Ulcerative Colitis Tips


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New to the World of Colitis

Laura Kemptville Ontario diagnosed October 2012 Colitis

That’s Me!

Bio:

My name is Laura. I am 25 and was diagnosed with ulcerative colitis in October 2012. I love cats and have two of them who have kindly spent many hours cuddling with me while I was sick and trying to figure out just what was wrong with me.

Some More About Who I Am:

I am from the small town of Kemptville, ON, Canada. I have a diploma in Business-Marketing from Algonquin College, as well as a degree in Communication from the University of Ottawa. I currently work in a bank.

My hobbies include: cardio (boxing and kick boxing), as well as reading and writing. Recently I have spent a lot of my time researching colitis, as well as what to eat/avoid. Does that count as a hobby?

Symptoms:

Currently my symptoms have subsided, as I am on a course of medication that includes prednisone and asacol.

Symptoms included: cramping, weight loss, weakness, general fatigue, passing LOTS of blood in not very (if ever) solid poo.

My Colitis:

Last summer I noticed some oddities in my poop. To put it simply: there was a bit of blood and tissue-like-matter laced in otherwise normal poo. I had no pain, just bizarre fecal matter. My mom has Crohn’s disease, so I thought I might be dealing with something much the same. I was proactive, and got a colonoscopy right away… only to be given a clean bill of health. I knew that couldn’t be right, but who was I to question the doctor and his findings. After all, the scope can’t lie…

I continued life as per normal; a little bit of blood in my poop wasn’t enough to slow me down… it even went away for a while.

This summer, however; things started to get worse. More blood. More tissue, and mucus. A lot of embarrassing sounds coming from my stomach. I definitely knew something was wrong. I was finally able to book an appointment with my specialist in September, and coincidentally, that’s about the time everything crashed.

I was tired all the time and very nauseous. I had debilitating cramps that inhibited me from doing the things I loved, like jogging, kickboxing and of course socializing. When I went to the washroom, it was essentially bloody diarrhea. I wasn’t myself, as hard as I tried, I just couldn’t be.

I went to the ER at my mother’s insistence, and was prescribed a drug called ‘teva ketorolac’ to curb the pain, but this drug only induced MORE blood in my fecal matter… in fact, it was essentially JUST blood I was passing. I had no energy, lost weight and felt very depressed.

I tried to go to work, but could not make it through full days without having to leave due to weakness, general nausea, and of course many trips to the bathroom. I thought maybe I had a bug or flu. I didn’t think that Crohn’s could induce such illness. (My mom has been in remission for years and leads a normal and healthy life.)

Because of a lot of bad timing, it took a while for my colonoscopy to be booked, and I finally had it on October 11th, after my specialist returned from holidays. He instantly diagnosed me with pancolitis, and told me I would be put on a course of prednisone and asacol. Of course, hearing ‘prednisone’ scared me; I had only heard negative things about this drug. I was sad to be diagnosed with colitis. But I was relieved that I now knew what was wrong with me. My biggest fear was to get ANOTHER colonoscopy and have the doctor find nothing, when I knew something was 100% wrong this time.

I have been taking prednisone and asacol for over a month now, and instantly I felt better. My poops are solid, and far less frequent. I have my energy back. I feel a lot better. My family is very supportive, and my job has been very understanding. Like I said, my mother has Crohn’s, and my younger brother was just diagnosed with colitis a few weeks ago, so I have people who understand what I am going through.

I know I am still in the early stages of all of this. I don’t know what to expect when I am off the drugs, but right now I feel great. My biggest concern is that I will have to rely on drugs, like prednisone, forever or that I will never go into a long lasting remission.

I meet with my doctor every few weeks, and I guess only time will tell how my body will react, but I am hoping for a long and happy remission.

The Medications I’m Taking:

I have been taking prednisone for about a month now, beginning at 50 mg, and tapering down every two weeks. Currently I am at 30 mg. I have not gained weight, and have only slightly begun noticing a “moon” face. I have a harder time getting to sleep, and staying asleep at night.

I am also taking 5-ASA. No side effects with this drug. Hard to say if it is working, because the prednisone obviously overpowers asacol.

I take multi vitamins, vitamin D and B-12. I have try to eat yogurt with probiotics, because I heard it is very helpful!

written by Laura (from Kemptville)

submitted in the colitis venting area




17 Responses to New to the World of Colitis

  1. KK-SCDer November 26, 2012 at 7:00 am #

    Laura,

    I’m so sorry you were diagnosed with UC. It is not an easy condition to deal with. I’m glad that you are feeling a lot better with your medication. I would strongly recommend researching and trying the Specific Carbohydrate Diet. You are in good shape for it to help you very quickly, since your symptoms appeared rather recently. The prednisone is simply masking your symptoms. For many people, it stops working after a while. That’s why you need to address the underlying cause of the symptoms. Look up Breaking the Vicious Cycle, the SCD, and I would really recommend that you try it for two or three months to see if it helps. I think you will come back to it eventually anyway, but while your symptoms are fairly recent the SCD has a greater chance of helping you heal faster.
    Best of luck and good health to you!

