Dealing with all the "what if's" of this disease

I have had the disease for 36 yrs now and your fears are really true for most of us. I have found things changes alot especially for the last 12 years. Had my first flare in nearly 20 years, had to have 2 resections within only 3 years, my joints have gone from mild to bad, I now suffer with heart issues and so on and so on.

But...I am finding that its important to stay on top of things. So now I pay more attention to my health and when things feel wrong, I start trying to find something to work to fix it. I have found that making sure I take my meds is very important. The maintenance meds may not completely stop a flare, but they do help to make it a lesser event. I am also willing to change meds if necessary. From this forum I have also learned alot of ways to help strengthen my bones, build my immune system up, and things to avoid in my diet.

I agree also that talking about it is also a good thing as you recognize the anxiety and are better able to handle it as it comes. This is a disease I just recently told a friend, is a gift that keeps on giving. We have to try to take one day at time, and deal with each issue as it appears. Big hugs to you, you are not alone!

I know exactly what you mean. I have stopped trying to plan things out in the future because I am sure that this disease will tear all my carefully laid plans asunder. However I no longer live each day dreading what bad thing is going to happen. I just realize that tomorrow may not be like today, and just focus on today.

The question I keep asking myself is if my anxiety is in any way going to help tomorrow be better. The answer is always that instead of feeling better it invariably makes you feel worse. It unbalances your mental state and you end up dreading each day and worrying about things that may never happen. In the meantime, what would have been a perfectly splendid day has passed you by, since your mind is too clouded with anxiety. This has happened to me a lot.

I was driving my husband nuts - basically he felt that he had inadvertently ruined my life by getting sick with crohns because I could not think about anything else at all. I have since been reading books on mindfulness meditation and it has helped me find peace with today and deal with tomorrow when tomorrow is here.

I still prepare - I make sure my husband rests, that he eats right, that I do my share of work around the house so that he can put his feet up, plan vacations around Remicade infusions, etc. Just recently my husband lost hearing in one ear from out of the blue - he was being evaluated for MS. In the past, I would have been a basket case. This time, I was better, and I could wait it hear the results before running down the rabbit hole of what-ifs.

I think in general I have more acceptance now - when my hubby was being evaluated for ms, I asked myself if my fear and anxiety changes anything. Ultimately it is what it is, and no fear or anxiety will change it. Just accept today, and accept the possibilities and deal with it if it ever happens.

Thanks so much for the responses. I was hesitant on posting this to begin with, I didn't want to bring anyone else down. Or cause anyone else anxiety about things. But I appreciate the support so much, sometimes I can feel so alone with these feelings. My husband and family really try to be understanding, but it's not the same as getting support from those who really get it.

It helps so much to know I'm not alone. I know worrying does me no good, if anything it probably makes things worse. But it's hard to just turn it off.

I need to get back to taking one day at a time, even one minute at a time if I have to. Easier said then done sometimes! pb4, I'm hoping to start getting in to exercising more once I get this tree down (it takes the spot of my elliptical machine). I need it various health reasons, but I do hope it helps with my mental health too.

tsitodawg, I sent you an email. I look forward to reading your response!

Jen
I completely understand what you're saying, and I agree with others that at some point we all think this. I've recently had an MRI of my liver and have lesions that though they are benign now, could turn into cancer. While they're not caused by crohn's, but from long term birth control...it's scary. I think all the time that just when you get used to your health issues, something new pops up. Crohn's has a way of changing just as you figure out what's normal for you.

It's scary to think long term, and it really can drive you crazy because a lot is not known about long term use of the newest meds. I think that's my fear...that I'll have worse problems from long term med use than from Crohn's itself.

All we can do is deal with what's going on now. That's what I remind myself when I get overwhelmed and start thinking about all the "what if's"

Hugs and well wishes to you all!

I started on it as soon as I was diagnosed because I was having an awful time. In the month preceeding my diagnosis I was unwell but I didn't know why and it was scaring me.

The worst for me was when I was newly diagnosed. I read about all the things that could happen, and that really scared me. I was able to think myself through it and realize that I needed to focus on today. Not always easy, but honestly I've been a worrier all of my life, and looking back I know most of what I worry about doesn't actually happen. And when it does, that advance worrying really didn't help me at all. So I look at today and say, ok...this is what symptoms I'm dealing with. I can be thankful that at least for today, I am not any worse. (This is harder when you are at your worst, I must admit.).

Sometimes I'm able to say, whatever....I can't control what is going to happen anyway. Enjoy the days that I can, and know that not all of them are going to be good. When I was in the hospital, and took a long time to recover, I got really depressed about my future. Now, I am on the other side of that, and glad that I didn't completely lose hope. Things did get better and life got back to normal (for me).

As far as meds for anxiety, I wonder why that isn't a standard for us, because stress/anxiety is the quickest way to a flare up for me. When I asked my gi, she referred me to my regular dr. Unfortunately, she was reluctant to prescribe anything, and referred me to a psychiatrist. The only problem was hubby had just lost his job, and our insurance, so I think she was missing my point. No money or insurance=big anxiety...why ask me to spend more money on a dr I can't afford???? It would be comical if my well-being weren't on the line.

Do you all find that being able to vent and feeling like you're not the only one who worries makes you feel better? I had been in my head a lot lately wondering and worrying about various things, but hearing that it's completely normal to freak out and not deal well is normal, I actually relax and feel better.

Thanks Jen for posting and making me feel validated in my own worries and fears.

I totally understand how your feeling as I was diagnosed with crohns/colitis almost 24 years ago now and have had several surgeries with my last major surgery done almost 3 years ago and now have an ileostomy and proctocolectomy, then I developed Rheumatoid Arthritis and also suffer with bouts of iritis so I still need to be on methotrexate injections as well as humira injections. But in saying all that I must admitt having an ileostomy has made my life bearable, it has taken me some time to deal with it as it was emergency surgery but I am seeing a psychologist and dealing with it better these days. I'm not trying to scare you and not saying you will end up like me, but what I would like you to know is if it comes down to having to have this kind of surgery done its really not the end of the world, I had no life before my ileostomy as I used to constantly lose control of my bowels every day and the depression was just miserable. So for the first time in many years I am starting to feel like I finally have some kind of life, Hang in there and if you want to ask me anything I would be only to happy to help out. Take care
Doreen

Oh yeah, the greatest pleasure of CD, worrying about "What Next?"
For me, first it was Fissures, than Arthritis. And then, the real kicker, kidneystones. Every summer. For four straight years.
But I realize if I dwell on this too long, I might freeze up in terror and never move again.
The last few years have brought no new surprises other than my flares have been NEARLY absent. This is a good one.
But I also realize this DD had some serious impact on my development as a child & teenager, not just a late growth spurt ( Classic as my old support group would say..).

Sincerely,
Matthew