Anyone fighting this through diet and not medicine?

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AmyMoenae
AmyMoenae Posts: 21 Member
The pain started out of nowhere back in November 2009. I was diagnosed in January 2011. My specialist insisted I begin taking two forms of steroids immediately. I was a little taken back. I said I would like to look into a nutritional route. He assured me I would be back for the drugs. That was almost 2 years ago and I have yet to get the drugs. I have a very strict diet that I have worked out with the help of my husband. Trial and Error has led me to what I can eat and what I absolutely have to avoid. When I stay within the limit I feel good, great even. But when I indulge on anything with gluten or grains and dairy for long, I am back at the ER. Morphine is the only thing that ends the pain/cramping/bloating for me. I have had pain for 14 hours straight at times. It is horrific as you all know. I have stuck with my diet plan and my last attack was my birthday...April 2012.

Just wanted to know if there was anyone else out there fighting the drugs being pushed and trying a natural approach to living with Crohn's... Let me know. Thanks.
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Replies

  • lbs42
    lbs42 Posts: 7 Member
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    I haven't tried your method, although I do try to limit dairy. For the purposes of going low carbs, I am also limiting breads, but this is recent.
  • Nerple
    Nerple Posts: 1,291 Member
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    When I was first diagnosed with Crohns, all that was prescribed was a diet change, going to a low-residue diet. And it worked wonderfully. At the time my main symptoms were a lot of indigestion and diarrhea 4-5 days a week, almost exclusively at night. But about 10 months in the Crohn's progressed to reoccuring partial bowel obstructions the diet alone was no longer cutting it. I switched to Pentasa 3g/daily. About a year-14 months on Pentasa and through the summer I was having a partial obstruction almost weekly (and mine usually set me back 3 days each time) so now I'll be starting on Humira when I return to the states.
  • AmyMoenae
    AmyMoenae Posts: 21 Member
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    I wish I could have talked to your doctor. Mine was so pushy and wouldn't listen to me. The daily diarrhea is the worst... next to the pain. SAme for me, 3 days after a flare-up and I would be able to go back to a normal days. Hope the Humira makes a difference for you! Thanks for responding.
  • AmyMoenae
    AmyMoenae Posts: 21 Member
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    Thanks for commenting, lbs42. Have you found eliminating anything else that helps?
  • mcarthur_jess
    mcarthur_jess Posts: 11 Member
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    i find rich tomato sauces, corn, and peas to be a no no! ice cream is like instant pain for me too however i manage all other dairy fine

    also too much caffeine!

    strangely i find i am better after a night of drinking alcohol! cant explain this!
  • AmyMoenae
    AmyMoenae Posts: 21 Member
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    I got a book on gluten free eating and the author said that hard liquor in moderation is actually good for the gut...
  • dArtagnia
    dArtagnia Posts: 26 Member
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    I haven't been medicated for over 10 years. I only fight mine with diet. I just avoid my trigger foods. For me, I cant have wheat bread, high levels of citric acid, reduced fat milk, spicy food, hot dogs, smoked meat, the list goes on... I have also found that when I eat organic, I am less likely to be effected negatively.
  • mkthav
    mkthav Posts: 16 Member
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    Amy,
    My husband has crohns disease and can not take immune suppressants. He also suffers from arthritis. I have been researching diet to help control his crohns. He is a big fan of sugar. He is addicted to Mt Dew.. He says it helps his stomach.. Any ideas on how he might use diet to control his symptoms would be appreciated.

    Thank you so much
  • 68116
    68116 Posts: 6 Member
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    I find that the less my gut needs to work...the better off I am. Potatoes seemed to make my belly feel best. I am not able to fight through diet only. I am on meds and every 8 weeks I get a Remicaid infusion. So far it is working for me. As for pushy doctors...I needed to fire mine and find another. So glad I did! Good Luck to us all!
  • mkthav
    mkthav Posts: 16 Member
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    My husband does well with potatoes also, although most of the diets I have researched don't allow those type of carbs.


    There are several new clinical studies going on. I am praying for a successful treatment that will help fight this disease..

    Best wishes to you
  • realgirlswearpearls
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    I wasnt looking to control my crohns through diet....but then I started MFP and became so much more aware of what I was eating and how it was affecting me. I have now figured out that cream is a big no no (but not milk - weird) and the more vegetables I eat - the more my body struggles to properly digest them. If I have a big salad for lunch and veggies for dinner I will pay for it the next morning. But Ive figured I can have one or the other with only minimal pains. Its been quite eye opening to be honest.

