Tough choice

[Wonk]

Well today I finally got to see my new gastro, and he has an excellent bedside manner and seems to listen. We went over my recent colonoscopy, my colon is perfectly healthy which I guess is why I don't get D, but that the terminal illeum is bulging and the passage severely narrowed. He said I need to do something right away or else it will be obstructed completely soon. He says that the Pentasa I have been on is doing nothing for me, except perhaps keeping the inflammation in check enough to keep from getting an infection, which I was plagued with before. And he said we could try steroids and imuron, or he would have no problem letting me go right to the Humira or Remicade because he is sure that I am "moderate to severe".

I chose the Remicade because I am terrified of steroids, but then when he said I would be doing it at least 2-3 yrs before he would recommend trying to stop. I burst into tears because I am married and we have one daughter and desperately wanted more children. I am also suppose to start law school next September so I wanted to be better. I've heard that the steroids are a viscous cycle and replace one type of sick for another.

So my options are the steroids, try to get healthy enough to conceive. I wouldn't take imuron while pregnant so I would be soley relying on the steroids if I flared again (assuming I can even get to remission). Then going to the remicade when finished breastfeeding.

Or forgetting about babies for at least 2-3 yrs.

Someone please try to assuage my fear of steroids. I just picture myself fat, covered with zits, crazy, with arthritis.

 

[kello82]

oh no dont picture that! yes the side effects can be bad but what your imagining is probably MUCH exaggerated.

the side effects are different for everyone-and some people dont experience any at all!

for me i end up with a moonface (ew) but no excessive weight gain anywhere else. it affects my sleep, i take benadryl every night to knock me out lol. and yes it does throw you through some pretty nasty mood swings, but usually some hugs and snuggles from those you love and maybe a cookie or two can make it better
also bone loss is a problem, so make sure you take calcium and get density tests if youre gonna be on it long term

you definitly have a lot of things to consider when making this decision, but try and remember that your well being is the most important. its gonna be hard to be a good mama if youre feeling sick all the time, right? you need to take care of YOU first.

hope this helps *hugs*

 

[My Butt Hurts]

Wonk - steroids are different for everybody. I've been on them 4 times if I recall, and I have LOVED them each time - not kidding. They give me extra energy, but I sleep okay. They can make you very hungry, but it's not the med that makes you gain weight, it's how you treat your hunger. The one time I DID need to gain weight, so I used the hunger to help me gain 30 pounds. If you try hard to control it, you can. My acne was very minimal, and not on my face, just my back and in my scalp. You can't know what it will do to you until you try it, but they are good for me.
Good luck with your decision, and feel better!

 

[jed]

my veiw on pred is widely known


mmmmmm, prednisilone.....

 

[dayng1016]

I've used prednisone and loved it each time. I'm one that does not get any side effects from it, except the constant hunger. I hated that but never gained any weight while on it. Never had any acne, trouble sleeping or anything else with. But as you will find during some of your reading of other posts, it effects everyone differently. I am currently on Humira (4months now) w/ no troubles, also take Omega 3 (fish oil), and a multi vitamin.

I hope you find something that works for you. Feel better.

 

[Wonk]

Thanks for the replies. It does help to hear that its not as scary as I think. Tonight I am leaning towards giving it one round and if I get sick when I go off and I am not pregnant, I am going straight to the Remicade. I do not want to do it long term, I already have some bone loss and my mom has osteoporosis at 50. I am lucky enough to have coverage that may not be there in the future. I am sure many people would be very happy to be able get that drug.

I hate these nights when I give in to feeling sad about this disease. It takes enough of my physical time, I don't need it in my head too grr :ybatty:

 

[heartofwisdom]

I'm only been on prednisone this week but I am not sleeping at all. I don't have huge hunger but food sure taste better to me. I cry at the drop of the hat hat now--that's not me.

I'm past childbearing now so that's one thing I can be grateful for. Sorry you have to make these decision in your child bearing years. (I love babies).

RObin