So confused too much infomation

[Ella Blu]

I was diagnosed with Crohn's at the beginning of December this year knowing very little about the condition. The doctor has prescribed a liquid diet of Ensure shakes for the next 4 weeks to hopefully reduce inflammation and swelling. I have not given a thought to the Christmas celebrations which I will be missing it is such a relief to finally have a diagnosis
Since then I have spent endless hours researching medication and diets. There appears to be some evidence that following a food combing diet can ease discomfort, as with the Paleo diet. Iam so confused at the moment after reading so many contradicting things on different sites..
I am due to go back to my doctor on 30th December when he wants to put me on medication. I would rather not go down this road if possible, I would prefer to control my crohn's with a strict diet. Is this possible or am being foolish to refuse the meds. I have read some people have come off their medication but seems to be after taking them for a long time. Any advise would be appreciated.
Thank you in advance.

 

[JustAYoungLad]

Hi Ella, the reason you will find contradicting information on the internet that diet can help or have no effect is because Crohn's effects everyone differently. For example, people milk and yogurts help some people and for others, it make it worse.

In regards to rejecting medication, it's your own choice if your aware of the risks. In my opinion I would never reject medication as I know Crohn's can do damage if left to fester for a long time.

I've been on Ensure for 2 months last year and it's not as bad as it sounds. Once you get over the hump of the first week not eating it gets better. I eventually started to enjoy my Ensure meal and be drinking loads of them.

 

[grt73]

Hi, I agree with just a young lad, some foods are good for one and hellish for another. Have a think back over the symptoms you have had and what the possible triggers may have been. I was wrongly diagnosed for 15 years and only found I had crohns after having emergency surgery a year ago. Had I had the chance to have meds all those years ago I would have ripped the docs arm off. In my opinion the medication is key. Just got to find one that works well for you. As for the ensure, it's pretty crap but its doable. Find out if you can alternate between complan and other calorie type drinks. Got to try and keep up the nutrition levels whilst letting your body heal itself!

 

[Johnnysmom]

I think certain diets like the Paleo are useful in controlling symptoms. Not controlling the damage caused by your disease.

In order to reduce inflammation and induce remission meds (Prednisone) or EN (no food) is usually needed.

Most people then go on a maintenance medication. There are 3 different classifications. 5 ASA, immune suppressants, and biologics.

5 ASA's are for superficial inflammation and not particularly helpful in crohn's ( more so in UC)

Immune suppressants are mid-level drugs. They can take 3-4 months to work, are pill or injection form and are Imuran, 6mp, and MTX. If you read about these drugs when they are used for cancer treatment they are given in higher doses than for crohn's so not all information applies.

Biologic drugs are the heavier drugs like Remicade or Humira. They start working right away. Are given by shot or infusion. Very effective and have been shown if they are given right after diagnosis they can change disease course.

This is a basic overview. I hope it doesn't confuse you more. I know when my son was first diagnosed everything was so confusing. You will get a lot of great advice on the forum.

Some people have bad side effects from meds, are just plain scared of them, or have tried them and they don't work. Those are the people who usually try to control with diet. We chose to try the meds, knowing we could go off of them if we weren't comfortable with side effects or effectiveness. For my son there have been no or few little side effects (prednisone) and it has been totally worth it. I know he is healthier on meds because he started to grow again and gain weight.

No easy decisions. You just have to learn as much as you can and weigh the benefits vs the risks. Let us know how you are doing. (((((Hugs)))))

 

[Ella Blu]

Thank you very much to you all, your advise and information is gratefully received.

 

[UnXmas]

I found that the more extreme diets were very detrimental to both my physical and mental health. All the contradictory information made me end up terrified of eating anything, and feeling like a failure when I followed diets to the letter and ended up with more symptoms than before.

Experiences like that of course lead me to advise people against trying to control disease through diet, just as my more positive experiences with medications and surgery have led me to recommend conventional medicine. Others will have different experiences and reach different opinions, but I would say take anything you read online or are told by a nutritionist or alternative health practitioner with a pinch of salt. Don't be tempted to do anything to extreme or too restrictive. If you can make dietary changes that have clear benefits, utilise them, but don't expect diet to be a replacement for medication. I do limit fibre in my diet because that's what I've found helped me and it's recommended with an ileostomy. I've also had bad side effects from medications. It doesn't have to be a choice between diet and medication - you might benefit from both together.

I would consider where you are with your disease, and your life in general. If your disease is very severe, it's probably not a good idea to experiment with diet right now (and it would be an experiment, as there's no diet that's proven to help everyone). If you are in a better place physically and your doctors are not immediately concerned about your health, and if you have the time and inclination to look at your diet, then it might be more appropriate to try out the dietary ideas that seem to make the most sense to you. (You may also want to wait until after Christmas if you want to enjoy festive food. )

 

[mccindy]

One thing that might help you, Ella, is a food diary. Once you are feeling better, after the Ensure helps you get things under control. Write down everything you eat and what symptoms you have afterward. It's better to try starting with an elimination diet or low-FOD diet to start, so you don't have so many different foods to keep track of. Once you know what foods are safe, you can try a new food now and then and monitor yourself to see if you tolerate it. This is strictly to help control symptoms, as when you have a diagnosis of IBD, medications are usually necessary to control inflammation so you don't sustain permanent damage.

 

[carrollco]

Welllllll..... I don't know that I would do this again. My family was on me to try the natural method i.e. SCD diet. So I tossed the Humira and geared up for the toughest diet ever. It's been four months, the last month coupled with the worst pain ever. I am glad I tried, I really gave it my all. I won't even discuss the naturopath I consulted... one visit out 500 bucks. *sigh* Taking this path was good for me. It freed me to take medication without regret. We each have to discover our own way and come to peace with it.


Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.

 

[Kero]

I have personally been keeping track of what I am eating and how it's affecting me. I can get away with milk products where some people can't. It sucks that it's all trial and error

 

[michelle222]

I am sorry that you are overwhelmed by all of the options out there and I completely understand not wanting to take medication, I am in the same boat. This disease seems to be very person specific, so if you want to go the diet route I would suggest hiring a professional to assist you. You will hear from a lot of people that there is no one diet that works for everyone with Crohns, this is true. However, there is also no medication that works for everyone with Crohn's.

People have very strong feelings about medication on both sides, I would urge you to make sure you that you take your time and try to figure out the best option for you before making any big decisions. I know that at times I felt really pressured by doctors and others around me to take a certain drug or do something I didn't want to. Remember that you are in control of your treatment and to make sure that you are comfortable with whatever route you choose. As others have said, you also want to make sure to take into account the severity of your disease when making your decision.

All the best.

 

[Axelfl3333]

As a newbie I think you,ve probably made a small mistake in consulting doctor google,I,d listen to your dr.this forum is pretty good for advice but always go by your medical people.food wise greasy,oily,raw veggies and salad stuff can be bad just note what has an adverse affect and avoid alcohol for a while,personally it doesn't,t bother me other than lager(nightmarish).if you feel well enough try to increase your exercise regime if you look about the forum it seems to help,don,t now why,just does.
I know it's hard but try to avoid the leaflets that come with your medicine,they,ll blow your brains out,the side effects are pretty rare but no news is good news a.k.a dr google.just remember you,ll get bloods done on a regular basis that,ll pick up anything that's going astray.
Above all,it gets better.good luck