- Location
- AUSTRALIA
Feeling very down over the past week. Long story short I flared last Nov, hospital visit, haemorraged, blood transfusion etc. Luckily no surgery then.
Have been on Prednisone since then and it's doing my head in. I have been on and off Pred for 8 years and my GI has actually said to me that this is pretty much my last time he wants to use it due to the long term side effects. I'm really feeling being on it this time round.
I reacted to Cyclosporin so if I did flare again (if I ever get better) then I have no idea what they'd use.
Anyhow, I've decided not to go down the Methotrexate path as I'm so over having toxic medications running through my system.
The Pred this time round has given me the shakes (I'm still shaking even down to 15mg a day), indigestion, moody and break through bleeding which I've never had before. Have any women out there had this?
I've spent the past few weeks speaking with my GI about the possibility of surgery. Fully removing the large colon and "hopefully" having a J-Pouch down the track. I saw a stoma nurse for the first time last week just to discuss things as i will need a bag for 3 months before the reversal. Well..... i broke down, it was very confronting for me . I'm very conscious about the way I look. I know this is something I just need to deal with in time; I still have my life right???????
However there is one more spanner in the works, a colonoscopy 2 years ago showed 3 small ulcers in my small bowel which I've never had before. My GI said this could be something called "backwash" as i was flaring so badly and my UC may have just gone into the small bowel slightly OR it could be an indication of Chrons. If it is Chrons then they won't do the J-Pouch. I'm having a Colonoscopy next week to see what they come up with.
For the whole 8 years they have always suggested UC, it's just these 3 small ulcers that are making everyone wonder and making me stress.
"IF" it is Chrons then I have one last option with drugs which is to apply to the Australian government for Humira. We have to prove to them that it is Chrons and not UC as they won't give it to UC patients. Great that my medical condition can be in the hands of the government. (rolling eyes)
So I'm in limbo I guess until next week and very stressed. Someone give me a crystal ball!
Have been on Prednisone since then and it's doing my head in. I have been on and off Pred for 8 years and my GI has actually said to me that this is pretty much my last time he wants to use it due to the long term side effects. I'm really feeling being on it this time round.
I reacted to Cyclosporin so if I did flare again (if I ever get better) then I have no idea what they'd use.
Anyhow, I've decided not to go down the Methotrexate path as I'm so over having toxic medications running through my system.
The Pred this time round has given me the shakes (I'm still shaking even down to 15mg a day), indigestion, moody and break through bleeding which I've never had before. Have any women out there had this?
I've spent the past few weeks speaking with my GI about the possibility of surgery. Fully removing the large colon and "hopefully" having a J-Pouch down the track. I saw a stoma nurse for the first time last week just to discuss things as i will need a bag for 3 months before the reversal. Well..... i broke down, it was very confronting for me . I'm very conscious about the way I look. I know this is something I just need to deal with in time; I still have my life right???????
However there is one more spanner in the works, a colonoscopy 2 years ago showed 3 small ulcers in my small bowel which I've never had before. My GI said this could be something called "backwash" as i was flaring so badly and my UC may have just gone into the small bowel slightly OR it could be an indication of Chrons. If it is Chrons then they won't do the J-Pouch. I'm having a Colonoscopy next week to see what they come up with.
For the whole 8 years they have always suggested UC, it's just these 3 small ulcers that are making everyone wonder and making me stress.
"IF" it is Chrons then I have one last option with drugs which is to apply to the Australian government for Humira. We have to prove to them that it is Chrons and not UC as they won't give it to UC patients. Great that my medical condition can be in the hands of the government. (rolling eyes)
So I'm in limbo I guess until next week and very stressed. Someone give me a crystal ball!