UC Makes Me Crazy

Luana CMeet Luana:

Hello, my Name is Luana. I’m a 25 year old student, mother, and wife. I am getting my Bachelors Degree in Interior Design and aspire to do great things despite of my Ulcerative Colitis.

Symptoms:

Constant “Belly aches” and urgencies to rush to the bathroom. Constant Diahreah and mucus.

Luana’s Story:

I’m 25 years young and everything I do revolves around my Ulcerative Colitis. My ulcerative colitis affects the time I wake up, what I eat, and when I eat it. UC determines when I can hang out with someone, when I can have sex, and even how long I can hold it in the car before I get to my destination, and the list goes on.

UC is the biggest pain in the ass disease, besides the pain is in my colon and it makes me take a shit like a million times a day and every place I step foot into. I know where every bathroom is in every store, mall, supermarket, restaurant, and gas station. I walk into places with zero shame, do my business, and dip like it ain’t a thing (Shout out to all the McDonalds and Walgreens who don’t judge when all you need is to take a dump).

Having UC forces me to anally plan ahead every detail (pun intended), and be prepared at all times. For example, If I am taking a trip, I know where all the stops are, how long it will be, and where every bathroom is along the way. Being prepared means always carrying baby wipes, hand sanitizer, and extra pair of undies and even a cardigan or something to wrap around my pants in the event I have an accident. There I said it!! You DO NOT have severe UC unless you suffer from accidents or the constant anxiety and worry of having an accident.

I was diagnosed in 2008 with Ulcerative Colitis.

Long story short, I have been in and out of doctors and hospitals for the past 7 years and I am EXHAUSTED.

Nothing ever worked besides one thing…. pregnancy. I was absolutely healed from all UC during my entire pregnancy. Unfortunately, I lost that pregnancy due to other factors. However after the pregnancy, my UC came back for revenge for all the worry free and happy months I spent without the thought of taking a shit lurking behind my every move.

My husband and I are trying to conceive again and I am looking forward to reliving another beautiful pregnancy symptom free. However, since I cannot take any medication before, during or postpartum… I am having to deal with my UC, and it is very angry.

Anyway, venting I did, so there it is.

I hope other UC’ers will be able to relate to my craziness. UC makes me crazy. I always have to ask the bathroom questions before I go anywhere or do anything. Not to mention, how embarrassing it can be.

Medications:

Lialda, asacol, 6mp, Healthy diet, fruit shakes, etc.

written by Luana C

submitted in the colitis venting area




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26 Responses to UC Makes Me Crazy

  1. Adam
    Adam November 22, 2015 at 5:23 am #

    What up Luana,

    Big thanks for sharing your real deal story, and for bringing a smile to hopefully some others faces with the reality that we go through!

    Wishing you and your husband the best with a future pregnancy and with life in general!

    Keep up the positive vibrations and know that we’re all behind you, that might include in the same line for the bathroom at Walgreens too:)

    Chow chow, and thx again for sharing!
    Adam

    • Luana C
      Luana November 22, 2015 at 6:07 pm #

      Hi Adam, It was a pleasure to share. I was worried about the “honest” factor, but I thought “Why not!?”, I have learned to not care what people think of me…. you kind of have to with this disease.

      Thank you for your good wishes for my husband and I, we always try to stay as positive as possible :).

      For the record, I would so let you cut me in the bathroom line lol

      • Krista January 5, 2016 at 8:35 pm #

        Luana, your story was 100% spot on!!! Like the others you wrote my life daily, I am thankful people are talking about this mor. For me I have hit a wall and will undergo the j pouch surgery at the end of the month, hopine for a better 2016.

  2. StormCat42 November 22, 2015 at 6:43 am #

    With the exception of the part about pregnancy, I could’ve written your life story… I’m 48 years old and I tell my best friend that if you had told me 10 years ago that I would be spending my days talking about poop, I would’ve told you you were nuts! I live alone which sometimes is a blessing, but when I’m in a flare it most certainly is not… I suppose like everything else, there are good days and there are bad days, and we should be grateful for the good ones that we have … I tell people that IC is like an evil mother in law, a royal pain in the ass and possible to get rid of!! *smile*. Good luck with the pregnancy and please let us know how you are!!

