Bit of a setback

[Miss Rose]

Hi All

:depressed:

I'm feeling a bit disappointed with my progress and just needed to vent a little. I had been feeling a bit smug as I was feeling almost back to normal, so much so that I was starting to taper off the pred with a view to coming off it all together. Unfortunately within three days I am having lots of tummy pain, feeling generally unwell with a kind of warm/burning feeling in my guts and I have been advised to go back up to 15mg a day and am now facing the prospect that this may not be enough and I may need to go back up even higher. No D yet which seems wierd so I am wondering if the Aza may be causing my pain or whether it is the Crohn's. Anyone got any ideas?

I guess I am just feeling a bit gutted because it means that the Pentasa is probably not working, although I had kind of expected that especially as my consultant has also put me on Azathioprine. As the Pentasa does not seem to work for me and the Azathioprine will take three or four months to kick in then I guess I am resigned to the fact that I will be on the pred until May or June which feels an awfully long time.

I just feel that I have wasted such much time on the Pentasa when I could have been taking the Azathioprine all along - my consultant had already decided to put me on this before my first appointment with him last week.

Anyway, just wanted to share how I am feeling.

 

[CrohnsHobo]

Sorry to hear that. Never taken Azathioprine or Pentasa so don't know much about them. Hopefully the Azathioprine kicks in soon and you can begin lowering the Pred. I am still on 40 a day and hope to lower soon also.

Will be hoping you can get off it soon!

 

[Crohn's 35]

Hey Rose, no one knows why one drug wont work as another one does. One minute you are fine and not much pain and then boom! I call that the "pulling out the rug from under me" syndrome. I do know Pentasa is a mild to Moderate drug. I am just starting it again now. Along with Entocort. Who knows maybe it will work this time maybe not. I try to stay positive as much as I can, even tho I hate that word.. you will have your ups and downs from time to time. Getting out of the funk is better for you in the long run, it is just vendicated that you want to vent or have a small pity party, NOTHING wrong with that. Frustrating this disease!

 

[imisspopcorn]

Sorry Miss Rose. It's so disappointing when we faithfully take our meds and they don't work for us.....Chin up..... If you need a good vent we are always hear to listen.

 

[Jennjenn]

I feel bad to read that your not feeling well. I hope that you feel better soon.

 

[Sue-2009]

MIss Rose--Same thing here--but I am only on Pentassa! I called my GI today to find out what I should do...I am off the Prednisone as of Tues and feeling tummy pain too! I don't want to end up in an awful flare again! I am depressed too! Being 43 and just diagnosed -I am depressed about the condition, and amazed at the strength of the people who have had this for years!! Even into their childhood. It upsets me and scares me to see meds dont work for some people...the fistulas and everything else with Crohns---UGH! Sue

 

[Peaches]

Sorry for the rough patch Miss Rose. The docs usually have a couple of ways of approaching things. Many start with the drugs with the least amount of side effects and then work their way up as you need it. Sounds like this is what your doc is doing. Good to at least try the Pentasa to see if it does the trick. Hope the Aza will kick in soon and you can come off the pred - hang in there!!

 

[shazamataz]

Sorry to hear this Miss Rose. I guess you just have to keep trying til you find what works for you! I'm sure it will be sorted soon

hang in there!

 

[Tan]

Im sorry you are not feeling great at the moment.. I am too scared that I could be starting another flare... Its just so hard to tell as everytime I start to feel slight sick I worry that here we go again. The last time was just after xmas but thankfully it was just a reaction to the antibiotics I was on then for the first 10 days of new year felt great but the last few days have noticed bad pain back in my right lower side of my abdo. It actually is getting worse and hurts more then I ever remember it hurting before. Don't get me wrong its not to the point where Im curled up in pain but its def noticable!
I really hope you can get it under control quickly again and stay on top of it to get into remission. Good luck darl.

 

[Pirate]

Miss Rose, hang in there and see what your Dr says. Sometimes you go through these ups and downs before getting completely back on track. I've went through it many times and there is nothing more frustrating than the feeling of the meds failing to do what we expect. But it is a matter of how you fight back so that it doesn't control you.
You have something here in this forum that I wish I'd have had when I was DX and that is a great place of support and a place to vent. It helps you understand the way this monster works and how to battle it.
Good luck and let us know how things are going. Everyone is here for each other.