Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Bored

Introduction:

I’m rather ridiculous and fun. I love to laugh. I have a great group of friends who I love spending time with. I’m a high school teacher. 32. I love learning and growing in my personal life. I’m a born-again Christian. I like the colour purple. I’ve been out of commission for the past 7 weeks and am starting to go a little crazy.

Colitis Symptoms:

I’m currently exploring the double plus ungood experience of c-diff colitis, combined with a possible uc flare, gout-ishness, and waiting for the results of a mono test.

My Colitis:

I’ve been living back at my parents for the past 7 weeks and they are taking excellent care of me. I was diagnosed with very severe Ulcerative Colitis during my university years (about 8 years ago). I was optimistic and switched doctors when the original specialist told me they’d be removing my colon soon. I structured my eating around my class schedule, carried a change of clothes and rarely missed a day of school. I’d pretty much go to class and come home and crash in agony. Most of my friends had no idea what I was going through. Prednisone did it’s job (aka make me fat and happy) and I mostly just had minor to medium flares for the next 8 years. I revamped my diet, took my meds, explored natural medicine, and survived quite nicely. Typically resting my digestive tract and body enabled me to recover quickly so I wouldn’t suffer too badly for more than a week. I tend to forget unpleasant things and would consider myself a healthy person (in between flares).

This past September I had a lymphatic infection that I had to take antibiotics for. Within a week I was down with what I thought was a horrible flare of UC. You know the type where you poop 50 times a day and it’s mostly blood and pus. I hate hospitals but ended up in the hospital one night to make sure that my colon was intact due to severe pain. Things didn’t seem to be lining up and I didn’t understand how this flare had come on so suddenly. I was sitting staring at the Prednisone pills my specialist prescribed me when I decided that this just didn’t feel right. I ended up testing positive for c-diff and started treatment for that. The Flagyl they had me on made me wish I was on Prednisone instead. It had brutal side effects. I finished the course, but the C-diff is quite stubborn so now I’m supposed to take Vancomycin for C-diff colitis. My doctor called me this week to let me know that my uric levels are high (I’ve had a kidney stone before so I’m hoping not to add that into the mix) and then later to ask me to get my cbc done again since I might also have mono as well. (Hey, why not add that into the mix, right?)

I’m normally an insanely busy person with a very active social life. I teach spec ed teens full time, work out, and am very involved with my church. I’ve never been out of commission for this long in my life and man, does it take a mental toll! I normally don’t watch a lot of TV or have time to sit around, but now that’s all I do. (I think I’ve literally watched more TV in the past 7 weeks than in the past 7 years. Anyway, I don’t talk to a lot of people with UC and I’m bored. I’m most concerned about UC taking over my life and becoming a reclusive, pessimistic hermit. Okay not really, but seriously, sitting in my house gets old….

Where I’d like to be in 1 year:

Well today I was supposed to be doing the CN Tower stair climb with a friend that I did it with last year, but obviously that isn’t an option due to my current situation. So next year, I’d like to be doing the climb, in great physical shape and even beating my time from last year. I’d like to be healthy emotionally, physically, and spiritually.

Colitis Medications:

I’ve taken Asacol since diagnosis. I don’t know if it even helps to be honest, but I’m scared to go off it. I think it makes my hair fall out though, which is annoying.
I took prednisone in my worst flare. It worked great and was worth the weight gain (okay, the face weight gain. haha).
I’m currently doing a heavy dosage of antibiotics in an attempt to avoid other meds.

written by Mandi




teacher

11 Responses to Bored

  1. bev October 25, 2012 at 9:24 am #

    Hi Mandi,

    Sheesh, girl! What alot of ‘crap’ you’ve been and are going through!

    First…don’t be afraid to ‘go off’ of the asacol. I was on it for 13 years straight with my doctor telling me I HAD to stay on it forever. It was not helping…in fact, now that I am completely off of it (almost 9 months now!), I realize it was actually contributing to the worsening of the UC symptoms! Yep…I shit you not!

    I decided to try a really good probiotic (CRITICAL CARE ULTIMATE FLORS by RENEWLIF) and it took about two weeks, and much to my absolute surprise, almost all of the UC symptoms disappeared (urgency, pain, gas, etc)!! I was still nauseated, which my doc always chalked up to being another symptom of UC…but it was not! I stopped the asacol, without the doctor knowing (or approving…he’s like my father, always telling me what I can and cannot do), and the nausea went away!! Joy!! I will NEVER take meds again. All I had left of the UC was a bit of blood. Went back to the vitamin store, told them, and they recommended L-glutamine. (Unfermented, in powder form, I mix one scoop of it with juice and drink it! Easy!) Two days later, the bleeding was gone too! 9 months and counting!! Man, I hope I’m out of the UC woods for good!! I sure feel like I am this time…it just seems ‘different’…I haven’t felt this normal in 15 years!!

