New to the forum but not the disease

[blackbat]

I'm 35 and I was diagnosed with crohns disease 10 years ago. I've been very lucky in that I kept a full remission for about 9 of that... yeah me... but now that it's no longer in remission its been an ugly beast. Most of that time I was prescribed Pentasa or more recently Asacol. last summer is when symptoms other than mild fatigue or the winter join pain started to arrive. Tried the Steroids route. landed in the ER the night before thanksgiving with a blood sugar of nearly 400 due to the cortical steroids. and thus was weined off them and marked as steroid intollerant and started Remicade in December. I've been through three IV infusions already an at first i was feeling better but I feel that slow down hill again. A friend of mine found these forums and suggested I give a peek as the depression from the fatigue, the almost now intolerable joint pain and of course any and all of the digestive problems that crohns is so famous for.

 

[Sojourn]

Welcome to the forum. Depression is something many of us with Crohn's battle with from time to time. I know it may sound trite, but many here have talked about learning to enjoy the simple things in life and I've done the same thing. Not to say you can't still enjoy a full and vibrant life, but especially when the symptoms are bad, it's good to be able find peace and comfort in ways that you may have not before.

That's awesome that you have a friend who has researched the disease and actually directed you here. Most of us have had the experience of friends and family who don't understand and make little effort to.

Of course, if the depression gets really bad you might consider seeing a professional. But often, it's just a matter of learning to live with CD. It sounds like you've just started Remicade. I know some get results immediately, but after only three infusions I wouldn't give up hope on it already. Also there's a lot of useful information in the Food and Diet section of these forums as far as eating goes.

Hope you get to doing better soon and feel free to vent your frustrations or whatever else may be on your mind. This place is a good sounding board and many have felt the same, or similar, in many regards to all the issues involved with CD.

 

[blackbat]

actually my friend is alot worse off than I am he has RSD, don't ask me for the long version of it but basically its a disease of the nervous system where the nerve function just gets turn on and is pain 24/7 365 with no medical relief at all, so yeah he is very understanding of chronic illness and effects it can have on life.

the fatigue is the it the worst for me since i have a 4 year old with apraxia so its a never ending day of special needs for him and little rest for me or for my symptons.

 

[Sojourn]

I had not heard of RSD or apraxia but just did a little reading about them, and see what you mean. My heart goes out to your friend and your child.

There are others here who have other diseases, on top of crohn's, or are having to care for children or others with special needs at the same time. It's not something that I've encountered as yet but I understand the fatigue.

Currently I'm living in a truck, big rig driver, and it is a difficult life with crohn's. I actually get more rest, though, than the bus job I tried out for a few months. But I don't need to go into the details of the kinds of problems I encounter with this disease living in a truck and on the road.

Hang in there, we're here to listen.

 

[Guest]

hiya blackbat & welcome

we have a few similarities it seems, & not just in our usernames lol i was also diagnosed many years ago, had a long respite from any crohns activity whatsoever, and recently it has recurred. also been on prednisolone and asacol, and am also suffering with joint pains right now. oh - and i have kids with extra needs too. phew, its not an easy life, is it?

i hope you get as much support and information from this site as i have in the short time i've been here - its a wonderful find for anyone who has crohns, & really helps take away that 'i'm alone with this' feeling..

see you around the forum

dingbat.