Anyone else out there suffering with Crohn's or Ulcerative Colitis

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I'm sure there are other groups or discussions on this already, so if you know of some, go ahead and point me in the right direction. I'm Amanda, I'm 28 and was diagnosed with Crohn's about 2 months ago. I've had stomach issues for a looong time though and just didn't ever really think my problems were "abnormal". I finally started seeing my family doc in January, he couldn't figure out what was going on. Saw a gastroenterologist and he did a CT scan and colonoscopy to see the inflammation that I've got going on. I've been in a flare-up for months. Some days are good, some days are bad. I hate that there isn't a specific diet plan for people that suffer from these diseases, so was curious about what certain foods people had found that caused flare-ups or made things worse maybe? I've figured out popcorn, for sure. Some beans seem okay, but black beans and white beans for sure do a number on me. Broccoli but more so gas cramps and pain. Alcohol definitely, but I've not yet kicked that habit. Those are the big ones right now. If anyone else wants to join in, any information is appreciated :)
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Replies

  • kdz526
    kdz526 Posts: 210 Member
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    nuts...berries with seeds (chocolate covered strawberries *cry*), whole grain bread with the seeds in them, popcorn, corn, super spicy, some tomato based products but not ketchup. This is what I have noticed. I also avoid greasy foods or have in small amounts, ie grilled chicken over fried or a hamburger. It is different for every person.
  • missmacgetsfit
    missmacgetsfit Posts: 7 Member
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    Oh yes, tomato sauces I cannot do at all!! So no pizza :( Unless it's sauce-free, but even then, I've got a touch of lactose intolerance so it's hit or miss. I haven't had nuts since the diagnosis, but I used to eat salads with walnuts or pecans and lots of fruit with seeds. I miss those!!!
  • nancr2000
    nancr2000 Posts: 20 Member
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    I have UC, but I can't say I'm suffering much from it now. Four years ago I was diagnosed after several months of symptoms. When I was in a flare, I could never pinpoint what food was bothering me. I think anything spicy was a given and maybe dark beer. But once I started oral medication, within a few weeks I was a lot better. Still had flares off and on for a few months, but nothing as severe as prior to diagnosis. Thankfully I've been flare-free for about 18 months and its a wonderful feeling. The food you describe is practically my entire diet - haha. I love beans, broccoli, popcorn and wine. Have each of them several times a week. So hopefully you'll have good luck like me with just oral medication. (now the cost of that medicine is through the roof, but worth every penny!)
  • nancr2000
    nancr2000 Posts: 20 Member
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    Oh yes, and I agree with the greasy or fried foods. Those were the first to go and I don't miss them a bit (okay, maybe have a french fry or two from time to time).
  • missmacgetsfit
    missmacgetsfit Posts: 7 Member
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    That is awesome that you're not suffering from it now! I hope to get myself into remission soon. I've tweaked my diet a lot to try, but at the same time, I'm getting married at the end of next month and I really don't want to follow the whole "white breads, white rice" plan because it packs on the pounds. I'm doing a lot more proteins and cooked veggies now. So far, so good!!
  • kpodaru
    kpodaru Posts: 133 Member
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    take a look into a book called wheat belly total health. ignore all the fear mongering *kitten* in there but i pulled some interesting facts about how grains adversely affect skin conditions (eczema, psoriasis etc), cause gum issues/accelerate tooth decay and there's a lot of info around UC and crohns disease.

    i cut out grains after reading the stuff that pertained to me (eczema/sensitive gums) and after 3 weeks of no grains, my eczema issues went away and have not returned (and my skin is amazing) and the sensitive spot on my gum that used to bug the hell out of me and bleed for no freaking reason WENT AWAY. am totally floored by this.

    worth a shot to look at this book and read about what it says about UC and crohns disease!
  • missmacgetsfit
    missmacgetsfit Posts: 7 Member
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    Thanks for the suggestion! I will definitely look into it!!!
  • MimiMayRR
    MimiMayRR Posts: 19 Member
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    I have Crohn's also. You might want to look into the low FODMAPs diet. It's helped me tremendously and I find it pretty easy to follow compared to some of the others out there, like SCD, GAPS, or AIP.
  • TheLegendaryBrandonHarris
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    I have Crohns. Had a resection in 2006, suffered with symptoms since 1996. I'm virtually symptom-free now.

    Crap...my appointment is here....I shall return!
  • bbontheb
    bbontheb Posts: 718 Member
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    Hi there, I have undiagnosed major stomach and bowel issues. I have been on a no/low Fodmap diet for almost a month and have had really good results. Better days than I have had in over a year or more. On Facebook there are a few fodmap groups (UK, low fodmap for foodies, other ones). Monash university has an app (about $10) that helps a lot as well. The first few days were difficult, but it got easier. I've had some crap food the last few days and not feeling great (sorbet, etc).

    Anyone can add me as a friend-would love more friends with UC or related type issues. I also have pretty extensive gerd, etc.