    My hair fell out like crazy on asacol too. Not anymore! I only wish I hadn’t wasted 13 years of my life on that freakin’ drug now. We don’t know…we just listen to the doctors, like they are GOD. NOT!! Do not be afraid…if it is not helping you, WHY STAY ON IT???

    I’ve said my piece…I wish everyone with UC would at least TRY a really good probiotic…you never know right? It workee for me…what if it works for you, too?? I am able to live absolutely normally, after 15 years with UC, which turned into pancolitis (the whole colon) by the way, without ANY meds at all. I plan on staying this way, too.

    I also take vitamin D and a 4 mg capsule of astaxanthin every day…two natural anti inflammatories. I don’t know if they are really imperative, because I was all better before them. I take them just because UC has to do with inflammation. The probiotic and the L-glutamine are my essentials…everyday!!

    Cheers…I really feel for you…you’ve been through WAY too much…and you have the BEST outlook still!! What a gal!!

    P.S. I, too, am sort of ‘ridiculous’, but in a great way…never though of describing it that way!! I love that you are too!!

    Bev:)

    • mandi October 26, 2012 at 3:05 pm #

      Hi Bev,
      Great to meet another ridiculous person ;). I hope this reply goes through to you cause when I replied to other people everything vanished. I put my magic wand far away this time though. Thanks for your encouragement and ideas. One of the probiotics I take is actually the Renewlife one. How many do you take a day? I take L-Glut and Vitamin D too, but haven’t had super results yet (although I think it helps some and could be preventing me from getting much worse). I’ve never heard of astaxanthin but will look into that. I’m so glad to hear what you had to say about Asacol! I seriously sometimes think my doctor thinks I’m crazy when I say that my hair is falling out because of it but it looks like I’ve lost almost half of it. How long after you went off Asacol did your hair start growing back? I’ve thought about buying extensions in the mean time. Haha. I’m so vain. (Although I’ve decided that the best part about being too sick to leave the house is never needing to do my hair or makeup. Oh and constantly wearing yoga pants. I love those things!) That’s so cool that you are living med free now! I started with pancolitis, but seem to have made a lot of progress (until C-Diff sank it’s teeth into my colon, but hopefully the good bacteria will fight it off soon). I can’t want to be med free! It’s exciting to hear stories of people who made it where I want to be!

      • bev October 26, 2012 at 5:20 pm #

        Mandi…your reply did go through!! Here I am:)

        How long have you been on the probiotic so far? I know it can take as little as a week, or as long as a couple of months to really work. Adding the L-glutamine is key, as well…I think anyway. It stopped my bleeding. That was the last symtom that hung on until I took the L-glutamine. Sometimes, I took more than one scoop, but I usually only take one per day. I don’t know why these two things are not working for you. I have so much faith in them! I say give it more time. Never forget to take them. Every single day. I take one capsule of the probiotic per day now, but, at the beginning, when I would still feel some pain or whatever other little symptom still cropped up, I would sometimes double up on it and take two, spaced apart morning and night. Not everyday, but sporadically, depending on how I was feeling synptom-wise. I always take my one capsule now at 6am as soon as I get up, with water, before I eat anything. I don’t usually eat until 8:30am or so because I do cardio and abs when I get up. (I’ve been execising for 25 years, so I have always done it first thing in the am).

        As for the astaxanthin…I’m not sure if it actually played a part in my remission, but I learned what a powerful little anti inflammatory it was, and I’ve added it to my daily regimen.

        Man, I really want this to work for you….Oh, I almost forgot to answer the hair question…my hair is growing great again now…I’ve always had a long and really curly spiral perm, so it looked like I had more hair than I did even when I was on the asacol. My doctor didn’t give a crap about my telling him that my hair was falling out either (and, yes, it seems like I lost half of it too!), because I care so much about my hair, that I always blow dried and product-ed the piss out of it, so that it still looked good. I’d say it only took a couple months for it to start to not fall out any more. It looks and feels thicker now, after 9 months off that nasty old asacol. That’s so important to me! I’m kinda vain about the hair…lol

        Please hang in there…and keep me posted. I am trying to save the UC world!! I really really want to…I can’t help myself. I think the drugs prescribed for this disease are positively EVIL. We should feel healthy while we are alive…we should not feel like we are dying! I feel like I lost 13 years of my life while on asacol (that I cannot get back), and I try not to think in those terms, because it makes me sad…and I like to be happy, not sad!!