    • Luana C
      Luana November 22, 2015 at 6:14 pm #

      Hey, thanks for commenting. My husband and I used to live in a 1/1 apartment and that was not so good… Now, we live in a 3/3 and I love it! lol

      The mother in-law analogy is pretty much right on. I don’t mind the belly aches so much… it’s the urgencies that are inconvenient. Example: I had to go to the post office the other day, and they do not have public restrooms. Mental concentration at its finest with no sudden movements lol. But you are right, there are some good days.

      I will definitely update everyone when Iam pregnant again :) Thank you.

  3. Andrea M
    Andrea November 22, 2015 at 4:47 pm #

    Luana,

    Thank you for sharing. I know how you feel. I’ve been in a flare off and on for two years and am working to get on Humira (this is something I fought until every other option, alternative or otherwise, was tried).

    Aside from the pregnancy aspect, I can relate to what you are going through. I recently took a two-week trip to Southeast Asia and, while it was wonderful, it was stressful to not know when/where there would be a bathroom available (not to mention the 12 hour flight where bathrooms are in limited supply). I *shit* you not, I took (embarrassingly enough) those Active Fit adult diapers with me for the long commutes as I didn’t want to have to carry a sweater to wrap around my middle if there was too long a line at any given place or nowhere to stop. In 90 degree + humidity conditions, something like a sweater would have been just another pain in the ass. Despite the embarrassment factor of considering myself too young to have to wear such a garment, I found that they do stop the extra-embarrassment (and laundry) that would otherwise result from not being able to make it to the restroom in time had I not had them with me. I was also lucky enough to travel with incredible friends who were completely supportive in an alterations to plans I requested, even if it was something simple like needing extra time in the mornings/evenings since my symptoms are often worse at the either end of the day.

    And yes, big ups to those places that just let you use the restroom without having to purchase anything or sit down at their establishment. I will say that in Southeast Asia, they are all very kind and willing to let you use the restroom, although “restroom” can definitely be a relevant term.

    I’m very sorry for your loss of your previous pregnancy and wish you the best of luck in your conceiving and carrying to term a healthy baby this time around.

    Take care.

  4. Luana C
    Luana November 22, 2015 at 6:29 pm #

    Hi Andrea, Thank you so much for commenting!

    I am so glad you have supportive friends that you go tot travel with! I mostly hide my disease from my friends because I feel like they will only see the “poop” aspect of it, and not understand that this is a true disease that I have to deal with mentally and physically on a daily basis.

    My husband however, is so amazing and supportive! He pushes me to do things that I would feel unable to do because of my/our limitations. Two years ago, we spent three week in Thailand, and this year we spent three weeks traveling in Indonesia. I completely understand the stress of when will there be a next bathroom… but I surprisingly did not have any major embarrassing moments and had an amazing time! Your right, everyone was so nice and amazing over there!! I never had a problem with requesting to use their bathroom (I always bowed and asked very nicely of course), even if it was just a hole in the floor! lol

    My symptoms are the worse in the morning. On our trips, I would wake up about an hour before hubby to have time for my intestines to wake up and I would have breakfast about an hour before leaving for any scheduled tours which we usually scheduled for the late morning.

    I always had a long sleeve chambray and extra undies in my bag for just in case. I never had the guts to try those diapies… but I always thought they should make a “boy short” undy for women with our problem, like maybe with a thin lining on the lower butt part. Idk… maybe an invention int he works! lol

    Thank you for your good wishes for my future pregnancy. I actually blog about my loss at http://www.designingmama.squarespace.com if you want to check it out.

    Stay well!

  5. Luana C
    Luana November 22, 2015 at 6:33 pm #

    P.s. I took the above picture the day I found out I was pregnant with my sweet boy, Solomon.

    • Andrea M
      Andrea November 29, 2015 at 3:45 pm #

      Luana,

      Sorry for the slow reply. I wanted to have time to check out your blog and my work week just doesn’t allow for that type of thing sometimes. After reading it, and your comments here, I just want to let you know that you are definitely a strong lady. I think your ability to write about what you are going through, and bluntly, takes a lot of guts.

