Not sure I'm doing enough!

[dannyboy84]

I was officially diagnosed with crohns about amonth or so ago and am currently taking 9mg of entocort a day orally, at first I wanted to know all about it and was keen to get the ball rolling with a healthy eating life style and getting better but after doing a fair bit of research I grew tired of all the doom and gloom and thinking about having crohns and reading about different peoples stories and how bad the disease has affected them makes me angry and now I just seem to shrug off the fact I have a serious illness and am getting seriously down about feeling so ill the majority of the time. My girlfriend has coeliac disease and is really good at doing research into both our diseases but everytime she reads to me from a different website I struggle to keep focused and retain any information shes explaining to me and she thinks I just dont care about it which couldn't be further from the truth but I just cant seem to get my head round it and am starting to worry that I'm not going to come to terms with everything until I turn desperately unwell with the disease. Has anyone else struggled with this and have it strain their relationship? My girlfriend says I'm just making excuses and maybe I am but I cant seem to turn my full attention to the severity of my situation and could do with some advice if anyone has any???

Thanks

 

[Jennifer]

You should check out the Success Stories subforum for one: http://www.crohnsforum.com/forumdisplay.php?f=72 There's lots of people in there who are in remission.

You were diagnosed fairly recently so for one, it can take up to a month for Entocort to start working and two, acceptance takes time. How long really depends on the person. Since your girlfriend has been dealing with a disease longer (dunno how long but it sounds longer) she may be frustrated for various reasons. Maybe she had/has expectations about how you would be more understanding or supportive of her illness. I'm only making guesses here though. A lot of people have had difficulty with relationships and illness so if you have anymore specific questions maybe we could help more.

 

[dannyboy84]

We were diagnosed at roughly the same time weirdly enough but because she is constantly doing research on our conditions she thinks I should be doing the same but because I'm not she thinks I dont care but it's not as simple as that.....or is it? Am I the only one who hasn't automatically reacted to their diagnosis and sprung into action doing research and keeping food diaries?

 

[Jennifer]

Uh, no. In all honesty I don't have a food diary. Just a good memory. Even though I know what foods don't agree with me I still eat them from time to time cause they're yummy, but I'm also in remission.

I was 9 when I was diagnosed so I had the luxury of my parents handling everything. Once I was set free though I suddenly had to learn how to do everything on my own. All the appointments, tests, health insurance etc etc. Its overwhelming really. You weren't diagnosed that long ago. Some people go for years before they seek further treatment or start asking questions. Plus look at you now. You're on a support forum for Crohn's! I'd say that's doing something.

 

[skippy111]

DannyBoy,

You gotta stay positive bro, I keep a Journal which I divide into different categories,
Nutrition, Vitals, Observations, questions/concerns, etc...

then whenever I go to an appointment I will go through and pick out the things I think that particular DR should know about and type up a summary report for him so I don't forget to mention anything or ask anything...

I find this helpful for me and the Dr's say it helps them as well and it seems like the Dr's spend more time with me and I don't feel like I am waisting a session and the Dr addresses my questiond and concerns.

Lately however, I have been a bit lazy with the daily entries but somehow manage to type up a summary the night before my appointment.

You are lucky that you have a girlfriend who is doing research for both of you..
It might seem that you are not interested in what she is telling you maybe because you are still trying to process everything and adjust with having to change your way of life?

With us chronies, there will be good days and bad days, there are people here that are having positive results with their treatments and are in remission, yes there is always that possibility that something will come up but we deal with it as it occurs..

If your girlfriend is willing to do the research then maybe you can jot down some of the things that you think you should ask the DR, or maybe she can help you do a journal or type up a summary to take to the dr?

lack of interest , fatigue, depression, etc, those are things that us chronies occasionally experience and to others it might look like we are not interested or dont care, my advice is to try and communicate with her and let her know that you appreciate her for what she is doing and even tho it might seem like you dont care, you do care but chron's disease is very debilitating to the point where sometimes you just have no energy..