Brother has Crohns

[BroCrohns]

Hi all.

I have registered on behalf of my mother and myself, as we are very worried about my brother who was diagnosed with crohns about 8 years ago. From some of the reading I have done with people suffering terribly and having surgery, he would seem to have a "mild" version (so far) and we want to prevent his condition from getting worse.

We don't think he is eating properly, and this has caused a really bad episode so that he has been very ill for 2 weeks and barely able to eat at all. He had a similar episode about 4 years ago.

As he is a grown man and married, it is difficult for us to approach him and try to help, but I am hoping that I will be able to get a few more ideas and a bit of support from other sufferers in here. I have done a LOT of googling so I am learning plenty which we just need to reaffirm with my brother. He seems to have slipped back into complacency with his diet, and that is why he is suffering now!

He is 54 years old and as far as I am aware, is only prescribed Sulfasalazine. Thank you for listening.

 

[Earnellzwifey]

Hi brocrohns! Welcome to the forum. I am sorry to hear that your brother is flaring right now. I would like to commend you for being so concerned for him and doing all this research. This is a great group and there is a wealth of information available here.
Has your brother been to the dr since the flare started? If not you might want to mention the unrepairable damage he could be doing to himself if he does not go and get checked out. See if he will do it for you or his wife and kids if he does not want to go.
I hope you the best and please keep us updated.

 

[Hobbes650]

Hi all.

I have registered on behalf of my mother and myself, as we are very worried about my brother who was diagnosed with crohns about 8 years ago. From some of the reading I have done with people suffering terribly and having surgery, he would seem to have a "mild" version (so far) and we want to prevent his condition from getting worse.

We don't think he is eating properly, and this has caused a really bad episode so that he has been very ill for 2 weeks and barely able to eat at all. He had a similar episode about 4 years ago.

As he is a grown man and married, it is difficult for us to approach him and try to help, but I am hoping that I will be able to get a few more ideas and a bit of support from other sufferers in here. I have done a LOT of googling so I am learning plenty which we just need to reaffirm with my brother. He seems to have slipped back into complacency with his diet, and that is why he is suffering now!

He is 54 years old and as far as I am aware, is only prescribed Sulfasalazine. Thank you for listening.

Hey Bro, welcome! Don't stress out over the diet stuff because diet does not cause flareups. Your brother's changes in diet are because he's not feeling well, not the other way around. People with IBD figure out what foods irritate them, and even then it's not a 100% rule as the "bad" foods aren't always bad, so to speak. When I flared up bad anything I ate hurt, but when I'm not in a flare I can eat normally.

Anytime symptoms get worse a doctor should be called. Medication like Prednisone can be added for a short term. There are other meds used for maintenance besides sulfa drugs, and your brother may already be taking one. But whenever a flare up happens, definitely want to call the doctor so it can be extinguished. But your brother needs to be the judge of that. If the flare up is pretty strong your brother will be in lots of pain and it doesn't matter how tough your brother is, he'll definitely be calling doc at that point. But if it's not too bad, then moving to a softer diet would help his symptoms. Staying hydrated would also help.

 

[BroCrohns]

Thank you for the warm welcome and comments. Though I am little confused - shouldn't my brother be very cautious about eating certain food? I know that diet is only one factor with crohns, but I thought that eating the "bad" foods caused symptoms to flare up.

He will be seeing a doctor tomorrow and having blood tests - we hope to check his vitamin levels, iron etc. He has lost a significant amount of weight in the last 2 weeks.

Again, many thanks for your responses.

 

[Hobbes650]

Thank you for the warm welcome and comments. Though I am little confused - shouldn't my brother be very cautious about eating certain food? I know that diet is only one factor with crohns, but I thought that eating the "bad" foods caused symptoms to flare up.

He will be seeing a doctor tomorrow and having blood tests - we hope to check his vitamin levels, iron etc. He has lost a significant amount of weight in the last 2 weeks.

Again, many thanks for your responses.

Sorry I confused you, but "causing" the symptoms to flare up is what confused me. Flare ups (specifically, the amount of diseased tissue) are not caused by diet, but yes you can certainly feel worse by eating wrong foods, and that's what you meant I'm sure. Some people get like that even when they have a colonoscopy. With the weight loss and worse diet, it certainly sounds like a flare up is starting. Hopefully a little change in medication is all that's needed this time. Keeping my fingers crossed for you all.