      I have other friends who have lost children and now write openly about it as well. Having not been in that position, I don’t know if writing about that type of loss helps (although it seems to for some), but I certainly hope that it does. I know being open about my UC has helped when I just don’t have the energy to put up my “normal” facade (once I get around the embarrassment factor). You know – the trying to act as if everything is fine during your work or school day all the while you’re constantly clocking your symptoms (is that a real gurgle or a false alarm?), what you’ve eaten, when the next meeting will be and whether you’ll have to beat feet out of there to make it to the restroom. That kind of putting on the normal takes a lot out of a person, physically, mentally, and emotionally (as you noted in another reply below). I’m not sure my friends understand it on that level. I mean, how could they when they haven’t gone through it? But, I think they try and are understanding even about their lack of understanding of what living with UC means (and are there to push me when they know I want to do something but have trepidation because of my UC). It sounds like your husband is the same.

      Your last two trips sound amazing. I made a promise to myself when I hit thirty that I would try to see as many places as I could (at least somewhere new – near or far – once a year). Your travel game plan of attempting to avoid having to spend to much time on the toilet also sounds a lot like mine as well.

      On an more entrepreneurial note, I think the boy short idea is great. You should figure out who to call on that one. We UCers definitely need a line of inconspicuous and stylish options.

      P.S. I think Solomon is a great name.

      Cheers and happy holidays,

      Andrea

      • Luana C
        Luana December 1, 2015 at 8:16 am #

        Aww Andrea, thank you for caring enough to check out my blog. I miss my dear Solomon so much, and it does help me to write about my grief. Even if no one reads my blog, I write it for him, I write it for me.

        Constantly “clocking” the symptoms, as you put it, brings me so much anxiety. Like you said, having to put on a normal face while you are calculating the amount of time it will take you to reach the next bathroom… exhausting.

        Anyway, I wish a lot of travel in the future for the two of us :)!!

        I will check into the boy shorts ;) you never know!

  6. maddy November 22, 2015 at 6:48 pm #

    The CCFA had a good webinar a few nights ago on nutrition. Check out their site. It was helpful in terms of how to look at management with food. I’ve been working at “rebuilding” my gut for months after a bad flare. Still have a really limited diet, but with lab results (blood & stool) tests am treating with various supplements. (For me, personally, oil of oregano worked the best early on.) This is all with the guidance of an MD who practices functional and integrative medicine (so lots of supplements) and, also, a doctor of Chinese medicine (that the MD told me to see) who mixes up a concoction of tea that I drink daily. That helped a lot, as well. Have you looked at various diets and tried an elimination diet? SCD did not work for me several months ago, but now I’m about ready to try it again. Slowly, slowly improving. (I hope) I take Lialda regularly and hope to get down to once a day instead of twice a day. US is a really, really frustrating disease.

    • maddy November 22, 2015 at 6:51 pm #

      Oooooops, typo: “US” is supposed to be UC — but, as an aside, I suppose as an editorial “US,” I am probably frustrating for family and friends!

    • Luana C
      Luana November 23, 2015 at 7:51 pm #

      Hi Maddy,

      the elimination diet would leave me eating rice and broth for the rest of my life. Unfortunately, I don’t think it’s what I eat (However some things obviously don’t help)… my stomach is unable to handle anything at the moment! I mostly avoid soda, coffee, dairy, red meat, and I eat small portions throughout the day. Thank you for that resource, I will definitely check it out. Juicing should be really good too, I hear. I did it for a while before my pregnancy but stopped because its hard to have fresh stuff all the time… but will start back up soon. I think we constantly have to try new things… because one thing that seems to be working can simply stop working all of the sudden! UC is truly frustrating.

      • Krista January 5, 2016 at 8:41 pm #

        I also decided to go gluten free 3 years ago, it did seems to help with the bloating.

  7. DebraK November 22, 2015 at 8:07 pm #

    You know you are a UCer when you can talk shit for hours…that’s what I say. ‘Aint no shame in a bodily function–never too much information, right? If you can’t talk shit with your friends and family, who then? Trust me when I say, I am so over this shit! I wish my life was normal! I get angry, I get sad. I feel hopeless, then optimistic. But I am just so tired of this shit!

  8. Luana C
    Luana November 23, 2015 at 7:58 pm #

    I know exactly how you feel. My UC greatly affects my life, but somehow I manage. Its annoying and (extremely) inconvenient. The worst part is having to do everything on the down low… no one understands what we go through physically and also mentally as well with all the stress, anxiety, and planning ahead. However, I always fight my way through the days little battles. At the end of the day, no one knows how much we had to fight… but that doesn’t mean we weren’t strong. The only option we have is to conquer the little battles or else we are stuck home all day and a slave to the toilet :(.

