getting discouraged
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
getting discouraged
So, I've been taking Endocort, (generic), for about 5 months now, It seemed like i was starting to have a few formed bm's as time was going on, but now it seems like things are not getting better at all, 4-6 bm's a day, totally watery. I just feel so disappointed, and i feel real tired after each trip to the bathroom. Do these symptoms sound like what is to be expected with LC? I guess i just needed to hear some feedback from others that are in the same boat, to give me more patience with this situation. Thanks you
Hi,
Yes, those are typical symptoms. I'm sorry to hear that the Entocort hasn't provided any relief. LC causes extreme fatigue, because our body uses so much energy to fight the inflammation in our intestines. Entocort doesn't work for everyone, unfortunately. For many of us, Entocort will not stop the diarrhea unless we eliminate gluten, and dairy, and possibly other food sensitivities from our diet.
Tex
Yes, those are typical symptoms. I'm sorry to hear that the Entocort hasn't provided any relief. LC causes extreme fatigue, because our body uses so much energy to fight the inflammation in our intestines. Entocort doesn't work for everyone, unfortunately. For many of us, Entocort will not stop the diarrhea unless we eliminate gluten, and dairy, and possibly other food sensitivities from our diet.
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 Cincy,
How many mg of Entocort are you presently taking per day? Also when you started 5 months ago how many mg per day did your Doctor start you on? Can you elaborate a bit on your history on the drug? I.e. Did your Doctor start you on 3 pills per day totalling 9 mg? Maybe we can help. Brandy Also have you removed gluten (wheat) from your diet? Please keep drinking water to stay hydrated.
How many mg of Entocort are you presently taking per day? Also when you started 5 months ago how many mg per day did your Doctor start you on? Can you elaborate a bit on your history on the drug? I.e. Did your Doctor start you on 3 pills per day totalling 9 mg? Maybe we can help. Brandy Also have you removed gluten (wheat) from your diet? Please keep drinking water to stay hydrated.
Dear Cincy
It took me 2 to 3 months to see noticeable improvement with Entocort and a GF,DF,EF,LF,NF diet (basically Paleo+ no eggs). It was well over a year before I felt I was really settled down (and reduced my Entocort)......to a place where flares only lasted a couple of day and Entocort is only one every two or three days.
It takes time and you will have ups and downs. That is why I chose the motto "softly, softly catchee monkey"
Best wishes on your road to recovery, ant
It took me 2 to 3 months to see noticeable improvement with Entocort and a GF,DF,EF,LF,NF diet (basically Paleo+ no eggs). It was well over a year before I felt I was really settled down (and reduced my Entocort)......to a place where flares only lasted a couple of day and Entocort is only one every two or three days.
It takes time and you will have ups and downs. That is why I chose the motto "softly, softly catchee monkey"
Best wishes on your road to recovery, ant
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"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
I agree with Tex and others - Entocort should be used in conjunction with dietary changes. Once you start reducing the dosage, your symptoms will return if you haven't removed the foods and other items, such as supplements, that are irritating your gut.
I hope you can get your problems resolved quickly. It's not fun to be in the bathroom several times a day with diarrhea.
Gloria
I hope you can get your problems resolved quickly. It's not fun to be in the bathroom several times a day with diarrhea.
Gloria
You never know what you can do until you have to do it.
Hi Cincygirl,
I have LC and took entocort 9mg a day for almost a year. With the entocort alone, I didn't feel a difference at all. Then I got the advice to do a glutenfree, dairyfree and egg-free diet (I got the advice right here on this platform). The combination of my diet and entocort made me feel a lot better.
Don't be discouraged. It takes a while, but give yourself time to heal. Try to avoid stress, gluten, dairy and eggs. I also don't eat raw vegetables because I get stomach pains if I eat them.
I am happy to report that I have been LC-free for 3 months. I used to get flares every two weeks. These episodes were horrible. I couldn't eat anymore and drinking water was a problem too. I still have little pains sometimes (cramps), but this doenst' last long.
My advice to you is to try a glutenfree diet, a dairy free diet and an egg-free diet. Don't drink too much coffee (I drink two cups a day, decaf). All of this in combination with the entocort worked wonders for me.
Don't give up. We are all here for you! You are in my thoughts. Good luck!
