Grannyh,
I appreciate that you speak out about the benefits of Entocort and that it can be another way to manage this disease. Sometimes it's necessary to use medications and other treatments to help us along.
Gloria
How long does it take for Entocort to start working?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Our children and grandchildren live in another state. There is no way we could visit them before I started using entocort. My diet was severly limited and the travel time was an entire day. I have admitted before that I don't like to cook. I spent my life cooking and sending my husband out for ingredients before entocort. It can take up to a year to get your life back on diet alone and then you have to maintain that diet.
I don't know how I would feel about using medications for CC if I was a youngster and still of child bearing age and wanted children. However, I am old...LOL and like the freedom the entocort has given me with no side effects in 5 years. I know some have had success with asacol... but it made me extremely ill. There is no one medication with LITTLE RISK that will help everyone. There also is no ONE DIET that will help everyone who comes here. Each of us seems to have several things we can't tolerate once CC invades our life.
The beauty of this site is the support and hope it brings knowing that there are people who have gotten their life back either by diet or medication. I got NO support from many many doctors.. they also gave me no hope.. live with it was the most frequent answer. Most could not believe the number of trips I was making to the john. Of course I had to be exaggerating!
A diagnosis of IBS is a doctor's way of saying, I don't know...!! They have a bunch of things you can try... but if they don't work then the doctors I ran into claimed I was somehow causing my own problems.
I don't know if things have changed.. but 8 years ago if a doctor had even heard of collagenous colitis or looked it up.. they claimed it was rare and there was NO treatment.
grannyh
I don't know how I would feel about using medications for CC if I was a youngster and still of child bearing age and wanted children. However, I am old...LOL and like the freedom the entocort has given me with no side effects in 5 years. I know some have had success with asacol... but it made me extremely ill. There is no one medication with LITTLE RISK that will help everyone. There also is no ONE DIET that will help everyone who comes here. Each of us seems to have several things we can't tolerate once CC invades our life.
The beauty of this site is the support and hope it brings knowing that there are people who have gotten their life back either by diet or medication. I got NO support from many many doctors.. they also gave me no hope.. live with it was the most frequent answer. Most could not believe the number of trips I was making to the john. Of course I had to be exaggerating!
A diagnosis of IBS is a doctor's way of saying, I don't know...!! They have a bunch of things you can try... but if they don't work then the doctors I ran into claimed I was somehow causing my own problems.
I don't know if things have changed.. but 8 years ago if a doctor had even heard of collagenous colitis or looked it up.. they claimed it was rare and there was NO treatment.
grannyh
Dear Grannyh, I'm with you all the way! I'm on 1 entocort right now and hope to get off, but if I don't I'm grateful it's there. I've got a lot of important professional and social events in my life the next few months and need the security of entocort. When I get into a flare, I get so sick and weak I can't function in my job or family. I'm doing all the dietary changes also with some supplements that help me. I'm grateful I can take entocort without side effects. Like you, asacol made me even sicker. We really all do have to find our own way through this with the help and experience of everyone here. I agree with everything you've said. Thank you! JoAnn
JoAnn,
This is a great place. Where else can you go for to find relief for "monkey butt"? Where else can you tell stories throwing your underwear away at Walmart? Where else can you say Happiness is a dry phart .. and people know how really happy you are?
The humor and support here is precious and I don't know anywhere else where there are so many people with so many solutions to the same illness.
Tex, well he deserves the nobel prize for hosting and informing us, IMO!
grannyh
This is a great place. Where else can you go for to find relief for "monkey butt"? Where else can you tell stories throwing your underwear away at Walmart? Where else can you say Happiness is a dry phart .. and people know how really happy you are?
The humor and support here is precious and I don't know anywhere else where there are so many people with so many solutions to the same illness.
Tex, well he deserves the nobel prize for hosting and informing us, IMO!
grannyh
grannyh,
First of all, you sound really frustrated and I can truly identify with that, as I'm sure we all can.