  2. UC Family Boy
    Uc family boy November 26, 2012 at 1:50 pm #

    Hi Laura,

    I have two siblings with chrohns and UC. I have been recently diagnosed, well in March this year and just came off my 2nd round of prednisone. I must say I am apprehensive to say the least as after two weeks off prednisone the first time I flared again. This time I am on the SCDiet but this is day 1 after prednisone. I am worried that I will be flaring again due to not being on prednisone but I have seen good things since doing the diet. I take probotics which I didn’t first time around and will start plant tannins for the pathogen overgrowth. I would recommend looking at diet, I agreed with KK-scd, the drugs just mask the problem.

    I don’t believe people like us, in our 20s just happen to get this randomly. I believe if we can find the right path, we can all find long term remission. What’s hard is the blood, mucus, constant bathroom trips, joint pains, aches, tiredness, stomach noises… It makes you think this is not beatable but I feel it is!!!

    I hope researching colitis can be classed as a hobby too, mind you it’s not a very sociable hobby as I found!!lol. But seriously, keep researching.. Look into also getting some stool samples done, results can give you a real insight.

    UCFB

  3. bev November 26, 2012 at 6:45 pm #

    Hey Laura…

    Definitely keep taking a good probiotic every day forever. First thing in the morning with water, on an empty stomach.

    I am in complete remission thanks to a good 50 billion strain probiotic. You may not be getting enough in just yogurt. I was on asacol for 13 years straight and it eventually stopped working, and actually began making my symptoms alot worse! I decided to just try probiotics on a whim, and I felt so well, I went off the meds. I have pancolitis too, and that was over 9 months ago.

    I feel like I am cured…like I finally “know” this so called ‘disease’ now. I was running scared before…listening to doctors…now I have taken control of my own health!

    Cheers:)

    • joe December 4, 2012 at 10:42 am #

      I’ve herd that some people have bad results using herbs for treatment because each brand is a bit different. Is there anything someone new to herbalism should know and what brands have the best probiotic?

      • bev December 4, 2012 at 12:22 pm #

        Hey Joe…

        The probiotic that got me into remission, and is keeping me there is called ULTIMATE FLORA CRITICAL CARE by RENEWLIFE.

        It’s awesome!

        Cheers:)

  4. Lisa OH
    Lisa Kapp November 27, 2012 at 6:18 am #

    Hi Laura. Thanks for sharing your story. I am so sorry abt your diagnosis, but happy that you are feeling better. I had pancolitis too, which became toxic so had an emergency colectomy before I knew what was going on! If I had gotten my act together sooner, I’d have followed the SCD diet religiously and taken probiotics. There has been alot of positive research on probiotic use w/UC lately, so what the heck? You might as well give it a whirl!

    Here’s to staying in remission for a long, long time!

    Take care,

    Lisa

  5. Laura from Kemptville
    Laura November 27, 2012 at 6:33 am #

    Hey All!

    Thank you so much for the comments, tips and suggestions. I have since bought some probiotic supplements and will be taking them daily!! I am definitely going to look into the SCD diet, as there seems to be a general consensus that it works miraculously.

    It’s awesome to know there are so many people out there to talk to, and I feel a great sense of relief knowing that!

    Laura

    • bev November 27, 2012 at 10:01 am #

      This is a GREAT site Laura. I’m glad you found it. It has literally SAVED me.

      Sadly(in that we all have UC)…yet happily(in that we all have each other), there are alot of us here to talk to!

      Welcome!

      Cheers:)

      • Laura from Kemptville
        Laura November 27, 2012 at 11:36 am #

        Yes, it seems to have effected everyone in very positive ways! Thanks so much for the ‘welcome’.

  6. joanna November 27, 2012 at 1:43 pm #

    laura, you are SOOOO lucky to have responded to the meds so well. i wish i was like that! most of the meds have made me so much sicker- UC wise or with the nasty side effects. i’m glad you haven’t experienced any problems with them.

    my dad also has UC but his was very mild so he would always yell at me for “making it up” or “causing it myself.” mine is pancolitis, too, so much worse than his. he was able to do 6 months on prednisone and go into remission- 24 years already with no symptoms. some people just luck out. maybe you will turn out like him- not personality wise but UC wise haha

    • Laura from Kemptville
      Laura November 27, 2012 at 3:50 pm #

      Hey Joanna,

      I know, I do feel really lucky! A lot of people have it far worse than I do… but I’m still very afraid for when I come off of prednisone, for sure. It’s too bad your dad would accuse of you of ‘making it up’, you’d think he would understand since he himself had the colitis (even if mild!) Hopefully he knows now if effects everyone very differently.

