Anyone dealing with IBD?

Hi. I just found out that I have IBD, most likely Crohn's Disease but need to wait for biopsy results to be certain. But having this has caused me to lose much more weight than I had initially intended. I need to gain, but with the,pain and nausea, it is hard. I haven't been started on any kind of medication yet, so I'm hoping when I am, it will get easier. But I was wondering if anyone had any suggestions or thoughts. Thanks.

Replies

  • Marjrides
    Marjrides Posts: 28 Member
    I do not have this problem, but my sister does, and my daughter is gluten intolerent. The Specific Carbohydrate Diet often known as SCD has helped both of them. Also a friend who suffered from severe Crohn's Disease found relief as long as she followed the food guidelines. I will try this new system to include some links....
    http://www.breakingtheviciouscycle.info/ and http://scdiet.org/ and http://uclbs.org/

    Do some research and listen to you doctors unless they try to tell you that diet does not matter, because in this case it really does! Good luck!
  • whiskeypony
    whiskeypony Posts: 4 Member
    I have Crohn's Disease and over the past decade I have tried twelve different diets for three months each - vegan, vegetarian, FODMAPs, SCD, whole 30, nightshade-free, grain-free, dairy-free, brassica-free, and a handful more - and I have found diet has no impact on my disease. This is not to say that some foods are not more painful than others, but avoidance does not reduce my inflammation over time. My sister and mother both have Crohn's as well and through their own experimental eating they have found the same conclusion. IBD is a highly individualized disease, though - even the three of us have very different manifestations and surgical/medication needs. Here's hoping drugs do the trick for you!

    I've found when I'm very nauseated the easiest way to keep things down is to use a big wide straw like you'd use for bubble tea. Target sells wide, reuseable silicone straws that do the trick. I put the straw as far back in my mouth as I can handle. The less time water/Ensure/milkshakes/soup spends on my tongue and in my mouth, the more likely it stays down.

    Good luck, and let me know if you have drug/treatment/support questions! I've been through just about everything.
  • macelmer
    macelmer Posts: 55 Member
    edited October 2014
    I have Crohn's Disease and this is my advice: I have tried 2 different diets and have found that I cannot eat the foods they recommend with out repercussions. So what worked best at first was to keep a food diary. In this diary I would write down the foods I ate and when I ate them (like breakfast, lunch, dinner, snacks, etc.) and how they make me feel. This helps you to figure out which foods to avoid, for me I am lactose intolerant but can tolerate small amounts of hard cheese and a few brands of yogurt. I also have a hard time with the standards: stringy meats, hard to digest veggies and fruit, seeds and nuts; as well as some lunch meats, Ensure/Boost, and greasy foods. I also suggest seeing a dietician who specializes in IBD patients for food recommendations.

    CD and how it affects people is very individualized so what works for me might not work for you and vice versa.

    When I am suffering from nausea, I eat very plainly: saltines, soups, fizzy soda, and ask the doctor for anti-nausea medicine. There is one on the market that dissolves on your tongue and works quickly.

    If you are looking to increase fluids, try homemade flavored water. No calories or any nasty additives but tasty just the same. I like cucumber, orange and dill waters.

    Unfortunately for me I have never achieved remission in the 7+ years I have been diagnosed and I am out of treatment options that my insurance will pay for. I use MFP primarily as a food journal because I am in a constant state of trying to gain weight.


    Good luck, and if you have any other questions, are in need of support or such, feel free to friend or message me.





  • jbgolf52
    jbgolf52 Posts: 210 Member
    I was going to make a post about something similar, but for IBS-C. I most likely have SIBO as well, but from my experience the cookie-cutter diets don't work. That being said, the big offenders like wheat, onions, and garlic are the ones you want to avoid the most as they are the main ones to cause problems with people. Dairy is a grey area, I can tolerate cheese, greek yogurt, and some ice cream but give me a glass of milk and I'll be doubled over in pain in no time. The best thing you can do is to keep a log on MFP and then stay away from things that trigger your condition. My symptoms when I flare are stomach pain, bloating, some nausea, cramps, burning sensation, and a feeling like there's a balloon in my stomach. It makes it hard to eat and I actually went two days this weekend without eating due to pain, it sucks. All I can say is stick to foods you like that don't give you problems, and that are soft. So things like eggs, potatoes, rice, bananas, peanut butter if you tolerate it, greek yogurt, etc.
  • chaos416
    chaos416 Posts: 89 Member
    I was dx'd with Crohn's in 1989 and had shown symptoms at least 5 years previous. Like the others said, your 'bad' food list will be specific to you and some things you can tolerate when you're not in a flare will send you running when you are. Over the years I had little to no response from drug treatments and after 6 months on Humira in 2010, I threw up my hands and quit. I had a second re-section in 2009, but my menopause started about the same time and I've had only minimal issues with the CD since then. I'm actually overweight now for the first time since my 20's. I was never properly counseled about nutrition...just to watch for my trouble foods and try to eat low-residue when flaring. For a couple of differnt periods, I used Peptamen Elemental diet. Expensive, but my doc wrote a letter to the insurance company and they paid. It was either that or TPN at the time. However, I undoubtedly lost a good deal of muscle in various weight drops when sick due to not consuming or supplementing with enough protein. Get someone to advise you personally about protein.
  • cblue315
    cblue315 Posts: 3,836 Member
    I have been dealing with IBD all of my life. I was not diagnosed until I was 25. Since then (29 years) I have come to the realization that nothing works for everyone. I have to avoid oatmeal, deli or processed meats, all alcohol, most processed foods and a few other things. Oatmeal even in snack bars will send me to the bathroom for several hours. Alcohol will do so but not the same day as I drink it. It usually comes on the next day or later. Processed meats will take time to manifest into problems.

