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Confused

Hi everyone, :emot-dance:

I was diagnosed with Crohn's Disease late last year.

I have been reading a lot of things about it and I have to say that I am simply overwhelmed by it all and I'm not sure what direction to take.

I am looking for just honest, straight forward answers to help me understand what is going on with my body.

My doctor had taken a blood test and it came back that I have a higher chance of getting the side effects from the medicines prescribed for this disease...has anyone ever heard of this? With that being said, I opted not to take any medication at this time.

I want to set out a diet plan for myself for the next few months....I will be completely honest in telling you that I have been eating whatever I want except for the things I love, like leafy greens, my brussle sprouts, lettuce and popcorn, bell peppers.

I have read you can eat those things and then I read that you shouldn't eat those things....this disease is making me dizzy. :ybatty: I was told that I can't eat strawberries because of the seeds but I can eat canned tomatoes with the seeds. I've been told that if I boil the veggies I love, low and slow that they don't loose their nutrition......HELP!!!!!!:rof:

Anyway,as I said, I am getting ready to set up a diet plan for myself and I was wondering how you all eat.

Also, how do you know when you are having a flare? Or when your Crohn's is active. When I was hospitalized last year, I had severe stomach pain at the very top center of my stomach and then vomiting. Is this normal for a flare...

I'm just trying to understand and would love to hear from you. I'm sure you have answered these questions a million times for other people but I would really appreciate your responses....Thank you so much in advance. :hug:
 
Hi and welcome.

Crohns disease and diet can differ greatly from person to person. What some can tolerate others can't.

There is a diet forum here you can browse through. Some of the diets mentioned are SCD, Paleo, GAPs and while in a flare some GIs suggest a low residue diet. Click on the link below to go to the diet sub forum and browse the threads of other members:

http://www.crohnsforum.com/forumdisplay.php?f=17

As far as a test that said you wouldn't tolerate meds that was probably a TMPT test and it is for the med Imuran. Some people cannot tolerate that med but can tolerate its sister drug 6mp. There is also methotrexate and the biologics like remicade and humira which you should be able to take because they aren't the same as Imuran.

I'm sure others will be along with their experiences as well.
 
Hi Clash and thank you for your response.

The blood test I had was some kind of a gene test and the doctor ordered it before wanting to put me on Humira.

Thank you for the link, I can't wait to get in there and look around.
 
I'm not sure what that test would be. I'll tag my little penguin and Dusty as they may know that test could be.
 
It was probably a test for Tuberculosis. I forget what it's called but usually it's commonplace to test for TB before giving a biologic because taking something that suppresses your immune system while having a strong infection can be fatal.

ETA: I think it's called a PPD?
 
I don't think so Crohns08 because if his ppd had come back positive he would've had to have chest xrays and if that was positive he would've been placed on TB drugs to treat the TB.
 

my little penguin

Moderator
Staff member
Was it a test before Humira and 6-mp/Imuran/Aza?
The 6-mp /Imuran /Aza does have a blood test for gene to see how your liver will process the drug .
Humira doesn't have such a test as far as I know
DS has been on it for almost two years
 
Kitt,
Diet is confusing to say the least. It is different for everyone. I've had crohns for 20+ years with one resection. I'm still on Remicade, Budesonide, Lialda, Omeprazole, and many supplements. My Crohns is of the stricturing type, I don't really have diarrhea per se and only have BM 1-2 x/day.
Having said all that, the biggest difference in my day to day feeling was when I started the Paleo diet. For me it was a life changer, pretty much stopped my daily gas,cramps, bloating and bowel sounds. It is a time consuming and expensive diet (and I eat organic). Lots of trips to store and time for food prep. But for me, it's been worth it and easy to stay on because results have been so good. I'm eating and tolerating things I thought for years I couldn't tolerate: like lots of nuts and seeds - but only roasted. Lots of veggies - but cooked well and/or juiced. I also take FODMAP list into consideration. I make large quantities and freeze stuff to help.
Good luck.
 
Thank you so much to everyone that responded.....I'm sorry that I don't remember the name of the blood test I had. I just know it had something to do with a gene test and then I got a call from my doctor that my results showed that I was at a higher risk of the side effects of the drugs so I'm not taking any....my doctor is not so happy with that decision.

Most days I feel like me. Happy go lucky and that annoying type that likes to make everyone smile. :) Lately, I have been feeling incredibly tired and might I say a bit depressed and not sure why. I don't want to do anything. I love to walk every day and I haven't even been doing that. Thank God I have a job so it gets me out of bed when I'm really tired.

