Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength
Dx'd w/Crohn's colitis in May05--spread to ileum & small intestine as of April08. Currently on Humira every 2wks, Pentasa, Entocort, Phenergan, Lomotil, Celexa, Lortab, Ambien, and new this week Zoloft.
Post Edited (spookyhurst) : 11/15/2008 8:29:49 AM (GMT-7)
First off many of us suffer with "anticipatory anxiety". What is that, the constant fear of what if, what if. I have had this dd for a very long time and just discovered that I had this about a year ago. And thru therapy and the help of the occasional Xanax, I have been able to work thru it and identify when its coming on and to stop it in its tracks. First off, I think for the majority of us, alchohol is a big NO-NO. It just sends me straight to bathroom. Also, like others have mentioned, I really stick to my safe foods when I am out and about. Nothing like emergency bathroom visits to put a crimp in your plans. If it is an activity that I feel a little anxious about I will take my Xanax and that keeps me less stressed.
As for the fatigue that seems to be part and parcel with Crohns. Between the disease, medications etc that can make things harder on us. Maybe plan on taking a nap in the afternoon before evening plans. I try to keep most of my activities before 8 pm. I know, I know, big party animal, huh???
I work fulltime, 40 hours a week. But I also am in remission right now, but also have a milder case of Crohns. Doesn't mean I feel perfect all the time, because I don't. I have to get up a little earlier, because although I am in remission, my mornings are still very rough everyday, somedays worse than others. But once my meds kick in I am good to go.
In order to have any kind of life, I have to recognize that I do have a chronic health condition, and I have make sure that I stay on my safe foods and not eat or drink things that may upset the apple cart. I have work with what I have so to speak. Hope that helps.
Thank you for posting this subject. I have been struggling with these issues for many, many, years (I was diagnosed 43 years ago at the age of 19).
I totally agree with FitzyK. The right strategies can help us do the things we want to do. I love her list of actions and consequences. The same answers also apply to my situations.
I have found that planning accordingly helps keep my anxiety at bay when I need to be out and about. The fear of pooping my pants is very real and has come true on some occasions. I found that wearing a thick sanitary napkin helps if I should "loose it" before I reach a restroom. I always make sure I know where the nearest restroom is. I start taking immodium early in the day which often helps control the D. I only go to restaurants that are comfortable for me. Lucky for me, my friends are very understanding and cooperative and I never need to stress about where we go.
I always carry tylenol, immodium, a couple of percocets and some ativan (just in case). Sometimes just the security of having these available eases the stress and helps me relax.
I recently was put to the test: I had planned a trip to visit my daughter and granddaughters in Fla. Turns out that I was hospitalized overnight 4 days before I was scheduled to fly. I was feeling better but was extremely anxious about leaving the comfort and security of my home. To make matters more difficult, I was flying by myself for the first time (I had always gone with my husband and/or daughter.) It would have been easier just to cancel my trip, but I decided that I wasn't going to let this DD ruin my chances of seeing my children. Well, with my strategies taken and an aisle seat on the plane I visited for 5 days and felt wonderful. We even ate at a mexican restaurant one night! My daughter spoke earlier in the day with the restaurant manager and he said he'd make me whatever I want. So I enjoyed my plain grilled chicken and rice. The trip was just what I need to restore my faith in myself and what I am capable of accomplishing in spite of this DD.
My advice is: try to do whatever you want to. It may work out fine, it may not. But you will handle it and get stronger in the process. Find the strategies that work best for you. And...live! Sending you hugs and best wishes.
about a year ago, when I first saw my Internist, she believed I had Crohn's and that it was a mild case. As time has gone on, I have had good and bad days, but overall, I feel almost like it is gradually getting worse. Every time I flare it takes a higher and longer dose of prednisone to get things under control and manageable. Then shortly after I get off the pred, something flares back up and I end up back on it.
So far, I have been able to work but it is not always easy. I am very fortunate, in that I have a desk job and the restroom is VERY close to my desk.
This flare I am in now has been rough. The arthritis this time and the fatigue are about doing me in. It has been very hard to be at work, even though I sit almost all day long. I hurt so bad and I am so tired, all I want to do is go home and lay down. On the upside, I am hoping to start Remicade soon. I have tried MTX and Imuran and I am just not getting anywhere so I am hoping the Remicade will work!
It is hard to be out in public. If I am not exhausted from being out then I am scrambling to find a restroom...seems like it is often one or the other.
My anxiety tends to get the best of me...I have always stuggled with it and with Crohn's, it seems to get worse. I often think and worry about the future and wonder what will happen. Doesn't do me one bit of good, but I still do it.
I hope you start feeling better soon! And please don't let anyone make you feel bad for not feeling good. I think many do not understand this disease and think we can just make it go away by what we eat or whatever, and that just isn't the case. If it was, we wouldn't have it!
YES. This is a big issue for me right now. I'm on short term disability, about to transition to long term. I look around at what I do all day (not much), and think "why are you so lazy? You aren't that sick!" And then I spend a couple of hours doing chores or running errands in an afternoon and feel like someone beat me with a stick.
I've got an appointment with a new GI next month, and I'm hoping that she'll help me get back to a more normal life. My current doctors acknowledge that the meds aren't doing it for me, but they won't change them, either. Their idea is to put me on a low dose of pred indefinitely. I told them I wouldn't do it. It's not a maintenance med, and it's too hard to get off again. But I tell you what, on my lousier days it's really tempting. I've got a bottle left over from the last time I was on it. My joints hurt, I'm exhausted, my anus and skin tags are sore and inflamed, and I had a rather spectacular bathroom event this morning. The pred would fix me. At least for a little while. Until it makes me worse. It's a bad idea, but it would feel good while it lasted. Gee, I don't sound like a junky or anything, do I?