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When You Have to Go Number Two on the Bus

Mika M BrazilIntro:

I am a 26 year old English teacher in Brazil. I love running (when my symptoms let me), traveling, and spending time with my husband! I am originally from Seattle, Washington, moved to Spain after college for two years, and now have lived in Brazil for two years! I teach English to public school students who otherwise wouldn´t have English classes (through a state funded program).

Some more about me:

I love all things outdoors….but am terrified of riding the bus. Not just because Brazilian bus drivers are crazy, but because there are usually no toilets on public transportation. I play classical flute sometimes….and love listening to terrible music. Pop, rap….reggaeton.

Symptoms:

Bloody stools
Abdominal pain
Bloating
Frequent bathroom trips….especially in the morning
Weight loss

When Remicade, SCD, and Paleo don´t work…..and you have to go number two on the bus

i remember having abdominal pain and bloating long before my diagnosis, but I always attributed it to food sensitivities or stress.
In April 2011 I started to have severe abdominal pain and blood, and I knew something was wrong…I was living in Spain at the time working as an English Teaching Assistant, and luckily had a great insurance plan. After many tests and Dr.´s visits I was diagnosed with pancolitic UC. I started taking mesalazine (oral and enema) and prednisone. I was hospitalized for a week when these medications didn´t give the results that my Dr. hoped for. Once I was released from the hospital I continued the same protocol, and was fine for a couple months. I headed back to the USA for the summer, and as soon as I got there things got much worse. I lost 20 pounds, and was on 70 mg of prednisone. I started to vomit all my meds and wasn´t sleeping because of so many bathroom trips. I was hospitalized again and put on Azathioprine. When the inflamation got so bad that they were considering surgery we started with Remicade, and within a few days I was much better!

As soon as I got out of the hospital I was off to Brazil for a new life with my then fiancé (we met in Spain, and with the financial crisis in Europe decided to try our luck in his native country, Brazil).

I was OK for about a year, but in fall of 2012 things started getting worse again. For the past year I have been off and on prednisone, and struggling with pain and frequent bloody bowel movements.

I feel like the Remicade isn´t working, and all of these drugs are just being continued because my Dr.´s don´t know what else to give me.
I tried SCD for a few months, and when that seemed to yield no results I started the Paleo diet. When that seemed to make no difference I tried the Paleo Autoimmune Protocal….(basically grain free, egg free, no nightshades, and no legumes). Now, to eliminate more possible problems like SIBO I also have stopped eating starchy tubers, and high FODMAP foods.

I feel like I can´t eat anything and nothing is working!!!!
I really want to believe that there is a natural solution, but I am getting more and more discouraged (and skinny).
I am supplementing with amino acids, and fish oil, as well as a multi vitamin.

HELP ME!!!! What can I do when nothing seems to work???

How Not To Give Up Hope?

I am so thankful to have a husband who supports me through the rough days and nights….and all of my crazy dietary adjustments, but one of my greatest fears is that he, and the people around me will get fed up with me and this illness and give up, which brings me to my biggest current problem. How not to give up.
Every new thing I try brings me a new excitement and hope to conquer this disease, or at least get it to nap a bit. I was thrilled with the idea of SCD, and did the intro diet…and then ended up in the hospital. I was also super excited to try LDN (which I am still taking) but have noticed no major improvement. Then I was completely convinced that Auto-Immune Paleo would solve everything…..while I have felt a bit better, I still have to wake up two hours early to spend a big chunk of time in the bathroom before work if I don´t want to risk a messy bus emergency.
All I want to do is go back to being the happy, energetic, I can do ANYTHING girl that I was before I got sick. I want to run, and laugh, and go on a car ride without having to worry. I want to go out at night without falling asleep at the dinner table. Unfortunately these days I´m feeling more and more like there is no solution…and that nothing will work. I am becoming a sad-eyed introvert who would rather stay at home on the couch rather than go to a BBQ with friends and no bathroom. I dread the question `How are you doing?´ because I don´t know whether to lie and say that I am fine, or tell the truth and seem like a whiny kid.
I would love to here from you guys what makes you feel like getting up every day, and what gives you hope…and keeps you from sitting down and eating a whole pizza, because your stomach is in knots anyway!

