Neverending Emergency Room Visits

Introduction:

I am a 25 year old mother to two boys ages 5 and 2 and a wife to a soldier about to deploy. I was diagnosed with moderate uc in April 2011. I feel like this disease has taken over my life and I am constantly in and out of the hospital.

My Symptoms:

Loose stool with blood and mucus, constant cramping on my left side, nausea, vomiting, hot flashes and night sweats, extreme fatigue.

My Story:

I was hospitalized for horrible stomachs pain and bloody stool in April 2011 which lead to a colonoscopy and my diagnosis. I was also diagnosed with blastocystis homynus and treated for that. Since then I have been hospitalized six times for flare ups. I am constantly on and off of prednisone with horrible side effects and I am constantly in pain. I have consistent cramping and get horrible sharp pains on my left side. I see a gi specialist monthly to try and get my flares under control but I haven’t been in remission since I was diagnosed. I feel like this disease has taken over my life, I don’t have the energy to do the things I enjoy anymore, this isn’t fair to my children or husband. I have two little boys full of happiness and energy and I want my life back so I can be the mommy I used to be. I am constantly nauseous and in pain, I get horrible hot flashes and night sweats and chills, and I am always so tired.
I am currently having a bad flare up that has me running to the bathroom about ten times a day along with vomiting and hot flashes. I am also having burning lower back pain and the same thing with my knees. The prednisone is no longer helping and the azathioprine is obviously not working since I have been in the hospital four times in the past three months for flare ups. Any suggestions on new meds?
And is anyone else in constant pain? I feel like I am never going to feel healthy again, this disease is really kicking my butt! I have myself on a low residue diet and I don’t touch alcohol caffiene or nicotine. I also do stress release yoga and meditation daily but nothing seems to be making a difference on my health.

Where I’d like to be in 1 year:

Back in school for my RN license and I want my energy back!

Colitis Medications:

Currently on 60mg predisone, 200mg azathioprine, flagil, rowasa enamas, hydrocodon, zoloft, and provigil.

written by Melissa




8 Responses to Neverending Emergency Room Visits

  1. Lisa OH
    Lisa September 29, 2012 at 8:36 am #

    Hi Melissa. I was diagnosed w/UC Dec, 2011. My diseased progressed so quickly and did not respond to any meds that my colon became toxic and I had to go the surgery route (currently healing from 2nd surgery for jpouch and feeling great). You have really been suffering for such a long time!! Have you tried SCD diet or GAPS diet, combined with probiotics? I’ve heard alot of good feedback about those (Adam does SCD diet which has really helped him ALOT). Maybe ask the doctor about Remecaid or Humira? They are heavy duty drugs, but for some people, they work (they did not for me, but for others they are a miracle drug). I think everyone is different, so you have to keep trying different things. I hope you find some relief soon. UC is a yucky, yucky disease. You deserve to have your life back!!!!

    • melissa September 30, 2012 at 1:39 pm #

      lisa,
      thank you for reading my story and commenting. im so sorry to hear that you had to have surgery, twice! i hope recovery goes smoothly for you. i am looking into these diets and probiotics right now. thank you for the input :)

  2. Richele
    Richele September 29, 2012 at 6:11 pm #

    Hi Melissa,
    This was my exact situation about four yrs ago. I was diagnosed in 2006 right after my second daughter was born and ran the medicine gauntlet as well. I couldn’t hold enemas or suppositories, prednisone made me so so sick, asacol came out the same way it went in. Nothing seemed to help. I decided to change my eating habits, which might have helped a bit, for some time. Acupuncture, massage, and chiropractic work also helped…for a while. haha! I guess nothing has kept me in remission for good. I am experiencing a flare as we speak. I guess I don’t really have any super good advice to give you…I just want you to know that you are not alone in this. I hope you have people who can help you out at home and with the kids, especially since your hubby is being deployed! How scary that must be…might be triggering symptoms as well, ya know?
    My goodness, I’m so sorry. I seriously feel your pain. Try to keep your chin up.
    Very best,
    Richele

    • melissa September 30, 2012 at 1:53 pm #

      Richele,
      thank you for reading my story and taking the time to give me your input. im sure my most recent flare is due to the fact that my husband will be in Afghanistan in a month. i actually had to go into the hospital three days ago for this flare and got out yesterday, that was my shortest visit lol. all they did was up my prednisone and flagil, as well as put me on two new antibiotics because i have a kidney infection right now. fun! i go see my doctor tomorrow and i know he is going to want to put me on remicade, but i am not ready for that. i am going to try probiotics and changing my diet before we take that route. i hope you are feeling better soon.

  3. Bev September 30, 2012 at 7:47 am #

    Hi Melissa,

    That freaking prednisone, and all the rest of those stupid meds. The symptoms are worse than the UC sometimes! Most times, truth be told. That is horrible that you feel so horrible! I can remember my last flare, and being where you are…I was on asacol and it was what was making me nauseated and taking my appetite away. I thought it was the UC, because that’s what the doctors told me. They want us to stay ON prescription meds, I swear!