    Ive started to cut down on my bread products too as I figured they were giving me terrible cramps/spasms (pre - MFP I was pretty much addicted to fresh pretzels from the bakery....I miss them so much!)
  • realgirlswearpearls
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    I wasnt looking to control my crohns through diet....but then I started MFP and became so much more aware of what I was eating and how it was affecting me. I have now figured out that cream is a big no no (but not milk - weird) and the more vegetables I eat - the more my body struggles to properly digest them. If I have a big salad for lunch and veggies for dinner I will pay for it the next morning. But Ive figured I can have one or the other with only minimal pains. Its been quite eye opening to be honest.

    Ive started to cut down on my bread products too as I figured they were giving me terrible cramps/spasms (pre - MFP I was pretty much addicted to fresh pretzels from the bakery....I miss them so much!)

    thought I should also add that Im now medication free for the last 10 weeks (I was taking sterioids, calcium supps and immunosuppressants) My symptoms have not dissapeared but now they are manageable.
  • fcordingley
    fcordingley Posts: 25 Member
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    I've recently been put back on an elimination diet by my dietitian to find out which foods react badly with me. For the first 2 weeks I'm only allowed to eat a really restrictive diet and am struggling to find meal ideas. I've done similar ones before but been allowed a larger variety of foods. Any ideas would be greatly appreciated.

    So, i can eat:
    Meat: lamb, turkey
    Veg: Sweet potato, broccoli, courgette
    Fruit: Banana, blueberries, rhubarb
    Grains: rice (includes all types of non- flavored rices, rice noodles, rice flour, rice milk, rice cake, puffed rice etc)
    Seasonings: salt, pepper, selected fresh herbs (no dried)
    Extras: Golden syrup (strange i know!)

    Have only been doing it for 5 days and am already bored! My diary is open if anyone would like to see what I have already had!
  • Jeannie_SP
    Jeannie_SP Posts: 8 Member
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    Hello all, I know this thread is not recent, so I don't know if anyone will respond. I've recently been diagnosed with Crohn's and am trying to come to terms with my doctor's recommendation that I start on azathioprine right away. I have moderate inflammation in my colon and ileum. I think I flared last spring/summer, which is what initially led to my first colonoscopy, but it was never painful just inconvenient. I am concerned about going on an immunomodulator like azapriothine and am interested in treating the disease naturopathically. I don't have any major symptoms right now despite the inflammation, so it seems like there would be no rush to medicate immediately. My present doctor insists that I need the medication to control the trajectory of my disease and avoid future complications. The scientific literature suggests that the benefits of medications, like immunomodulators, outweigh the risks. I am meeting another doctor next month with the hope that she will be more open to integrative medicine. Does anyone have suggestions for how to talk to a doctor about going a more naturopathic route? Are there any data that support the decision to treat Crohn's through diet and not go on medications? Thanks much!
  • meg312
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    Jeannie, I'm in the same boat right now. I am extremely sensitive to medication, and that is all the docs are pushing on me!!! I have had decent result (with minimal side effects) on the steroids, but have reacted poorly to the Imuran and also the Pentasa. The gastroenterologist I'm seeing is really pushy and all about meds. I would say do your homework and stick to your guns! I have hits and misses with diet (I don't do well gluten free, but some swear by it), but I have found acupuncture and meditation to really help as stress is my major trigger. Crohns is so different for each individual, I think that's why docs have such a hard time with it. I just don't see the point of being placed on a medication that only has a 50% chance of working in the first place, and even if it does work gives you skin lesions!!! Please tell me how those benefits outweigh the risk! If you get any solutions, let me know!!
  • sew92384
    sew92384 Posts: 3 Member
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    I have been on Humira for Crohn's Disease for the last year and a half and although I have not had a flare up since starting the medication, I am fed up with having to stab a needle into my leg every 2 weeks! I am looking for a way to be able to comfortably come off my medication and still manage my Crohn's with diet and exercise. I am currently working on losing weight so I am more confident when I tell my GI that I want to fight this with diet and not meds!

    My question is, I do not seem to have any foods or drinks that irritate me or make me double over in pain as I have so often heard from Crohn's patients. Aside from the one massive flare up that I had in May of 2012, I have not had any other symptoms and I'm starting to wonder if it is the meds or if I even have Crohn's. Does anyone else have this problem? If so, how do you manage through diet so you don't flare? I am determined to lose about 100 lbs. before I talk to my doc but I want to incorporate the diet now so I can get used to the lifestyle as I lose weight. Any advice is absolutely welcomed! I am just starting to research all my options so I can do this safely :happy:
  • tchell99
    tchell99 Posts: 434 Member
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    Jeannie, I'm in the same boat right now. I am extremely sensitive to medication, and that is all the docs are pushing on me!!! I have had decent result (with minimal side effects) on the steroids, but have reacted poorly to the Imuran and also the Pentasa. The gastroenterologist I'm seeing is really pushy and all about meds. I would say do your homework and stick to your guns! I have hits and misses with diet (I don't do well gluten free, but some swear by it), but I have found acupuncture and meditation to really help as stress is my major trigger. Crohns is so different for each individual, I think that's why docs have such a hard time with it. I just don't see the point of being placed on a medication that only has a 50% chance of working in the first place, and even if it does work gives you skin lesions!!! Please tell me how those benefits outweigh the risk! If you get any solutions, let me know!!

