Anyone else with IBD/Crohn's/Non-Specific Colitis?

determined2lose89
determined2lose89 Posts: 342 Member
edited November 19 in Introduce Yourself
Hi Everyone,

I am a long-time MFP member. I joined years ago and successfully lost 30lbs then gained 15lbs back....then lost another 20lbs due to being ill.

In October of last year I start having terrible abdominal symptoms and was sent to a GI specialist who diagnosed me with non-specific colitis but suspects that it is Crohn's. I was put on a bunch of medication- which, to this date still hasn't cleared up all my symptoms.

In May of this year I got very ill, couldn't eat and was hospitalized for days. They released me once I could eat again (bland diet) but I have fallen ill again and have difficulty eating a full range diet and have been losing weight. I am undergoing more tests, seeing a new GI specialist and overall just want to get to the bottom of this so I can be healthy again.

I'm looking to see if anyone else here has IBD/Crohn's/UC/Non-Specific colitis and wants to be friends for support? :)

I am using MFP this time around to track what I am eating, what I react poorly too and track my nutrients.

Replies

  • singingflutelady
    singingflutelady Posts: 8,736 Member
    I have crohn's and have many food restrictions. If you are in a flare you should not be eating a full range diet. Find out what is bothering your gi system and avoid that like a plague.
  • mmasters63
    mmasters63 Posts: 4 Member
    I also have Crohn's and trying to find out what foods give you problems is really difficult. And even harder to try and lose weight. My doctor has sent me to see a dietitian to help work on symptoms. My biggest problem or blessing as it be is that the main issue I have is bloating!! OMG I feel like I will explode!
  • chasingdusk
    chasingdusk Posts: 3 Member
    My Dad has had Chron's colitis since I was 6, and both my sister and I are in various stages of dealing with LGS which tends to be a precursor to Chron's. Getting blood work done for food allergies by a naturopath has helped both of us start to make sense of what is going on. It is an every day journey though, and my sister specifically just recently was diagnosed and is on leave because of it. Take good care, mind what you eat and what is affecting your stress levels as well, as that seems to have a huge affect.
  • RiveraMarylou
    RiveraMarylou Posts: 181 Member
    My brother has had Crohn's since age 19 and he will be 50 next week. He, unfortunately has had many resections, and has a colostomy bag. Because of the shortening of his large intestines, he has been on a low fiber/low residue diet, which is sad because this boy loves to eat, but only weighs 112 lbs. I would think that you would have been told to follow this type of diet? That is usually the diet that goes with colitis/crohns (or some/most GI issues). My brother is in many groups for Crohn's and he feels it helps him, but mainly, since he's an old pro, he helps out others. Because of continuously having flare ups, he gets an infusion a couple times a year which helped, however, after so many infusions, your body gets used to it, and eventually need a different, stronger infusion. I would advice you continue asking questions and keep seeking answers. Check out other sites that are mainly for colitis/crohns, you'll be surprised how many there are. I hope you get answers soon so that a plan of care can be made. Best of luck to you.
    Oh, nuts, corn, broccoli, lettuce are some of the food items my brother should not have.
  • julie03878
    julie03878 Posts: 5 Member
    I've had crohns for most of my life. Still surgery free :) I do have problems eating fruits and vegetables. I always have major bloating.
    Hopefully between counting calories and hitting the gym I can. Lose a little weight
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    julie03878 wrote: »
    I've had crohns for most of my life. Still surgery free :) I do have problems eating fruits and vegetables. I always have major bloating.
    Hopefully between counting calories and hitting the gym I can. Lose a little weight

    Lucky! I had a total proctocolectomy with end ileostomy 10 weeks ago 2 years 4 months after diagnosis (though was undiagnosed for very long time). In the end ( ;) ) it was the disease complications (horrible fistulas) that caused me to have the surgery even though I was doing well otherwise.
  • meetingacrosstheriver
    meetingacrosstheriver Posts: 57 Member
    Hi!

    I don't have IBD/Crohn's/UC/Non-Specific colitis however I was diagnosed last year with IBS after a second negative biopsy for Coeliac Disease. After working with a dietician, she was unable to figure out what was triggering it. During this time my weight was increasing and my symptoms were getting worse (including more GI symptoms which I never had at the time of testing). I'm currently awaiting to see my GI specialist again and hoping that he will do another gastroscope with biopsy to try and finally diagnose the Coeliac (I also carry one of the genes which puts me at risk of developing CD).

    I'm more than happy to support you on your journey, please feel free to add me :smiley:
  • Fuzzipeg
    Fuzzipeg Posts: 2,301 Member
    I've found reintroducing digestive microbes help as well as using digestive enzymes. Having a disrupted digestion is so difficult it causes things to become increasingly out of balance. Following an autoimmune protocol may also help. We are all different, I hope my ideas may be helpful.
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