I am a 28 year old female, known as the Travel Bee with UC! I am generally very active and full of fun, enjoy taking adventures and getting lost! I was diagnosed with UC November 2013 after a colonoscopy. History of IBS, Melanoma.
some more about me:
Grew up in lovely Northern Nevada-Lake Tahoe/Reno area. I love my job, as I get to travel both domestic and internationally. Love to travel even when I am not traveling for work, snowboard, volleyball, hiking, snowshoeing, cycling, wine tasting, crafts, MUSIC, enjoying doing nothing with the ones I love, and just being in the great outdoors! It has been a true test this past year, learning to live with the symptoms of UC and still being able to do the things I love.
My UC flare Playlist-for times when you just cannot leave the house: to only name a few…
Don’t bring me down -ELO
Float On-Modest Mouse
Good Vibrations-Beach Boys
Pretty much any Enya song
Tub Thumpin-Chumba Wumba
Time to Say Goodbye-Sarah Brightman, Andrea Boccelli
Any and All 80s songs…
Currently moderate to severe flare ups once a month, generally around my menstrual cycle.
2-5 BMs per day on average
blood/mucous in stool at least once a week
Severe gas and gas pains in the morning
Travel Bee with UC
I have had a history of IBS since I was a kid, but always knew what would trigger certain IBS episodes. It wasn’t until my girls trip to St. Maarten last year that I got a glimpse of what my life would be like from then on.
I hadn’t been feeling to great in the gut for a month or so starting in May 2013, after a lot of travel. Not only do I travel about 80% of the time for work, but I also use my free time to travel too, so I am rarely at home and haven’t had any sort of routine in about 3 years. I had already been to Maui, Vietnam and 6 different states the first part of the year, and now it was time to really party and have some fun in St. Maarten in September. On day two, after a full day of drinking, soaking up the sun, snorkeling and swimming, I knew my body was exhausted, but wasn’t prepared for the symptoms the next day. I got a severe stomach ache and was in the bathroom about 4 times, then it proceeded to get worse the next few hours, it was even painful to get up or move, I felt like my intestines were screaming at me, using the bathroom about 13 more times that night. I took it easy that night to prepare for the next few days on a boat (oh yay, first UC flare, in the Ca ribbean, on boats…how ideal!! Thanks Universe..haha) So I prepared my body for the next several days, not eating, and only drinking water and taking Imodium and some IBS pills I had thankfully brought. It clogged me up for the rest of the trip. When I got home I immediately went to the Urgent Care, where they ordered numerous blood tests, and a stool sample. Everything came back fine, they just found a little blood in the stool. After about a month of blood work and finding a primary doctor, she recommend I get a colonoscopy, which I couldn’t get scheduled until the day before Thanksgiving (good way to clean out your system for a T-day feast I might add). In the two months while waiting for the colonoscopy, I had traveled to Turkey to visit my boyfriend, and about 4 other states, still not really giving my body much rest.
Colonoscopy showed Moderate to Severe UC, the started me on Asacol and 40mg of Prednisone (I didn’t start taking the Asacol right away due to some insurance issues) but man, I was feeling SO great on those steroids, I could eat again, drink my wine, and be social! I started taking the Asacol about a month later then had to switch to Lialda because of insurance. So now after the slow taper off the steroids, I was feeling ok, until New Years Eve. I decided I could handle Hot Toddies on NYE, but think I over indulged. I flared the next day, this time with really bad diarrhea that had no signs of giving me a break. I called the doctor and he told me to up my Prednisone back to 30mg and to add another Lialda (four per day now). I felt ok, but after another couple days, I still wasn’t feeling well and made an appointment. I saw a nurse practioner, and she seemed more concerned than my GI doctor did. She wanted me to get better and get off Prednisone, so she had me start t o taper off and made me do the Mesalamine Enemas for four weeks. It finally stopped the diarrhea, but after about 3 weeks of the enemas, I felt like it was just making me more sick to my stomach, massive, painful gas bubbles, and constant urge to go to the bathroom after every meal, so I stopped.
From January until now, I have seen my GI about 6 times, I feel like he doesn’t do anything but give me more pills to try, he doesn’t ask me any questions or give me any guidance, or even tell me what these meds do, I am constantly having to dig and ask him for more information. I seem to have a flare up once a month, some lasting a few days, others lasting a few weeks. I do notice that I tend to have flares closer to my menstrual cycle, strange?
I have tried increasing the doses of Prednisone and Lialda the past several months, but still the same flares occur.