    I was on Asacol for 10 yrs and prednisone periodically before landing in the ER with sepsis in my gut resulting in 3 surgeries, 6ft of intestine lost, and an ostomy for 5 months. Had I not taken meds it would likely have happened sooner. Been on azapriothine (Imuran) off and on for the last 3 years. Until recently I have begged and pleaded with two different docs to stop meds, but they strongly advise against it. I have hit acceptance. If the best available science for now says azapriothine will reduce my chance of having to go through that hell again by even 50% I have to take it. I also changed jobs and moved cross country coming up on two years ago and my stress is significantly reduced, which is also helping symptoms.

    Like someone said earlier, everyone is different, but please take this illness seriously. After 12+ years I got so used to the pain and my pain threshold was so high that I nearly didn't go to the ER that day. They said if I had waited another couple hours I would have died.
  • britandcelt
    britandcelt Posts: 2 Member
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    I have to fight my Crohn's with both meds and diet. I have many environmental and food allergies/intolerances. I follow with an ENT and an Allergist for asthma and rhinosinusitis and am on allergy injections for cat/dog/trees/dust mites. I've had a lot of allergy testing and have lots of positive IgE (immediate) as well as IgG4 (delayed reaction) allergies. With IgG4 you can eat the food and feel fine but then three days later have a problem. On my IgE I'm positive for basil, codfish, cow's milk, mustard and peanut which doesn't appear too bad. But on the IgG4 I test positive for casein, cow's and goats milk, whey, cheese (parm, cheddar, Amer), yogurt, whole eggs, bran, gluten, oat, wheat, bakers yeast, soybean, apple, banana, etc. It gets confusing because my milk allergy doesn't cause GI upset, it's lactose intolerance that affects my gut. As long as I take Lactaid pills I'm fine. But, eating dairy can contribute to nasal/sinus congestion. I can eat bread if it's enriched white (this has had the bran/germ stripped away and only the endosperm remains which doesn't bother me). Depending on my symptoms, one week I can eat something and be fine but the next week I'll have trouble. I tried many meds (Imuran, Asacol, Colazal, Entocort EC, Lialda, Asazan) and either had reactions or minimal response. I was then put on Humira. I even ended up having to go to once a week dosing and that has finally worked the best. I'm still pretty symptomatic some days but haven't had a large flare since 2009. I wouldn't be where I am now without the Humira, but also without the close watch on my diet. I tend to stick with the same foods that don't bother me, even though some might not be the best choices but, I do what works for me. I have days where if I didn't take Imodium or codeine I wouldn't be able to stay the day at work. It's taken years to "perfect" my routine and it still changes from time to time. Sorry so long....I am a complicated Crohnie!
  • Jeannie_SP
    Jeannie_SP Posts: 8 Member
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    Thank you for your response! I forget to check the groups so I did not see it until just now :) I changed doctors and found someone who is much more responsive to my needs and wishes. She referred me to a doctor of Integrative Medicine to see how alternative approaches can help me. She has also said that it is my decision whether to take medication, and that there is no rush for me to decide. At this point I am not interested in going on azathioprine. I've heard a lot of stories about side effects and am not ready to go down that path. But I also have the luxury of time right now since my Crohn's symptoms are mild and more inconvenient than painful. I am not sure what I would do if I were in a lot of discomfort or pain. I hope you find some solutions! Take care!
  • Jeannie_SP
    Jeannie_SP Posts: 8 Member
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    I feel so lucky to not be dealing with major symptoms but know that there is no guarantee that I won't have problems due to the inflammation in the future. I would be willing to try out medication to get rid of the inflammation and then see if I could go off it and maintain on my own. But I agree wholeheartedly that Crohn's needs to be taken seriously and is very individualized. It's very hard to compare situations since everyone experiences something different, especially in their reactions to foods and meds. I also have a high threshold for pain/discomfort. My doctor suspects that I've had Crohn's for awhile but just tolerated it. I am glad that you are doing better!