  9. Phil S. November 23, 2015 at 10:53 pm #

    My symptoms were identical to yours & very severe for 3 Yrs.
    Went on a biologic drug (Remicade) 2 Yrs. Ago & no symptoms or flares since.
    All body chemistries are different . I can just say that it is working for me.

    • Luana C
      Luana December 1, 2015 at 8:32 am #

      That is how I was while I was pregnant… Completely “free” from the disease. Since I can’t be pregnant forever, I need to find something that works for me, and I’m glad that you have :).

  10. Camille M
    Camille November 24, 2015 at 10:50 pm #

    I just wanted to add that we have all been there….it takes over your life. I have had a lot of sensitivities to medications during my most recent flare, but I am recovering due to cortisone enemas and sulfasalazine enemas. They are not pleasant, but they put the medicine where it is needed without a lot of side effects.

    Good to know for the future. Best of luck and healing to you!

    • Luana C
      Luana December 1, 2015 at 8:30 am #

      Thanks Camille, I did do enemas for a while.. but they are such a pain in the butt! lol literally… so uncomfortable. Can you believe I had a doctor suggest I include it into “foreplay” with my husband to help with the insertion… I know longer see that doctor lol.

  11. Todd L. November 26, 2015 at 5:05 pm #

    Luana, OMG ur story is exactly like mine. If you change the name and insert mine there would be no change. I’m a police officer and have suffered for about 8 years. Imagine being on a call at some strangers house and asking them to use their bathroom and knowing what it’s going to smell like after ur done. It is so embarrassing. I have to carry toilet paper in the back of my patrol car and have needed to jump a fence and go in the bushes on the side of the road. I too always know where bathrooms are and how long it takes me to get there. I just started 6MP and have been on Lialda for a long time. This July I spent 10 days in hospital due to my UC. I get hospitalized about once a year and am out of work periodically. As I speak, I’ve been out for over a week. My work has no compassion for me b/c they have no idea what this disease is like. Hang in there!!!

    • Luana C
      Luana December 1, 2015 at 8:23 am #

      Hi Todd.. wow, a police officer with UC? That sounds so challenging, and its amazing that you can get through that. I work in sales at my parents company, so I do have flexibility when using the bathroom. Sometimes its embarrassing having to excuse myself while I’m with clients… I can only imagine while you are doing super important cop business. It also seems to be a trend for me to go to the hospital once a year due to the UC, I usually stay for about a week also. ( I have also had to squat on the side of the road once or twice lol) Good luck on the 6mp, remember it can take up to 3 months for your body to start reacting so don’t loose hope. I wish you good luck at your job.

  12. Todd L. November 26, 2015 at 5:10 pm #

    I forgot about this. I recently heard about taking extra virgin olive oil about three times daily. It’s anti-inflammatory properties are said to work. I was wondering if u’ve heard of this or anyone else reading this? I always said I would never give this disease to anyone but now that my work is riding me about my time out, I can think of a few people I would gladly give it to. I wish they could walk in our shoes for a while. I’m sure their tune would change.

  13. Luana C
    Luana December 1, 2015 at 8:27 am #

    I never heard of the olive oil thing but I wouldn’t be surprised. There is so much stuff out there. Sometimes my husband says he would take my UC from me if he could… but I wouldn’t want him to suffer like that. He takes such good care of me. I think we have been put into a hard position, but we are stronger because of that. It’s up to us to find what makes us feel better, not even the Doctors know how!! I couldn’t stomach the olive oil… But I heard cabbage juice is really healing.

  14. Haadi December 3, 2015 at 7:56 am #

    Hi – hope you feel better. I found relief from UC first with antibacterials like olive leaf extract and oregano oil etc, or I thought it was bacteria-related. Then I flared. Then I figured out, long story, that yeast may be an issue. No wonder juicing garlic even if not killing a flare dramatically reduced my bleeding. I think taking things like pure colostrum powder and l-glutamine are the safest options that don’t mess with the gut and also help heal in the longterm. That’s what I’m currently doing and in remission. I hope this helps. Please look up ‘dysbiosis’.

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