Travel Bee with UC

Jenna - colitis since 2013

recent picture of Jenna

Hello!
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
Africa-Toto
Tub Thumpin-Chumba Wumba
Time to Say Goodbye-Sarah Brightman, Andrea Boccelli
Any and All 80s songs…

Game On!

Colitis Symptoms:

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!!

Currently Taking:
4 Lialda per day
10mg Prednisone
Probiotics, Multi-Vitamin daily
Cheers,
JB

Adam from iHaveUC.com

Adam Scheuer – colitis patient since 2008, founder of iHaveUC.com

Ask Adam:

“Hi Adam!
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?”

Hey Jenna,

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:

  1. Stay calm and recognize what’s happening
  2. Keep the hope alive things will end soon
  3. Remember the previous times where the old colon has rebounded nicely and led to several years of remission
  4. 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,

Adam




12 Responses to Travel Bee with UC

  1. Kira H
    Kira June 7, 2014 at 1:36 pm #

    Hi Jenna,
    I have had UC since 1995, but it has only been bad the last 6 years. I am commenting because I seem to get worse the week before my menstrual cycle too. A previous GI connected to hormonal changes, not that I can do anything about that. I wonder if other women have the same thing. Also, I really struggle with traveling, flying, and being in high altitude. I hope you can figure something out so you can continue to travel. I am getting ready to have surgery myself (I think) because I just can’t get off steroids for more than a few weeks, and now I keep getting C-diff (yuck!!). Good luck.

  2. Janet June 7, 2014 at 6:42 pm #

    Jenna, the Web is a great tool, use it
    Any med can be found on line with lots of info including side effects. Be very careful with the steroids, the list of side effects go on and on. Not worth it

  3. Jenna B
    Jenna B June 7, 2014 at 7:09 pm #

    Thanks Adam! I definitely hope I can start controlling my mental state when it comes to flares, challenge accepted! Thank you for posting my story, your comments, and for creating this site, it’s been extremely helpful and even comforting at times just to know I’m not alone in all of this. You did an awesome thing here!

    Kira- you will have to let me know what you decide (surgery or not), it is interesting how I noticed it got worse during those times. I actually just took myself off of birth control and Lialda, kind of at the same time. I am not sure if it was a good idea or not. I know that the Lialda wasn’t doing anything for me, in fact I believe it was making me worse. So…that’s when I stopped, just to see how my body is doing and make a journal of everything. Unfortunately I have been in a flare for the past 6 days and am not sure if it is from being off the birth control now for 2 weeks or if it just just another lucky time for a flare…especially when I am here in Washington state for 3 weeks, I want to go explore!
    It does suck traveling! My routine when I fly is to take all of my medication in the morning, don’t eat until I make it to my destination, sometimes take an Imodium depending on how I feel, and maybe drink wine or vodka on the plane (all very bad) but that is what gets me through it and on to my next job. Can’t live like this forever…looking forward to a time of remission…hopefully sometime soon :)

    Thanks to you both..Cheers!
    JB

    • Kira H
      Kira June 7, 2014 at 10:40 pm #

      I have been on lialda for 4 years now and have thought of going off too – but stay on it out of fear. I didn’t have any problems being on birth control pills though. I never eat when I travel either – not worth the risk. Plus just getting in the car makes me feel like I have to go… Good luck and I will probably post my story soon – with the surgery decision included – this website has really helped me see that m not alone AND there are positive stories post surgery. All I ever saw before was negative and it terrified me!! Thanks adam!!

    • Angela June 9, 2014 at 8:14 am #

      Hi Jenna,

      I have UC since I was 13 (now 25). I couldn’t quite get my UC managed for a long time because of flares around my period. There’s a lot of research out there supporting the links between hormonal changes and flares (just not sure why doctors aren’t bringing it up). I went to my OBGYN on my own and I do a 3 month loop of pills to minimize the number of pills and that has help dramatically. I was on remicade and methotrexate and the birth control let me stop the methotrexate. Maybe try birth control again?

      As I’m sure you’ve seen on here, diet is really important. I just flat out don’t drink anymore because it always triggers a flare. Adjusting your diet could really help!

      • Jenna B
        Jenna B June 9, 2014 at 2:31 pm #

        Hi Angela,
        Wow, UC since you were 13, you poor thing! It has been less than a full year for me and I am barely coping, it is so hard to live with. I am currently in the middle of a pretty bad flare right now, it is now day 15 since I have stopped the birth control. I have been on the Paleo Diet for about 5 weeks now, and have lost weight and been feeling better up until this week. The pain I am experiencing almost feels like a mix of UC cramping symptoms but also menstrual pain as well. Usually it gets a little better at least once during the day, but I can’t seem to catch a break this week. I up’d my dose to 20mg of prednisone this morning, 3 tylenol and my usual vitamins/probiotics. Still having some of the pain, but am trying to avoid taking Imodium for the urgency. My OBGYN actually wanted to switch my birth control a couple weeks ago to have me take less pills but it was a higher dose of estrogen, so in my mind i was thinking that new birth control would be worse for my UC symptoms and she said that her biggest concern was not letting me get pregnant (rather than making my UC symptoms less extreme). So, I made the decision to quit birth control in general, I have been on it for 11 years and knew i wanted to get off of it sooner or later but am now thinking now wasn’t the best time, haha.

