This sucks..why does the medicine have to be worse than the disease?
Thu, October 15, 2009 8:33 PM
This is how I have been feeling since the first Asacol pills slid down my throat. I take 400mg 2 pills 3 times a day. I don't know if it is totally the medicine or the thought of having 2 chronic diseases (Crohns and UC) forever. I try and try to think positive about the whole thing. I have always been the "funny girl" I crack jokes about everything, even things I shouldn't. I wanna be that person again, not this. I feel like I have the flu all the time, no one around me understands because they aren't going through it and sometimes I feel like I bring them down talking about it. I know you guys out there know what this is like. I have always been the "life of the party, the one who acts crazy or stupid just to get a laugh" and now I am the one who sits off in the corner obsessing over this disease that has found it's way to my colon. I am so depressed. I don't feel like acting like the fun loving mother that I was to my son before all this. He is 2 now and the apple of my eye but some days he is way too much for me to handle. Not to bring anyone down but has anyone else noticed this??? The medicines can be worse than the disease. I just wish that it could be better. Like when I thought it was just irratable bowel syndrome....ok don't stress and it won't happen....nah, don't wake up and it won't happen now. How can I cope with this and not let it take me over....any advice is more than welcome.
Joined Oct 4, 2009
Fri, October 16, 2009 12:00 AM
Reply posted for ambersmith2.
I hear you loud and clear. Life is filled with its challenges and the IBS community certainly gets their fair share.
I am not sure how long it has been since the first Asacol pills slid down your throat, but maybe your dr can switch you to an alternative med. Some meds work better than others and often times it takes a couple of tries / combos to get the most out of your day-to-day.
My hat is off to you....dealing with a toddler isn't easy for well parents. I cannot even begin to imagine being in your shoes.
My daughter has been a Crohns patient for as long as she can remember. She'll be 10 in Jan., and we have been through a lot. I can tell you that she is now in remission and continues with her low fiber/low residue lifestyle, along with takes her meds religiously. She has never let the disease define her........she is strong willed and defines it! You would never know she were battling this disease if you saw her flying through the air with her gymnastics. As a matter of fact, they don't know! (LOL)
Better days are ahead.......be well
Lizzies Mom
Joined Sep 9, 2009
Thu, October 15, 2009 9:36 PM
Reply posted for ambersmith2.
Your story sounds so familiar and I remember having these same thoughts/feelings (Who am I kidding? I still just not every day.) I have been diagnosed with Chron's since 1988.
Like most chronic illnesses, there is no easy way to get to "acceptance". There are some things though you can do that may help your body and mind. If you haven't already, ask your MD or GI to run lots of bloodwork to determine if you are deficient in any vitamins or minerals. It isn't uncommon for those of us with IBD to have a Vit D deficiency which can definitely impact your outlook as well as absorption. Many of us also look into alternative or complimentary medicines. Explore what works best for you to cope with the stress. I find that allowing myself to say "This sucks and isn't fair" is quite liberating. It is also liberating to say that to the people in your life. Letting those who are close to you know that things are miserable is far better than trying to put on a happy face for everyone while suffering in silence.
For me personally, lack of sleep or poor sleep is one of the most determintal things and let's face it....getting a good night's sleep with the weight of having IBD isn't the easiest thing in the world. If all the thoughts in your head don't keep you awake, the IBD or meds will. Melatonin works well for me and I have taken a prescription sleep medication (briefly).
Take time for yourself. Listen to your body and do what it is telling you it needs. This is a perfect time to be "selfish". Your son will benefit from this. Think of this analogy. On a plane, during the preflight instructions, they tell you to put on your mask before your child's. This is because if you aren't OK, he/she really won't be. Taking a little time to nuture yourself will benefit everyone in your life.
Try to hang in there and know you aren't alone.
txslpJoined Oct 15, 2009