Advice (alternatives to medication)

[lauramarie24]

Hi all,
I became ill in Dec 2011 and the doctors couldn't tell me what was wrong with me, even though i was telling them that is was crohn's because my mother also suffers from this, then in March 2012 i admitted myself into A+E, where i spent a week having tests done and was finally diagnosed with crohn's disease. I was then told i had to have an operation to have the affected part removed, so i spent a further week in hospital. I have decided not to take the medication that has been prescribed for me, as i don't see the logic in lowering my immune system to prevent the Crohn's returning to potentially be ill from something else.

I have been free from any flare up up until this weekend, my doctor has now prescibed me with prednisone, but wants me to think about long term medication and giving up the fags.

I would really like to avoid long term medication, so i was wondering if anyone has a success story that doesn't involve long term medication.

I have started taking immoprobio (50 billion), and i have been give calcium and vit d supplements.

 

[KWalker]

While you won't get many people on here telling you that it is possible to live without medicine, there are a few of us that manage with just diet alone. The main diets are SCD and Paleo but there are some members who have had success with vegan diets as well.

It's not always easy to follow a strict diet, but it can work depending on severity, how strict you are, etc.

 

[lauramarie24]

Hi, I had carried on eating my normal diet after the operation, i had done a bit of research on crohns's and had read that people have used just strict diets. i have noticed lately that with me the processed foods are starting to affect me. So although it will be hard for me to stick to a strict diet i would really like to try, as i really don't want to spend my life on medications that potentially don't work. i don't want to go down the same route as my mum. i don't really ever remember my mum having long periods of being well. do u take any supplements along with a strict diet? x

 

[KWalker]

have a look at the link in my signature if you're interested. It's a little "blog" I've created so others can follow my diet.

 

[my little penguin]

Sorry you were dx.
Theory goes that there may be multiple types of Ibd.
Diet does play a role but medicine needs to be taken.
A few very few can control Ibd with diet only.
How ever most can not keep their Ibd under control through diet only and not from lack if trying.
The only scientifically proven diet is EEN .
Which is formula only and no foods . This is typically done for 6-8 weeks to induce remission. Once food is resumed however the symptoms return.
Ibd is an auto immune disorder which means your immune system is over active and keeps attacking itself ( hence the inflammation ) over time the repeated inflammation forms scar tissue . The scar tissue can result in sstrictures or fistula .
These sometimes need to be removed.
Once its gone the Ibd tries to "heal" the same area with more inflammation and the process starts all over again. Pretty soon you have no gut left.
You can live without a colon but you can not live without a small bowel.
The immunosuppressants stop the body from attacking the gut .
You need to have a long talk with your Gi and express your concerns .
You also need to have your Gi explain what course he expects your disease to take if you decided to go without meds.
Good luck

 

[mnsun]

I think it may depend on how active the dis-ease is presently in order to gauge whether an exclusively diet/supplement/lifestyle prescription can do the trick. Ideally, you would like to have your inflammation down and in control before going awol, off meds. First and foremost, if you're on pred, you must speak to your physician about supplementing D3 (5000 iu), Vitamin K (1&2), calcium, and magnesium (malate).

It takes discipline to wean off/deny yourself sweets, hydrogenated oils (trans fats), fake sugars (high fructose corn syrup, aspartame, acesulfame potassium, sorbitol, even white sugar should be nearly eliminated etc.), preservatives (nearly everything boxed that doesn't have whole food ingredients: maltodextrin, food dyes, nitrites...), refined/white grains, genetically modified ingredients etc... Not to mention smokes--these might help lesser IBS-like problems in the short run, but not Crohns--it will only worsen it, seems to be the consensus. Caffeine is also a problem for most.

Conversely, it takes time/$ to develop a knack for, and palate for, making whole food meals. You have to learn to like good fats virgin coconut oil, avocados, walnuts, fish etc. Anti-inflammatory herbs need to be included into foods: ginger, tumeric, garlic etc. Fermented/probiotic foods like vege-kimchi, saurkraut, kefir should be used. Prebiotic foods should be used like plantains, steamed broccoli, pumpkin and squash. Consider whether sprouted grains should comprise the bulk of your grain intake, or whether you should exclude them (phytic acid, gluten, and gliandin being of concern). Also consider whether to limit or completely eliminate milk and red meat from your diet.

Vitamin/mineral deficiencies must continually be supplemented: Ks, B12, D3
(5000iu), calcium, magnesium (malate/taurate), zinc, l-glutamine etc. Supplements comparable to pharmaceuticals, at least functionally, should be considered (anti-inflammatories, immuno-balancing, anti-pathogenic). Things like andrographis, CLA (6 grams daily-not if you have liver problems), enteric coated fish oil (about 3-4 grams actual omega 3s a day, NOTE: fish oil at this dose may thin blood), maybe alternate 2 or more quality probiotics NEED TO BE RESEARCHED. Less tolling pharmaceuticals like Low Dose Naltrexone (LDN) should be researched (not if you take opiates).

