Scared

scared

hello ,and thank you allowing me to join your group.I was diagnosed over 21 yrs ago and have had a hard go with this disease.I have been on entocort steroidsnow for 14 yrs and I beleive my body is starting to show signs of it not working like it is suppose to....very worried about which steroid they will try next

Hi Canshay
WELCOME to the forum I am glad you found it as it has helped me immensely. I am sorry you are scared. There are a lot of people on here who have been in a similar situation but I believe there are a lot of drug options left. Where are you from? maybe if you can give a little bit more info re: your story, someone with more knowledge about this than I will come along and offer some support and suggestions.
Hang in there

Hi Canshay and welcome!

That's a long time to be on Entocort. Have you been on any other meds, too? There are a lot of options out there to try that are not steroid based. Have you tried to wean off the entocort? Have you been getting your bone density tested along the way?

Let us know a little bit of your history with meds and we'll be happy to give you our experiences!!!!

- Amy

I am currently experiencing some problems and it just happens to be side affects from the Entocort.I have put on a considerable amount of weight and am having a hard time breathing from the bottom of my lungs I have been more or less panting.So the doctor yesterday gave me some pills because I am retaining fluid,I am emotionally a basket case and most of the time prefer to be alone,.Currently I do not have a doctor and have to go to the outpatient dept at the hospital when needed.So as far as being prescribed something else I am on a waiting list to see a specialist but haven't heard anything so far.
Tired of it all,,

I am so sorry you are having such a tough time. I know the testing and doctors visits can really get to you, but don't give up. It is important that you keep trying to find treatment that works for you. As Amy said, Entocort shouldn't be taken for a long period of time. Steroids will give you quick relief, but you need to take a maintenance drug that can be taken long tern to keep the inflammation at bay. I sure hope you can find the right treatment soon. Good luck, Canshay!

Hi Canshay,

I hope you find the forum helpful.
It sure sounds like you have had a rough ride with CD.

Best Wishes

Hi again Canshay - Where are you located? Are you not able to work with a GI specialist? Why is it taking so long????

If you let us know where you are, one of us can help guide you as dealing with the medical profession is different in different countries.

- Amy

Thank-you all for your kind words,,they really help.I'm from New Glasgow NS.Our hospital is truly bad.I have sat in the waiting room for sometimes 7-8 hrs waiting to be seen while in pain.I have even returned to my vehicle and left my husband waiting to hear my name called just because I wasn't able to sit up.Its very sad,it seems that they treat me with pain meds and no food until it settles and then back home.Its all so scarie when you don't know who to trust.