Ulcerative Colitis Tips


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Digging Deep: Not Eating Chocolate–even on Easter

Intro:

Hello Uc’ers
Hours ago, it wouldn’t have been possible for me to use that term to address people; it’s a new world. I’m a 22 years old student and English is my second language, so sorry in advance for mistakes. I’ve been diagnosed with Ulcerative Colitis just last December, and ever since I’ve been trying to adjust my already messy life to this new…development. I live in Canada but am currently on an exchange program in Australia (it’s a bit of a risk, the doctors were quite reluctant to send me away with everything that went on). But I’m determined not to let my dreams go down the drain.

Story:

I don’t really have a story worth writing, but thinking about all the other people on the internet reading stories, just like me, secretly hoping to find someone just like them who is making it–or at least who can openly tell their story–I decided I should add mine.

It all began last Summer, when I decided, ironically, to take more care of my health. I was jogging about thrice a week, eating loads of veggies and salads throughout the week, and resisted the temptations of cookies and brioches–my favourite desserts. And then the pain began. Sudden cramps for just half a minute, everyday. As a woman, cramps are a domain I’ve learned extensively about through puberty, so I knew these types of cramps were not normal.

But I was getting so much healthier a bit fast, so I thought I was putting too much pressure on my body (which was kind of true). And then after three weeks of cramps in August, the diarrhea began. I wasn’t alarmed at first; I had heard of many people who had suddenly changed their diet and were jogging a lot had this condition. After 2 weeks, it stopped. The pain was always there, and growing, but there was nothing else–until November. That’s when the cramps became unbearable. I couldn’t walk or even stand. Breathing hurt, so eating was not even crossing my mind. I always hated taking medication and seeing doctors: I had a very strong faith in my body’s capacity to heal itself. When I saw blood in my stool, however, I had to admit defeat. I wasn’t getting better–I wasn’t getting way, way worse. It was time to alert the family (they tend to overdramatize and panic easily, so I kept all this for myself, just in case it was nothing) and seek a doctor. The first doctor I saw t old me I probably was lactose intolerant and was desperately trying to send me home as quickly as possible, no matter how hard I explained that I haven’t drink milk in months (it made the cramps worse, I had noticed). So I had a talk with my family and we all gave my body an ultimatum: if there was still blood in 4 days, we would go to ER.

You all know about this part of my story. I went to the ER. They made me drink a horrible orange concoction that ‘washed’ (emptied) my entire digestive system, so that I’d be ready for a colonoscopy on the next day. I will avoid the details, but this has been the hardest, most painful and most tiring night of my entire existence. If I thought I had seen blood before, this was the red sea in its literal meaning. You have no idea how often I thanked whoever’s up there for sending my mother away on this first night in the hospital. I’m sure she didn’t get much sleep, but no parent should ever witness their child in the state I was. It’s just mean.

A week later I was diagnosed, and high doses of cortisone were injected directly in my veins–I loved it, it freaked my mom. The medication worked right away and the pain lessened. So I rested a lot for the next month, tried desperately to find a cure diet and to understand my condition–went on to check the research made in Belgium, the US, Canada and more…only to feel quite lost amidst it all. People didn’t know much more than I did, or that my doctors told me. And worse, the more I read, the more I realized that in most cases, the UC’ers had the same symptoms, which had created the diagnosis, but the cause of these symptoms differed. Basically, I felt like someone, faced with thousands of sick people, decided to create a category (the somewhat diarrehea-pain-bleeders), and got stuck at the labeling level. Those thousands of sick people are leading such different lives–what’s the link? That was my obsession for the following weeks. And then I began to feel much better. U ltimately the disease wasn’t so bad. I booked my plane tickets for my semester in Australia, and started working on the projects I had missed in school. I had to carefully monitor the amount and type of fibers I ate. It wasn’t the end of the world, right?

Well, not exactly. A week before my flight, and exactly a week after my last dose of cortisone, the pain started again. I knew what was in store for me. I had lost weight. I slept more. I was weakening. And I was about to leave the country, where my doctor should be monitoring me. I had a long conversation with him, and he made it clear that in my state and probably for the first 6 months after my diagnosis, no one knew how severe the disease could become. Basically I was going to the land Down Under (where, let’s face it, most stuff can kill you) and I was going there with an immune system that wanted to bring me down. Could I face it all?

So far so good, I would say. Sure, my state is not perfect, and I’m still taking cortisone, but I’m traveling and experiencing new things–like having a parrot on my shoulder and feeding koalas–and I think that’s what matters. It was after a bad night (I ordered some fast food–I knew I shouldn’t have! But eh, I’m a student…) that I stumbled on this website, and was blown away. So many people, who knew exactly what I meant by ‘abdominal pain’ and who shared their stories openly! I was amazed and inspired. I needed to be able to do it too! To reach out instead of trying to deny what I had. This has been the hardest part for me until now. Revealing this ‘silent disease’. And accepting it as part of my life. I’m still trying to get over the ‘geez all those people don’t realize the chance they have to be able to eat chocolate every day’ phase, and must admit that this year’s Easter Break has been particularly difficult because of that.