Julie
I have LC and took entocort 9mg a day for almost a year. With the entocort alone, I didn't feel a difference at all. Then I got the advice to do a glutenfree, dairyfree and egg-free diet (I got the advice right here on this platform). The combination of my diet and entocort made me feel a lot better.
Don't be discouraged. It takes a while, but give yourself time to heal. Try to avoid stress, gluten, dairy and eggs. I also don't eat raw vegetables because I get stomach pains if I eat them.
I am happy to report that I have been LC-free for 3 months. I used to get flares every two weeks. These episodes were horrible. I couldn't eat anymore and drinking water was a problem too. I still have little pains sometimes (cramps), but this doenst' last long.
My advice to you is to try a glutenfree diet, a dairy free diet and an egg-free diet. Don't drink too much coffee (I drink two cups a day, decaf). All of this in combination with the entocort worked wonders for me.
Don't give up. We are all here for you! You are in my thoughts. Good luck!
Julie
It doesn't matter how many times you fall, but how many times you get up en go for it again. HOPE !!!!
Thank you Julie, I have not removed anything from my diet, but guess i should try that. I have been able to eat anything my whole life, and I am not over weight, I have been very lucky. So to diet of any kind seems awful to me, but i should try it. The dairy part will be the worst. But worth doing if it will help to feel better. Any idea of how long you remove foods that you notice a difference? THanks for your nice words
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
I believe that medication is useful while you make the necessary diet changes. Medication may help but without the diet changes there is a good chance you will relapse.
I love to eat but it certainly seems worthwhile to limit your diet in order to heal. Sti I have been free of all 4 of the major sensitivities for a year and while I will never go back to gluten, I seem to tolerate a small amount of egg and very small amounts of goat cheese.
I decided early on that If at all possible, diet change was easier on my body than steroids. So far so good.
Christine
I love to eat but it certainly seems worthwhile to limit your diet in order to heal. Sti I have been free of all 4 of the major sensitivities for a year and while I will never go back to gluten, I seem to tolerate a small amount of egg and very small amounts of goat cheese.
I decided early on that If at all possible, diet change was easier on my body than steroids. So far so good.
Christine
Hi Cincygirl,
I felt better within a week after I started the diet, of course this can vary from one person to another.
I admit that it is hard. But let me give you an example:
One month ago, I accidently ate gluten. I was sick within a day, and I mean really sick (9bm a day, feeling nauseaus, ...) . This lasted for a week.
So I would rather eliminate gluten and dairy products, then to be sick all the time.
It helped me to talk with a dietitian. She gave me a list of brands and pictures of GF products. She also gave me a list of all the stores in my region that sell GF products. Maybe a dietitian could help you to?
Good luck, and don't give up just yet. There are still so many things to try that could work for you.
You are still in my thoughts,
Julie
I felt better within a week after I started the diet, of course this can vary from one person to another.
I admit that it is hard. But let me give you an example:
One month ago, I accidently ate gluten. I was sick within a day, and I mean really sick (9bm a day, feeling nauseaus, ...) . This lasted for a week.
So I would rather eliminate gluten and dairy products, then to be sick all the time.
It helped me to talk with a dietitian. She gave me a list of brands and pictures of GF products. She also gave me a list of all the stores in my region that sell GF products. Maybe a dietitian could help you to?
Good luck, and don't give up just yet. There are still so many things to try that could work for you.
You are still in my thoughts,
Julie
It doesn't matter how many times you fall, but how many times you get up en go for it again. HOPE !!!!
Hi there,
I found going dairy free harder than gluten free but I promise you it gets easier. I've been DF for almost 5 months now. I noticed after removing Gluten that my nausea, bloating, pain and heartburn went down drastically. I then removed Dairy as I was still having D (hardest thing to get rid of for me...the Diarrhea) and my D got better but was still having it. I then went on Pepto for 3 months. Now that I'm 6 months GF, I believe my antibodies are low enough that I don't react. I'm now off meds and doing well except for the occasional heartburn. Probably from being a total pig! It's tough giving up so many foods, but it pays off in the long run. It is so nice to eat a meal and not get terrible abdominal pain and bloating afterwards and I haven't woken up with nausea in a while either. So worth it!
Hang in there! There is a list on this forum of all the foods that contain gluten, dairy and soy. Just FYI!