I've been thinking about trying the Paleo diet but I don't know much about it. I have heard it is a lot of protein. I just want to feel like me again. In talking to my husband the other day, I realized that it has been some time since I have felt, well, happy. So this tired, depressed crap has to go ASAP....I'm going to research the Paleo diet and start there.

Thank you again for your responses....I look forward to learning all I can about Crohns and getting on the right path.

I think that I was somehow trying to deny I had it but there is no denying it and I have to take the bull by the horns as they say.

What a great forum you have here. So glad I found you.:dusty:
 
Personally, I would avoid diets like paleo or any extreme diet that involves cutting out a lot of things or which is very inflexible about what/when/how to eat. (With exceptions when conventional doctors recommend extreme dietary measures, such as liquids only, which is only used when absolutely necessary, or low-residue and low-fibre diets which are very useful in certain circumstances).

You will find a lot of conflicting advice about diet, and apart from some situations as I mentioned above, there is no evidence that particular diets or foods worsen or improve Crohn's beyond the anecdotal. Different people respond to different diets, so a lot of trial and error is necessary, though there are some things that are more likely to provoke symptoms than others, such as very rich foods, a high fibre diet, dairy products (if lactose intolerant), alcohol and spicy foods, so these might be useful things to look at first and see if they are consistently worsening your symptoms.

Avoid any diet that's overly restrictive, remember that just because you feel particularly bad after eating a particular food it doesn't mean the food was responsible, make sure your diet is always reasonably balanced, don't stress about what you're eating, and accept that there are limits to how much control we have over physical symptoms. And remember that just because a website tells you a particular food is bad, it doesn't mean it necessarily is (or at least, not for everyone).

It's common to feel a bit depressed when facing a chronic illness, especially if you're young and haven't had major health problems before. It takes a while to get your head round it but in time you should do, and normal life will resume again. Crohn's is probably always on your mind at the moment, but it should slip to the background of your thoughts more of the time when you're more used to having it, even if you're still having symptoms. Try going for your walks again, even if you don't feel like it at first. Does your husband understand the disease and how it affects you? Having someone supportive around, you should find you'll be able to bounce back from this depression sooner or later.
 
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I would not rule out any diets, try them and figure it out for yourself.
I've been living Paleo and I don't think I've felt better in 20 years. And my cholesterol came down from 244 to 179. (without meds)
But I know for some people it didn't help or even made them worse.
All I'm saying it be open to trial and error.
 
I have read you can eat those things and then I read that you shouldn't eat those things....this disease is making me dizzy. I was told that I can't eat strawberries because of the seeds but I can eat canned tomatoes with the seeds. I've been told that if I boil the veggies I love, low and slow that they don't loose their nutrition......HELP!!!!!!
I'm sorry, it seems we're just adding to the number of times you're given contradictory advice, and when you'd specifically asked for straight answers! Trying various strict diets had awful consequences for me - not just the physical effects of the diets, but the whole process of believing certain foods were bad and becoming phobic of eating, being repeatedly disappointed when I didn't get better and believing it was because I must be eating something wrong, being unnecessarily excluded from eating socially, etc., etc. Not to mention the confusion that resulted from getting so much contradictory advice both online and from nutritionists I saw!

But none of this means diets haven't benefited some people. And vice versa. When someone tells you how much a particular diet has helped them, they're not wrong in recommending it. Unfortunately straight answers just don't seem to be possible.
 
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A lot of the problem with diets is that people cheat or they think they are doing them properly but they aren't. They also are not quick fixes and can take 2 weeks to a month before noticing a difference. If you do a diet you have to be ultra strict and dedicated to it before you can really rule it out. I would definitely give diet a shot though.
 
A lot of the problem with diets is that people cheat or they think they are doing them properly but they aren't.
Crohns08 - I just don't think that is reasonable to tell someone new to this disease. It gives the false impression that the majority of patients can control their disease though diet if only they stick to it religiously and that is unfounded.

I would say that a lot of the problem with diets is that we want and hope desperately that they will be the answer to this disease that from symptoms alone seems to be a digestive disorder. We think it makes perfect sense that a disease of our digestive system may have been caused by diet and if it wasn't caused by diet that it can surely be controlled or even cured by diet. But that just isn't the case for the vast majority of patients and in the meantime while we try various diets and give each dietary adjustment time to work, we can be allowing this disease to go unchecked and losing opportunities to get it under control.

I'm not telling anyone to not try a diet but I don't think it is helpful to anyone to, even by implication, misrepresent the success rate.

There are many people here on this forum who have some success with diet but also require medication to control their disease and I do not believe that is simply because they do not stick to their diet strictly enough.
 