 

[Earnellzwifey]

I'm glad that he is going in to see the dr. Certain foods can make you feel worse. For ex. Popcorn, raw veggies, and beans. This can be different for different people but they usually cause some type of upset. Please keep us updated on how he is doing.

 

[BroCrohns]

Thank you again wifey. We are worried recently because mum found a lot of "health" food bars in his kitchen which he was taking to work with him for snacks - all full of dried fruit, nuts, honey and other sugars - aaaaaargh! Apparently he's been eating those lately. He also drinks quite a lot of beer (we are Australian!!!!) which is probably also a no-no for his crohns.

PS I have pasted a copy of your cute "poetry" line to mum for a giggle. I've called it "poo-etry". Cheers.

 

[Earnellzwifey]

I luv the title poo-etry I will have to remember that one. Those snake bars might be high in fiber also. That can cause some issues too. Don't worry about the drinking . I like my vodka also.

 

[mnsun]

I certainly believe, after 7 years without meds (save for LDN this past year), that foods affect Crohn's directly. I tend to side with the stealth mycoplasma/mycobacteria/MAP/pathogen theory of crohn's causation. Therefore, some foods/additives feed bad bacteria and provide an environment conducive to such pathogens. Though some people may say otherwise, I know in my case food is a definite factor.

On the snack bar situation, I think sugar is bad and, yes, in the case of dried foods (depleted of all enzymes which aid complete digestion), I do think the fiber is bad.

Here's my canned response concerning foods/supplements:

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.

 

[Hobbes650]

I certainly believe, after 7 years without meds (save for LDN this past year), that foods affect Crohn's directly. I tend to side with the stealth mycoplasma/mycobacteria/MAP/pathogen theory of crohn's causation. Therefore, some foods/additives feed bad bacteria and provide an environment conducive to such pathogens. Though some people may say otherwise, I know in my case food is a definite factor.

On the snack bar situation, I think sugar is bad and, yes, in the case of dried foods (depleted of all enzymes which aid complete digestion), I do think the fiber is bad.

Here's my canned response concerning foods/supplements:

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.

When it comes to food, there seems to be two distinct opinions with regards to IBD. One side is like that above, which believes food choices will cause the disease to flare up, or go into remission. Thus, this side has countless advice as to what foods to eat and what not to eat. You'll see tons of different diets that claim to help IBD patients, and countless people who claim to have "cured" their disease through diet- all of these people are included in this camp.

The other major opinion is that food choices are there a consequence of the disease and not the other way around. That is, depending on how one feels some foods are tolerable and others are not. The key is depending on how one feels. If your gut is not feeling so hot and you have pain after you eat, you should NOT eat ruffage, and should probably eat softer more bland foods as that will be LESS likely to cause you pain. This is completely the opposite viewpoint as stated in the above quote, specifically: "You have to learn to like good fats virgin coconut oil, avocados, walnuts, fish etc. ". In my opinion, recommending someone with IBD "learn to like WALNUTS" is like asking the pyromaniac to learn to like gasoline. If you're not feeling well, nuts are exactly what you want to avoid as they will certainly make the pain worse.

As you can tell from my rant, I am in that second camp when it comes to food choices. The first camp reminds me of my mother who, when I was very sick at 18, tried to control my diet very strictly and when I got worse felt I must have been "cheating" by eating foods I shouldn't have. Completely ridiculous point of view.

Yes, there are certain things that can help infllammation and eating them may help. But it may not either, it's not real clear. For example, I take tumeric and boswelia capsules. Not sure if that's helping, but it may. It doesn't hurt, so "why not" is how I look at it. That's fine. But don't fall into any belief that food choices are critical to disease management. IBD is a cruel disease that will do whatever it feels like. Food choices will help us along the way, but the best tools for disease management are the medications and surgery. Eat what you can tolerate, stay hydrated and perhaps supplement with vitamins and other minerals, that's pretthy much all you can do. Just my $0.02.

