Update on me

I'm doing better as far as being able to live life. I can go out with my son, am no longer on IVs, have stayed hydrated and out of the hospital, etc. However, I'm still really not doing that great. I was doing better for a bit, but after trying to taper the Prednisone, I am back up to going to the bathroom every 1-2 hours all day and night and am so sore from that. Using the Rowasa enemas is SO painful because of how sore I am. So it doesn't seem that the Humira is really helping. I got down to 15mg of Prednisone and had to go back up to 40mg, but even that is not enough now and is not helping things. :( It seems I just can't get off it. I can't keep taking it either. I don't know what to do anymore.Lortab was helping to slow things but I just ran out of the last prescription I had and can't get more as I used all my pharmacy services for the year already (my year started in May and on Medicaid you get 48 a year. When I was on IV fluids and TPN, it counted as like 7 scripts a week). An application for more is pending. I had asked my doctor to do that 2 months ago but they submitted the wrong application, so right now I can't fill any prescriptions until that goes through.

So I'm pretty much in pain all the time, in the bathroom a lot, and up all night. Everyone thinks I'm doing really well, though, because I still try so hard to do everything normally.

It'll be 3 years this month with no real remission or drastic improvements. I am just so sick of this

I'm not considering it at this point and no one has suggested that yet. I had SO much trouble with my ostomies that even that doesn't seem like a good option at all.

I have been thinking about you and I figured you were out living life. I am sorry to hear you're not doing better than you are but it's good that you have seen some improvement. I have been up and down lately too and cramping up a lot. It's very painful. I hope you can find some help to get your medication renewed. Is your pain from cramping?

Oh wow Pam...I really thought you were doing so much better too because you haven't been here. Sad to hear your suffering is continuing and the meds aren't helping at this point.

I hope you can get answers regarding the permanent ileostomy if you eventually consider it. Seems a logical option to help you.

Thanks for letting us know how you're doing.

H

Hi Pam -
I, too, had hoped you ere doing better because we hadn't seen you in a while.
I sure hope and pray you can do something, even if it's going for the permanent ileo, that helps you.
I read your post last night, and this morning getting up and moving, I was reflecting on your comments about everyone else, you family, etc, thinking you were doing good.....
human behavior is complex, but my thoughts were several: for one thing, they're thinking you are doing better because they hope that for you, they WANT you to do better.
Another thing we see is that folks get tired of dealing with illness in their loved ones.... they just can't deal anymore, reach a saturation.
I am proud of you for doing what you can, in any case, doing some things with your son.That shows great spirit of living life no matter what!
Hang in there, and keep us posted.