Kitt,

A new diagnosis of Crohn's is confusing. I think it's quite a shock to be told that you have a chronic illness and that you will be dealing with this for your whole life.

You will read lots of different experiences on this forum and that really illustrates the many ways in which this disease can affects us as individuals, the variation in symptoms, the different parts of the GI tract that can be affected, the different phenotypes (stricturing, fistulizing, inflammatory) and the differences in response to treatments.

Know that you won't necessarily have the same path as anyone here but there's lots of useful information that can help inform your choices for how to treat this disease, how to talk to your doctors about it and how to cope with the affect it has.

While there is a lot of confusing and sometimes conflicting information out there about Crohn's disease, I think the best place to start is by gathering as much information about YOUR Crohn's disease. If you're not sure, ask your doctor to go over the tests that have been done and the imaging/scans and go through the results with you.

It helps to know where the disease is located in your bowel and whether they have observed any complications like strictures. Having strictures, for example, would potentially suggest that you would be better avoiding higher fibre foods and sticking to easier to digest softer foods. But, as with everything, we are all different.

Also if you have developed complications at diagnosis then that suggests more complex disease that would likely be better treated by medication than diet.

As to knowing when we flare, again , we are all different - from the symptoms we experience to the ways our doctors can measure the disease activity. Some will experience any combination of pain, fatigue nausea, frequent bowel movements, diarrhea, constipation, weight loss, mouth ulcers or extra-intestinal manifestations. Some people will have no symptoms with a flare and it can only be known by doing tests - fecal calprotectin or blood tests may show inflammatory markers. Not everyone has raised inflammatory markers with active disease though and this can certainly be another source of confusion for patients and doctors alike.

I do think it can be useful to keep a symptom diary and you could combine that with a food diary if that is a route you would like to explore.

I think it would be a good idea to ask your doctor which medication he had wanted you to be on and about the test he did (indicating a likelihood of side effects). Ask him if there is an alternative that he would suggest instead.

Best of luck
 
Hi everyone,

I want to thank each and every one of you for your advice and/or input. It means a lot to me.

Crohns08, I understand what you mean about diet. Perhaps I should have worded it differently. I am looking to set a diet for myself as in a life style change in eating. Does that sound better??? Heck, I'm terrible at explaining things. Sorry about that.


I am 49 years young and I don't think about Crohn's all the time. I kind of tried to just put it on the back burner and now realize that I should address it. I don't have bouts of diarrhea unless I eat something like ice cream or drink milk. Simple, don't eat ice cream and I have switched to Almond milk...that stuff is pretty good. I was surprised. :)

I realize that if differs from person to person, and am now realizing just HOW different it varies. I also realize how serious it can be and it breaks my heart to read some of the stories on here. It truly does.

I am not a worry wort, and I am the most opened minded person you will ever meet.

It's nice to find a place where people understand what I am going through though. I am eager to learn. And ready to listen.

I personally believe that we are what we eat but what happens when you can't eat those foods that are so healthy for you anymore? It changes things. So, yes, I think diet is terribly important.

From reading everyone's responses, I think it will be very important for me to keep a journal of the foods I eat and the results of eating them. I haven't had a salad in months, I am craving them and I am scared to eat popcorn again. I love popcorn. The only thing I can say is that if that is the worst that ever happens to me then I've got it good. So many others have it worse.

Thank you again, for helping me in starting to understand what this crohns business is all about. I truly do appreciate it.
 
Crohns08 - I just don't think that is reasonable to tell someone new to this disease. It gives the false impression that the majority of patients can control their disease though diet if only they stick to it religiously and that is unfounded.

I would say that a lot of the problem with diets is that we want and hope desperately that they will be the answer to this disease that from symptoms alone seems to be a digestive disorder. We think it makes perfect sense that a disease of our digestive system may have been caused by diet and if it wasn't caused by diet that it can surely be controlled or even cured by diet. But that just isn't the case for the vast majority of patients and in the meantime while we try various diets and give each dietary adjustment time to work, we can be allowing this disease to go unchecked and losing opportunities to get it under control.

I'm not telling anyone to not try a diet but I don't think it is helpful to anyone to, even by implication, misrepresent the success rate.

There are many people here on this forum who have some success with diet but also require medication to control their disease and I do not believe that is simply because they do not stick to their diet strictly enough.
And I think it's irresponsible to act like these diets are just a fad that don't help anyone that tries them. The disease is so different for everyone that different things work for different people and I never said diet was the cure or the only way. What I did say was that if you try a diet you have to follow it strictly before you can say it didn't work just as you would follow a prescribed medication before saying it didn't work. There are a lot of people that have years of success on Humira without issue and that's great for them. I had 3 months before I developed anaphylaxis to it and am sharing my experiences with diet for people that might be in the same boat when all of the meds are failing and have no other options.
 