Terri
I found going dairy free harder than gluten free but I promise you it gets easier. I've been DF for almost 5 months now. I noticed after removing Gluten that my nausea, bloating, pain and heartburn went down drastically. I then removed Dairy as I was still having D (hardest thing to get rid of for me...the Diarrhea) and my D got better but was still having it. I then went on Pepto for 3 months. Now that I'm 6 months GF, I believe my antibodies are low enough that I don't react. I'm now off meds and doing well except for the occasional heartburn. Probably from being a total pig! It's tough giving up so many foods, but it pays off in the long run. It is so nice to eat a meal and not get terrible abdominal pain and bloating afterwards and I haven't woken up with nausea in a while either. So worth it!
Hang in there! There is a list on this forum of all the foods that contain gluten, dairy and soy. Just FYI!
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Hi, sorry to hear you're having problems! I agree with what everyone has said, and also reiterate what Julie said about it taking a while. I went GF/SF/DF/egg free--well, pretty much everything but rice, pork, almond milk, and three veggies I cook really well, pretty much from the get-go, after finding this site very soon after my diagnosis.
I started on Pepto, which wasn't helping alone, then went to Pepto with entercort, then up'ped my entercort, and have been very consistent for probably three months, and just recently have been experiencing significant process. My GI doesn't seem concerned and says it can take time for the colon to heal. (As I know others on this forum have said numerous times in other posts.) I also think it might depend on how long your colon's been in distress (although others would know more than I regarding this). For example, I had D problems for a year and a half before my diagnosis, so I expect things to take me a bit longer as far as healing goes.
I hope you begin to see progress as well. For me, I've had to learn to change my mindset a little. I think I expected health immediately. I've always been active, always prided myself in my stamina and good health, so couldn't quite except an illness I couldn't quickly bounce back from. But then my husband, a born encourager, reminded me of baby-step-improvements. :)
You will probably find lots of diet suggestions here. You may read the elimination diet. Here's what is working for me:
I have found I can't eat any raw fruits, and unless my veggies are cooked to near baby-food consistency, I have problems. My biggest frustration early on was the time spent cooking as processed foods were out and everything had to be overcooked. So now, I cook a big pot of rice, pork, and veggies, and let it simmer for a few hours or until it is fall-apart mushy. The only spice I add is salt. (I found I'm pretty sensitive to garlic, and before I realized this, added garlic salt to everything. No wonder I wasn't getting better!) Then, I always have safe food ready to heat up.
Yes, it's bland and boring, but I'm desperate to get better and know if I don't stick with this, I will undo all the hard work I've done. And besides, food is a temporary pleasure. I'd rather enjoy life! ;)
I started on Pepto, which wasn't helping alone, then went to Pepto with entercort, then up'ped my entercort, and have been very consistent for probably three months, and just recently have been experiencing significant process. My GI doesn't seem concerned and says it can take time for the colon to heal. (As I know others on this forum have said numerous times in other posts.) I also think it might depend on how long your colon's been in distress (although others would know more than I regarding this). For example, I had D problems for a year and a half before my diagnosis, so I expect things to take me a bit longer as far as healing goes.
I hope you begin to see progress as well. For me, I've had to learn to change my mindset a little. I think I expected health immediately. I've always been active, always prided myself in my stamina and good health, so couldn't quite except an illness I couldn't quickly bounce back from. But then my husband, a born encourager, reminded me of baby-step-improvements. :)
You will probably find lots of diet suggestions here. You may read the elimination diet. Here's what is working for me:
I have found I can't eat any raw fruits, and unless my veggies are cooked to near baby-food consistency, I have problems. My biggest frustration early on was the time spent cooking as processed foods were out and everything had to be overcooked. So now, I cook a big pot of rice, pork, and veggies, and let it simmer for a few hours or until it is fall-apart mushy. The only spice I add is salt. (I found I'm pretty sensitive to garlic, and before I realized this, added garlic salt to everything. No wonder I wasn't getting better!) Then, I always have safe food ready to heat up.
Yes, it's bland and boring, but I'm desperate to get better and know if I don't stick with this, I will undo all the hard work I've done. And besides, food is a temporary pleasure. I'd rather enjoy life! ;)
thank you everyone for your great input. I try not to get down, but then for example i got a bad bad cold, and wow the D was awful, i bet i went up to 10 times a day. I have had this for a week now, and think i may go see the doc today. May be a sinus infection. I am just wiped out, nothing sounds good to eat, then what to eat. It's overwhelming. I know others have things way worse than me, i am a big baby, and like to whine! Thank you all