Anyone fighting this through diet and not medicine?
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.
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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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.0
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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.0
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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.0
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Thanks for commenting, lbs42. Have you found eliminating anything else that helps?0
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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!0 -
I got a book on gluten free eating and the author said that hard liquor in moderation is actually good for the gut...0
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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.0
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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 much0 -
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!0
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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 you0 -
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!)0 -
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.0 -
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!0 -
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!0
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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!!0
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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:0 -
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.0 -
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!0
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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! 0 -
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!0
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Gosh, you are complicated I am so happy that you've figured out what works for you and have been flare free since 2009. That's wonderful! I'm glad Humira is working for you. I have a friend who has finally found some relief with Remicade and has had minimal symptoms. I feel very blessed to have such mild symptoms and only moderate inflammation. I just wish doctors could predict the future so I knew what to do. It's a tough decision to make whether to go on meds. I'll see what the doctor of Integrative Medicine says. I am eager to treat this holistically and not just with meds. Even if I do go on the azathioprine, I want to make sure that I am taking care of my whole self and not just swallowing pills! Take care 0
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Sorry all- I should have quoted the people I was responding to ... hopefully you'll figure it out 0
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I am treating with diet only. I went the Humira and Methotrexate route initially (dx Nov 2013) but it made me feel absolutely horrid so I stopped it. I am doing okay without it I have pain and occasional bleeding but so far it's not to a level I can't tolerate. I would rather be able to work and take part in my family's lives than feel like death everyday.0
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I am glad I found this group! I was diagnosed with mild Ulcerative Colitis in 1998. At that time the only diet recommended was stay away from salad bars. Physician treated me with Rowasa, Asacol, and Prednisone over the years. In 2006 I started working for a University Medical Center. I started seeing the GI physician there. He found that I make -0- IgA, did an EGD and Colonoscopy and said I didn't have Ulcerative Colitis. He took me off all my medicine. I still had GI issues and every CT scan I would have for kidney issues showed inflamed bowel. So I'm thinking I don't know what to believe. I definitely don't want another colonoscopy.
I plan to fight this through diet this time. I plan to start the low-residue diet. If I don't have Ulcerative Colitis, I definitely have some other type of inflammatory bowel disease.0 -
The low residue diet is really helping. Why hadn't I found that earlier??0
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I do both food and medicine to treat my UC. I was already vegan long before diagnosis. My doctor says that is probably why it took so long for the disease to present itself. So I'm still vegan but now I also have to avoid gluten, corn, and oats. I'm also on Apriso, Canasa, and hydrocortisone enemas once a week. The enemas seriously changed everything.
When flaring I need to eat a low fiber diet but now that I'm better I can eat lots of veggies. It does help if they are cooked. I still haven't worked up the courage to eat lentils and split peas but black beans and pinto beans are fine.
@ckdprevent - It took 2 years of symptoms before my UC was actually visible in my colon so I don't know that diagnosis is all that simple. By the time they went and did a 2nd colonoscopy on me I had progressed to severe pancolitis.0 -
Thanks, I'm just now getting to my happy place. I'm going to give it another week, if I am still doing good, I will slowly return to a more balanced diet, sticking to canned fruit and cooked veges.0
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I am so glad I have found this group. I was diagnosed with Crohn's for 23yrs. I went 10yrs without any flare ups. Then 3/4yrs ago, starting having flare ups. Now I was hospitalized twice this year in May and June and the Dr have told me there's no way I can continue unless I start taking Humira, which I have been avoiding due to the side effects. Anyway, I've resigned myself to start it next week. I'm currently on steroids and my weight since May has gone up over 50lbs. What really annoyed me was that I wasn't having ANY symptoms, none at all. then I ate something that obviously didn't agree with me and flare up followed. Even though I am going to start Humira, I still am looking to getting help myself through diet and exercise so one day I can come off the meds and avoid flare ups. I'm going to stick to non processed diet, with no dairy, grains and nuts and seafood which seem to be my issue.0
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I have refused medication for my IBD/IBS even though it got debilitating a few months ago. It was so bad i could not eat and lost 20lbs in 3 weeks. I welcome the loss but would rather it be in a healthy way. I changed my diet to small meals throughout the day and plant based. It has been working great. Popcorn is a huge trigger for me.0
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I have IBS, and am on a chemical elimination diet, which is an ever stricter diet than the FODMAP diet. As FODMAPS was still an issue for me.
It's not meant to be a permanent diet, but because it takes me so long to get back on track after trialing certain food groups, it's been over 3 months since I have been on the diet. Still it has helped me heaps. No more nausea ( I was getting it everyday), and getting closer to understanding which foods really affect me.
No medication, I just don't think it teaches your stomach to function probably and just suppresses the issue, so I decided against them. Plus I wouldn't really know what the real food triggers were if I took medication.
I don't even take probiotics, because I got a huge, huge reaction to them that made my IBS ridiculously worse. I am too scared to try to reintroduce them.
I still have a way to go, but I am getting there. I still get brain fog, and flu symptoms with certain foods.
I am lactose intolerant, unsure yet if I am gluten intolerant for sure, not too bad with salicylates but noticed some fatigue/flu issues. I don't eat any gluten anyway, because it always makes me feel too full. Eggs are a big 'no, no' for me.
I now suspect my lactose intolerance, made me more intolerant to other foods, but have a feeling if I keep lactose out I may be able to introduce those foods back without issue.0
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