Medications / Supplements:

Taking: ASACOL, Remicade, Amino Acids, Fish Oil, Green Propylis, Aloe Vera
Discontinued: Azathioprine

written by Mika

submitted in the colitis venting area




17 Responses to When You Have to Go Number Two on the Bus

  1. Adam
    Adam October 11, 2013 at 4:54 am #

    Hi MIka,

    I’m so sorry that you’re getting to the end of your rope down there in Brazil (if you’re still there), and I know it must be super frustrating among other things when nothing seems to be working to send you back into remission.

    I know that my body does not tolerate the 5-ASA MEDICATIONS at all. (Asacol, Colazol, Lialda, pentassa etc…). And, there seem to be a decent enough amount of other UC’ers who fall into that same boat. Also, there’s another group of us who feel they have actually upset our digestive system and caused more negative side effects than positive (even though doctors including my current GI who I love disagree with that being a possibility) That said, you may want to consider stopping that medication all together (talk to your GI first no matter what). But, it sounds like you have given a try to several popular diets like SCD and paleo, and I’m just surprised that you have had no positive effects from either and I wonder if the 5-ASA medications are not the best idea.
    On a totally separate note, I’d also recommend that you get tested for C-diff just to be able to rule that out. That’s an bacterial issue that presents itself very similarily to active colitis (if you’ve already had it..you’ll know exactly what I’m talking about).

    best of luck to you, and I wish a quick turnaround real soon,

    -Adam

    • Mika M
      Mika October 16, 2013 at 7:58 am #

      Thank you so much Adam! Your site is a great way for us to connect….and see that there are more people out there with the same problems and concerns. This illness is so uncommon that sometimes we end up feeling like we are the only ones. Unfortunately (or fortunately, I´m not sure) I have been tested for c-diff recently and I don´t have it.
      I am also sad and suprised that the diets aren´t working. I wouldn´t say that they didn´t help at all (a lot less bloating and discomfort)….but they haven´t given me the relief that I had hoped (I continue to have frequent bloody bm´s). Anyway, thank you so much for your encouraging words and please keep up the good work!

  2. Chrissey October 11, 2013 at 7:57 am #

    Hi Mika,

    I’m 27 years old now, I was 26 when I had my first surgery back in January. The surgery route is not easy but it does give you your life back and gets you off that awful predisone, that stuff made me crazy. You seem like a strong woman, and I truly believe if you are fed up with all the medication and immuno suppressant drugs you should definitely consider it. UC is not only devastating it is extremely painful as well. I got to the point where I had no choice but to get the surgery because of the 22-24 bms I was having a day. My backside hurt so bad I could barely even sit down, excruciating pain would be the only way to describe it.

    As for what Adam said, definitely get checked for C-Diff, unfortunately your body is so immuno compromised that you are easily susceptible to it. I picked mine up in the hospital or the remicade infusion clinic.

    If you want to chat more or just need any advice…please feel free to contact me via facebook or my email.

    Take Care and I hope things get better soon!

    -Chrissey

    • Mika M
      Mika October 16, 2013 at 5:17 am #

      Thanks Chrissey,
      I will definitely email you if I get closer to a surgery option….for now I am still hoping for a miracle remission. Did you try any diets before you operated? How old were you when you were diagnosed.
      I have gotten checked for c-diff and for now it´s negative.
      Thanks again for the encouraging words.
      Mika

  3. mj October 11, 2013 at 12:49 pm #

    Hi Mika,

    I’m sorry to hear your medications/diet aren’t helping you right now. Is fish oil and Aloe Vera something you’ve been taking everyday? My acupuncturist told me fish oil can actually have a laxative effect and I the last time I touched Aloe Vera it just ran straight through me. It might be worth having a look at those as well or removing them for a while?