    Keeping a food diary is essential until you know what will work for your symptoms. My go to diet when I have symptoms is skinless cooked chicken, rice, saltines and tea. I do this for up to 4 days until all symptoms have subsided then add in other foods slowly to avoid recurrence. Since doing this I rarely have an occourence more than once a year.

    Keep in mind this works for me. It may not work for you. You have to find that out for yourself. Good luck.
  • chaos416
    chaos416 Posts: 89 Member
    @cblue That's funny about the chicken. When my guts are mis-behaving, I can't eat chicken in any form without trotting--a lot! All other times, I'm fine with it. Go figure.
  • I've been struggling with IBS, so unfortunately I understand (to some extent) the abdominal pain, nausea, etc. I don't know your exact symptoms, but I started by seeing a gastroenterologist. You also may want to look into the FODMAP diet. It has helped become a -rough- guideline to follow as far as knowing what foods to avoid/consume. You will have to test some foods for yourself to determine how it affects you but you eventually find what works for you. I am beginning my journey in gaining due to losing weight from my diagnosis as well as the stress that came with it. -Hope this helps a little
  • patsypooter
    patsypooter Posts: 175 Member
    I have to keep a very strict diet to control my IBS. I still am not 100% not close but it's better. FODMAPS is a good place to start but was not strict enough for me. I'm on no dairy, no gluten, no red meat, no sugar (even fruits) and quite a few veggies/starches are a no no for me. Best of luck!
  • I have ibs and the flare ups are horrible, I find a lot of veg actually triggers it and pro biotics ( probio 7 are what I use) are a life saver. Do the food diary, they are a bit of a pain but will certainly give u a better idea on triggers x
  • TrailRunnermn
    TrailRunnermn Posts: 105 Member
    edited October 2014
    A close friend of mine has Crohns Disease. She's been on so many medications and diets that it has been very frustrating for her. What helped her out was figuring out what foods worked well with her body (obviously). The key is keeping foods separate at first and eat them at least 30-60 minutes apart. This will help you determine what specific foods work well with your body since certain food combinations, although acceptable in society, might not digest well for you.

    When it comes to supplements, L-Glutamine was a miracle worker for her. I'm not promising anything but when she took 3-5g doses a few times a day and kept with it, she noticed a huge improvement. Another thing that helped was a probiotic. The one that she tried at first had quite a few strains of probiotic but didn't see well with her. The simple ones with only 3-6 strains have worked best for her. She just recently started taking Krill Oil and she feels that is really helping. Healthy fats such as flax, hemp, fish, and krill helps keep things from drying out (like the perianal area, etc). She takes Vitamin D3, Magnesium Glycinate, (other forms of magnesium, like magnesium citrate, can cause a bowel movement and this can be unfavorable at times) and L-Lysine (good for fighting bacterial infections). Also, she said that Epsom salt baths are amazing if you have any problems with a.n.al fissures or fistulas or just inflammation in the a.n.al region.

    Good luck and stay strong :)
  • CipherZero
    CipherZero Posts: 1,418 Member
    Diagnosed in 1989 here after my immune system crashed hard trying to keep up.

    Take a look at the book "Eating Right for a Bad Gut". It's old, but the information is still accurate, barring the advice about taking ALA supplements (it's converted more like 10:1 to EPA).

    In my case, finding the right medication to control flares was the key. I'm on Remicade after running out the effectiveness of all other medications and have been flare-free for a decade.

    The tl;dr version is: Try supplementing fish oil, cook vegetables until mushy to keep getting fiber and those needed micronutrients, and have a blood workup to determine if you have malabsorbtion problems requiring other supplementation, particularly of B12.

    Good luck!