Being someone who has been through the wars with this for a long time, and being relatively new here, not knowing you, I just really feel sad by what you've written. Have you ever considered taking L-Glutamine while you are taking Entocort? It's not expensive and it was my first and successful choice of treatment for my MC - both LC and CC - after much research and working with my ND. I will fully acknowledge that I am probably the ultimate western med hater here, but only because I've had over 15 years of being misdiagnosed and refusing drugs that could hurt me because I KNEW there was a reason I was in pain. My pain stopped after I stopped gluten and went the glutamine/probiotic route. I don't know what your genes say or if you've been tested, I just love what glutamine has done for me and I cannot understand why anyone wouldn't use it as their first line of treatment. It's worked so well for me and I know we're all different genetically, so maybe we wouldn't have the same outcome, but I pretty much eat everything but gluten now and I'm doing great. Glutamine is something our bodies produce naturally, it's only when allergens enter the picture and prevent it's uptake that we get glutamine shortage.
I know I'm stepping on toes by being so anti-steroid, but it comes from YEARS of research that spans back to when I had lead poisoning in 1992, and not discovering the cause of my "symptoms" til "98" and then being prescribed endless drugs I refused to take to treat my arthritis that I tested negative for. I also have a close friend whose life was pretty well destroyed by Prednisone and she lives a reclusive and depressing life on SSI now. I'll occasionally put a steroid on a skin issue, but there is no way I would ingest it.
You just sound so sad, it breaks my heart.
Connie
First of all, you sound really frustrated and I can truly identify with that, as I'm sure we all can.
Being someone who has been through the wars with this for a long time, and being relatively new here, not knowing you, I just really feel sad by what you've written. Have you ever considered taking L-Glutamine while you are taking Entocort? It's not expensive and it was my first and successful choice of treatment for my MC - both LC and CC - after much research and working with my ND. I will fully acknowledge that I am probably the ultimate western med hater here, but only because I've had over 15 years of being misdiagnosed and refusing drugs that could hurt me because I KNEW there was a reason I was in pain. My pain stopped after I stopped gluten and went the glutamine/probiotic route. I don't know what your genes say or if you've been tested, I just love what glutamine has done for me and I cannot understand why anyone wouldn't use it as their first line of treatment. It's worked so well for me and I know we're all different genetically, so maybe we wouldn't have the same outcome, but I pretty much eat everything but gluten now and I'm doing great. Glutamine is something our bodies produce naturally, it's only when allergens enter the picture and prevent it's uptake that we get glutamine shortage.
I know I'm stepping on toes by being so anti-steroid, but it comes from YEARS of research that spans back to when I had lead poisoning in 1992, and not discovering the cause of my "symptoms" til "98" and then being prescribed endless drugs I refused to take to treat my arthritis that I tested negative for. I also have a close friend whose life was pretty well destroyed by Prednisone and she lives a reclusive and depressing life on SSI now. I'll occasionally put a steroid on a skin issue, but there is no way I would ingest it.
You just sound so sad, it breaks my heart.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
Sorry if I sounded frustrated.. I forget what I write on different threads. I am far from frustrated.. I have my life back.. have had it back for several years now.
Only when I eat too much of something I shouldn't do I have any problems.. but a diaper or two a year I can live with now. Especially since 8 years ago I was going through a huge pack of adult diapers every day or two.
I do understand the frustration of new comers though. We didn't ask for CC or MC.. it just barged into our lives.. there was no place to look for help and hope til I found this site.
Fiber, nuts, probiotics, gluten, soy, dairy.. they all did me in way back then..
Since we with these microscopic colitis illnesses have absorption problems I am not worried about entocort. I take one 3mg capsule a day. A normal person absorbs about 10% of that.. I probably absorb less. Entocort doesn't release the synethetic steroid until it hits where it will do it's best work.
I know the dangers of prednisone... a doctor prescribed the wrong dosage of prednisone pack for a back problem and darn near killed me.. blood pressure was about 200 over something low... ended up in the emergency room and then was hospitalized for several days til they got my blood pressure under control. The only up side was that I didn't need the entocort for about 3 months..LOL When the prednisone wore off.. D came back and I started entocort again.
There are still doctors out there prescribing prednisone for various periods of time for colitis.. the patient does get relief for awhile, as I did, but then they need to start again on a high daily dosage and wean themselves off. Prednisone can be pretty nasty stuff. The ONLY thing going for it... it is cheap.
grannyh
Only when I eat too much of something I shouldn't do I have any problems.. but a diaper or two a year I can live with now. Especially since 8 years ago I was going through a huge pack of adult diapers every day or two.
I do understand the frustration of new comers though. We didn't ask for CC or MC.. it just barged into our lives.. there was no place to look for help and hope til I found this site.
Fiber, nuts, probiotics, gluten, soy, dairy.. they all did me in way back then..