    I’m currently trying to get a flare under control with Pred 50mg and Pentasa 2mg twice a day, and the only supplement I’m taking is probiotics. I was recently hospitalised and tested for other gastro viruses, but it turns out it was just UC that was causing my extreme pain/BMs/exhaustion/dehydration. Forgot how bad UC can get!

    My husband is also Brazilian and I would love to go back to Brazil with him next year for a few months (we live in Australia). I love the lifestyle there, but last time we visited I went crazy with bread/sugars/booze and came back to Aus needing a hospital stay. I know what you mean about crazy bus drivers and no toilets, the fact you have to pay for toilets on the beach in Rio was bad enough for me when I went haha.

    When people ask me how I am I generally tell them the truth (it helps to vent!) – most of them will comment that I still look great and I let them know that I’m very good at hiding the pain going on inside.

    What makes me feel like getting up everyday and gives me hope? Apart from my husband who is my amazing rock, helps me laugh about UC and puts up with me wanting to stay home on wknds – my new hope is SCD. I literally just started it after feeling the worst flare I’ve had in a long time and I woke up today so excited about it. I’m travelling to Asia in a couple of weeks and I’m hoping SCD will keep me healthy while I’m there.

    • Mika M
      Mika October 16, 2013 at 8:02 am #

      Hi there!
      It is great to know that there are other travelers out there! I hope you have a great trip in asia. The best of luck to you on your travels…and with SCD. Whether or not it works, here are a couple great resources for food that have helped me a lot with my diet experimentation.

      This woman has a wealth of recipes and info about autoimmune disease
      http://www.thepaleomom.com/

      This girl has been through a lot of the same things as us and credits SCD and Paleo with saving her life and intestine.
      http://www.againstallgrain.com/

      I will give the aloe and fish oil a break….but it seems not to make much of a difference either way.

      Thanks for the encouragement!

  4. bev October 11, 2013 at 4:52 pm #

    You said a mouthful Mika, when you said none of the drugs work…the doctors don’t know what to give you….exactly!!

    UC CANNOT be treated or managed with drugs. I was on asacol and steroid enemas for almost 15 years straight, and all that ever did for me was make me feel even worse.

    I will never take drugs for UC again…and I mean that. I would rather lose my colon than take these useless, harmful medications again.

    I am in remission for the first time in 15 years, on a good probiotic (ULTIMATE FLORA CRITICAL CARE by RENEWLIFE) and powdered fermented L-glutamine. I haven’t felt this good in years, and have been in remission for two years.

    Cheers,
    Bev

    • Mika M
      Mika October 16, 2013 at 8:05 am #

      Thanks for the advice! I will check and see if I can find a good probiotic here in Brazil. I have tried making my own yogurt but I think I am sensitive to dairy even when it is prepared SCD style. I am going to see how it goes with goat milk! My naturopath thinks it is because I have sensitivity to the casein in the milk and not the lactose. Best of luck to you and I hope that you keep in remission!

  5. Andy October 11, 2013 at 8:42 pm #

    Hi Mika,

    I have had UC for 6 years or so and am currently in remission.

    I believe every UC’r should try these things, in this order:

    – Diet(SCD, Paelo, no dairy, no grain). Diet seems to work best for people in the early stages of UC, before the gut bacteria have changed significantly.
    – Prebiotics(inulin, larch, resistant starch, beta glucan) and Probiotics(fermented foods like yogurt/kefir I believe are best as you can be sure they are live, but top quality probio’s like VSL#3 and Mutaflor etc can be of benefit).
    – Steroid Enema’s/Steroid, for me this medication was effective in getting me out of a flare with no side effects when even oral steroids didn’t work.
    – Fecal Transfers. Cheap, disgusting, and effective. More and more research is coming to this conclusion.
    – Worms/helminths. Expensive upfront, but low cost overall. Worms have been shown to dampen immune response and normalize gut bacteria. What I think is most interesting about worm treatment is that they have been shown to prevent further autoimmune issues – which if you have UC you may be at risk for(get tested on 23andme).

    I have tried alot of other things(sooooooooo many supplements), but these things are at the core of my keeping UC a bay routine these days and I have found to be most effective.