        • Bri June 16, 2014 at 7:43 am #

          Hi Jenna I have been diagnosed for 15 months and like you are used to a very active lifestyle and have always travelled !! I really understand your comments about the emotional side of diagnosis and I also found it very hard to give up the social aspects of my life that I loved eg drinking wine and eating amazing and rich food but I now know that it just can’t do those things anymore because they do cause immediate flares and affect your day to day life for weeks/months on end and just aren’t worth it !! I’m also commenting because I also made the decision to stop taking my contraceptive pill roughly seven weeks ago and have been experiencing the same as what your describing a mixture of bowel and period pain getting worse in the evenings and through the night. I am still waiting for my first menstration nearly two months after stopping although I feel like I have the pain of it all day everyday !! It has to be hormonal and it’s awful !! Thanks for sharing your story !!

          • Jenna B
            Jenna B June 19, 2014 at 12:03 pm #

            Hi Angela,
            It is good to know that others out there are trying new things with their bodies and trying to listen to what it is telling us. It was a little weird because I had a bad flare for 2 weeks that just feels like it is finally ending today. It was ironic how I had my first period after being off the BC 4 weeks to the day, I started. I thought that would make some of the UC pain and symptoms go away, but it really didn’t, I ended up taking 1/2 vicodin everyday for the pain. Today, I feel okay, but had a long day of travel yesterday so I clogged myself with Dicyclomine and Imodium and Prednisone yesterday, so my body is in a funk today. I have an appt in a couple hours with my GI, he will not be happy to hear that I never started the Imuran and am now off of Lialda and birth control. I was at my family doc this morning, and she prescribed me VSL3 (which I had to beg for practically). I am curious as to what my GI will say today…I am tapering off Prednisone and am probably not going to be using it in the future (if I can help it), it doesn’t seem to be working anymore.

            Do you think you will start up Birth Control again or wait it out? How have your symptoms been the past 2 months? I know the feeling of wanting to go out and play like we used to, being free to go eat and drink whenever we wanted and not have to worry about where the nearest bathroom is. It has put me into some depression (also starting prozac this week, my doctor says the continual use has had research studies saying it helps with UC anxiety?? we will see).
            The funny part is that the only thing that makes me feel good is alcohol, but like you said, too much of it causes me to flare as well, oh how I miss the good ol days! :)
            Hang in there and keep in touch!

  4. sandi pick June 9, 2014 at 12:35 pm #

    Has anybody tried homeopathy to alleviate their symptoms? I have been following all your comments on line and have tried a number of things that seemed to have worked for different people on line. Sometimes they have worked for me but I face 2 issues, 1. I cannot loose the weight I gained when I was on prednisolone for 4 years (6 stone!) 2. I seem to have flares every 2-3 months irrespective of what I am taking or doing. Current medication is Asacol 2.4g x2 daily, Azathioprine 100mg x1 daily, codeine 30mg x 2 daily. I am experiencing extreme fatigue which makes exercising almost impossible – a vicious circle! OK guys looking for inspiration here? Many thanks

    • Gail June 12, 2014 at 7:37 am #

      Hi Sandi,
      I would suggest to you that you do some reading into gluten intolerance/celiac disease. When nothing else works, it usually is because there is an underlying issue that’s not being addressed. You might be surprised at the symptoms of gluten intolerance (what is referred to as NCGS or non-celiac gluten sensitivity) and celiac disease itself. Both impair the ability of the small intestine to properly absorb vitamins and minerals (low B-12 known to cause fatigue, for example) and cause a whole host of other auto-immune diseases. What does anyone have to lose by cutting out gluten (and dairy too) for a month or two? – only discomfort and pain. It does, however, take preparation and diligence, to ensure complete compliance at first. If you go to a homeopath or naturopath, who will try to get to the root of your problems, just make sure it is someone reputable. I have been to both myself. If you have any questions, I’d be happy to answer.

  5. Ashish Shrivastava June 13, 2014 at 12:03 am #

    Hello all,
    I have got the very easy solution for my gastric problem.
    I Gastric pain horrible for me, even when there were no mucus or blood in my stool.
    I changed my food timing and its all gone in 1 to 2 days…
    Stick to proper diet on time..
    Get up early before sun rise, have a brisk walk, bit of Surya namaskar(Dips in Indian style)
    Have breakfast, lunch between 12:00 or 1:00,
    snack at 5:00pm, dinner at 7:30pm..
    Nothing else.
    I bet you will recover soon.

  6. sachin June 1, 2016 at 12:16 pm #

    Hi Gadi,

    Which homeopath you approached? If you could let me know.

    Thanks,
    Sachin

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