitted in the colitis venting area




9 thoughts on “The Mental Battle of Ulcerative Colitis”

  1. Thank you so much for sharing your story, I was all diagnoses in high school and your story reads a lot like my own. I didn’t have any regard for my illness as a teenager and it wasn’t until recently that I’ve found myself in a flare that has completely redefined my life. I’m 21 now and I’ve always dreamed of traveling but I’ve had to given up many opportunities because I was too sick or too scared to go.
    The UC community is great for people to share their stories but I often found myself not relating to a lot simply because of my age and how that has shaped my uc experience, but your story really hit the nail on the head for what life is like as a young adult with an illness. You learn to deal with things that make others around you laugh at the thought of happening, like having accidents almost constantly. But as you said, you throw away your underwear and soldier on.
    Thank you for sharing

  2. Wow Kayla you have an excellent outlook and working hard to feel better. I have uc since age 18 and now am 62. You have motivated me to stop not doing things due to fear or what ifs! Thank you for your inspiring story and diet ideas etc. I hope the next 6 months find you even better.

  3. Thank you for sharing your story Kayla! My son who was diagnosed with UC last September, is about to go off to college 1,000 miles away from home. I think I am more worried about it than he is! Your travelling story is inspirational. He is ready for something new in another part of the country so I will try to chill out and let him have his experience!

  4. Wow, know what you mean about the whole car thing, that is exactly me too, and even the putting myself in situations that make me anxious as some type of therapy, lol. I have had UC for 5 years now and traveling again, first plane trip is coming up!!!

    Best wishes to you, thanks for the lol:)

  5. Thank you Kayla for your inspiring story. I have had UC since about 13. I am now 51. I have went years without a flare. That started to change in 2012. My flares became more frequent. On April 23,2017, I was admitted into the hospital for colitis. An antibiotic I was on brought on this flare. I have never had a flare so bad ever. I got more sick while in the hospital. I do not take medication unless completely necessary. I was given cipro and flaygl which made me extremely ill and thrush in my mouth and throat. I ended back at the emergency room that following Sunday with severe neausea. Luckily I had a great doctor who helped find a medication more suited for me. Keflex helped clear the infection. Because this battle is new in the sense that I have never been this sick before I am trying to figure out what foods I can eat and the one’s I can’t. Your story will inspire me to keep moving forward to win this battle.

  6. Thank you Kayla for sharing your inspiring story. My 16 year old son has been battling UC for 2 years and has been off and on Prednisone despite being adherent to his Humira and then Entyvio. He is currently in a mini-flare again, but we hope we can find that balance between diet and meds so he can avoid Prednisone again–it really is a horrible drug for the body, mind and spirit.
    All the best to you!

  7. Hey Kayla, I love learning about others in the Bay Area. I’m in West San Jose. Like others have said above your car situations are so dead on it’s really laughable to us with UC. I can relate to 60mg to predisone and all the fun that comes with that “miracle” pill. Not sure how acne, hunger, insomnia, gaining 30 lbs is good when I still have flare ups. Silly doctors. I committed to SCD for awhile and then have been in denial about getting back on track.
    Thanks for the time you spent sharing your story. I swear one day I’m going to contact Adam and share my own. I’m off to drop off a stool sample to make sure my CDIF hasn’t came back for the 4th time. Fun!

  8. Thankful that I stumbled across your story! I’m currently in a flare after several years of remission, and not handling it well. It helps so much to read about others’ experiences. Thank you for sharing!

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