        Cheers for now,
        Bev:)

        • mandi October 26, 2012 at 6:08 pm #

          Yay, glad it went through! I should have mentioned that I have C-diff right now (and the colitis that it causes too) so actually, maybe the probiotics and everything have been helping a lot with UC and are just slower to help with the C-diff. I started getting a little ill in May and assumed it was UC, but I had been in Cambodia for a while, so it’s possible I picked up something there that was causing the problem too that just didn’t show up in stool or blood tests. The problem with having UC, I find, is that every time I have pain, abnormal blood work, diarrhea, bleeding, etc, the doctors just tells me it’s UC acting up and I believe them. I starting taking probiotics about 8 years ago I think? At first I had to take a baby formula cause anything stronger seemed to make me worse. I’ve had years when I didn’t take them though. I’ve tried various brands and some actually seem to make things worse (not sure if it was weird additives or coincidence or what). I just switched to the renew brand more recently. I take between 1 and 3 a day. I think I’m going to try more L-Glutamine too. I pretty much have the worst memory. I have a running joke with my naturalpath about how I forget everything (so she writes it all down). So anyway, having a bad memory, I’m not always as consistent with pills as I should be. I have started keeping a notebook and writing things down so hopefully I can keep track that I’m getting them all in. My specialist recommends probiotics and vitamin d too btw. If the notebook doesn’t work I’m going to stick a big white board up on the wall and use that. haha.

          Good for you for exercising all the time! I’m looking forward to the day when I’m back at the gym. I totally understand you with the hair thing. I used to have super thick hair so I can still pass for having regular hair, but people that know me know it’s getting reall thin. When my boyfriend mentioned that I had bald spots I knew there was no way it was in my head. haha. If I knew Asacol actually worked it’d be totally different. But I super hate the idea that it could be making things worse! Right before I got C-diff I’d been planning with my specialist to switch off of Asacol to something else, but didn’t get the chance. As soon as I can beat this thing, I want to try again.

          Thanks for your encouragement. I’m kinda new to the whole sharing about having UC thing. I like hearing positive stories too. They inspire me. :)

          • bev October 27, 2012 at 7:36 am #

            Anytime, Mandi, anytime! I want to be here for anyone who needs encouragement…which is 100% of us all! We should all be here for each other. Life is beautiful, and we can’t forget that!

            Yes, so get rid of that C-diff, and just maybe, you can start to ‘LIVE’ again!!

            You are the best!!

  2. bev October 25, 2012 at 9:27 am #

    The probiotic is made by RENEWLIFE…with an E at the end…sorry…

    You know, I should be making money or a kickback from renewlife…I’ve told how many people about it??

    Hey, RENEWLIFE…you should be paying ME!! Or, at least FREE probiotics for life how about???

    • julie November 10, 2012 at 1:32 pm #

      Hi Bev,
      I felt the need to send you a message, i can’t do anything other than good things about you, you are truly lovely and uplifting also inspirational. I have had UC ten years without much interference in my life, until 12 weeks ago and boy it hit big time OMG i never felt so bloodi wretched. Two hospital stays totalling 12 days, the blood OMG the urgency, you know where i am coming from. Anyway i was staring surgery in the face and i was shitting myself literally, at the eleventh hour they decided to try me on infliximab, yeah zero immunity etc. But I am steroid resistant now and boy i hate that drug i have gained 20 pounds they suck. I have had my first infusion which i responded to overnight. But this does not make me happy cos i am sick of drugs and i have to go into hospital this week for my next infusion. I want to throw the towel in but am scared i take a probiotic 20 million strain, what strain is yours, i am also just looking up a prebiotic which sounds very good too. You devote so much of your time you are truly great x x

  3. bev November 10, 2012 at 2:13 pm #

    Aww, how sweet! Thank you Julie!

    I take ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. It is a 50 billion strain probiotic. It has saved me from any more drugs…and from surgery, which I was also considering before I tried the probiotic.

    Please also know, that I take L-glutamine powder every day, as well. That stopped all of the bleeding, which seemed to be the only symptom that the probiotic didn’t.

    You are a gem!!

    Bev xoxoxo

  4. julie November 11, 2012 at 3:26 am #

    Hi Bev,
    I take a 20 billion strain and have been trying for a while to get a 50 billion i will look on the net now i know the brand. At the moment its the blood i cant maintain so i am getting some L-glute today. Also do yuou follow a diet at all
    Thanks hun x x julie from the UK

  5. bev November 11, 2012 at 8:10 am #

    Julie, I am happy to say that I don’t follow any special ‘diet’ at all! I can now eat broccoli and almonds, which I could not eat before I healed myself. I love to say that…healed myself. The doctors sure couldn’t do it no matter what they prescribed to me…

    I just eat whatever I want now with no problems at all. No pain, no gas, no bloating. Nothing bothers me anymore, not spicy food, not junk food, not raw vegetables or nuts! I’m not kidding. But I couldn’t eat whatever I wanted when I was flaring, that’s for sure. I am so happy to feel so normal again.

    Cheers:)

  6. julie November 11, 2012 at 12:47 pm #

    Bev, hi, you absolute lucky lady i am in awe of you, to think you can eat what you like is amaaaaaaaaaaazing, although today i ate a whole pizza yum yum, but not sure if i will regret i just wanted to eat somthing naughty. Hey ho, i agree probiotic helps i have found the 50 billion strain on the net, so happy day’s
    Thanks hun julie x x

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