Enough with my rant. I have some questions too! Do you guys feel like you are obsessed with sweets while taking cortisone? I just have rages and weird cravings–like a pregnant woman. Like I can crave honey sundaes (who has honey sundaes? Do honey sundaes even exist?).
And what do you do in a ‘crisis’. Do you follow the B.R.A.T diet like a normal diarrhea? Do you keep on following the SCD for those who abide to it? If so, do you vary it slightly to avoid some fibers? Do you eat clear soups? What’s your trick?
Also, do you tend to sleep more since you were diagnosed? And do you wake up soaked in sweat? I’m sorry to ask so many questions but, who else can I ask?

Thanks for reading this! -sends love and fictional chocolate to you all-

-Farah


Farah’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!!

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7 Responses to Digging Deep: Not Eating Chocolate–even on Easter

  1. jenni April 28, 2011 at 7:46 am #

    wow. i felt the same way when i was diagnosed. i thought for sure that there was just a one label slapped on multiple different problems. not really sure i have given up on that thought. i crave everything while on cortisone. i realized i felt hungry last night around 2 in the morning and said”noi am not eating”. yes, while i am flaring i sleep more. tired, lightheaded,weak. ha i see i am not the only one who sweats. i have night sweats something awful sometimes. as for my diet. i dont do any specific diet. i try to stay away from processed foods. try to do everything homemade. my goal is to start making my own bar soap also. (i know weird) i figure with all the chemicals in store bought soap. maybe cutting those out can help. i am always searching for some miracle cure from change in lifestyle. i suppose that is what keeps me going. i love how you dont let UC get you down. i am always to scared to go anywhere while flaring. even the thought of the grocery store has me scared.

  2. Jason2 April 28, 2011 at 8:56 am #

    Thanks for sharing, Farah. I have also been waking up in pools of sweat! I didn’t realize this was a common thread for the somewhat diarrhea-pain-bleeders group.

    I’ve done a lot to change my diet though I’m resistant to the SCD, mostly because of my own dogmatic anti-mcarthy mentalness. I eat a lot of avocado and grilled fish now. Mild, unacidic foods and lean meats. No cheese. No refined sugars. I went pork crazy a couple of days ago and had bacon during breakfast and pork chops at dinner, and paid the price. Too much fat in too short a time I think.

    I’ve had a withdrawal from refined sugar. I wasn’t a major sugar eater by any stretch, but it’s everywhere. Avoiding it has made me feel like a crack head. I’m often shaky and faint. I don’t think this is solely the result of sugar withdrawal, but I think it’s part of it. I mean pooping 6 ounces of blood a day shouldn’t make anyone shaky, right?

  3. Adam
    Adam May 25, 2011 at 9:06 am #

    Hey Farah,
    Its been a litle while now since you wrote your post, but I wanted to find out if you are still having the night sweats or not? I definitely remember them, but they almost always happened when I was in the middle of a nasty flare up.
    I hope you’re doing well again,
    Best,
    Adam

    • Farah November 24, 2011 at 4:17 pm #

      Hello!
      Sorry, it took me a while to venture back to this website–still trying to deny my condition, I guess. So a lot happened, haha.
      Sooooooo. I got very sick in Australia (to no U`Cers’s surprise), but I had a student health care coverage that allowed me to go to the E.R. in Melbourne, where I met a very considerate and sweet gastroentologist. When I explained to him that I couldn’t go to his clinic (because my health insurance didn’t cover that), he was very understanding, and took my cell phone number. He would have a consultation with me on the phone, after I leave the hospital, to see how things were going. If I was still unwell, I’d go back to the E.R, where he would examine me again. Basically, he really, really relieved me. I was kind of freaking out to go to the hospital in a foreign country without any close friend or family members at my side. But I did what I had to: I located a path on tripadvisor, hopped on the tram, got off at the hospital stop, and walked into the E.R with my Canadian passport, my Australian university student card, and the scans of my colonoscopy made in Canada (as reported in my last post.
      So the Aussie doc prescribed more prednisone, which I had to buy myself (no coverage on that), but I was lucky; those steroids are dirt cheap compared to Asacol. As a Canadian, paying for my drugs was somewhat unusual. Basically, the plan was to give me enough prenidsone so that I can fly back on the date of my plane ticket ( a couple of months later). Luckily enough, the whole thing worked out. It was a bit silly not to take it all more seriously. I mean, those steroids have dangerous effects long-term, and so my goal shouldn’t be to pop those pills whenever I want to go on as if I had no disease. But I had a trip to finish, a semester to pass in Australia, and a brother to join in L.A for a week, before returning to the land of free gastroenterolgists, a.k.a., Canada.
      And all of it, once I got better, was so much fun, that the trip to the E.R. and the health insurance complications became “part of the trip experience”. I was lucky, and I am aware of it.

