Intro: Concerned loved one of a Crohn's sufferer

[ercamus]

Hi folks,

My husband has been diagnosed with Crohn's for about 3 1/2 years - evidently, from what I remember him telling me, his outward symptoms at first didn't match with the severity of his condition internally. For a while he was doing pretty well and on some prescription meds that helped to keep the condition relatively under control.

During the time he was on meds, he started to suffer from frequent severe headaches/migraines (anyone else experience this?) and there was/is some concern that the meds he was on were interacting poorly and at least contributing to the headaches. So then there were two whammys.

With all the hubbub of the health insurance legislation and who needs to extend coverage to young adults under certain circumstances and whatnot, my husband ended up being uninsured for about a year now - which means no prescription meds - but still dreadful headaches, extreme reluctance to seek medical attention (even if he agrees with me that he needs it) because we can't afford it (we were engaged and in grad school, now married for a month and a half and starting new jobs with paychecks and coverage coming in September), and he's had three REALLY bad flare-ups since we've gotten married - we're talking flares that leave him on the bed or couch for three days, with a fever that ebbs and flows, and can barely stomach anything that's not liquid - and sometimes not even that. As a matter of fact, he's in bed now due to a flare up (day 2), and I realized that I really needed some people to talk to for comfort, support, and even advice.

I'm certainly scared about his disease having worsened over the past year and still feeling unable to do anything about it. I also can't help feel frustrated by the disease myself because we're both tip-toeing around his health and are always on alert at the slightest discomfort. Which, and this sounds so selfish, ends up making me feel just a bit neglected because it seems like so much of the care and concern flows one direction our of necessity. I love him and would do anything for him, and I'm here for him and wouldn't dream of not doing whatever is possible to help him feel more comfortable - but I need a safety net too.

I'm hoping that this forum will give me a chance to discuss Crohn's, our situation and struggle with the disease, and lend support for others - all in a way that will be constructive for me and let me care for my husband without turning sour.

 

[KWalker]

Sorry to hear about that. As much as it sucks, we all have, and probably still go through what he's going through and he's very lucky to have somebody like you who's there to help him. What I find for me, is the main factor is stress. I work at a really ****** job where I get treated like dirt. I think that it really does make an impact on crohn's. Does he talk about stress a lot? What about foods? Do you guys notice a difference after he eats certain foods?

In my case, having not many medicines working for me, and currently not being on any medicine, I can only think of the positive side of it. In his case, only one more day of feeling like that. I know its not right, but I've just gotten used to it. Unless of course its becoming very frequent. I only get pretty bad, I'd say 1-2 times a year MAX.

I try to eat white rice, and baked chicken when I'm feeling like that. Its a nice bland meal, but still gives the nutrients you need.

 

[ercamus]

Thanks for the input and support! He certainly does get stressed, and he often feels things deeply/reacts strongly. We've discussed to some degree keeping a food diary and speaking to someone about helping with stress management/borderline depression, but unfortunately he hasn't really put these "probably good ideas" into practice - which I don't entirely understand, but try not to nag...

 

[KWalker]

Its only natural to be concerned. Were guys, you're not supposed to understand us lol. I myself have been keeping a food log, for different reasons than checking to see what I can and can't eat, but I also know if I do have a flare up, ill be able to look back at the date and see what I ate. It takes approx 5 mins a day to fill out my page, and often I feel too lazy to do it, but I know it will benefit me.

I do think stress/anger (although I feel its a cause of crohn's) I also feel its a reaction to crohn's. My mom took me to counselling when I was young because said no matter how fun something was I did, I had that way about it as if I hated everybody. There was really no reason to it either.

I often wonder if I should go see a doctor for some sort of anger medication. It seems like the smallest things can ruin my day. I'm just like your husband though in the whole "ill do it tomorrow" lol

 

[ercamus]

It's always nice to fall back on "it's a guy thing!" ;-) I agree that it's a vicious cycle between stress/anger being both a cause and an effect of the disease. Sucks. I'm just beyond ready for us to be able to afford decent health care so that we can get him an entire work up to see where he's at and not just play a guessing game.

 

[KWalker]

Sadly, I personally think it will always be a guessing game. I said in another thread all of the drugs I have been "tested" on and I really do think, after so many years of doctors putting different drugs into your body, it gets messed up even more than it already is. They tried everything on me, and when it didn't work, they would move onto the next thing.

Somebody needs to come out with a natural diet that can take the place of all these dangerous medications. I'm only 21, and I feel like for a big part of my life I was used as a guinea pig for the hospitals to test medicine on me.

 

[Jennjenn]

Hi welcome

You have come to the right place for comfort, support, and helpful information.
This is a frustrating condition to deal with. Whether you are the one with crohns or in your case a loved one taking care of someone who has it, this can be difficult at times. I am glad you found the forum.

 

[amssgirl]

Hi ercamus,
Welcome to the club, I know its frustrating and hard at times to watch him suffer so much, and I commend you for being so strong and coming here to find support on how to help him.

My bf is going through pretty bad flareups right now, and the slightest thing wrong aggravate his gut. I agree with KWalker, keeping a food diet or a list of "no-no" foods imo would be a great start. I've found for us so far he is okay with easy to digest foods. Fast food, white pasta/grains, and low fibre foods (i.e. no veggies). Sounds so counter intuitive, (at least it does to me, when a healthy diet usually means high fibre foods), but so far it seems to be working.

All the best!

 

[Astra]

Hiya ercamus
and welcome

Sounds like he's very active with inflammation. Especially the temp. Have you considered Pred? This is a very effective med and very cheap.
I'm not familiar with your system and how it works but a trip to ER might be needed.
With the best will in the world, if your fella has inflammation, diet alone will not help; it'll certainly reduce symptoms such as diarrhea and cramps, but it needs meds to get it under control.
Glad you found us, lots of support here for you
lotsa luv
Joan xxx