Crohns08,

I do not want to argue with you but what you said is this
A lot of the problem with diets is that people cheat or they think they are doing them properly but they aren't.
I haven't said that diets are a fad and I haven't said that they don't help anyone who tries them or help to control symptoms. What I said is that for the majority of people a diet alone is not enough to fight the effects of this disease.

You said that you are
sharing my experiences with diet for people that might be in the same boat when all of the meds are failing and have no other options.
But actually in this thread you are replying to a newly diagnosed person who hasn't tried any medications that we know of.

In the case of those entirely new to the disease I think more balance and perspective is required.

If you did actually share your experience of diet in this thread (instead of making a general statement) then I'm sure that would be interesting.

My experience with diet is that I had very high hopes for it, following a course of prednisolone with significant side effects, being steroid dependent and stuck on budesonide (with major side effects) and having had a severe reaction to azathioprine. I sought out the most respected doctors in the country who had done research into diet and Crohn's (Professor John Hunter and his team at Addenbrookes). I had good success with EEN using Elemental 028 Extra in terms of decreasing the inflammatory markers in my blood, although whether I was truly in remission it is hard to say since I have Crohn's in the jejunum and ileum and most of the bowel that is affected cannot be seen with a scope. Camera pills were not available then but would have been impossible since I had strictures. I went on to a strict elimination diet but could not maintain symptomatic remission. I also tried partial enteral nutrition and that did not succeed in maintaining remission.

I had surgery and then used EEN to treat flares, partial enteral nutrition and then went on to SCD. While I had some success reducing symptoms with SCD this may have been because I had SIBO. I did relapse though and developed more strictures. I needed another surgery.

I have since tried 6mp (allergic reaction), methotrexate (no side effects) and infliximab and humira - both with moderate success and no side effects. I have required further surgery and I have 90 cm of small bowel left. I am now going to have a stem cell transplant in the hopes of avoiding a small bowel transplant (for which the survival rates at 5 years are 50%).

I think it is wonderful that some people can control their Crohn's disease through diet alone but those people are in the minority and I don't think there is any benefit to anyone to not be open about that. I do not believe that it is commonly a lack of effort, commitment, belief or understanding on the part of those Crohnies who 'fail' dietary treatments. It could well be that they have a different type of Crohn's disease (as it's now thought that there are likely more than one 'Crohn's diseases') or that the dietary treatment is being tried too late in the course of the disease.

Everyone has the right to choose their own treatment path. Even our doctors can only suggest potential treatments. We have to make the decisions. But it is better to make those decisions with as much information at hand as possible. None of us can know how our disease will progress untreated or to entirely fairly compare one treatment to the other (since we use them at different points in the course of our disease) so the studies and statistics for remission for samples of Crohn's patients are our best guide.

Whatever treatment you decide upon it's important to monitor the efficacy with periodic blood tests, fecal calprotectin and imaging and to be prepared to change treatment approaches.

And that's why I think we need to be open about the use of medication, even though we all have fears about the side effects, and we need to be prepared that we may not have success with the instinctively very tempting and much less scary idea that we can heal ourselves through diet.
 
I personally believe that we are what we eat but what happens when you can't eat those foods that are so healthy for you anymore? It changes things. So, yes, I think diet is terribly important.

From reading everyone's responses, I think it will be very important for me to keep a journal of the foods I eat and the results of eating them. I haven't had a salad in months, I am craving them and I am scared to eat popcorn again. I love popcorn. The only thing I can say is that if that is the worst that ever happens to me then I've got it good. So many others have it worse.
Is it the fibre in salad and popcorn that gives you problems? It usually is, a lot of people with Crohn's have issues with fibre, which can mean they can't eat a lot of the healthiest foods - fruit, vegetables, whole grains, nuts and seeds. This forum has a thread for those on low fibre and low residue diets: http://www.crohnsforum.com/showthread.php?t=50340

There are suggestions about how to eat healthily on a low-fibre diet throughout that thread. (Avocados are great as the basis of a salad, bananas, stewed apples and pears, tinned fruit, smooth peanut butter, well-cooked root vegetables, smooth vegetable soups and fruit juices are all good foods that are usually easy on the digestive system.)

I hope you're able to find a balanced diet that suits your digestive system. When I tried diets, I always did them 100%, never "cheated", and persevered for a very long time, and they still only made things worse. In the end I found that just eating a "normal" diet, complete with junk food in moderation, actually makes me feel best physically and mentally, though before my last surgery I did benefit a lot from keeping to a low fibre diet. Perhaps in a way diet does help me, it's just that it's a balanced Western diet rather than an alternative one.

