Anyone here an IBD warrior? Spoonie roll call!
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nojuicejustjin_
Posts: 238 Member
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.
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.
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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*1 -
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.0
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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!0
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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!0 -
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 Hope you recover ASAP and get back to your routine! Do you find the treatments help you most of the time?0 -
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?0 -
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 person0 -
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 ?
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I'm a recently diagnosed spoonie. I was diagnosed with sarcoidosis in my lungs in January. Feel free to add me0
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@indy_cruizer totally ot but house always threw out sarcoidosis as a differential diagnosis1
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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.0
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Isn't IBS a differential diagnosis?0
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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.0
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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 show0 -
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.0
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@samchez0 IBS sucks but it isn't the same as IBD (inflammatory bowel disease). IBDs are Crohn's and ulcerative colitis.1
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@singingflutelady sorry, misread the title!0
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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...lol0 -
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!0
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