NEWBIE!! recently diagnosed Collagenous Colitis
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Angy,
IMO, all doctors should be required to have microscopic colitis for a period of at least several months, before they receive their license to practice. If they did, they would learn a little humility, they would be much more understanding, and they would probably be much more knowledgeable about MC and other inflammatory bowel diseases, also.
Tex
IMO, all doctors should be required to have microscopic colitis for a period of at least several months, before they receive their license to practice. If they did, they would learn a little humility, they would be much more understanding, and they would probably be much more knowledgeable about MC and other inflammatory bowel diseases, also.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
- jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
WELCOME KITTY!
You are where you should be. I am also a Newbie on this site from Michigan and I have also recently been DX's with Colagenous Colitis. OMG it seemed to take forever before anyone could tell me what I had. I have had my gallbladder removed, had both an EGD scope and colonoscopy done such as yourself. Every stool sample never gave my Dr's a DX's. Arghhhhhhh!!!!!!!!!! Since June of last year I have had a severe/not moderate weight loss. My weight has been at the lowest 90lbs however, just last week I am happy to say I'm at 96 1/4 lbs! Yeah!!!!
My GI has put me on Entocort 9mgs daily (3capsules) and even though I have tried to go down to 6mgs daily my body reacted badly and the BIG D came back full force. For this reason I am once again back on 9mgs daily. I also take AcepHex for my stomach because Prevacid many times gave me even more severe abdominal pain. I also take Tramadol/Ultram for pain and Hyoscyamine as needed for pain.
Any time you need to chat or vent just post on the message boards "Calling Jodi" or anyone here and all of us will do everything we can to help you get to your goal of remission. No question is too personal here and never think that we won't understand because you have now become part of a genuine family who truly cares and knows are to give support when needed. WE ARE THE POTTY PEOPLE!!!!!!!!!!! Here you don't have to feel ashamed, embarrased or alone.
Love and God Bless:
Jodi
You are where you should be. I am also a Newbie on this site from Michigan and I have also recently been DX's with Colagenous Colitis. OMG it seemed to take forever before anyone could tell me what I had. I have had my gallbladder removed, had both an EGD scope and colonoscopy done such as yourself. Every stool sample never gave my Dr's a DX's. Arghhhhhhh!!!!!!!!!! Since June of last year I have had a severe/not moderate weight loss. My weight has been at the lowest 90lbs however, just last week I am happy to say I'm at 96 1/4 lbs! Yeah!!!!
My GI has put me on Entocort 9mgs daily (3capsules) and even though I have tried to go down to 6mgs daily my body reacted badly and the BIG D came back full force. For this reason I am once again back on 9mgs daily. I also take AcepHex for my stomach because Prevacid many times gave me even more severe abdominal pain. I also take Tramadol/Ultram for pain and Hyoscyamine as needed for pain.
Any time you need to chat or vent just post on the message boards "Calling Jodi" or anyone here and all of us will do everything we can to help you get to your goal of remission. No question is too personal here and never think that we won't understand because you have now become part of a genuine family who truly cares and knows are to give support when needed. WE ARE THE POTTY PEOPLE!!!!!!!!!!! Here you don't have to feel ashamed, embarrased or alone.
Love and God Bless:
Jodi
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
Hi Kitty and Welcome
This is a wonderful site and helped me a great deal finding out information in the UK is a nightmare the NHS just does not seem to care how long we live with this condition or the effects it has on not only our physical but, mental well being.
Hope you start getting some relief soon and things improve for you.
This is a wonderful site and helped me a great deal finding out information in the UK is a nightmare the NHS just does not seem to care how long we live with this condition or the effects it has on not only our physical but, mental well being.
Hope you start getting some relief soon and things improve for you.
Hi NEWBIE!!! I'm in California waiting to go to a ball game with grands so taking a minute to scAn the board....WELCOME HOME!!!! MY TESTS FOR CELIAC WERE ALL NEGATIVE also. Just saw a new GI at a teaching hospital in Oregon (where I live) and she said pshaw to those tests......"even if we don't do a biopsy with endoscopy to prove it, your symptoms and other issues all point to it..." so I said maybe I have "celiac light?" i think so she says. Pay attention to what you read here and you will learn more than most docs about this disease. Oh...by the way...welcome!!
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Hi Guys!!
Thanks sunny ,jj, mini, jodibelle and jlh oh nd not to forget tex!!
Read all your input and I have to say guys thanks you so much!!
I am so glad i found this site and received so much response in only a short time. I had a look at the other topics and there is tremendous information there. What a wonderful community and family
hugs to you all!!
Thought i would just say that I am still to be put on medication. I have to arrange a visit for my gp next week. Im sure my consultant said he would be giving me azathioprine. I know it sounded with a zzz. Didnt take it in really. . Anyway hope to do some research on the drugs i get.