So it's worth trying any diet that appeals to you and sounds like it makes sense. Just don't pin your hopes on it too much or persevere if it's not working (not that it sounds like you're going to, they're just mistakes I made).
 
It is definitely overwhelming! The more research you do, the more confusing it gets.

A lot of the problem is that we simply don't know as much about it as we should. When you look at the wide spectrum of symptoms and treatments, it almost seems like they've grouped a lot of similar conditions with with each other into one "disease." Hence the varied responses to certain treatments including diet.

I think one of the most important things is to keep an open line with your doctor. Hopefully they are open minded and willing to try new therapies that might not fit the standard mold if conventional therapies are not effective. I've had a few different GI doctors, and some are simply unwilling to try anything other than immunosuppression.

It's not easy to be patient, but the odds are that you're going to have to try many different things to improve your symptoms. Everyone is different.

Good luck, hope you find something that works.
 
Hi everyone,

I really don't like to see people fight over anything. We all have different views and I am taking it all in. It would be a sad day, indeed, if we stop learning from one another.

I am learning from each and every one of you and I not only respect your input but appreciate it. No need to turn mole hills into mountains...life is far to short for that stuff.

I am enjoying the forum and I am so happy to have gotten so many responses. Such caring people here.

I just want to feel better, get back to walking and going to the gym and feel good.

UnXmas, you asked me about the salad and popcorn. This is where I need help. I just have it in my head that those things could cause blockage somehow.

When I was diagnosed, I was just told I had Crohns...nothing else. I don't know what kind or anything. I just know I never want to go through that pain again in my life so it makes me afraid of certain things. What is this damage it causes? How can I avoid that?

These are the questions that have brought me here. I need help understanding so I can set a course of action for myself. I am SO NOT against medicine, with that being said, I also believe that our bodies have a remarkable way of taking care of themselves through what we eat. I know that sounds crazy and I'm certainly not here to offend anyone.

Folks, do what is best for you, whether it be diet, medication, and so on. I'm not here to judge anyone....I am taking it all in and soaking up what I want and leaving the rest behind. You have to do what is best for you.

Crohns08...when I read your first message, I thought you were correct. People all over the world go on diets and most do not stick to them and then wonder why they don't work. I would like to start with a version of the Paleo diet but, take away and add things as I go, depending on how my body reacts to it. Thus, I am looking for a life style change in eating rather then a diet itself...does that make sense?

I am at a loss in looking over the forum...there are so many terms I need to look up and learn....yep, I am a blonde too, so that doesn't help.....I'm just playing around so please don't gang up on me for the blonde comment. :) :)


Thank you again to everyone....you are sweet.
 
I don't like to argue either, it just bugs me when I am quoted out of context and what I said was (and still is) misrepresented by one previous poster - who are more than welcome to pm me if they wish, I just don't want to dominate someone else's thread.

That being said, I understand what you mean kitt, and you have to do what is best for you. In terms of pain and food, seeds, skins, and nuts are the main aggravants. Fiber as well which is likely why you experienced pain with the salad. Most crohnies don't tend to do well with popcorn or corn in general, however there are always exceptions to the rule. You may want to look at a low residue diet and pull some things from that. It has been what I am eating through my pregnancy since my little one needs more than just what the SCD would allow. After I deliver I am going back hardcore to my diet. :)
 

DustyKat

Super Moderator
I'm not sure what that test would be. I'll tag my little penguin and Dusty as they may know that test could be.
Sorry for that late reply! :redface:

From reading your responses kitt the blood test would be the one that Clash has already suggested, TPMT (Thiopurine Methyltransferase). This is an enzyme that is located in the liver that is needed to break down the Thiopurine drugs (Azathioprine/6MP). A lack of this enzyme is a pointer that you may suffer with the more serious side effects of these drugs. The gene part comes in as the enzyme is encoded on the TPMT gene.

Dusty. xxx
 
I totally agree it is difficult. But you will start from scratch. At first what I did was avoid all the obvious foods sugar, carbonated drinks, alcohol, raw fruit and raw veggies cuz I was told to. But then I let my temptation get the best of me. Now I know that a can pop doesnt bother me, i can have steamed veggies or half cooked(stir fry), i can have 2 maybe 3 pieces of fried chicken as long as its not super greasy, just a handleful of chips and popcorn, about 4 vodka drinks as long as I eat wont bother me.
Just try everything and monitor it. Keep a chart and record if it will help. If you cant have veggies at all you should invest in a good juicer. One day it will become second nature to decide what you can and cant have, just take the time to learn your body. good luck!
 
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