What's the best way to help?

[watl1]

Hi all

I'm new here and wondered if anyone could give me some advice (apologies, this is a bit long!)

I've been with my partner (who is 28) for 6 years and 5 years ago he was diagnosed with Crohn's and subsequently had two operations to remove an abscess. He smokes, isn't particularly active and eats a low fibre diet with lots of sugar and processed food. He did see a dietician about 4 years ago who gave him a list of what to eat and avoid but he generally doesn't take any notice of it, unless he has one of his attacks, when he might avoid yeast and pork, for example.

He is always tired, constantly has diarrhoea and gets a stomach ache at least every other day. However, because his attacks don't seem to come on after he eats traditionally bad foods like sweets and cakes, etc., he doesn't think they are doing him any harm.

Anyway, 3 weeks ago, he was admitted to hospital with a blocked colon and had an emergency laparotomy to remove the diseased part. He's still in hospital and is extremely fed up and still in a lot of pain. The timing was absolutely dreadful as we were due to emigrate to China on 9th June and were all set! He's not eating properly in hospital either because he says the food makes him feel sick, so he's gone down to 6 1/2 stone.

My problem is that I'm extremely concerned about his welfare and whilst he is talking about stopping smoking when he gets out, I can't see him sticking to a proper diet. I did mention it to him about a week ago, but he ended up getting really wound up and said that I couldn't tell him what to eat. His family are also concerned about him but don't seem to back me up when it comes to food. I appreciate it must be really hard for him, but want him to look after himself more and take our future seriously.

It's very disappointing to now not be able to go away after so much planning. I want us to stay together but I don't want him to let his bad habits ruin the relationship, and I don't want to miss out on opportunities because he isn't looking after himself. Part of me feels really angry at him and the other part feels really guilty for being so selfish.

I know that I can't force him to eat certain things or to change his lifestyle, but does anyone have any suggestions as to the best way to support him and help him adapt to a new diet? I think he will be out of the hospital in a few days, but because he'll still have pain, I know he's already going to be really ratty without me lecturing him on nutrition!

Thanks in advance!

Louise

 

[kello82]

hey louise
well first of all, i just want to say how great it is that you are doing your best to help him and find the best ways to support him. you are doing a great thing by asking these questions and investing your effort, and even though he may be "annoyed" or something at the inquiries concerning his diet and all, im sure (i hope!) he really appreciates the level of care your showing!

well, i have never done a great job myself at eating healthy. im really thin, so i kind of just eat whatever appeals which tends not to be the healthy foods lol!
a problem that we face with crohns is that many of the foods that are normally considered good for you, can be really hard on the tummy and digestion. you know, fruits and veggies, whole grains, nuts, etc...are all great nutritionally, but wreak havoc on an inflmaed system! these foods dont break down well and little undigested pieces can get stuck in damaged intestinal walls, be painful to pass, or even clump together and form an obstruction depending on the width of the intestines.
so the foods that many of us (myself included) gravitate to when not feeling well ends up being: white pastas, mashed potato, rice, soft soups, chicken...foods like that. and those foods are all on the not so healthy list!
it also comes down to comfort. you know, when youre sick with the stomach flu, what appeals to you? a salad with grilled chicken on it or some warm creamy macaroni and cheese?
we tend to go for the comfort foods when not feeling good, and those are usually not the healthy foods.
an overgrowth of yeast is somewhat common in crohns, and ive had it myself. its called candida and you can notice it if he has discoloration on his tounge....like whitish or a light color. not pink and uniform like normal. anyways, the yeast can cause cravings for sugar because thats what it feeds off of, so that may contrinbute to why he gravitates toward sweets as well.
some things you can do to boost his nutrition level are:
theres some good nutritional supplements out there: boost, ensure, carnaton instant breakfast, etc. granted, these have corn syrup and stuff in them, but there is also a lot of protein, minerals and vitamins and other good for you stuff.
also something ive toyed with a bit is juicing! that way you get all the vitamins and antioxidants and things from the fresh fruits and veggies without the insoluble fiber that kills the tummy. there are TONS of books about juicing out there, lots of juicers to choose from. theres a thread about it too called "juicer." haha creative yeah? lol, but you could probably find lots of recipies and info just by googling it too.
a couple times ive made some with spinach, pineapple, carrots, apple, and sprouts and it tastes pretty darn good! lots of good stuff in there for your body.

allright, if he decides to go on a DIet diet, then it will help a lot if you do it with him, or at least not eat the bad foods in front of him! better yet, dont even keep them in the house. i did the SCD for a couple months which is very restrictive and my family ate normally and it was soooo hard to have the box of oreos in the closet and resisit them! i ended up cheating. a lot. and also feeling very left out when they had a certain favorite meal and i couldnt enjoy.
im not saying sacrifice all for him, cause hes the one who has to take care of himself, not you! you should still be able to enjoy your sweets just be aware of how youd feel if roles were reversed you know?

lastly, if you really want to work at this and do a lot on your end, maybe get in the kitchen and cook some things that are really healthy and just make him try! hey you might find a handful of meals that are healthy AND become new favorites that he actually wants to eat. i know thats a lot of work and of course its not your responsibility to figure it out. but, if you want to and are able to put in that much effort, it might help a bit.

whew! well i hope that helped a bit. once again, you are being a great partner by trying to help! thank you, people like you make a big difference when support is needed
any more questions about diet or crohns in general, ask away! everyone here would love to help, theyre a great group of people

 

[danman]

Hey Kello, that was good advise. You've covered most of what I wanted to say.

Louise,
It's hard to explain how we feel when we have a flareup.
I'm the same as Kello and a lot of others on this site, I tend to go for comfort foods. You've got to remember that we have a love/hate relationship with food.

