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New to Site – Off to Hospital!

Introduction:

My name is Jill and I’m a 46 year old single Canadian mom with 3 awesome kids. I have had Ulcerative Colitis for six years. My father had it and has a complete removal of colon. He started with an outside bag and now has an inside pouch. I’m super active and busy and DON’T have time for this damn thing!

Colitis Symptoms:

I’m in the midst of the worst flare I’ve had. I’m on salofalk, asacol, and cortifoam but none of it is working. The GI doctor has asked me to come tomorrow and get admitted to hospital. Sounds like I have the same symptoms as everyone else here. Bloody mucous-y stools. Probably 15 – 20 a day. My pain gets worse throughout the course of the day. My head pretty much controls what I eat. It’s funny – it’s almost like it knows what is going to hurt. I cut up a beautiful pineapple and quickly realized I could not put it in my mouth! I’ve lost 16 pounds since this flare started.

Off to the Hospital

What can I expect? What do they do when you go in to hospital and how long have you stayed?

I hate the thought of leaving my kids for any length of time, but due to the magic of the internet, I guess I can keep working from my hospital bed! Any advice???

And my doctor is also my friend.

Can’t wait for him to get all up in there again :(

My kids are worried – teenage boys don’t generally like to believe there is anything wrong with their parent, so they’ve been good about simply telling me to stop talking about my butt, but now they are faced with the fact I’m actually sick enough to be admitted to hospital, they are less cocky!
For the first time, this time, I am sore all over. My neck, legs, arms everything. Has anyone else experienced that? I feel like i have the flu all the time.

And here’s the grossest question ever -

any suggestions as to how to collect

the stupid stool samples for the doctor

when what I am trying to collect

is as viscous and watery as it could possibly be?

Thanks Lab guys for putting a spoon/fork utensil in that bottle – that’s really going to come in handy, NOT! How about a straw?
I haven’t spoken to my Dad much about this since he’s been down this road and had numerous surgeries, I really don’t want to make him nervous. He always sounds so guilty, like it was his fault I got it. I feel awful when he sounds that way. They live in a different province from me, so chances are I can get in and out of hospital without telling them I was being treated. Good idea, or stupid one? I’d actually appreciate some feedback on that.

written by Jill

submitted in the Colitis Venting Area

Tags: hospital





12 Responses to “New to Site – Off to Hospital!”

  1. BevMarch 3, 2012 at 4:48 pm #

    Hi Jill,

    Wow, you are really going through it aren’t you…

    You asked about pain…yes…sometimes I have it everywhere, and it does feel like the flu. It is so sore it’s unbelievable. There are so many symptoms that I think are directly related to UC. I tell my doc about the pain, but he doesn’t really know. He says it may or may not be related…but we know ourselves, right? I never had it pre-colitis.

    I don’t know what to tell you regarding the surgery. I hope I never have to have it, but I will if necessary. I have always kind of had the thought in the back of my mind, that I will end up losing my colkon eventually. I am trying not to think like that. Before anything that drastic, please try taking strong probiotics. I have been taking them daily, for almost two months, and they have helped with the pain, frequency, and bleeding! I can’t really believe it because I have never believed in natural stuff helping. The medical meds aren’t really working any wonders, though.

    Today, I took my first dose of Mezavant (Canadian name for lialda). I was on 12 asacol (4 pills, three times per day), and I wanted more convenience. I take four of these Mezavant, once a day. Boy, was I ever nausesaated ALL DAY today! About two hours after I took the four pills, and ever since…about seven hours now. I hope that goes away. The asacol did not nauseate me, but I’ll give these a week anyway.

    Sorry about the runny poop sample. I suppose you just have to do it the same way you would if it were firm! Fun and games, this ulcerative colitis, right? What a life we live now….

    Cheers,
    Bev:)

    • Jill (Canada)March 3, 2012 at 9:32 pm #

      Hi Bev,

      Thanks for the reply. So calming somehow to know that I’m not just crazy. Sometimes I think I sound a little nuts. They did admit me Tuesday and I’m still in hospital. Went on IV prednisone and they took me off the drip yesterday and started me on oral pred. 40 mg per day. They say 4 -6 moths of that and then try asacol again. Can’t wait to get out of here, but they aren’t promising me anything. Had another colonoscopy yesterday – WOW – the last time I had one they put me out.. this time they left me wide awake watching them take biopsies. SERIOUSLY – that was the weirdest thing ever.

      Anyway, thanks again – I will definitely try the probiotics.

      J

      • BevMarch 4, 2012 at 4:39 pm #

        Hi Jill in Canada!

        I am in Penticton, British Columbia, myself! Where are you in this lovely country?

        I have never had to be hospitalized for UC, at least not yet. I have had it for 15 years now. It started out as proctitis, meaning only 7cm colon involvement at the rectum. I was told I was lucky, and that it probably wouldn’t amount to anything further. 5 years later, I had 60 cm involvememt, so they called it ulcerative colitis, and was told that it wouldn’t go any further again…Then, this past year, I have the newly named ‘pancolitis’, as my whole colon is now involved. I think they tell that you it won’t spread in the beginning, just so you don’t freak out and throw in the towel. I don’t know whether they know they are lying to you. or if they are just not really sure…

        Anyway, you must have had some ‘flare’ to be admitted into the hospital. I wouldn’t even know if I had to go or not, I don’t think, because sometimes I actually feel like I am dying, but I just put up with it! Once, last year, my iron was so low, and I was so anemic, my doctor thought that I was just having panic attacks, after telling him my symptoms! Can you believe that? Until he did a blood test, and, oh, you are very anemic! I had to have an iron infusion in the hospital, but it was just a day thing. You must have had terrible symptoms this time around, to have to actually be admitted.

