am I the only one with IBD?

elgface
elgface Posts: 35
edited September 30 in Motivation and Support
Hi! I am not overweight, but still like to have controll over my food intake and exercise .... the thing is, I have IBD and lookong for others with preferably ulcerative colitis... just need some one to talk to and share experience with in areas concerning food and excercise... I feel like the IBD makes it easier for me to put on weight as the medicines aswell.... I dont know if this is the case, but I just feel like my body cant process as much food as anyone else, I gain soooo quickly.... I have allways been quite normal in size, but still I feel like I have to constantly watch my food intake, I cant eat as much as others or I will gain....

And I just feel like I need some one in my position to talk to... anyone out there?

( My stomach hurts really bad now btw)

Replies

  • kunibob
    kunibob Posts: 608 Member
    I do, though my UC is very mild, thankfully (limited to the descending colon only), and it is pretty much in remission right now, but when I did my big weight loss a few years ago, I was in constant flare-ups, so I feel your pain! It certainly didn't help that typical "healthy foods" like vegetables, nuts, etc. seemed to scrape my poor little colon and make the pain hundreds of times worse. :frown: I also have Interstitial Cystitis (a moderate-to-severe case), which is pretty much the same kind of thing in the bladder, and it has been something I have struggled with for 9+ years now. I DEFINITELY find that my body hangs on to extra weight when these ailments are flaring up. I think it may have something to do with cortisol, a hormone that is released when the body is under stress. It makes the body hold on to weight, especially in the stomach area. Also, the medications for these illnesses can cause weight gain as well. It makes it so hard!!

    So, I appreciate what you are going through!

    Sorry you are in a lot of pain right now. :frown: Hope you feel better very soon. Sending wishes to you for a nice, long period of remission. :smile:
  • elgface
    elgface Posts: 35
    Sorry you have it too, but good to hear I`m not alone... I am quite resentlly diagnosed, so it has not calmed down yet, I had it for I believe quite a few years before the diagnose, but my doctor did not believe me or take any tests... went bleeding to the emregency room, wayted 4 hours, a doctor stuck his finger up you know where and told me it was nothing, just to eat FIBER and drink water... so I did... jeees it was a hellish summer that one... I switched doctor and she imidiatly sent me to the hospital for testing, a couple of days later, voila medication started working :D so happy that something works... but I hate how unpredictable my stomach is... every couple of months I have to rule out yet another food.... what will be left for me to eat?!

    are you on any diet? is it workig for you?
    what cinds of foods are you reacting to? or is there anything else you react to?

    I am soooo sensible to stress!
  • kunibob
    kunibob Posts: 608 Member
    Glad you got the diagnosis you needed, though I'm sorry to hear you had to deal with an idiot doctor first! As for foods left for you to eat, you may find that you can vary that up based on how your symptoms are doing. When my symptoms were at their worst, I was eating pretty much white rice and a bit of plain chicken and not much else. It was horrible! :frown: Now I find I am okay with most things, so long as my stomach is nice and quiet. On days when it is really bad, I avoid leafy vegetables and nuts/seeds. There are a bunch of foods I avoid for my Interstitial Cystitis anyway, so I'm not sure if they would affect my UC at all (I had IC for many years first and so was on that diet already): tomatoes, coffee, soy, artificial sweeteners, MSG, acidic foods. My UC seems to do best with high-fibre and reasonably high protein, but everyone is different.

    Overall, though, stress is definitely my biggest trigger! :frown:

    Hang in there. I know it's tough right now, but a lot of people respond really well to treatment and find their lives become manageable...it just takes some time & getting to know how your body reacts.

    Thanks for adding me! Hope we can inspire each other. :smile:
  • elgface
    elgface Posts: 35
    thanx ! must be hard to have to things like that at the same time ! I am also i treatment for my lungs, they have gottn worse, and the hospital told me it could be from UC, but they dont know yet, I had no idea UC could cause lung truble...

    Anyways, thanx for accepting my request, its nice to have someone who understands you know? we can try help eachother to find stress relievers, I find myselfe stressing about stressing to much cos I am afraid I will get pain...

    But thank you :)
  • ajvallance
    ajvallance Posts: 22 Member
    I don't have UC but do have Crohn's disease. Luckily for me it is well managed. I am on Humira injections every two weeks and am a new woman. I do remember what it was like though when I was on the prednisone and countless other things trying to get things sorted out. It's also hard to focus on eating right when you are in pain. Sometimes it is enough to find something, anything, to eat that is easy on your system. Good luck! Stick with it!
  • elgface
    elgface Posts: 35
    thanx ! so good that you have found something that works ! I am still on the prednisone and mezavant... but I dont have to use prednisone in my good periodes :)
  • leilaphoenix
    leilaphoenix Posts: 839 Member
    I'm a Crohnsy. Thought I was in remission and doing well but I've got to go in for another colonscopy because my bloods came back weird. URghhhh

    I used to take Humira but eventually came off it because I was doing so well. Looks like I might be going back on soon.

    Feel free to add me IBD people. x
  • elgface
    elgface Posts: 35
    oh that sucks! good luck on the colonoscopy !
  • kittyr77
    kittyr77 Posts: 419 Member
    Hi :)
    I have UC too. Was diagnosed 3years ago but it took year from seeing my Gp to actually being referred to hospital and investigated and diagnosed.
    I am in a flare just now and gained loads due to two months of high dose steroids.
    Hope you are well just now and feel free to add me as a friend?
    Kitty x x
  • ranmca
    ranmca Posts: 121 Member
    Hey everyone

    i have Ibd , the doctors arent sure what one exactly yet, ive been in flare up for over a year now.i gained tons of weight when i was on predisone(steriod) and shortly after that i decided to start mfp. certain foods annoy the heck out of me but im ok with a lot. Because MfP tracks all my food, if i have a really bad day i can go back and see what I ate. Its great. one thing i fear for with loosing weight, is that if i get sick, and i mean really sick, my body will have nothing to live off of. does anyone else feel like this? i hope you all are doing well, please add me as a friend if you would like
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