    -Andy

    • Andy October 11, 2013 at 8:43 pm #

      I actually meant to say: – Steroid Enema’s/Foam

      • Mika M
        Mika October 16, 2013 at 8:09 am #

        Thanks Andy! I am working on making my own fermented food….it is quite an adventure…..

  6. Juliet
    Juliet October 12, 2013 at 6:50 pm #

    Hi Mika,

    I would certainly get checked for C-Dif like Adam suggested. I have been on Asacol for years and recently felt so unwell on it, I stopped taking it. I feel lots better but I am probably going to have a course of antibiotics. Currently on prednisone and have been since march! So it seems I may have bacterial infection that keeps getting missed in the lab work.

    I can’t take aloe Vera, I actually felt raw inside after using it. And I had the best organic stuff I could find. What works for some doesn’t work for others. I think as others have suggested holding off taking some things and see if you improve.

    My GI Doc said I was fine to stop Asacol for now as it can cause constipation and diarrhea! But she wants me back in it soon…Hmm! We’ll see!!

    I hope you find some relief soon from your current situation. And yes it’s so hard not to chow down on pizza and all the yummy foods we used to but in the long run, is it really worth the extra pain and time on the toilet!! Xx

  7. Mika M
    Mika October 16, 2013 at 8:14 am #

    Thanks Juliet,

    I am thinking about quitting the asacol….unfortunately my GI isn´t so accepting of these ideas of stopping medication. I was terrified to tell her that I had quit taking IMURAN!
    Good luck getting off the prednisone….that stuff is evil :)

  8. mj October 16, 2013 at 10:04 am #

    Hey Mika,

    I quit imuran too, without telling my GI (oops). I hated that drug I felt like it wasn’t doing anything for me. Ultimately you have to do what you feel like, not what the GI tells you to do.

    Thanks so much for those links, I can’t wait to try some of those recipes!!

    The biggest change for me in the last week has been the SCD diet. Compare me to this time last week and I am a completely different person.

    I had 2 BM yesterday – none at work – which is a massive breakthrough for me! Compared to 7 during the night alone last wednesday!! I made my hubby give me a high five for that one haha. I just finished day 5 of the intro diet and am going to start to introduce new foods today, might just stick with one really ripe banana and see how I go. I’ve had a pretty bad flare for most of the year (this is my 13th year with UC), so I want to take it slow. I’m amazed I’m not craving anything though, and I’m not that hungry either.

    I’m on 40mg pf pred now, tapering down (thank god cos the insomnia is killing me, up at 3am), and 2mg of pentasa. I was on a prebiotic, but changing that to a probiotic now and see how I go.

    I think the other big adjustment will be learning to switch off my “where’s the bathroom” “is my UC ok now?” thoughts which are generally on my mind every 5 mins of the day.

    Best of luck with your treatment Mika, hope you find something that works for you soon!

  9. mj October 16, 2013 at 1:10 pm #

    I forgot to mention there’s a pretty good free app called GI Monitor I’ve been using to track my progress, i find it really helps. the only thing it’s missing is a section for specifying the pain & exercise…

    • Mika M
      Mika October 17, 2013 at 2:35 pm #

      i looked at the app…looks a lot easier than writing everything down in a notebook like i have been….but i am going to have to upgrade my phone first!
      exercise? you mean working out? that is the thing i most miss when i am flaring…..do you think makes things worse to work out?

      good luck on your taper! prednisone makes me crazy……like reallllly crazy. unfortunately sometimes it is the best option.

      i am so happy that SCD is working for you! Here is my email if you want to keep in touch. kaelabelle@gmail.com

  10. barb October 18, 2013 at 11:40 am #

    Hi Mika,

    I know the feeling about taking public transportation. All I can advise is that you drive yourself. This feeling has limited me to in ways of finding another job. Don’t want a job in the city because the thought of me taking the bus scares me. I don’t want to drive there to far and parking is so expensive. Luckily I have a job that is only 20mins away and I am able to drive.

    Good luck.

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