A good week.

Hi all. Had a pretty good week with no major issues. Some minor stresses but no big flairs - so Yippee! Had a conversation with a friend in the car about my worries and fears and about life with Crohns. I feel bad because she is the one who usually hears about this and I don't want to dump on her so much. But, good week - hopefully the weekend and the next week will be just as good. Love the holiday season, which is probably what is helping me feeling well. I'm also trying to stay more positive. We'll see how that goes. :)

Thinking Im ok...

Remicade - thats my drug of choice. Im supposed to be taking something else with it but I don't. I really suck at taking pills - thus, I suck at taking care of myself. Plus I start to feel good and don't think I need any more meds. However, now, I dont think the Remicade is working out so well anymore. It doesn't seem to last nearly as long and I get sicker. Anyone got any thoughts out there on any new meds that seem to be working for them?

Crohns and colds?

Is there any relation between Crohns disease and colds? Last night I had a really bad stomach pains and was in the bathroom for quite some time (by the way - missing Helios last dance on Dancing with the Stars -bummer I know!). And I'm wondering if that had anything to do with the cold I have. I know that it lowers my immune system but I was also wondering if the cold made my Crohns flair up. Any ideas? Looking for anyone who has had a similar case or thinks my idea is preposterous to give me a shout.

Is this what Bulimia feels like?

So, I survived the first major holiday of the big holiday kickoff with little incident. I was/am still feeling somewhat ill though. Every time I eat, I keep feeling sick to my stomach. No matter what- or how much, a few minutes later I feel so sick to my stomach that I wish I had never had anything. I then think I may throw up and end up sitting near the bathroom. I did dry heave a few times - NOT MY favorite thing to do in this world and all the while I kept thinking - Is this what bulimia feels like? Odd thought, I know. I also managed to screw up some of my family's holiday plans by not being able to go to dinner on Wed night to their favorite grease pit. And felt really bad. But it wasn't the first time that week. I find it difficult and feel bad quite a bit lately. It seems more and more - when I go out- that people are asking me if we go certain places if its OK... I HATE THAT. Its fine - no matter where we go - Ill be fine or no matter what you order - Ill be fine. It makes me feel bad and I know I shouldn't but for some reason, it does. I just want to be normal sometimes....

What is Crohns?

I guess I should probably tell people what Crohns is... but as I am not a doctor, I feel as though I wouldn't be a reliable source. I can tell you how my fabulous gastroenterologist described it to me - your small intenstine looks like cobblestone (ps - this is a "real" picture of what this looks like but is kind of gross for those; of you who don't like blood or guts - you may want to avoid it.)

Crohns diesease is a chronic disorder where your body more or less fights itself causing an inflmaatiom in your digestive tract. It generally affects the small intenstine and colon but can be found anywhere between the mouth and the anus. There are different types of Crohns disease - but Im not sure which case I have. The doctor told me once but as I was still in the phase known as denial - I wasn't really listening and missed it. I could ask again but whats the point - I have it and since most people don't know what it is when I try to explain it - I dont think using other terms would help.

Doctors dont know why people "get" Crohns Disease and there are all sorts of theories behind it. But there are "triggers" that can cause flairs. For example, with me, its things like stress, alcohol, some types of foods - like greasey or milky things. But that doesn't mean I avoid them. Usually I just pay like heck the next day or two or three or four afterwards.

IF you want more reliable information on Chrons there are some great sites to look at. The CCFA site has a lot of great information on what Chrons is and how you can help get the word out. Living with Crohns Disease has some valuable information on Chrons but it is the company thank makes Remicade (my current treatment) - I feel as though full disclosure is appropriate here. Crohns Online is an alright site. But it does have a book that I gave to someone I work with when her husband was first diagnosed. She was hesitant to use computers and look up information so I gave her the book and it answered so many questions for her that she was really grateful.

These are just some of the sites I found useful. Im sure there are many others out there. If you have a suggestion, please post it here so that others can benefit.

My story... you know we all have one....

Anyone who has some sort of disease has a "my story". When most people see/read mine they will probably be like boo-hoo... because I'm one of the lucky ones where nothing too traumatic had happened to me.

When I was a junior at SU (go ORANGE) I was constantly having stomach problems and CONSTANTLY going to the bathroom. My regular Dr. was out of town and I went to his fill in (a man who for having all that education - just didn't seem too bright (neither here nor there)). He told me I had a virus - for 8 MONTHS. Finally, after several really embarrassing tests (some of which I will probably tell you about at another point) my original doctor brought me into his office and sat me down. He then said (and I quote), "Well, its not as benign as we had hoped."

Now sitting in a little room all alone as a 21 year old college kid and you hear the word benign - you start to sweat, shake, and you immediately - think your life is over because you have the big C.

And instead of the big C - he says you have Crohns Disease. Crohns Disease - what the heck is that is all I could think. Crohns Disease? Never heard of it - how bad can it be? Well come to find out - about three months after my official diagnosis (Aug 2000) - I would have the worst flair of my life on Christmas Eve/ Christmas Day 2000. I would lose 12 pounds (which when you only weigh 100 pounds to begin with is a slight problem) in two weeks. I would have to go to a completely liquid diet, take steroids and start a strict series of Remicade treatments (which by the way -still on today).

But now, I am happy to report I am generally living a rather normal, healthy life. I have to watch what I eat, drink, my stress levels, and sometimes I just don't feel great but I can honestly say - I'm glad it wasn't Cancer.