Anyone here an IBD warrior? Spoonie roll call!

nojuicejustjin_
nojuicejustjin_ Posts: 238 Member
edited December 2 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.

Replies

  • nojuicejustjin_
    nojuicejustjin_ Posts: 238 Member
    :smile:
  • CoachJen71
    CoachJen71 Posts: 1,200 Member
    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
    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
    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
    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
    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
    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
    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
    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
    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
    @indy_cruizer totally ot but house always threw out sarcoidosis as a differential diagnosis
  • Sarc_Warrior
    Sarc_Warrior Posts: 430 Member
    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
    Isn't IBS a differential diagnosis?
  • mountiesgirl
    mountiesgirl Posts: 41 Member
    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
    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
    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
    @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
    @singingflutelady sorry, misread the title!
  • Sarc_Warrior
    Sarc_Warrior Posts: 430 Member
    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
    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! :)
  • CoachJen71
    CoachJen71 Posts: 1,200 Member
    Anyone else have a weird feeling that their hormones tie-in somehow to their IBD? I went from being a constipated little girl, to a hormone-flushed pre-teen with UC, to a woman who got slightly better each time after giving birth, and back to constipation and apparent remission in perimenopause. Additionally, my bipolar has changed along that same time line. I had a head doc once tell me that there seems to be a slight correlation to presenting with both IBD and Bipolar or Depression.

    I know that theories abound these days about the role of healthy gut flora in overall and mental health. Maybe there really is something to that, and somehow hormones affect the flora somehow??
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    I'm bipolar too! Apparently lots of women go into remission while pregnant and flare after giving birth. I also find I'm much worse around that time of the month.
  • CoachJen71
    CoachJen71 Posts: 1,200 Member
    singingflutelady wrote: »
    I'm bipolar too! Apparently lots of women go into remission while pregnant and flare after giving birth. I also find I'm much worse around that time of the month.

    Oh Lord, yes! My manias unfortunately put me in the stereotypical PMS mode. My apologies to my sisters the world over for reinforcing that!

    I did get worse short-term colitis flares after the babies, mostly due to lack of sleep, which also did wonders for the bipolar! But I also definitely improved a little more overall long-term after I had the kiddos. My doc said it seems to be luck, as a third of women w/ UC get better, a third stay the same, and a third get worse.
  • chunky_pinup
    chunky_pinup Posts: 758 Member
    nojuicejustjin_ wrote: »
    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?

    I actually was one of the "lucky" ones who went into remission during/after pregnancy. The pregnancy was unexpected, as I was going through chemo with methotrexate (which is also used for medical abortions, so miracle baby survived with NO ISSUES with her first 8 weeks in utero being exposed!) and I had an IUD...coming off of all of my meds without tapering was awful. They put me in the hospital for a weekend because they needed to monitor the fetus to make sure it would survive, and it was like a junkie coming off heroin for me. Absolutely awful. The first month or so after that was very hard, but then I went into remission! Baby was born 21 months ago, and I was in remission until she was 18 months old, so I guess you could say I had a very good streak!

    I've had a few pretty bad flares since then, but I think because I took advantage of that time and really tried to get my body to the best place I could physically, I've been able to recover from them quicker without as much struggle. But...the struggle is definitely still there...
  • nojuicejustjin_
    nojuicejustjin_ Posts: 238 Member
    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.

    Hello! Sorry about your dx. Are you on treatment now?
    skertz wrote: »
    Isn't IBS a differential diagnosis?
    Yes, IBS is an irritated bowel whereas IBD is a chronic inflammatory disease of the bowel
    mountiesgirl wrote: »
    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.

    Hi there! Are you on any treatments?
  • nojuicejustjin_
    nojuicejustjin_ Posts: 238 Member
    chunky_pinup wrote: »
    nojuicejustjin_ wrote: »
    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?

    I actually was one of the "lucky" ones who went into remission during/after pregnancy. The pregnancy was unexpected, as I was going through chemo with methotrexate (which is also used for medical abortions, so miracle baby survived with NO ISSUES with her first 8 weeks in utero being exposed!) and I had an IUD...coming off of all of my meds without tapering was awful. They put me in the hospital for a weekend because they needed to monitor the fetus to make sure it would survive, and it was like a junkie coming off heroin for me. Absolutely awful. The first month or so after that was very hard, but then I went into remission! Baby was born 21 months ago, and I was in remission until she was 18 months old, so I guess you could say I had a very good streak!

    I've had a few pretty bad flares since then, but I think because I took advantage of that time and really tried to get my body to the best place I could physically, I've been able to recover from them quicker without as much struggle. But...the struggle is definitely still there...

    WOW! Yay for miracle baby! That's great that she is healthy. It was a good streak for you lol
    I'm glad you bounce back fast from them now. Mine are a hit or miss for me with length of flares.
  • nojuicejustjin_
    nojuicejustjin_ Posts: 238 Member
    CoachJen71 wrote: »
    singingflutelady wrote: »
    I'm bipolar too! Apparently lots of women go into remission while pregnant and flare after giving birth. I also find I'm much worse around that time of the month.

    Oh Lord, yes! My manias unfortunately put me in the stereotypical PMS mode. My apologies to my sisters the world over for reinforcing that!

    I did get worse short-term colitis flares after the babies, mostly due to lack of sleep, which also did wonders for the bipolar! But I also definitely improved a little more overall long-term after I had the kiddos. My doc said it seems to be luck, as a third of women w/ UC get better, a third stay the same, and a third get worse.

    Hey there! I notice a mood difference for sure more so when I'm about to or in a flare than not. I've read the connection of gut flora with mental health and they may very well be onto something!
This discussion has been closed.

Categories