IBD/Ulcerative Colitis Support

marypatmccue
marypatmccue Posts: 521 Member
edited November 24 in Motivation and Support
Hey all, I was diagnosed with severe ulcerative pancolitis in 2016 after my daughter was born... I started showing symptoms in the last half of my pregnancy, getting very very sick in a flare.... and I’m still flaring.

I take oral meds, and IV infusions in an attempt to get to remission, most recently I received an iron infusion to treat pretty bad anemia. I’m also trying to get my vitamin D levels up because that’s lacking as well.

Looking for others who are suffering with IBD for support and motivation. I don’t necessarily need to lose weight, but I’m working to change some habits back to how I used to be before I knew I was sick and can use some nice people to cheer me on and I’d love to do that for you as well!

Replies

  • marypatmccue
    marypatmccue Posts: 521 Member
    Anyone...?
  • jessticlesx
    jessticlesx Posts: 1,321 Member
    Hey there. I have Crohns and often use it as an excuse not to watch my eating habits and stick with my "safe foods". I also have low vitamin B12 and iron, which I don't always take into account in my diet! Also need some support and motivation to keep my habits healthy! :)
  • ebmakk37
    ebmakk37 Posts: 13 Member
    I have UC also and went into remission when I was pregnant but it is back full force since my son turned 6 months...he's 2 now. Add me as a friend so you can view my diary. Been eating clean for 2 weeks now and starting to feel better.
  • BlondieLC
    BlondieLC Posts: 2 Member
    edited January 2018
    Hi, I also have UC, as well as Proctitis, which was diagnosed when I was 19. I have been on more medication than a lab rat over the last 12 years which has had severe ups and downs. Following a particularly bad flare up I have suffered over the last year, I have gained a lot of weight due to steroids and very little to no activity at all. However on the 1st January I started my own version of clean eating (all veg and protein and avoiding anything remotely difficult to digest) and the results have been phenomenal. This week have managed to stop taking Pred (steriod) and I have realised just how much pain I was putting myself in making excuses for poor diet because of my illness. I have also been taking supplements and pre & probiotics, which have also helped settle things. Now I'm not saying that IBD can be simply 'solved' by diet, but it has certainly helped me. Next IBD clinic appt is in Feb, so I'll get to see if I really have managed to make a change to the flare up and not just combating the symptoms.
  • Aqualang26
    Aqualang26 Posts: 149 Member
    Heya! It's a tough road, especially with a little one to care for.

    I have IBD and moderate UC, and a few other GI diagnoses. I've been on keto for almost 6 months and it seems to be helping quite a bit (though it took a while to see that result.)

    Whatever diet plan you're following, I'd be happy to offer support.
  • Momm2five
    Momm2five Posts: 3 Member
    I have had IBS my entire life, typically more on the IBD side of it. I went Gluten Free and cut out bread, pasta, potatoes and rice 2 months ago today. I have completely cured my gut symptoms with this change in eating.
  • ibsfoodjourney
    ibsfoodjourney Posts: 1 Member
    I was just diagnosed with IBSD. FODMAPS has made all the difference but being in college with a meal plan and a really tight budget is making it a bit of a challenge to eat well.
  • marypatmccue
    marypatmccue Posts: 521 Member
    Got some pretty sucky news last night from my GI— the infusion meds (Entyvio) I have been on are not working, nor in my system at all. I developed antibodies and can no longer take it. Damnit! I waited a year for insurance to approve it for me.

    In other news, I’m unable to eat most vegetables and fruits as it exacerbated my symptoms. I bleed a lot and that just makes me feel like I’m gonna die. But I’m t ting to work some back in slowly. It’s been a rough go for me.
  • MzCara148
    MzCara148 Posts: 205 Member
    Hi there, fellow IBDers! I was diagnosed with proctitis in 2002 and my diagnosis changed to pancolitis in April of this year, although I suspect it was pancolitis for at least a year before that, probably longer.

    Sorry to hear that Entyvio isn't working for you. Have you been through remicade or humira yet? I take humira but I also take imuran (azathioprine) with it. The two together have been the first thing that has really worked for me.

    My reason for being here is prednisone. For each of the last three years, I was on it for at least 6 months out of the year at 40mg or more and I put on sooooo much weight when I am it. It is really hard to make positive lifestyle changes with the fatigue from all the meds, the joint pain, and most fruits and veggies make you want to die.
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    Momm2five wrote: »
    I have had IBS my entire life, typically more on the IBD side of it. I went Gluten Free and cut out bread, pasta, potatoes and rice 2 months ago today. I have completely cured my gut symptoms with this change in eating.