    I started a good probiotic when I was feeling so shitty, I thought I was going to die. Talk about no energy…I was so anemic, I felt like I could just sleep every couple of hours…especially after I ate anything! The blood loss, the constant pain and cramping, the meds…it was a nightmare. I wasn’t living in the world anymore. It felt like I was living in a dream…but a very very bad one. Ugh. Boy, does your story bring it all back.

    I have been in a self induced remission for about 8 months now, thanks to starting that simple little probiotic, and sticking with it for at least a month. I stayed on the meds, believing what the doctor told me…that I MUST! I started feeling so HUMAN again, that I decided to try and stop taking the asacol. Am I ever glad that I did! Meds are not for me…my body hates them. They make me feel awful…rotten…HORRIBLE. After stopping the asacol, my appetite came back, the nausea that I had for 13 years (which is how long I was on asacol) disappeared! It feels so good to be hungry again. Like a human being is supposed to feel, right? I could cry for you, because I was there…and I ain’t ever going back there again.

    Along with that probiotic (50 billion strains strong), I also added L-glutamine, which heals the mucosa of the colon. I feel like a million bucks, and you know what? Because I’m doing so well, my doctors are finally believing me! They are asking ME questions. They are testing me for inflammation levels (which they never did before, and mine are low low low by the way now!), and also testing my vitamin D levels. Never did that before either. I am thinking taht there must be some merit to these probiotics. My doctors are not giving me a hard time for discontinuing my meds…they are quite the opposite! First time that’s happened too! They have always been like a stern parent to me, in that they insisted on my doing things THEIR way, and scolding me if I didn’t. Hah! Look at me now…DR.DAD…LOL!

    I think the future is here, and there are going to be more doctors accepting the ‘natural’ way for the body to heal itself, rather than pushing one textbook drug after another on us! Just wait and see. I want YOU and everyone else to feel better! Drugs aren’t achieving that. Not that I can see, anyway, after reading STORY after STORY on here.

    I hope you feel more human soon. Don’t stop your meds until you get probiotics into your system for at least a month and see if they work for YOU. Please try. They can’t hurt you and they just may be the answer for you. I could not believe they were my answer!

    Cheers:)

    • melissa September 30, 2012 at 2:05 pm #

      Bev,
      thank you for reading my story, you made me cry! i can not believe that you were on asacol for 13 years and miserable for that long, i am so sorry! i am definitely going to try probiotics and L-glutamine, thank you. my dr. is the same way, i feel like he wants to just keep giving me more and more meds when all that happens with them is i get sicker or have horrible side effects. prednisone is my worst enemy lol. that damn steroid has made me gain weight, eat like im pregnant again, give me chipmunk cheeks, and the worst acne i have ever had in my life! my hair also started falling out after a few months of being on all these meds.
      the cramping is the one thing i feel like i am never going to escape, it brings me to my knees and i break out it horrible sweats. lately it sure does feel like i am stuck in a re-occuring nightmare. hopefully a natural route is what i need, medicine never liked me and i never liked it; so my ultimate dream would be to get away from all these pills that i feel are poisoning me more than helping me. thank you again!

      • Bev September 30, 2012 at 2:29 pm #

        Oh, and your story also brought tears to my eyes, because I lived the same thing. Those cramps…that was the worst thing, because they were there, it seemed like, 24/7!

        The drugs did seem like they were a poison, to me, at least. I tried prednisone for 4 days (I was supposed to be on it for months and taper), and that was all I could handle! I think I’m one of those ‘rare’ people who are actually allergic to it. Either that, or extremely sensitive to it. It was bad.

        I truly hope the probiotic will work for you like it did for me. You have to keep taking it for at least a few weekd. I think people possibly bail out too soon and don’t give it enough time to work. I always think, our colons didn’t get destroyed overnight, so they won’t heal overnight either. And that L- glutamine, took the bleeding away, because it actually heals your colon!

        Thanks, Melissa, for sharing your, unfortunately, all too familiar story.
        Cheers my friend:)

  4. PeterNZ October 9, 2012 at 6:57 pm #

    Hi Melissa,

    I have had this pretty bad for a long while now and from my experience I would discuss the following with your docs:

    * Regular blood test for administration of Azathioprine (it can overly inhibit your immune system)
    * Need to control flare. I would look at a short course of cyclosporin perhaps.
    * Ongoing remission. How about a little methotrexate once a week?

    If your doctor cannot explain the pros and cons to you regarding this proposal and implement a change to try a solution I would look elsewhere.

    You really need to get control this of this and then stay well. Unfortunately pred is just super at killing a flare but you don’t want to rely on it long term. If you just keep turning up at intensive care they might cut your guts out there and then as an emergency procedure.

    Good luck and let us know how you get on.

    Peter

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