Two weeks ago he decided to put my on Imuran, the immune suppressor, yay. He said to watch for symptoms the first 6 days, so I did. I felt OK the first couple days, then after a night of drinking some wine with my friends and my time of month approaching, I had a very bad flare, while in the wine country of all places! In the meantime, I started to develop a sore throat, but no fever, yet. By day 7, I was weak, had body aches, bad sore throat, ear pain, etc. So I called my doctor and told him my symptoms, and he asked if I had a fever, I said no, and he said not to worry then. The next day, I knew I had to get to the ER, the fever was here. My GI doctor told me to go and get checked out and an Xray, and to stop the Imuran immediately.
So a double ear infection, bronchitis and same UC symptoms later….here I am, back to square one with my UC. I lost hope for this new medication, I really thought it would work, but I don’t think that having a low immune system is going to be worth it. I travel a ton as it is, and it is easy for me to catch a cold when I travel, and are the other side effects worth it? One of the side effects is Melonoma/Lymphoma, and FUN FACT, I had Melanoma when I was 24….so are my chances of it returning greater if I try Imuran again?
I have an appt with my primary doc tomorrow to discuss Anti-Anxiety meds, as I also notice I get sick and cramp up with stomach stress when I travel. Hopefully a chill pill may relieve some discomfort or even distract me from the stress. I have a GI appt after that, to see what kind of new drug he wants to try on me next.
I am almost to the point of looking for another job to have some type of balance and routine back in my life, constant travel does take its tole on the body and I do notice that when I am at home, I feel a lot better and more in control of my diet, as it gets SO hard to make healthy choices when I am on the road. When I did try to SCD diet when I was at home for two weeks, I definitely noticed a difference, but then, BAM, another flare hit me, out of the blue. I am beginning to lose hope and absolutely love my job and all of the travel, but maybe I need a break. I would love to take a more natural path to help my symptoms but also know when my body needs faster relief, which is why so many of those prescription drugs tend to be the quickest form of relief.
My friends and family have been very cool and understanding, they always let me know where the nearest bathroom is and cheer me up when I am feeling down. Also, for all you UCers, download the Sit or Squat App by Charmin on your phone, you can see where the closest potty is based on your GPS and rate the bathroom too. Also, doing your business in the woods isn’t so bad, in fact I sometimes prefer it, nature is so much more germ free than all those public places! I am an avid hiker, snowboarder, snowshoer, bicycler, an outdoor person in general and have had to mark my territory on occasion at times.
UC flare, don’t care!!
4 Lialda per day
Probiotics, Multi-Vitamin daily
I am sure UC flares have gotten you down and feeling bummed. What do you do to cheer yourself up when you know it is hard to leave the house?”
Thanks so much for sharing your story, you are an amazing person in about a billion ways!
Of course I think there’s a physical component to my flare ups, but there’s just as much a mental one too. And the mental battle is sometimes the hardest part.
It’s super hard to continuously be heading (or maybe I should say running) off the bathroom, only to go through another bleeding fest with the toilet bowl with no improvement in what’s coming out. And then to see your body getting weaker and weaker, and to be getting more and more tired. All those symptoms are draining physically and for friggin sure mentally.
What’s helped me in getting past some of the tuff times with UC is one thing: faith in the colon. I’m not talking about religion or anything even close to that. But plain and simple, I’ve seen my colon go from massive bleeding to creating hard poops with no bleeding many times before. Probably the same deal for you too.
When I’m in a flare up situation, it takes a major edge of the whole awful experience knowing that my colon/body has gotten through this type of thing before, and most probably will be able to make it out again. AND, sometimes its just a matter of a day or two before things return to normal. Sometimes, it’s even faster than that.
I guess it really comes down to having a sense of confidence in knowing how to physically fight the symptoms, and using that thinking to calm down the mental anxiety that flares throw at us. I’m in the middle of my longest remission period ever right now which is cool, but it’s probable I’ll have another flare up somewhere down the road. And, if the times come when symptoms return I hope my thinking goes something like this:
- Stay calm and recognize what’s happening
- Keep the hope alive things will end soon
- Remember the previous times where the old colon has rebounded nicely and led to several years of remission
- Take the experience (meaning the flare up) as a physical and mental challenge that will be a great thing to beat/get out of
In the end, this whole disease is a challenge. There’s so many ways to treat ulcerative colitis. One of the biggest decisions we ALL have is how to go about that. With doctors giving us ideas, friends and family giving us ideas, website’s like this explaining even other treatment ideas etc…, it is a big dang challenge just to decide how to move forward. But once you believe in some path forward, things do get easier.
Best to you Jenna, and everyone else battling UC,