        Back to the probiotics…please try them. I know some people think it’s crazy to try them, but I’ve been on them for almost two months, and I would not stop them now, or ever. I take a 50 billion one called RENEWLIFE ULTIMATE FLORA CRITICAL CARE (apparently for those of us who REALLY need them…LOL). They cost me about $35 per month, and you take one capsule per day. I also take two acidopholous 7 million probiotic capsules each day out of my husband’s stash (once in awhile he gets constipated…aw poor him, right?), just for good measure, because they are supposed to be great for our ‘flora’ as well. Please try probiotics. I swear I never thought they would help me, but they have, with the pain, the looseness, the blood, the frequency!

        You see, I think that the few times in my life when I have taken antibiotics, I have had a stronger reaction to them than some people have. They actually hurt the flora in my colon, and digestive tract, I really believe! Took away all of the good bacteria. I wonder why some people can handle that, and some can’t.

        Anyway, blah blah blah! So sorry…

        Take care of you, and get out of that hospital!!

        Cheers,
        Bev:)

        • Jill (Canada)March 4, 2012 at 5:54 pm #

          Hey Bev from Penticton (Naramata Bench is the best wine country in the world!!) – I’m just over the mountains in Calgary! I’m so glad to read about your experiences. I ended up in here when the “flare” went wild and I was going to the bathroom more than I was off the toilet. I think my body just started to give up. Bleeding, tired, dizzy, nauseas.. I just not really handle it.
          Bev, have you tried the scd diet? Or any dietary changes other than the probiotics as an addition? I asked my doctor today about it and he said go ahead and try but there was no scientific reason that it should work, but that he heard some patient success with it.

          Anyway, let me know!!

          J

          • BevMarch 4, 2012 at 11:05 pm #

            Jill in Calgary!

            I haven’t tried the SCD but I have heard so many great thigs about it. I am one of those people who is hell-bent on eating what I want. Actually, I mostly have no problem with food. I hear alot of UC sufferers do, and I hope that does not happen to me. If it does, I will definitely try that diet. It sounds like it would work.

            So glad to hear from another gal, who, I think, attempts to have a sense of humor about this ‘crappy’ disease. I try to, as well, but it is hard…especially when you end up in the hospital…hang in there…I know, what a cliche…sorry!

            Cheers,
            Bev:)

  2. MerlinMarch 3, 2012 at 5:13 pm #

    Well Jill I can’t give advice on what you should do about talking to your dad , but if the role was reversed would you want to know? Now as a male I can only say that we never quit trying to protect or take care of our family. Sounds to me like you have a good dad too.Anyway on the lighter side I to am coming out of a (flare).Who decided to call them flares? I’m thinking more like a personal flame thrower (ha ha) any way good luck and God bless.

    • Jill (Canada)March 3, 2012 at 9:36 pm #

      Hi Merlin

      You’re right of course. I called my Dad Tuesday night when they admitted me. It was silly to think I could keep it from them. My Mum flew in yesterday so I have help with the kids at home. As I was saying to Bev, I’m still in hospital. I did the colyte treatment before my colonoscopy and seriously – flame thrower doesn’t even begin to cover it!!!!!! My 3 kids were here, I was hooked up to the iv pole, and sharing a bathroom at the hospital with 2 other patients. I kept leaping out of the bed and trying to race across the room with the pole to get to the toilet. I’m not kidding you. It was the funniest thing ever (as long as you were just watching and not participating in the process!!)

      Tx for the advice :)

  3. MaggieMarch 3, 2012 at 6:13 pm #

    My last flame-thrower, I mean flare, I actually took an otc med for diarrhea, my choice. It was Immodium, you take it right after a bout of diarrhea. It paralyzes the bowel so you quit pooping. I had also started Entocort and I believe, because I was so fricking sick, that the Entocort had time to work when I wasn’t pooping constantly or pooping pure blood. I’m watching my diet even more carefully now. I was in a flare 1 week before starting the Entocort, losing weight, wondering if I should go to the hospital when I called in and got the Entocort and that’s when I started the Immodium, too. That flare, right after Christmas, shook me to the core. I’m currently only on methotrexate and that’s also for arthritis. Your dad could offer you great support. I hope you get better soon. This thing is a bitch!!

    • Jill (Canada)March 3, 2012 at 9:40 pm #

      Hey Maggie,

      So funny you should mention the immodium. A few hours after they finished my colonoscopy they gave me an immodium and I’ve only had to “blow flame” twice since then (LOL!) I’ve also been on the prednisone for 4 and a half days and my guts are starting to turn the corner. I actually feel okay tonight!!

      How long and often do you think you could take the immodium? My dad takes it when he has to go on long drives or to a game or something.

      Hang in there!
      J

  4. OrdinaryWorldWhereRUMarch 4, 2012 at 7:26 pm #

    Sorry to hear about what you are going through. For future reference my efforts to provide a sample without being given the proper supplies lead to purchasing styrofoam bowls to catch the fluid and then use the useless scooper to get it into the vials they provided. My new doctor provides appropriate supplies for such requests along with excellent instructions. My prior didn’t. I hope things improve really quickly for you. I wonder why they didn’t put you under for the scope? I had also hoped that they wouldn’t give us that horrible prep for another scope knowing what it would do to one of us. Not too thrilled to hear about that and really, really sorry you had to do that again.

    • Jill (Canada)March 5, 2012 at 8:01 am #

      There really ought to be a better way to blow the colon clean without that prep. Now maybe there is a invention we could come up with and make some money! THere’s gotta be an upside.
      Just waiting for the doctor to do rounds to see if they will let me out today!!
      J

      • BevMarch 5, 2012 at 10:19 am #

        Good day Jill!

        Hope you get sprung today…

        Cheers:)

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