Above all, you need to want to learn more, and more still. You have to research all of the above. It is only a rough, error-ridden guide. Most of these things can be incorporated with pharmaceuticals (except maybe andrographis) until you are in better shape. Find mega online retailers like vitacost, iherb, lucky vitamin... for best prices. Or support a local,co-op or family owned, health food store. I am not a doctor, just another faceless voice on the internet. See MY Supps for MY Dis-Ease in the "Success Stories" section and keep surfing this site for valuable lived experiences.

 

[KWalker]

Diet does play a role but medicine needs to be taken.
A few very few can control Ibd with diet only.
How ever most can not keep their Ibd under control through diet only and not from lack if trying.

I'm sorry, but I don't agree with that. I don't want to turn this into a debate thread because that's not what this member was asking for but it definitely possible to control/keep crohns under control with diet alone. And most of the people that fail diets, don't follow them 100%. Otherwise, they are proven to work. When they say you need to be strict with a diet, it doesn't mean you can have a bite of chocolate every once a month because the rest of the time you're strict on the diet. You need to be 100% committed and want to succeed on the diet in order for it to work, and yes, they are proven.

Read up on the science behind the SCD diet, you might be a little surprised how much it makes sense. Now, I'm not saying for everyone to throw their meds out, abandon their doctors and change their eating habits because I think it can only be done in certain circumstances and I think its important to have a supportive doctor helping. I've said it before and I'll say it again. Its so much easier to take medicine than it is to follow a strict diet, but medicine may also come with side effects.

After I started the SCD diet, I felt better within a matter of days. I've had diarrhea my whole life and within days I was having solid bowel movements. Its not coincidence. Also after starting the diet I've found amazing websites where LOTS of people share their experiences with diets (not just scd) where you will find endless amounts of people who have had success. There are even support groups (just like this one) for people specifically on the scd diet and there are A LOT of members.

I just want to use one more example, and that's Gianni (sorry). He has admittedly said on here he doesn't know anything at all about medicine like Remicade or other biologics (often the first, but most dangerous medicine prescribed) and why? Because he doesn't need too. He's probably at close to the top with the healthiest people on this forum (besides the partners/parents who don't have IBD) and he's doing it all by diet.

Anyways, I don't want to ramble on.
TL;DR Am I saying to do it? No. Can it be done? Yes

 

[rollinstone]

Scd diet all the way, when you can find a safe zone of foods, you'll be laughing, only problem is it takes time and discipline, for instance chicken broth takes me a few hours everyday but atleast iv got a cooked/boiled chook to eat after that I know will never upset me

That being said, if you do bloodwork tests constantly on imuran you should be able to pick up and avoid any side effects before they become an issue

 

[lauramarie24]

Hi, thanks all for your feedback.

MUSUN - I was first diagnosed with crohn's last march and had my first operation straight away, I have refused any medications that the doctors want me to take, because i don't see the benefit from lowering my immune system to prevent a flare up of crohn's only to open myself up to other infections etc.

KWALKER - I have done a bit of research on the SCD diet, and have given it a go since writing on here the first time. I have seen a big difference in my bowel movements since eating well. Although I am eating whole foods most of the time there are times i eat what I'm not supposed to. It is hard to keep to this diet but I am determined to do my best to keep to it. If it allows me to live a life free from medication and flare ups i will do it.

Can i ask how long you have been on the SCD and whether you have had any flare ups or problems with your crohn's since being on it?

 

[KWalker]

I started the diet on January 2nd, 2013. I really think you should have a look at "My journey with the Specific Carbohydrate Diet". If you look at the first post I posted in this thread you will see it under where I posted. If you click that link it will bring you right to it.

A few days into the diet I started to feel really crappy for a few days, but that is actually a really good thing because it means the bad bacteria is leaving your body. You should get excited if that happens to you. Other than that I've had no problems. I went from being able to poop through a strainer 6-8 times a day because it was so watery (TMI, sorry lol) and now I go 1-2 times a day and it is solid. I also have two abscesses that have significantly improved since starting the diet. I have more energy, and I feel better overall knowing that I know every single ingredient that goes into my body.

That's perfectly okay if you've cheated a few times at the beginning, but in order to experience the diet's full potential you're going to want to stick to the foods allowed only. It can be a big transition going from eating anything you want to having to really consider food choices but it is worth it in the end.

I'm not trying to say that if you do the diet you won't need medicine because I can't tell you how severe your crohns is, but I do know it can significantly decrease the odds if an individual follows the diet and is healing. I've been med free for 3 years now, on the diet for 20 days, and don't see myself going back on medicine anytime soon.

I didn't want to go on medicine so I did what I needed to do to avoid it.