A lot of us get diagnosed with anorexia alongside Crohns.
This is simply because our brain tells us that if we eat, we get pain... so don't eat.

Then we get cravings, through lack of nourishment.
I was told by a dietitian once to eat whatever I can during Flareups, simply to keep myself nourished. (She was a girlfriend at the time, so perhaps she was telling me what I wanted to hear )

I tend to eat little and often, I snack all day during a flareup. That way I don't starve myself.
It's so hard to explain to laymen/women how our relationship with food works. Or doesn't work.
Don't be too hard on him. As Kello earlier, traditional foods that are supposed to be beneficial, are actually the opposite for us.

A very good example she has given, is fibre. You even mentioned in your post the he doesn't eat a high fibre diet.

......eats a low fibre diet with......

This isn't helpful to a lot of us.
We are sometimes advised not to eat too much fibre to avoid blockages.
This is a good example of a food type most people associate with a healthy diet for bowels.

My wife knows that my diet is not ideal for a healthy lifestyle, but she also recognises that my body tells me what I need. So in general, she leaves me to it.

It's not easy living with a Crohnie, he's lucky you care enough to seek us out.
I hope you'll find enough information here to understand our predicament.

 

[Colt]

To be honest, and to put it simply, he's going to have crohn's disease and he's going to be sick regardless of what he eats. The reason we tend to get upset when people start trying to police our diets and activities is because it comes across (and in a lot of cases rightly so) as someone blaming us for everything and asserting themselves as the victim and us as the perpetrator. You really have to be on our side of the arrangement to understand just how frustrating that is when we already feel completely helpless and at the mercy of the disease.

To be suffering and then to have someone tell you that you're a bad person for suffering hurts on such a deep level it's sometimes unforgivable. Especially for those of us who hide that suffering with every bit of our will only to reach a level that we fail and no matter what we just can't take it anymore.

It's not like diabetics who refuse to take insulin and eat 6 candy bars and drink a 2 liter of soda in a day. We will be sick no matter what. The food does not cause the problem. Even if we eat absolutely nothing the inflammation, ulcers, fistulas and such will still be there.

Think of it like rubbing sand on your arm. If your skin is normal and healthy it's nothing but a nice exfoliator. Now, if you have an open sore on your arm and you rub it with sand it's going to hurt like hell. When that irritant is something so basic as food (and for most of us pretty much any food hurts us and it's only a matter of how badly) it imparts a feeling of utter futility.

Imagine if every time you ate something, someone unstoppably powerful was waiting to knee you in the gut. No matter what you'll never be able to stop them, and you're starving; literally. Would you not break down crying with that piece of food in your hand knowing that you are initiating every single beating you receive yet you have no choice? If that ******* had to run off to the loo for a minute and left you alone would you not try to gobble up every morsel you could before he returned?

Hell is often depicted as people being tortured in terribly ironic ways like forcing a glutton to eat until their stomach bursts over and over again for all of eternity. That hell pretty well describes crohn's disease, only we didn't do anything to deserve it.

Yesterday my wife chastised me for being sick. I get up at 3:30 AM, it was 5PM, and all I'd eaten all day was some yogurt so I was starving and I was getting weak and dizzy. We went to Lowes to look at carpet and I gave in and got some food at the chinese place next to it in the strip mall. I felt horrible about 5 minutes after I stopped eating. I was absolutely miserable in terrible pain without access to my darvocet or anything. I sucked it in and I carried on as normally as absolutely possible.

She decided I wasn't paying enough attention and told me that if I was going to be sick I should just tell her so we can stop wasting her time and stay home. I got angry and snapped at her for it, but really I just felt like crying. It's so unbelievably frustrating not just to suffer, not just to have everything you do complicated and obstructed by this terrible disease, not just to tough it all out at extreme physical and emotional cost, but then to have someone tell you that it makes you a bad person and a burden is unbearable. No matter how extreme the disease makes us hurt, it never approaches that level of pain.

 

[bethyd78]

best way to help

Diet and Crohn's to me is so hard. You want to eat regular foods so bad but every one is telling you what to eat. Sometimes you have no apetite at all. So sometimes its better to eat anything you can when you can eat. It is so hard
Bethy

 

[kello82]

wow colt, that was really really good.

i actually saved that post, i hope you dont mind. when im trying to explain to people both the physical and emotional pain of it, i think itll be really helpful.
esp. the part about having someone tell you youre a bad person for suffering and how deeply it hurts. its true. is the base of all my anger at ex bf. i just never realized it before, just couldnt figure out why i cant let it go. someone says they love you, then they kick you when youre already at rock bottom. forgiveable? not so easily.
and the sand on the arm was a really good analogy too.
my dad is always shoving food down my throat and doesnt understand why i cant eat, he just doesnt get it. but if everytime he ate he got kicked in the stomach ill bet he would think twice too.

 

[MacJr]

I tend to eat the "healthy" foods...get sick...and then have some of my comfort foods. Only to get sick again. haha.

 

[Meltric]

I definitely agree with kello's advice, try cooking for him! Start researching a lot about what foods are generally considered safe for chronies then gather a whole bunch of recipes and try them out. I'm sure if you cook something fantastic and put it in front of him he'll have a very difficult time saying no
Personally, I am a Rachael Ray FANATIC and she loves to cook healthy alternatives (like using ground turkey instead of ground beef) so you really can't go wrong! and you really don't have to be a skilled chef to cook her meals, some can be done in 15-30 mins!
It's really important not to lecture him, but instead to make it a very natural change to a healthier diet and lifestyle. my boyfriend will always subtly change his diet and do cute things that are not too obvious, but much appreciated. and too cute hehe
good luck!