My new husband is trying to figure out Crohn's and wondred if there is any "flowchart"????

Bless his heart ... I'm struggling with my first big flare since we got married a year ago ... and he is trying to "fix" me ... he wants to help me and sees that I don't always make the best decisions. Then, sometimes, I feel like he is "hovering" too much and then we get in microfights ... all while I'm sick and feverish.

So, he finally said, "Why dont' we create a flow chart of your symptoms and see what works and doesn't..."

I said, "that would work, honey, if Crohn's was as rational as you are ...."

Another fight ensued of course ... :)

We are making dinner ... lite for me of course.  But laughing about it.

Anyone else have experience from which they can share? Could use some help on the role of the spouse who is not sick ...

Oh been there done that. My fiance and I seem to go through cycles of he wants to help so much and make me better to little nit picky fights because we start to drive each other nuts over it. I know it is hard for him because he is a problem solver/fixer. And he has yet to fix my colon :)

The things I have found that help the most are me trying to be patient because I am the one that usually gets frustrated first if he is over helping or hovering and I feel not well. I just remember what he is doing is out of love! Explaining what I can to him, all blood tests ect that come from the doctor I include him in and that seems to help and make him feel more active in my care. And laugh. Sometimes it just helps to laugh at each other because this disease makes no sense and a lot of the times the things we are both doing don't either!

This last scope they changed my diagnosis from Crohn's to UC after 13 years. That sent him into overdrive. He needed to know how this changed things, what was different, and how it affected me. He even went digging in boxes to get his old pathology book out from school to compare the two. He got the book back out when my biopsy results came in the mail!

Do either of you have an Iphone or Itouch? There is a GI Monitor app on there that let you track things like your pain for the day, blood for the day, number of times you go a day ect and it charts it. It used to be free on Itunes, not sure if it still is.

It would be a pretty messes flow chart. I am married to an engineer, and I am a former engineer. We could do a flow chart in our sleep, but there are just so many things that could throw it out of whack. I finally found a food that caused no problem for me, I was thrilled. Sushi. I have been able to eat fish and rice since my last surgery and that is about all, so sushi shouldn't have been a surprise. I have been picking at it every day for the last week or so. Two or three pieces every few hours. No today, I get hit full on with pain and nausea. How do I put that on a flow chart? do I eat it again and hope for a different out come? I can never come up with a rhyme or reason for the food to bother me. I just wish that when I find one that is a really safe food it would stay that way!

Heya,

16 years same woman with me, 11 years of crohns, 11 years of learning to adapt to each other in different ways every day.

Love gets us through.

Walks are taken, often alone. Sometimes I gotto sleep early when angry or try and nap or whatever, an imposed downtime so I don't self-implode during an argument which means so little in the larger sceme of things.

She may never change, always wanteing to fix me, always wanting to try new things, books, holistic, check for more diseases, on and on. I may get frustrated, but I can not change her and when I am not being stupid, I realize there is someone here who loves me and wants to help me. I should embrace that and help her. I try, and that is all you can do, just try your best, you can ask no more.

There are days this bothers me, and there are days I can't belkieve how lucky I am she continues to work on me in relation to crohns, while working full-time at her job.

Over all, despite all my petty little buttons which can be pushed to frustrate or anger me, I can honestly say, I love her forever.

I will say this about the flowchart idea, a journal is an ecellent way to keep track of everything. I actually use this forum as a journal of sorts a lot to look up things from my past. I am surprised by some posts I made years ago, some said I felt better, I don't even remember that.

Point is, If I had kept a journal in a more formatted type system, there is no telling what it would have taught me or not taught me over the years. So I don't think keeping any kind of records is a bad thing.

Like most, I learned and continue learning every day, by what I eat, when I eat, excercise, sunlight, the liquids you drink, vitamins, medications, other supplements etc. Every one of these has so many varities to look into.

For the most part, over the years, I have found a fairly decent system for eating, which mostly involves, no fatty/sugary substances. (this is by no means the only foods to avoid) For me, the diet of foods I can eat and can't eat is very important, but more important seems to be the amounts I eat it in and the amount of time before I eat again.

Eat like a squirrle I guess should be my thing, a nut in the morning and then keep one stored away in my cheek for later. (yeah that makes sense eh?)

Anyway, my two cents on relationships, food and record keeping

Thanks

Jon

LOL Jonny Five!!!!

I've had CD (active the entire) 20 yrs now with no full remission and even at that it's still unpredictable. I have it somewhat under control (only with being able to produce firm BM's and less frequency than ever before) but even at that it still rules my life. Unfortunately it's the nature of the beast itself and although charting it sounds like a good idea, I think "the lines" would be all over the place anyways and it wouldn't do much good to figure a whole lot out.

Many keep food journals that help them figure out what foods/drinks to avoid which can be helpful but doesn't guarantee that their CD won't start "reacting" to what were once "safe foods".

Good Luck (and hang on to your hubby, sounds like a keeper with his determination to "fix" you!

Johnny Five,
I'm at work and not feeling well. Your flow chart cracked me up!!!! Thanks for a break from the misery:)

Hmmm ... a lot to take in here and learn.

GI Monitor App ... using Healingwell as a journal as sorts (and have looked at past posts myself and am amazed) ... do wonder how foods which didn't bother me before can now (Love sushi, which my town of 100 had order-in!) ... and that, yes, we are learning together as a couple and that as Blue Velvyt said, Love gets us through. My husband and I read your posts ... I cried thorugh them ... they mean more than you know .. please more!

I feel sometimes when we are going through this ... we are learning in very tight quarters. Does that make sense? But maybe we are learning more about our essential selves too. And maybe that is a greater gift.

We LOVED the flow chart. Not kidding ... actually for real. It made us laugh, yes ... but my husband liked it in that it helped him with something "to do" ... I liked it because it helped him focus on my feelings and thoughts ... my emotions. The thing I struggle with when I'm feeling really sick is that he seems to focus on the disease more than me ... does that make sense?

And then I feel so bad about myself in that he is trying to help me and then I'm pouting thinking that he doesn't CARE about me ... how pittiful is THAT? Wow ... what a cycle this is. Get me off this hamster wheel please ... help me ... help me ;) ....

But I guess maybe I'm entitled ... my joints are sore, even with Flagly and 40mg prednisone and a course of IV same, my low grade fever won't break and I can't poo ... can't a girl just poo? ;)