UC Won’t Ground This Frequent Flyer!

Stacey D fullIntro:

Hi! My name is Stacey, and I was diagnosed with UC in September of 2013. I had apparently shown individual symptoms for the previous 18 months or so, but it wasn’t until I went in to full-on flare mode that my diagnosis was confirmed via Colonoscopy.

Some more about me:

I am a Corporate Trainer, and I travel all over the world for my work. I typically fly 150,000 miles a year, and spend around 250 nights on the road. I love, love, love my work: it has sent me to some amazing places, and I have met some wonderful people — and I refuse to let UC diminish any of that in the future!

I live in Florida, and I enjoy the outdoorsy lifestyle that comes with living in a friendly climate. I used to be a “foodie” — now I am becoming an SCD foodie, and my cooking skills are getting better by the day! I have a pretty extensive SCD book and recipe collection.

Symptoms:

Right now I am showing very few symptoms — I am vigilant about following the SCD and taking my Probiotics.

I keep a daily food diary, and I pay attention to the signs my body sends me.

Stacey’s Story:

My work trip to Scotland in late July of 2013 didn’t turn out quite as planned… I was looking forward to reconnecting with customers and co-workers, and even watching some golf at the men’s British Open. Like everyone else who visits the UK, I found myself eating lots of “fish & chips,” and I thought that must have been the reason why my intestinal habits were suddenly off. I was going more frequently, and even ditching the chips for salads didn’t help. Something was definitely not right!

I had experienced hemorrhoids in 2012, so I called my GI doctor to schedule an appointment as soon as I got home from Scotland, thinking that I was going to develop them again. I couldn’t get an appointment until early September, but I wasn’t desperate at that point, so I just figured I would continue to watch my diet and I would be okay. The last week of August 2013 found me celebrating my 50th birthday in New York City, and the sugary treats I allowed myself every day from a couple amazing bakeries in the city turned out to be the catalysts for the flare that I was unknowingly developing.

I saw the GI doctor on the afternoon of Friday, Sept 6th, and he had me in for a colonoscopy on Monday, Sept. 9th. I knew that wasn’t a good sign, and my fears were confirmed when he told me I had acute Ulcerative Colitis. Yay, me.

He prescribed AsacolHD 800 3 times a day, but I didn’t notice any positive change in the first 2 weeks. Then I had to go to Australia — and that’s where things went from bad to worse! It turns out that I am allergic to sulfa medications, a discovery I learned about 3 days in to my Australia trip – when I was doubled over in nausea and pain, and hitting the bathroom for bloody stools about 20 times a day! I don’t know how I survived 2 weeks of that, but I did! And that 17 hour flight home? It was 17 hours of pure hell, I can assure you! Fortunately, the Qantas gate agent seated me directly next to the lavatory, so it could have been a lot worse…

I lost 25 pounds in 3 weeks, and I was incredibly weak and exhausted. I couldn’t eat anything, and I struggled to stay hydrated. My GI doctor prescribed Uceris, which literally brought me back to life. Stuck in bed with my iPad, thank God I stumbled upon this web site and its resources — and this place got me back on the road to wellness!

I cannot emphasize enough what a place of encouragement and support this site has been, and I am so grateful to have found it.

Medications / Supplements:

My GI doctor tried Asacol HD and Lialda — both of which made me incredibly ill. He then prescribed Uceris, which worked, but as a steroid you can only take it for a limited time.

Right now I am not on any medication and I hope never to have to take any UC medication again: that stuff almost killed me! I follow the SCD religiously. It took a few days to kick in, but right now I feel okay. Adam’s smoothie recipes rule!

I take Ultimate Flora Critical Care Probiotics every morning.
Calcium / Magnesium / Vitamin D
Chlorophyll
Multi-vitamin at bedtime

written by Stacey D

submitted in the colitis venting area









8 Responses to UC Won’t Ground This Frequent Flyer!

  1. Adam January 16, 2014 at 6:31 pm #

    Stacey D,

    WAY TO GO!

    So so happy you’re doing good now! Great to hear and keep it rolling/flying/training…whatever!

    Great vibes, and hoping they rub off on many others here:)

    -Adam

  2. Sher January 16, 2014 at 7:16 pm #

    Stacey,
    Awesome attitude! I get nervous flying so I do take a prescribed anti diarrhea (lomotil) medication and try not to eat much if anything prior to boarding. I had a terrible experience on a flight that sat on the runway for over an hour and a 5 hr flight! Horrible experience, I didn’t have the knowledge I have now about diet and ate an entire thing of sugar free candy… gave me horrible stomach pains and set me into a flare 3,000 miles in the air :-) … The walls of the plane were closing in on me and that damn cart was blocking the isle I was freaking out… panic attack!

    Once I feel better I can eat almost anything in moderation, but that word is key! You stumbled upon the right place, all kinds of great advise, or if you are ever not feeling so good, reading other people’s stories makes me feel not so alone with this disease. You will have good days and some bad, I recently went through a horrible flare after being symptom free for over a year, I went in to see my doctor complaint of how miserable I was and mad at myself for not making good food/drink choices while on vacation, he responded “Don’t blame yourself! You were just having fun… you didn’t choose to have UC, we will work through this flare, don’t beat yourself up so much!” … so I take it easy when I’m flaring and take advantage of the months when I feel great! Keep us posted on how you are doing and stay positive!, Sher

  3. Bev January 17, 2014 at 4:20 pm #

    Now that’s a post!

    Fantastic that you are taking that probiotic. That’s the one that saved me as well.

