I agree. Once you get to the point that you are thinking something is amiss, it probably is. The only time this probably is not true is early in the game when you worry about every little hiccup. Then places like this are a great place to get some reassurance so you can calm down a bit and see how things play out.

Jan

Gosh I love this site, and ALL of you!!!!!! 

Just to let you know that the results are in. My case was studied by many doctors, all confirming that it is definitely chrohn's, I'm almost relieved believe it or not. I think that the anticipation sometimes is worse than the verdict itself. In any case, I will be starting remicade (I made that decision since filling out a gazillion papers to prove that I cannot afford the Humira was making me crazy) when I return from a much needed vacation in Florida with my children. 

I blanked out when the doctor told me how often I would need treatment at the beginning, which was a lot. I think that it was too overwhelming for me to comprehend, and I didn't want to hear it. After that, I will be infused every eight weeks, that's the only part that I'm sure of as far as treatment goes. I'm praying that perhaps the remicade will help my pouch as well, and that maybe I can live somewhat of a better lifestyle once I begin treatment, since my pouch has never been a happy one. Who knows, maybe this was the problem all along, although I doubt it. I think I just happen to be one of the lucky ones to develop crohn's along with all of my other gastro problems. My journey  begins.

Thanks for being there for me for the much needed support!

There are a few people in my CCFA support group who have Crohn's Disease, and are treating it with Remicade with very good results.  The feedback I hear is that they are a bit fatigued on the days of their infusions (and perhaps for another day or two after), but that after that it works well for them in controlling the symptoms.  I also heard the same thing from my friend with CD taking Humira - he calls it a feeling of being "wiped out" right after the infusion. Good luck with it and let us know how it goes.

Mema- based on your posts I think you might benefit from joining the local CCFA support group in your area.  With the recent passing of your husband, new diagnosis, new treatment etc., it sounds like you are passing into a new chapter in your life and I really think it will help the transition.

Also- I don't know if you like to watch movies on Netflix but I was very, very impressed by a movie I just saw called "The Fault In Our Stars".  It's about 2 17-18 year old kids with terminal cancer who meet in a support group for cancer patients and fall in love.  In other words, kids who have a worse prognosis than all of us.  When I read about the movie, I wasn't sure I would like it because I am not really into those kinds of films (i.e., tearjerky teen romance).  However, I found it was extremely intelligent, well done and well acted, with a fantastic performance by Shailene Woodley as one of the two main characters in the film, who is living out her life with terminal cancer.  You might find it to be inspirational.

Thanks CTBarrister....I'll check to see if I can find a local group, I think that might be a good idea for me.

I love Netflix but tend to stay away from films that has anything to do with Cancer, but will certainly look to see if I can find this one especially since you said that it was so good.

Question, I'm wondering if anyone knows. Someone asked me this morning if I would need a port - does anyone know? 

You should not need a port (PICC line or similar). Those are for folks who need frequent IV infusions (like daily or several times a week) and/or have particularly bad veins. For the occasional infusions, a standard IV line should suffice. 

The main concern with Remicade is possible allergic reactions. One reason is because it is an IV infusion. The other is because it is based on mouse protein. Some people react right away, others after several infusions. But, they have to be prepared for it every time. Even if you have a reaction, they may not have to stop giving it to you. Sometimes they can get by with giving an antihistamine first and slowing the infusion. You are under constant observation, so do not worry. Many people tolerate it for years and years.

Just bring something to do, as you will be there for hours. A book or iPad should keep you busy.

Jan

I have horrible veins, so hope it won't be a concern. I'll just make sure I drink a lot of fluid before going in for treatment. Since the weather is still cold, that will be a concern as well since they don't pop when I'm cold. I'll have them get those hot pads as well.

Every person that I have spoken to, that is using remicade, said that they give them two doses of benadryl first and benadryl gives me horrendous butt burn, so I'm dreading just thinking about it.

With a little bit of luck I won't be allergic to the med. Only time will tell. I don't have years and years since I'm not that young to begin with - LOL....however as long as it works is fine with me, just let it work.

Will plan on going to the library to get some books. I already have a list waiting for me since I really haven't been able to concentrate much since Ben died. After a restful vacation I hope I will be ready to get going with my life. I'm trying to be as positive as I can be. 

I just looked up a support group with CTBarrister's suggestion. Something else to do.

If you want a suggestion on a book, I just recently got through reading The Red Sparrow by Jason Matthews.  It's a really interesting spy novel, about American and Russian spies who are spying on each other, written by a retired CIA agent who served 33 years overseas, including in Moscow.  You will learn more about the intelligence business, from the perspective of those actually out in the field, than just about any other spy novel that is out there.  I highly recommend.  

They can give the Benadryl IV too. As time goes on, you can take your own antihistamine at home before you leave.

Jan