    There is no IBD side of IBS. Totally different beasts
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    edited February 2018
    I have Crohn's and gastroparesis. It was Crohn's colitis with perianal disease but i had a open total proctocolectomy with end ileostomy (bye bye colon and rectum) in may because of fistulas. Part of my incision opened so i couldn't go back on a biologic for a long time. Unfortunately Crohn's has attacked my stomach and now i have gastroduodenal Crohn's. I'm currently on Entocort 9mg (I'm steroid dependent),
    pantoloc 40mg (ppi),

    dom peridone 10mg x3 (this is for gastroparesis. It speeds up gastric emptying. Just restarted this. Erythromycin my miracle drug only works for a few weeks to speed up stomach and it recently failed),

    mirtazipine 15mg (anti depressent that also speeds up gastric emptying),

    pregabalin 50mg x3 for pain prescribed by pain clinic starting cbd oil soon

    Zoplicone 7.5 mg for sleep
    Humira 40mg every 2 weeks
    Gravol 50mg x6
    Benedryl also for nausea
    Gaviscon for indigestion
    Simethicone 180mg x4
    Xs tylenol x4

    For ostomy supplies i use coloplast sensura 2 piece mio clear bag with light convex wafer, brava moldable rings, brava elastic barrier extenders, brava barrier wipes and brava adhesive removers.
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    Just a clarification as some people seem uncertain. IBD is inflammatory bowel disease not IBS D which is irritable bowel syndrome diarrhea
  • marypatmccue
    marypatmccue Posts: 521 Member
    MzCara148 wrote: »
    Hi there, fellow IBDers! I was diagnosed with proctitis in 2002 and my diagnosis changed to pancolitis in April of this year, although I suspect it was pancolitis for at least a year before that, probably longer.

    Sorry to hear that Entyvio isn't working for you. Have you been through remicade or humira yet? I take humira but I also take imuran (azathioprine) with it. The two together have been the first thing that has really worked for me.

    My reason for being here is prednisone. For each of the last three years, I was on it for at least 6 months out of the year at 40mg or more and I put on sooooo much weight when I am it. It is really hard to make positive lifestyle changes with the fatigue from all the meds, the joint pain, and most fruits and veggies make you want to die.
    MzCara148 wrote: »
    Hi there, fellow IBDers! I was diagnosed with proctitis in 2002 and my diagnosis changed to pancolitis in April of this year, although I suspect it was pancolitis for at least a year before that, probably longer.

    Sorry to hear that Entyvio isn't working for you. Have you been through remicade or humira yet? I take humira but I also take imuran (azathioprine) with it. The two together have been the first thing that has really worked for me.

    My reason for being here is prednisone. For each of the last three years, I was on it for at least 6 months out of the year at 40mg or more and I put on sooooo much weight when I am it. It is really hard to make positive lifestyle changes with the fatigue from all the meds, the joint pain, and most fruits and veggies make you want to die.
    MzCara148 wrote: »
    Hi there, fellow IBDers! I was diagnosed with proctitis in 2002 and my diagnosis changed to pancolitis in April of this year, although I suspect it was pancolitis for at least a year before that, probably longer.

    Sorry to hear that Entyvio isn't working for you. Have you been through remicade or humira yet? I take humira but I also take imuran (azathioprine) with it. The two together have been the first thing that has really worked for me.

    My reason for being here is prednisone. For each of the last three years, I was on it for at least 6 months out of the year at 40mg or more and I put on sooooo much weight when I am it. It is really hard to make positive lifestyle changes with the fatigue from all the meds, the joint pain, and most fruits and veggies make you want to die.

    Hey there —- I’ve been on Remicade, and Humira, both while taking Imuran and Lialda. Remicade worked kinda for about 4 weeks each time but insurance wouldn’t approve that close of dosage for me. Humira didn’t work at all... it hurt like a son of a *kitten*, and my joints hurt so bad! I also developed psoriasis from it, which has gone away since coming off of it. I’ve done lots of prednisone as well, but have just told my doc I will not take it anymore... Now Entyvio has failed and I’m waiting for a call back to see what my course of treatment will be next.

    I’ve just almost finished working out for a month straight, I’ve been drinking only water. I take probiotics and digestive enzymes.... I’m debating trying Paleo, or a modified version that makes sense for my lifestyle with a toddler.

    I’m debating also trying exogenous keytones to induce Ketosis.... don’t really know anymore!
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