    My diary is open and I am an overeater occasionally so have hard time stopping my noshing....I started April 15th with my diary and you can go back to see what I've been eating since then (if you are a friend on MFP) :)

    My surgeon recommended this diet, it has some scientific backing to it (not just trendy stuff).
  • bbontheb
    bbontheb Posts: 718 Member
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    Popcorn is low fodmap but can be a gut irritant like many other items (caffeine, alcohol, other foods). Cut out all beans. Grains-rice, quinoa is low fodmap. Oats irritate me if I have over 1/3 cup (raw, add 1c water to cook). FODMAP elimination is supposed to be 6-8 weeks. I started a group on here for fodmap but haven't added anything yet...Would love anyone to contribute :)
  • Fayeworth
    Fayeworth Posts: 60 Member
    edited May 2015
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    Crohn's sufferer here, diagnosed 8 years. I can't eat anything rich in iron such as spinnach, cabbage, rocket. I avoid foods such as baked beans and also sweetcorn gives me pain :-(
  • TheLegendaryBrandonHarris
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    OK, made it back.

    Here are a few things I recommend:
    Get a notebook, or use MFP to log what you eat, how much you ate, how FAST you ate, and how much fluid you had with it. It's incredible the difference I've noticed by slowing down and chewing my food and having plenty of water or other fluid with my meals. For YEARS I told myself and others, "I cannot eat raw vegetables." Totally not true.
    Once you list those things, go back to your log and record how you felt---what the results were. How much stress were you under? Was something bothering you? What physical activity or inactivity level were you at?
    You're trying to learn your body and this is data. It keeps you from ruling out foods as things you can't eat, when all the while you didn't chew, didn't have enough water, ate too fast, were stressed, etc...

    I have certain foods I avoid. Potato chips, fast food, too much cheese, more than a few ounces of milk or ice cream, too much meat. I can eat popcorn, lettuce, carrots, broccoli, beans, Grape Nuts with soy milk.
    When I feel like things may be getting a little inflamed, I have several things, based on how bad it feels.
    First, I will steam veg instead of eating it raw. The next step is to eat softer foods like chicken and rice, scrambled eggs, grits, biscuits, breads, bananas. After that, it's light soups, broth with saltines (or no saltines), sugar-free Jello, Gatorade.
    And when it's really bad, nothing. NPO (NothIng per oral)/ No water, no food, no Kool-Aid, nothing. I'll give it about 12 hours and try with some Water. If that works, then Ginger Ale, then broth.

    I had these episodes regularly for years, maybe one weekend a month. Since I started paying closer attention to the signals my body sends me, I've only had one in 2015, and none since late January.

    Best of luck.
    Brandon





  • journalistjen
    journalistjen Posts: 265 Member
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    My brother has suffered UC almost all of his life. He was diagnosed with Crohn's Disease in his late teens, and due all the damage to his Colon, it was removed in his twenties. He has to wear a colostomy bag. The doctor's tried the surgery where you train a part of your small intestine to be your colon, but it didn't work. I think paleo diet with modification would benefit you. Crohn's is believed to be autoimmune. I have MS, and I follow paleo eating to avoid injections. Whatever you do, work out an eating plan and stress management plan.
  • mimaaaam
    mimaaaam Posts: 2 Member
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    i was diagnosed with uc when i was 3 yrs old so basically for ever. i cant eat beans and greasy food.
  • Donnah781
    Donnah781 Posts: 37 Member
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    Hello. I have had uc since i was 15. I use healingwell.com. its great. Its free has forums and chats for many diseases. Been a member for over 10 yts.,
    Friend me here . We could support each other :-)
    Heres to a happier colon
  • NotJustADieter
    NotJustADieter Posts: 229 Member
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    I have IBS, so I'm in the same general region. I have my good days, my C days (most days) and my rare but horrific D days, which mostly land me in the hospital. They can be triggered by foods (whole nuts and rice are the worst for me- I don't digest them fully), or more often emotions (I have C-PTSD) or unrelated illnesses causing stress.
  • missmacgetsfit
    missmacgetsfit Posts: 7 Member
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    Thanks for all the advice people! It's great to see others on a weightless journey and dealing with IBS diseases as well. I haven't heard of low fodmap before. I'm focusing on a more paleo diet currently, as I was doing okay with white carbs, but I cannot stand the weight gain from all the sugars. I'll be adding you guys if you don't mind terribly so I can see your diaries and such as I learn. Thanks again!!
  • missmacgetsfit
    missmacgetsfit Posts: 7 Member
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    My brother has suffered UC almost all of his life. He was diagnosed with Crohn's Disease in his late teens, and due all the damage to his Colon, it was removed in his twenties. He has to wear a colostomy bag. The doctor's tried the surgery where you train a part of your small intestine to be your colon, but it didn't work. I think paleo diet with modification would benefit you. Crohn's is believed to be autoimmune. I have MS, and I follow paleo eating to avoid injections. Whatever you do, work out an eating plan and stress management plan.

    Thanks for the advice!!!! I think the paleo is a good idea also. I've been looking into it, but haven't fully made any choices yet. But I appreciate the input, I've heard that since MS and Crohn's are autoimmune that following a similar diet is really helpful. I hadn't met anyone yet to confirm that though, so I'm glad to see it is true!
  • Ellst85
    Ellst85 Posts: 30 Member
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    I have uc- diagnosed about a year ago- never been oit of my flare except for about a month after intense treatment.last summer I spent two weeks in hospital and requested to see a dietician who told me that it was so far down my colon that it didn't matter what I ate- helpful!!!
    I find that keeping away from processed foods is best for me- meat isn't great either, I tried a low fibre diet and ended up in hospital with an impacted bowel that they couldn't get clear for four days! So anything that speeds right through! The message is- everyone is individual and you have to listen to your stomach and how it reacts- it's boring and crap and pple will think that you're being picky about food but one of the biggest mistakes I've made is trying to eat 'normally' so I don't cause a fuss.