Again i wish to thank you for making me feel better knowing i am not alone!!
god!! i am so hungry i could eat a dead horse lol!!
been living off mixed nuts, bananas and pomegranite juice.
Thanks sunny ,jj, mini, jodibelle and jlh oh nd not to forget tex!!
Read all your input and I have to say guys thanks you so much!!
I am so glad i found this site and received so much response in only a short time. I had a look at the other topics and there is tremendous information there. What a wonderful community and family
hugs to you all!!
Thought i would just say that I am still to be put on medication. I have to arrange a visit for my gp next week. Im sure my consultant said he would be giving me azathioprine. I know it sounded with a zzz. Didnt take it in really. . Anyway hope to do some research on the drugs i get.
Again i wish to thank you for making me feel better knowing i am not alone!!
god!! i am so hungry i could eat a dead horse lol!!
been living off mixed nuts, bananas and pomegranite juice.
Angy ;)
Angy,
I don't like to second guess your doc, but Imuran, (azathioprine), is a very powerful immune system suppressant, originally developed for organ transplants. Normally, since it's such a powerful drug, it would be considered as a treatment for MC, only as a last resort, (after most of the other suitable meds have been tried, and found to not provide relief). You might be interested in this thread. FYI, be aware that Polly is a doctor, (specializing in pediatrics). She has some excellent food suggestions in her post there, also.
http://www.perskyfarms.com/phpBB2/viewt ... ght=imuran
There are other threads about Imuran, which you can locate by using the "Search" link, near the top of the page.
Hummmmmmm. Your menu could stand a few additions. LOL. Do simple things like meat and potatoes bother you? Bananas have a lot of fiber, and they gave me trouble when my gut was healing. In general, people with MC have to minimize their fiber intake, (in contrast with IBS), because fiber tends to irritate the colon, and make the D worse.
Tex
I don't like to second guess your doc, but Imuran, (azathioprine), is a very powerful immune system suppressant, originally developed for organ transplants. Normally, since it's such a powerful drug, it would be considered as a treatment for MC, only as a last resort, (after most of the other suitable meds have been tried, and found to not provide relief). You might be interested in this thread. FYI, be aware that Polly is a doctor, (specializing in pediatrics). She has some excellent food suggestions in her post there, also.
http://www.perskyfarms.com/phpBB2/viewt ... ght=imuran
There are other threads about Imuran, which you can locate by using the "Search" link, near the top of the page.
Hummmmmmm. Your menu could stand a few additions. LOL. Do simple things like meat and potatoes bother you? Bananas have a lot of fiber, and they gave me trouble when my gut was healing. In general, people with MC have to minimize their fiber intake, (in contrast with IBS), because fiber tends to irritate the colon, and make the D worse.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Tex,
not sure for definate but it sounded like that drug...ill find out soon enough though. Thanks for advice on that drug. Yes I do eat tatties!!(potatoes) and dairy products. I love cheese. etc .. Just today i stayed on nuts and juice...abdomen been a bit swollen and tender the last few days. Guess im gonna start a food diary. Normally eat a lot of veg and saladand have a varied diet mainly gluten free.
thanks tex
not sure for definate but it sounded like that drug...ill find out soon enough though. Thanks for advice on that drug. Yes I do eat tatties!!(potatoes) and dairy products. I love cheese. etc .. Just today i stayed on nuts and juice...abdomen been a bit swollen and tender the last few days. Guess im gonna start a food diary. Normally eat a lot of veg and saladand have a varied diet mainly gluten free.
thanks tex
Angy ;)
Angy,
Be sure to keep lettuce out of your salads, until after you heal, because almost none of us here can handle lettuce while we are so sensitive.
The really bad news, though, is that many of us here are casein intolerant, (dairy), and have to avoid all dairy products. Cheese has very little lactose, but it's loaded with casein.
We've found that one of the most effective, (and yet safe), medications for MC is Entocort, (budesonide). It works almost as well as Prednisone, but doesn't have near the risk of bad side effects as Prednisone. It's much safer than Prednisone, because it's encapsulated, so that it doesn't become activated until it reaches the ileum, (the lower third of the small intestine), and the colon, so not much of it gets into the bloodstream. It doesn't work for everyone, but many here have had very good success with it. Maybe your doctor would be willing to prescribe it for you to try. Entocort usually works in four to eight weeks, (some patients get results in a week or so), whereas azathioprine can take up to six months to provide control.
Tex
Be sure to keep lettuce out of your salads, until after you heal, because almost none of us here can handle lettuce while we are so sensitive.
The really bad news, though, is that many of us here are casein intolerant, (dairy), and have to avoid all dairy products. Cheese has very little lactose, but it's loaded with casein.
