What happens at next appointment re meds - Crohns Disease Forum - Support group and forum for IBD, Ulcerative Colitis and Crohn's Disease

Banrockstation · 01-17-2010, 02:12 PM

Hi

My wife has been posting on my behalf but I would really appreciate some help as I am feeling anxious about the next step? I really do not want to be on steroids for an longer that I need to be!

I am looking for advice on what's the next procedure, diagnosed oct 2009, flare free for about a month. Am currently taking pentasa, 100mg azathioprine and 10 mg prednisolone. I am just wondering as I have been flare free and the meds have obviously been working what the next step is? Do you carry on with the drugs previously prescribed or will they remove certain ones after a while? Also how often do you think I will need to have colonoscopies?

Thank you for you help

BS

Jettalady · 01-17-2010, 02:39 PM

Hi there and welcome BS, your wife is a sweetie for supporting you and getting information to see how she can help. Glad you are on here too!

We are not doctors but we can tell you of our own experiences and trials and errors. What works for one person may not for others. It really depends on the severity and location of your Crohn's. Prednisone is something I try to avoid too, because the sides are so great and when you taper, it comes back, usually. I am on Pentasa too, but instead of Pred I am on Entocort. Could be of some use for you because the side effects are way lower and itis for mild to moderate stages. If you taper down to 5mg it could come back if not see what your doctor says when you go off and you are hurting, what your next med should be. I have had Crohns for over 17 years so I know what I can and cant do. I have been having scopes once a year but it should only be done if you are flaring but it is wise within 2 years to have one to see how your Crohns is progressing. Not sure I answered all your questions or it helped, but keep us posted on your progress. When is your next appt with the GI?

Glad you found us!

kenny · 01-17-2010, 03:24 PM

Hey BS! Glad you decided to post.

This place has helped me a lot over the past 6 months in terms of understanding my condition. I hope it helps you as much too.

I found it difficult to understand at first but Crohns is not the kind of disease that is definitively diagnosed and treated. It is a disease only in the broader term. There is no known cause or cure. What we have to do is work backward from the symptoms and try to mediate them as best we can.

They typical treatment is

Roids and specialized ASA to reduce inflammation.
colonoscopy to visually inspect damage.
Either surgery to remove most damaged areas and/or drug(other) therapy to keep bowels open.
Extended drug(other) therapy and surgery to keep up with the disease.

Any Treatment has to start at the top though.

Lifestyle! mission impossible is letting go of stress.
Eating habits. Our cultural eating habits create most of the problem.

from there things branch out all over the place. but one thing always seems to come to the surface. You are what you eat.

Samantha · 01-17-2010, 05:32 PM

Hi BS! I think if you have a doctor that you trust , let him guide you to start with. As Kenny say's this is a wierd disease and a lot of it seems to be trial and error, unfortunately!

imisspopcorn · 01-17-2010, 06:00 PM

This is just a guess...most likely the doctor will try to wean you completetly off the steroid. Pentasa and Azathioprine are usually used on a longterm basis for maintanence....I hope you continue feeling good. I usually got rebound flaring once I was weaned of the steroid, but my disease was pretty advanced by then....Good luck and keep us posted.

01-17-2010, 02:12 PM	#1
Banrockstation New Member Join Date: Jan 2010 Posts: 14	What happens at next appointment re meds Hi My wife has been posting on my behalf but I would really appreciate some help as I am feeling anxious about the next step? I really do not want to be on steroids for an longer that I need to be! I am looking for advice on what's the next procedure, diagnosed oct 2009, flare free for about a month. Am currently taking pentasa, 100mg azathioprine and 10 mg prednisolone. I am just wondering as I have been flare free and the meds have obviously been working what the next step is? Do you carry on with the drugs previously prescribed or will they remove certain ones after a while? Also how often do you think I will need to have colonoscopies? Thank you for you help BS

01-17-2010, 02:39 PM	#2
Jettalady Your Story Forum Monitor Join Date: Oct 2009 Location: North Western, ONT Posts: 4,194	Hi there and welcome BS, your wife is a sweetie for supporting you and getting information to see how she can help. Glad you are on here too! We are not doctors but we can tell you of our own experiences and trials and errors. What works for one person may not for others. It really depends on the severity and location of your Crohn's. Prednisone is something I try to avoid too, because the sides are so great and when you taper, it comes back, usually. I am on Pentasa too, but instead of Pred I am on Entocort. Could be of some use for you because the side effects are way lower and itis for mild to moderate stages. If you taper down to 5mg it could come back if not see what your doctor says when you go off and you are hurting, what your next med should be. I have had Crohns for over 17 years so I know what I can and cant do. I have been having scopes once a year but it should only be done if you are flaring but it is wise within 2 years to have one to see how your Crohns is progressing. Not sure I answered all your questions or it helped, but keep us posted on your progress. When is your next appt with the GI? Glad you found us! __________________ Formerly: Pen Symptoms of Crohn's 35 years DX in 1993-2 resections, 1993 & 2003 Been on all drugs available in Canada VSL#3 900 Billion probiotic bacteria. Pred, 15mg dose until possible 3rd surgery ...winging it now.

01-17-2010, 03:24 PM	#3
kenny Senior Member Join Date: Aug 2009 Location: Brockville Ontario Posts: 774	Hey BS! Glad you decided to post. This place has helped me a lot over the past 6 months in terms of understanding my condition. I hope it helps you as much too. I found it difficult to understand at first but Crohns is not the kind of disease that is definitively diagnosed and treated. It is a disease only in the broader term. There is no known cause or cure. What we have to do is work backward from the symptoms and try to mediate them as best we can. They typical treatment is Roids and specialized ASA to reduce inflammation. colonoscopy to visually inspect damage. Either surgery to remove most damaged areas and/or drug(other) therapy to keep bowels open. Extended drug(other) therapy and surgery to keep up with the disease. Any Treatment has to start at the top though. Lifestyle! mission impossible is letting go of stress. Eating habits. Our cultural eating habits create most of the problem. from there things branch out all over the place. but one thing always seems to come to the surface. You are what you eat. __________________ Rectum? Damn near Killed'em Diagnosed July of 2009 / Surgery Oct 2009 / 175mg Imuran since Jan 2010

01-17-2010, 05:32 PM	#4
Samantha Member Join Date: Jan 2010 Location: South Africa Posts: 97	Hi BS! I think if you have a doctor that you trust , let him guide you to start with. As Kenny say's this is a wierd disease and a lot of it seems to be trial and error, unfortunately! __________________ Diagnosed Sept 2006 Currently on (just starting) 500mg Pentasa twice a day, Entocort enemas, Probiotics, Omega and Multi vits. Previously on 30Mg Prednisone, Asacol 2 a day, Asacol enemas, Entocort tablets, Azapress ( made me so sick).

01-17-2010, 06:00 PM	#5
imisspopcorn Punctuation Impaired Join Date: Aug 2009 Posts: 5,945	This is just a guess...most likely the doctor will try to wean you completetly off the steroid. Pentasa and Azathioprine are usually used on a longterm basis for maintanence....I hope you continue feeling good. I usually got rebound flaring once I was weaned of the steroid, but my disease was pretty advanced by then....Good luck and keep us posted. __________________ ~~~~~~~~~* Instead of hiding in the darkness of a grey cloud, why not look for the silver lining?