Anyone here an IBD warrior? Spoonie roll call!

Options
nojuicejustjin_
nojuicejustjin_ Posts: 238 Member
in Motivation and Support
Hey there! I'm a Crohn's Disease fighter of 10 years. I've been on 6MP & Remicade (plus any lesser invasive meds) with no success or in Remi's case, I had an allergy and no improvement plus liver and kidney issues. I've been on prednisone more times than I care for. I had 2ft of my intestines removed in 2014 and relapsed 2 months after with the disease consuming the entire colon and small bowel. I'm seeking new treatment and expect to be on another chemo after my colonoscopy in August. My doctor has already told me to start my vaccination process.

Apart from that, I love to lift heavy and workout. Crohn's Disease prevents this sometimes but I try my best to fight it unless my fatigue is beyond a battle.

Anyone here a fellow spoonie? Do you lift? Are you on treatment? Lol I have so many questions if you said yes! I'm looking for buddies on here that know the extent of struggle I face on my journey that most don't have to.
«1

Replies

  • nojuicejustjin_
    nojuicejustjin_ Posts: 238 Member
    Options
    :smile:
  • CoachJen71
    CoachJen71 Posts: 1,200 Member
    Options
    I had my first Ulcerative Colitis flare at age 10 and was hospitalized the next year for 6 weeks. They were going to remove my entire colon, tried Prednisone as a last ditch effort and saved it. I have been of the lucky ones. My UC seemed to get better a bit after each kid. Now it is more like IBS than UC. *knock on wood*

    I hope and pray some kind of remission finds you too! *hugs*
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    Options
    I'm a Crohnie. I'm on Remicade and imuran. I was so sick when diagnosed that almost died. I love lifting heavy too but I'm currently starting a flare so I had to quit the gym again.
  • chunky_pinup
    chunky_pinup Posts: 758 Member
    Options
    Not an IBD warrior, but a spoonie! I have Lupus (SLE), Behcets Disease and Fibromyalgia, to name a few. I've done three rounds of chemo, benlysta infusions, and been on more drugs than I can count, but I also love lifting and staying as active as possible as often as my body allows!
  • nojuicejustjin_
    nojuicejustjin_ Posts: 238 Member
    Options
    CoachJen71 wrote: »
    I had my first Ulcerative Colitis flare at age 10 and was hospitalized the next year for 6 weeks. They were going to remove my entire colon, tried Prednisone as a last ditch effort and saved it. I have been of the lucky ones. My UC seemed to get better a bit after each kid. Now it is more like IBS than UC. *knock on wood*

    I hope and pray some kind of remission finds you too! *hugs*

    Thank you! I'm so happy to hear you're finding yourself with less extreme symptoms! I hope you keep getting better continuously.

    Hopefully I reach a proper treatment!
  • nojuicejustjin_
    nojuicejustjin_ Posts: 238 Member
    Options
    singingflutelady wrote: »
    I'm a Crohnie. I'm on Remicade and imuran. I was so sick when diagnosed that almost died. I love lifting heavy too but I'm currently starting a flare so I had to quit the gym again.

    Ugh, sorry to hear you're also flaring :disappointed: Hope you recover ASAP and get back to your routine! Do you find the treatments help you most of the time?
  • nojuicejustjin_
    nojuicejustjin_ Posts: 238 Member
    Options
    chunky_pinup wrote: »
    Not an IBD warrior, but a spoonie! I have Lupus (SLE), Behcets Disease and Fibromyalgia, to name a few. I've done three rounds of chemo, benlysta infusions, and been on more drugs than I can count, but I also love lifting and staying as active as possible as often as my body allows!

    Hi there spoonie! I'm sorry you've had a rough go as well. I was recently dx'd with fibro also but not on a treatment there either. I was being tested for Lupus because I had some symptoms that match it pretty accurately but my test came back negative. Not sure if that can happen even if someone has it.

    Are you in remission at all? Or still finding a groove medicinally? Also do any supplements help energy wise for you?
  • mbaker566
    mbaker566 Posts: 11,233 Member
    Options
    i am also a behcets and fibro girl.
    I found moving and eating nutritiously helped.
    but I'm also on medications to try and keep flares away and at a minimum when they do happen. Mostly, i just get tired and sore moreso than another person
  • nojuicejustjin_
    nojuicejustjin_ Posts: 238 Member
    Options
    mbaker566 wrote: »
    i am also a behcets and fibro girl.
    I found moving and eating nutritiously helped.
    but I'm also on medications to try and keep flares away and at a minimum when they do happen. Mostly, i just get tired and sore moreso than another person

    Are you on a treatment for both or just one ?
  • Sarc_Warrior
    Sarc_Warrior Posts: 430 Member
    Options
    I'm a recently diagnosed spoonie. I was diagnosed with sarcoidosis in my lungs in January. Feel free to add me
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    Options
    @indy_cruizer totally ot but house always threw out sarcoidosis as a differential diagnosis
  • Sarc_Warrior
    Sarc_Warrior Posts: 430 Member
    Options
    Top respirologist flew out from Quebec to Calgary to meet with me and a handful of others in Alberta with it. He's one of the leading researchers for it so I trust his diagnosis and the test results.
  • skertz
    skertz Posts: 16 Member
    Options
    Isn't IBS a differential diagnosis?
  • mountiesgirl
    mountiesgirl Posts: 41 Member
    Options
    I don't have IBD but I'm a spoonie I was diagnosed with endometriosis a month ago and suffer from flare ups and I'm a migraine sufferer as well.
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    Options
    indy_cruizer wrote: »
    Top respirologist flew out from Quebec to Calgary to meet with me and a handful of others in Alberta with it. He's one of the leading researchers for it so I trust his diagnosis and the test results.

    @indy_cruizer oops you misunderstood. I didn't mean to question your diagnosis. Just meant that house mentioned it a million times on the show
  • samchez0
    samchez0 Posts: 364 Member
    Options
    I'm starting to think I might have some form of IBS but it hasn't been diagnosed. Seeing the doctor in a week to go over everything. I'm glad I log here on MFP because I can show him exactly which days have been giving me issues and what I ate on those days.
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    Options
    @samchez0 IBS sucks but it isn't the same as IBD (inflammatory bowel disease). IBDs are Crohn's and ulcerative colitis.
  • samchez0
    samchez0 Posts: 364 Member
    Options
    @singingflutelady sorry, misread the title!
  • Sarc_Warrior
    Sarc_Warrior Posts: 430 Member
    Options
    singingflutelady wrote: »
    indy_cruizer wrote: »
    Top respirologist flew out from Quebec to Calgary to meet with me and a handful of others in Alberta with it. He's one of the leading researchers for it so I trust his diagnosis and the test results.

    @indy_cruizer oops you misunderstood. I didn't mean to question your diagnosis. Just meant that house mentioned it a million times on the show

    No worries. I may have to start binge watching house...lol
  • CoachJen71
    CoachJen71 Posts: 1,200 Member
    Options
    indy_cruizer wrote: »
    singingflutelady wrote: »
    indy_cruizer wrote: »
    Top respirologist flew out from Quebec to Calgary to meet with me and a handful of others in Alberta with it. He's one of the leading researchers for it so I trust his diagnosis and the test results.

    @indy_cruizer oops you misunderstood. I didn't mean to question your diagnosis. Just meant that house mentioned it a million times on the show

    No worries. I may have to start binge watching house...lol

    A most binge-worthy show! :)

Categories