We've found that one of the most effective, (and yet safe), medications for MC is Entocort, (budesonide). It works almost as well as Prednisone, but doesn't have near the risk of bad side effects as Prednisone. It's much safer than Prednisone, because it's encapsulated, so that it doesn't become activated until it reaches the ileum, (the lower third of the small intestine), and the colon, so not much of it gets into the bloodstream. It doesn't work for everyone, but many here have had very good success with it. Maybe your doctor would be willing to prescribe it for you to try. Entocort usually works in four to eight weeks, (some patients get results in a week or so), whereas azathioprine can take up to six months to provide control.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
- jodibelle352
- Angel
- Posts: 610
- Joined: Sat Jun 21, 2008 10:57 pm
- Location: Michigan
- Contact:
Kitty:
Nobody says it better than Tex. I've been on Entocort 9mgs for 7 or 8 weeks now and got amazing results with the Big D. My last check up it was decided that my intestine still wasn't ready to go down to 6mgs yet because when I tried to lower the dosage as they suggested the Big D kicked right back in. Soooooooo they said your body isn't ready for the lower dosage yet. I also agree with Tex when it comes to the banana's, I can't eat them at all right now. My poor belly bloats up and then the abdominal pain starts and brings me to my knees. You may want to omit them from your diet at this time because even though we are all different sometimes in what we "can" or "can not" tolerate by deleting at least the banana's now you will beable to tell in a few days if your bloating and abdominal eases up and stops that now is not the time for that fruit.
All of us are learning from each other and if it hasn't been mentioned yet. Start keeping a journal with your feelings, daily routine, foods you've had during the day and of course medications. It's also a great way of writing down any questions you want to ask you GI dr. so you won't forget any.
Love and God Bless:
Jodi
Nobody says it better than Tex. I've been on Entocort 9mgs for 7 or 8 weeks now and got amazing results with the Big D. My last check up it was decided that my intestine still wasn't ready to go down to 6mgs yet because when I tried to lower the dosage as they suggested the Big D kicked right back in. Soooooooo they said your body isn't ready for the lower dosage yet. I also agree with Tex when it comes to the banana's, I can't eat them at all right now. My poor belly bloats up and then the abdominal pain starts and brings me to my knees. You may want to omit them from your diet at this time because even though we are all different sometimes in what we "can" or "can not" tolerate by deleting at least the banana's now you will beable to tell in a few days if your bloating and abdominal eases up and stops that now is not the time for that fruit.
All of us are learning from each other and if it hasn't been mentioned yet. Start keeping a journal with your feelings, daily routine, foods you've had during the day and of course medications. It's also a great way of writing down any questions you want to ask you GI dr. so you won't forget any.
Love and God Bless:
Jodi
May God and All His Angels, watchover, protect and guide you "One Day At A Time".
Welcome Angy! Keep searching this site - you'll find great information.
I agree with Tex that Entocort is the way to go. I've been on it for 11 months and I've been very pleased with it. No bad reactions and the D was better within 3-4 weeks.
Gloria
I agree with Tex that Entocort is the way to go. I've been on it for 11 months and I've been very pleased with it. No bad reactions and the D was better within 3-4 weeks.
Gloria
You never know what you can do until you have to do it.
Thank you for that guys!!! Tex. Marilyn,Gloria and jodibelle352.
Funny thing is I ate iceberg lettuce and felt really ugly inside.Never felt like that before with lettuce ,been eating it for donkeys years. Later I ate a probiotic yogurt cos these really helped my gut in the past. It helped a little but you know it kinda felt like the gluten type symptoms overall. Not sure whether the symptoms im getting are cc related or gluten related at the moment I just know the swelling is taking a while to go down. I have started a diary noting foodstuff. Also noting fevers cos im getting them a lot, but i am going through menopause as well so dont know if its that. Im also keeping a record of my migraine with aura to which i've had 20 yrs . i've managed to keep that under control with only codeine phosphate. I refuse to take migraine drugs as the side effects are quite bad.Had two bad migraines today....pwetty lights though lol!!!
so my puzzle at the moment is.....which symtom is coming from what ??? migraine...menopause...gluten.. and now cc.
any input i would appreciate guys...thanks
Funny thing is I ate iceberg lettuce and felt really ugly inside.Never felt like that before with lettuce ,been eating it for donkeys years. Later I ate a probiotic yogurt cos these really helped my gut in the past. It helped a little but you know it kinda felt like the gluten type symptoms overall. Not sure whether the symptoms im getting are cc related or gluten related at the moment I just know the swelling is taking a while to go down. I have started a diary noting foodstuff. Also noting fevers cos im getting them a lot, but i am going through menopause as well so dont know if its that. Im also keeping a record of my migraine with aura to which i've had 20 yrs . i've managed to keep that under control with only codeine phosphate. I refuse to take migraine drugs as the side effects are quite bad.Had two bad migraines today....pwetty lights though lol!!!
so my puzzle at the moment is.....which symtom is coming from what ??? migraine...menopause...gluten.. and now cc.
any input i would appreciate guys...thanks
Angy ;)