      So if the medicine makes you more sick, have you found any alternatives that have worked?

      Laura

      • joanna November 27, 2012 at 5:24 pm #

        i’m happy that most of my family understands and my mom is the biggest help of all!

        so far, the paleo diet has helped with my symptoms. i’m going 5-6x a day but still have urgency and pain with my bm’s. i’ve tried so many supplements but it doesn’t seem like any of them make a difference (probiotics, l glutamine, astaxanthin, slippery elm, aloe vera, herbs, fecal transplants). my next supplement to try is bovine colostrum. i’ve heard some good things about it since it contains all the nutrients babies need to grow really strong the first year of their life.

        prednisone was a tough one for me. i gained 40 lbs in two days! it was totally nuts. all of it was water so i had to use a walker for a few months and couldn’t even brush my hair or bathe myself. my limbs just weighed too much for me to lift them on my own.

        definitely remember to take your vit d, calcium, and magnesium for your bones. i have osteopenia now and i can blame some of that on the prednisone.

  7. Nick
    Nick November 27, 2012 at 11:20 pm #

    Hey Laura

    Enema’s or suppositories might help depending on where your colitis is in the colon. It helped me out with the symptoms although it came back when I stopped. I cringed at first using them especially because I was living in the field at the time and had to do it in a port-a-potty but when you are able to do them in your own home they are helpful

  8. Kyle
    Kyle November 28, 2012 at 11:53 am #

    Laura- I know the worry about the lovely “preddy” I have been on it for a little over 3 months know, starting at 80 mg when I got out of the hospital now finally down to 10 mg’s, can’t wait to get off it. So over the moonface! Sounds like you have a great support system with your family, which is one of the the key things, people around you who understand what you are going through. For me it came through a virtual connection with a dude half way across the country, but it has been great to have someone who you can talk to who understands what you are dealing with. I am currently on Remicade, which is an IV infusion every 2 months, my GI has high hopes to get me off all drugs but the Remicade, but we will see. Keep your attitude positive, this disease isn’t the end of the world, you can get back into your routine of working out and staying active. One plus about IBD is it keeps you skinny, that’s how it’s worked for me anyways : ) But once you get things under control, you begin to know what to look for and defintely what to look out for!!!! Just like anything it takes time to fully understand how your UC works, and we are all different. Reading Adam’s surveys on Flares, every single person has a different trigger, but one big one is stress, try and keep your life stress-free, that can be hard, but it’s important!

    Keep positive and be well

    Kyle

  9. Laura November 28, 2012 at 9:04 pm #

    Hi Laura, thanks for sharing your story. I was diagnosed when I was a few years older than you, and we have many similarities in how things started and progressed. Reading stories like yours helps me feel not so alone. I too, worry about the future at times and wonder if I will be dependent on drugs or ever achieve a lasting remission. Stay positive, hopeful and take care of yourself are the only words of advice I can give right now being new to UC as well. Thanks again for sharing, I wish you all the best!

    Laura

  10. Cameron
    Cameron December 2, 2012 at 10:17 pm #

    Hi Laura,

    Thanks for sharing your story. I am glad that the medication has worked for you and that you are back to feeling like your old self again. It is great that you are educating yourself and becoming such a confident advocate for your health– congrats on taking charge of the situation. I can totally relate to being afraid of becoming dependent on the drugs but I think it is important to get the symptoms under control so we can heal our minds and bodies in other ways. Hopefully this will allow us to eventually be drug-free.

    Like Bev, this site has been an incredible support network for me so I am glad that you found it. Keep us posted on how you are feeling.

    Wishing you continue peace & good health,
    Cameron (fellow Ontarian)

  11. Amanda December 4, 2012 at 9:29 pm #

    Laura,

    My symptoms, like yours went away with Prednisone. I was put on only 40mg and tapered down over the course of the 6-7 weeks after my diagnoses (May 2012) and colonoscopy. I was then put on Apriso and that lasted for a few months. My doc decided to put me on Lialda, of which I’ve been on for the last few months. I have had very minimal symptoms of UC since being treated with the meds, however I do suffer from back and joint pains. When I was on prednisone, I gained about 30lbs (I couldn’t have weighed more than 125lbs when I noticed symptoms and dropped down to 110lbs while suffering.). It was horrible, it gave me really crazy mood swings and crying all the time. I hope I never have to take it again. :/ Anyways, I’m glad you’re not noticing any symptoms right now and I’m sure that you won’t after you’re off prednisone. Good luck !! I just found this site today and am very glad that I have found so many people who are just like me.

    Amanda

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