      I’ve been decreasing (yet again) prenidsone since my trip in Australia (February 2011 to August), until last Tuesday, when I just couldn`t fight it anymore. I was down to 2.5 mg, and was supposed to stop entirely in two weeks. But it made a month since I was very fragile, rashes coming and going, being unable to attend all of my classes, and just being exhausted.
      So my doc increased my dose of prednisone to 20mg, and I`m having another colonoscopy tomorrow afternoon. If the results show no major complications, I should switch to something else, considering that my Canadian doc is horrified that I have been living on prednisone for such a long time (an entire year). I’m not sure yet what he will give me–do you guys know any types of drugs I should definitely keep away from?
      Aaaaand. As the weirdo that I am, I’m planing a road trip through Mexico (in the safe bits in the west) during the holidays, to see some temples and archeological sites. I’ll just need to get better and steer away from Mexican food and Tequilla (my favourite)…somehow.
      Do you think I’m being delusional about all this? I’ve been struggling a lot to make long-term plans since I’ve been diagnosed. Organizing my trip to Australia was quite difficult. Do you guys travel a lot with your disease? Do you have any tips? What about you, Adam? I know you’ve around a bit…?

      Thanks!

      • Adam
        Adam November 24, 2011 at 9:51 pm #

        Wow Farrah,

        Pretty wild ride you’ve been on indeed.
        That’s way cool that you were able to pull of an Australian adventure since heard from you last! I’ve always wanted to get out there, but just haven’t made it there yet. Someday though.
        Hey, if you make it down near Berkeley California on your next adventure, feel free to hit me up, that’s where I’m at most of the time lately.

        And, as for the prednisone, I hope you can get off that stuff soon, sounds like you’re moving in that direction, so that’s good.

        You asked about drugs, and what to look out for etc…. I personally think it’s just so individual for each person, what might work for me, might not for you etc…
        Probably best to consult with the GI doc on that, i’ve tried, Asacol, Colazal, sulfasalazine, Humira, Prednisone, and Remicade and a few enema meds. None of them worked particularly good for me, the best being the prednisone, but of course like everyone, can’t stay on that forever…

        As for travelling, I think that is so great you are into that. That’s my favorite thing to do. For me, most of my international travel was before I was diagnosed, just a few small trips to mexico since diagnosis, so as much as I wish, I just dont have much experience with post diagnossis INTL travel (YET!!!!).

        Keep us posted, and congrats again on your aussie voyage, way way cool,
        Adam

        • Farah November 27, 2011 at 8:54 pm #

          Hey guys,
          Thanks Adam for the kind words! This was my first trip ever (never even been on a plane before!), so it was a big deal for me to go to the other side of the world and come back in one piece, sick or not.
          So now I’m done with the examinations, and now starting new medications (praying that this will work). I`ve had very little remission time, so I’m pretty exhausted now. And very scared, to be sincere.

          I’ve just been given 100mg of Imuran, and after searching through this website, my concerns were confirmed. I’ve been only two days on it (hopefully I’m just unreasonably freaking out), but I’ve had palpitations, nightsweats, nausea, and and now am sleeping day and night. The white blood cell test should confirm whether or not it is dangerous for me to continue to pop these pills. This all makes me very anxious since the FDA since to be aware of the dangers of Imuran enough to enforce putting a caution message on Imuran’s labels.
          Basically, I don’t trust it. I just feel worse overall, and I’m a bit shocked that despite my attempt at asking my Gastro-enterologist details about this ‘new’ drug, he never told me how severe the effects of Imuran could be. So now I’m not sure whether I’m panicking about all of this or if my fears are well-founded. I know you’ve never taken it Adam, but was it due to a personal choice? Have you read mostly bad stories about this drug?

          Do you guys think that Imuran deserves a shot? How far should we go to lead a sort-of-normal life? Is there a line to cross for a disease with unknown causes and cure? As far as I know, we’re a bit the guinea pigs until we all know more about UC/Crohn’s…?

          I’m very confused…
          Thanks,

          Farah

          • Adam
            Adam November 27, 2011 at 10:02 pm #

            Yo Farah,

            I was told about Imuran by my doctor and it was recommended, but I declined the prescription.
            It wasn’t so much anything about Imuran itself, but rather that up until that point, I had some horrible side effects from other medications, and I just wasn’t willing to roll the dice again with another drug. That was my reason, this website didn’t even exist when I made that decision though, and I wasn’t doing any research on medications at the time either, so it really was just a personal choice not to jump on that wagon.

            As for your question on does it derserve a shot…great question. I don’t have an answer to that. I would say though that for sure there are UC peeeps here who are using it and finding it very beneficial, others probably would say the oppositite. My guess is that you will know if it is Imuran is a good ulcerative colitis treatment for you sometime pretty soon though.

            Take care Farah,
            Adam

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