Since we with these microscopic colitis illnesses have absorption problems I am not worried about entocort. I take one 3mg capsule a day. A normal person absorbs about 10% of that.. I probably absorb less. Entocort doesn't release the synethetic steroid until it hits where it will do it's best work.
I know the dangers of prednisone... a doctor prescribed the wrong dosage of prednisone pack for a back problem and darn near killed me.. blood pressure was about 200 over something low... ended up in the emergency room and then was hospitalized for several days til they got my blood pressure under control. The only up side was that I didn't need the entocort for about 3 months..LOL When the prednisone wore off.. D came back and I started entocort again.
There are still doctors out there prescribing prednisone for various periods of time for colitis.. the patient does get relief for awhile, as I did, but then they need to start again on a high daily dosage and wean themselves off. Prednisone can be pretty nasty stuff. The ONLY thing going for it... it is cheap.
grannyh
grannyh,
So, have you ever tried amino acids like glutamine? Not to beat this like a dead horse, but if you are still symptomatic after all this time and are still using Entocort, and I have no idea how long you've been dosed on this med, would you ever consider at least backpacking Glutamine on it? Glutamine actually heals the villae that are damaged by MC.
I realize I'm a newcomer here, but I'm also one of few who have tried Glutamine that post here. I am hardly a newcomer to D and pain, just wasn't dx/w/MC til last Oct., but I KNEW I had something that could be explained for 15 yr's, I was just waiting for an analysis.
Connie
So, have you ever tried amino acids like glutamine? Not to beat this like a dead horse, but if you are still symptomatic after all this time and are still using Entocort, and I have no idea how long you've been dosed on this med, would you ever consider at least backpacking Glutamine on it? Glutamine actually heals the villae that are damaged by MC.
I realize I'm a newcomer here, but I'm also one of few who have tried Glutamine that post here. I am hardly a newcomer to D and pain, just wasn't dx/w/MC til last Oct., but I KNEW I had something that could be explained for 15 yr's, I was just waiting for an analysis.
Connie
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
I have tried glutamine. I have no major problems unless I overdue on something like nuts or dunkin donuts. I take one pill a day. Entocort is not the same as prednisone.
I started with three capsules a day (5 years ago)and have been on only one a day for over a year.
The beauty of this site is that we I have different solutions for ourselves and we can suggest things for people to try.
I belonged to this group when it was on another site as well. I found tons of things to try. I spent three years trying things before I agreed to try asacol and then entocort.
I really am a happy camper:)
grannyh
I started with three capsules a day (5 years ago)and have been on only one a day for over a year.
The beauty of this site is that we I have different solutions for ourselves and we can suggest things for people to try.
I belonged to this group when it was on another site as well. I found tons of things to try. I spent three years trying things before I agreed to try asacol and then entocort.
I really am a happy camper:)
grannyh
I am with grannyh/JoAnn and Connie! Entocort has allowed me to be functional, thank God, but I have just started again with the L-Glutamine and continue with 1 Entocort a day to see if this will make the difference. I just got through reading an article on L-Glutamine that it also will help people with Candida which my daughter has suffered with for 4 years.
There is no one solution and I am willing to take the great advice from all on this board. I have modified my diet drastically and still struggle. Patience, patience, patience!
Ginny
There is no one solution and I am willing to take the great advice from all on this board. I have modified my diet drastically and still struggle. Patience, patience, patience!
Ginny
Hi all, just for the record, I have and do use glutamine. It does not give me the results it gives Connie. In fact the higher doses cause me problems. It's been said many many times on this board that we are all different and different supplements, drugs, etc. affect us differently. I appreciate everyone's input because it gives me things to try and hope to hang on to. By the way grannyh, I think you sound very happy and you sound like you are enjoying life. You inspire me. JoAnn
This site is the major reason I have a life today!
It seems like forever ago that I had no hope for a return to anything like normal. There is an old saying.. that when one door closes another opens. A friend added something to that statement that sure fits our search for normal with colitis... they told me yes.. when one door closes another door does open.. but the hallway between can be real hell...LOL
grannyh
It seems like forever ago that I had no hope for a return to anything like normal. There is an old saying.. that when one door closes another opens. A friend added something to that statement that sure fits our search for normal with colitis... they told me yes.. when one door closes another door does open.. but the hallway between can be real hell...LOL
grannyh