    The asacol also made me very ill and the doctor always told me it was the UC that was making me so sick. Hah!

    Yours is a great story. Probiotics are the thing for me, too.

  4. Erin January 17, 2014 at 4:31 pm #

    It is great to see, that there are other travellers out there. :)
    I may have to try the scd diet, myself.
    I agree with you about this site, it is a great resource,and a huge blessing for us all:)

  5. Mary January 18, 2014 at 7:01 am #

    Stacey, I am happy that you have found the right way to treat this disease early in your diagnosis. My son, who is 22 has uc and it has been a roller coaster ride of urgency, pain, bloody stools (up to 20 per day sometimes, thanks to pentasa)! He has finally seen the light that probiotics play an enormous part in steadying this disease for him. He was diagnosed at 16 years and we have travelled overseas every year with him (we live in sydney, australia) and he has travelled with his friends as well. A couple of years ago, as the plane was taxing to the runway, he jumped up and ran to the bathroom and didn’t return to his seat until just before the plane started to take off! The qantas crew were exceptional on this flight, which certainly took a lot of stress away. My hat goes off to my son, he has put up with a lot to travel, but he says it is one of his passions and he won’t let colitis win!

  6. Jenna April 6, 2014 at 9:28 am #

    Hi Stacey,
    It is nice to find someone else who travels as much as I do, also living with UC. I have been travelling most of my life, a lot more frequently the past 3 years. Last year was a very busy year, traveled all over the US for work as well as Vietnam, Maui, St. Maarten and Turkey, I was’t home for a good 85% of the year. I love my job and the travel with it. But I noticed my first flare up as I was in St. Maarten (of all places to start, spending hours on boats and in the water…the only thing that saved me was Immodium), last August. I came back thinking I had some sort of food poisoning, but after blood work and stool samples, they ruled out that. I had to wait until the day before Thanksgiving (also a good time to do a colonoscopy, good cleanse before good eating, haha) to finally see what was going on. They started me on prednisone and asacol right after the colonoscopy. I felt good for about a month then started having flare ups again and am continuing to have them now. It makes it very difficult to travel with the symptoms, I take 4 Lialda and 20mg Prednisone daily, but when I fly, it still doesn’t work. I am in a 18 day so far, flare up.
    My question is how do you manage with the travel? I feel like sometimes I get sick because of a new anxiety of traveling, the “oh I hope I don’t have to use the bathroom on the plane” thoughts are always in my head, do you think an anxiety medication may help calm me down and eventually relieve some of the pain associated to the flare up?
    I have an appointment in 10 days where I think my doctor will try a new approach of the medications, I am eager to start feeling well again and enjoy my travels like I used to. The thing I miss the most is sitting in the window seat on the plane, now for the past almost year I have to sit in the aisle, not knowing what my stomach has in store for me. It is exhausting!

    Thank you for sharing your story,
    Jenna

  7. erin April 8, 2014 at 7:34 pm #

    Hi Jenna,
    Though I do not travel as much as you I enjoy it too :) I would like to comment and ask a few questions.
    First of all, I would agree that you may be getting sick because of your anxieties about travelling. Often we believe things or get worked up about things when it is not necessary. Worry steals the joy out of the present. We are only given one day , one moment at a time.
    When you are speaking about an 18 day flare, could I ask what you are experiencing? Mine is usually blood in the stool with cramping in the abdomen, and fatigue,not sleeping well.
    As far as the meds not working:Your prednisone may have to adjusted, or you could try an add on of supps. I would advise that you discuss this with your doctor,see if you can discuss your concerns with you doctor even earlier than in 10 days time.
    When you say you are now using the aisle seat, and miss the window are you having to get up and use the washroom , more than once on the flights? Is it from something youve eaten, or is more nerves.

    Wish you all the best , and hope to hear from you soon.

    • Jenna April 9, 2014 at 7:40 am #

      Hi Erin,
      Yes it is very stressful to travel with the symptoms, I tend to sit towards the back of the plane and in the aisle just in case but luckily I haven’t actually had to use the restroom on the plane yet (knock on wood), I think by sitting where I do it keeps me a little at ease so if I had to get up, I am close. My flare ups usually involve cramping, 3-7 BM a day, having to use the restroom immediately after I eat, blood, cramping, different stool types, etc. I generally do not eat when I travel until I have landed at my destination, which is unhealthy because sometimes I wont eat anything for 13 hours.
      The funny thing is that the thing that makes me feel better is alcohol. I usually drink wine on the plane and at the airports. Any thoughts on alcohol and UC and drinking while on Lialda/Prednisone?
      I am finally feeling OK after about 20 days of having symptoms, still have the stomach aches, but little to no blood. During this flare I called the doctor and they wanted to try the Enema again. A few months ago I was doing this for about 4 weeks, but eventually after it relieved my diarrhea, it left me having upset stomachs most of the day, so I stopped doing it. I told them I was just going to up my dose of Prednisone, since I was out traveling, so I was taking 30mg instead of the 20, it still showed no signs of improvement. About 4 days ago I lowered my dose back to 20mg because there really was no point in taking more steroids if it wasn’t helping. I am back at home for a few weeks and will wait for my apt a week from today.
      Did some blood work this week and a TB test, I am guessing they will put me on a different treatment plan next week.
      Any thoughts/ideas on what I should expect? I am thinking it will be Remicade? I’d really like to try to heal myself more naturally but with all the travel I do, I just want to feel good again and want something that can work quickly.
      Thanks for your input! Hope to hear back.
      Jenna

Leave a Reply

No matter what, colitis flares don't last forever, don't forget it:)