Oh, and I had 25 years of no meds after surgery. I do NOT attribute that to good eating, positive lifestyle changes, or somehow being more in harmony with my mind/body/spirit connection, or whatever you call it. I attribute it all to dumb luck. Seriously. I was diagnosed with UC in 1986 and was "cured" of that through surgery in 1987, but in May of 2012 I was diagnosed with Crohns. Because of that, it is pretty clear my disease was/is Crohns Colitis all along. But without a colon anymore, I will just call it Crohns.

 

[xxjemmamxx]

I think you have to trust your brother to manage his own diet. He will know if and what foods might not be good for him and I doubt very much that he would choose to eat foods that he knows will make him feel bad afterwards. Everyone on here is different; some people eat anything and some people choose to restrict their diets. I would say though that I don't think your brother has brought this flare up upon himself by eating certain foods, it's just one of those things that happens IMO.

I think it's brilliant that your so supportive of your brother and want to learn more about the disease. I also think though, that you have to trust your brother to be 'the expert' of his own disease. He will know best what works and doesn't work for him

 

[BroCrohns]

Thank you all for the very interesting and thought-provoking posts, which I have been pasting through on emails to my mum who isn't "savvy" with puter and doesn't directly read blogs.

So far it's a matter of being "caught between 2 camps" with regard to the issue of diet affecting Crohns, and we are playing it safe and cautious with our own opinions. With my limited amount of research so far, and also uneducated opinion, I do believe that bland and soothing foods may give some relief. Sugars, and also foods which the body converts to sugar, contribute to the bad bacteria level.

Since his diagnosis my brother has gone the "meat and potatoes" only route, avoiding fruit completely, but supplemented by beer on weekends. And for this reason I think his general health has slowly deteriorated, because vital vitamins, minerals and enzymes are depleting. His recent weight loss and bad color (yellow) show something needs to be fixed!!!

 

[Hobbes650]

Thank you all for the very interesting and thought-provoking posts, which I have been pasting through on emails to my mum who isn't "savvy" with puter and doesn't directly read blogs.

So far it's a matter of being "caught between 2 camps" with regard to the issue of diet affecting Crohns, and we are playing it safe and cautious with our own opinions. With my limited amount of research so far, and also uneducated opinion, I do believe that bland and soothing foods may give some relief. Sugars, and also foods which the body converts to sugar, contribute to the bad bacteria level.

Since his diagnosis my brother has gone the "meat and potatoes" only route, avoiding fruit completely, but supplemented by beer on weekends. And for this reason I think his general health has slowly deteriorated, because vital vitamins, minerals and enzymes are depleting. His recent weight loss and bad color (yellow) show something needs to be fixed!!!

Hi Bro, When I'm having trouble I rely on protein shakes, but I mix it with water instead of milk. Pureed vegetables, like baby food, are a great way to get vitamins and they don't taste too bad. Meat was fine with me, just in smaller portions. Potatoes too, but I always removed the skin. Beer was hit and miss for me. Sometimes the darker beer would give me lots of gas and I'd burp for hours. Most people seem to also vitamin supplements and fish oil. Having vitamin levels checked by your doctor is also a suggestion that many people will make- I believe we're prone to low levels of vitamins D and B, but not sure of the specifics. It can take a bit of work, but there are lots of ways to still eat healthy when sick. Good luck!

 

[BroCrohns]

Hi Hobbes. I'm going to be trying for taste, a shake made with rice milk, a very ripe banana, and a raw egg. I'm sure it will be tasty, and will see if my bro wants to give one a try!

Sorry if we seem to be a bit over-the-top with our concern, but his wife is very self-centred and won't even cook for him! He has to cook for himself after getting home from a hard days work, usually a pan fried piece of meat and some potatoes. Not ideal!

 

[Hobbes650]

Hi Hobbes. I'm going to be trying for taste, a shake made with rice milk, a very ripe banana, and a raw egg. I'm sure it will be tasty, and will see if my bro wants to give one a try!

Sorry if we seem to be a bit over-the-top with our concern, but his wife is very self-centred and won't even cook for him! He has to cook for himself after getting home from a hard days work, usually a pan fried piece of meat and some potatoes. Not ideal!

No such thing as being "over the top with concern". That shake should taste fine. Throw in a little chocolate syrup and you've got the perfect dessert. :thumleft: