newly diagnosed with mc
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newly diagnosed with mc
I have been on Entocort for 3 weeks now and although the first two weeks were good there are signs of the old symptoms popping up. The Ento has kept the diarrhea at bay but now I have upper abdominal and radiating back pain. Is this normal? What if the Entocort does not work?
Hi Enuf,
Welcome to the board. Well, that's a pretty brief description of symptoms, but any time the pain is right under the rib cage, and it radiates all the way to the back, it suggests gallbladder disease. If the symptoms appear soon after eating, become intense, and then gradually fade away, a few hours later, (say, 3 to 6 hours later), that sorta confirms that it could be a gallbladder problem, because the symptoms are caused by the inability to digest fat in the diet, and after the stomach finishes emptying, and the chyme makes it's way on down the small intestine, the problem goes away, (until the next meal). Of course, it's impossible to accurately diagnose gallbladder disease over the internet, and I'm not a doctor, anyway, so that's just a guess, but if it fits, you might ask your doctor about checking it out. Gallbladder problems are quite common for patients who have MC.
If the Entocort does not work, then you can try another medication, (such as one of the 5-ASA meds), or something much stronger. Some of us here control our MC symptoms by diet alone, and many of us use a combination of Entocort and diet, eventually weaning off the Entocort, as the diet allows the gut to heal, (or at least reducing the dose of Entocort down to 1 capsule per day, or less. After that, many of us are usually able to maintain remission by diet alone.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the board. Well, that's a pretty brief description of symptoms, but any time the pain is right under the rib cage, and it radiates all the way to the back, it suggests gallbladder disease. If the symptoms appear soon after eating, become intense, and then gradually fade away, a few hours later, (say, 3 to 6 hours later), that sorta confirms that it could be a gallbladder problem, because the symptoms are caused by the inability to digest fat in the diet, and after the stomach finishes emptying, and the chyme makes it's way on down the small intestine, the problem goes away, (until the next meal). Of course, it's impossible to accurately diagnose gallbladder disease over the internet, and I'm not a doctor, anyway, so that's just a guess, but if it fits, you might ask your doctor about checking it out. Gallbladder problems are quite common for patients who have MC.
If the Entocort does not work, then you can try another medication, (such as one of the 5-ASA meds), or something much stronger. Some of us here control our MC symptoms by diet alone, and many of us use a combination of Entocort and diet, eventually weaning off the Entocort, as the diet allows the gut to heal, (or at least reducing the dose of Entocort down to 1 capsule per day, or less. After that, many of us are usually able to maintain remission by diet alone.
Again, welcome aboard, and please feel free to ask anything.
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.
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Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Hi Enuf and Welcome Aboard our little internet life boat. I was wondering if you had made any dietary changes when you started the entocort or if you have eaten anything recently that you didn't eat in the last few weeks. It could be that you are getting pain from gas from something you have eaten that you can't tolerate ( undercooked or raw veggies? Salad? ). How long does it last?
I didn't experience anything like that with Entocort ( it worked for me extremly quickly but I had already been trying to manage my MC with diet alone, though not too successfully, for 5 months. ) Maybe someone who has had similar pains will read your post and comment.
Feel free to ask any other questions you may have. And read lots.. there is a wealth of knowledge on here.
Regards,
Linda
I didn't experience anything like that with Entocort ( it worked for me extremly quickly but I had already been trying to manage my MC with diet alone, though not too successfully, for 5 months. ) Maybe someone who has had similar pains will read your post and comment.
Feel free to ask any other questions you may have. And read lots.. there is a wealth of knowledge on here.
Regards,
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Welcome Enuf, You've found the right place to figure things out, but it does take time and effort. Diet changes are critical even with medication. I was on entocort with diet changes two different times before I reached remission over about a time period of a year and a half. The diet changes (gf, df, sf) will always be a part of my life. Getting tested through Enterolab will help give you definite answers to your main sensitivities. Be patient and learn all you can here and things will get better, JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome Enuf.
You have found the right place to ask questions and research our extensive database on the history and ways to deal with this disease. I also want to echo the question of whether you have made any dietary changes since this seems to be key for a lot of our members. Some members are medication only, some with diet and medication and some with just diet.
Please stick around and fill us in a bit more on your background.
Maggie
You have found the right place to ask questions and research our extensive database on the history and ways to deal with this disease. I also want to echo the question of whether you have made any dietary changes since this seems to be key for a lot of our members. Some members are medication only, some with diet and medication and some with just diet.
Please stick around and fill us in a bit more on your background.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Dear Enuf
Welcome from Hong Kong.
You will find that many of us need to use diet (as well as Entocort) to slowly reach remission. Others do it with diet alone. Very few here have reached long term remission with Entocort (or any other meds) when not combined with diet.
Best wishes on finding the right path on your journey to remission. I am sure the information and wisdom here will help you, best ant
Welcome from Hong Kong.
You will find that many of us need to use diet (as well as Entocort) to slowly reach remission. Others do it with diet alone. Very few here have reached long term remission with Entocort (or any other meds) when not combined with diet.
Best wishes on finding the right path on your journey to remission. I am sure the information and wisdom here will help you, best ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Hi Enuf,
I have had the pain you describe many times. I do not have gallbladder problems.
I believe you are are eating foods you cannot tolerate. Like (ant) said, Entocort only works if you combine it with discontinuation of foods that your body cannot tolerate. Please eliminate all breads/wheat, and all dairy, except maybe eggs, and soy, and see if you feel better.
The very best thing you can do is to start a food diary, so you can narrow down the foods that are making you sick.
Good luck,
karen
I have had the pain you describe many times. I do not have gallbladder problems.
I believe you are are eating foods you cannot tolerate. Like (ant) said, Entocort only works if you combine it with discontinuation of foods that your body cannot tolerate. Please eliminate all breads/wheat, and all dairy, except maybe eggs, and soy, and see if you feel better.
The very best thing you can do is to start a food diary, so you can narrow down the foods that are making you sick.
Good luck,
karen
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi enuf... I love your user name... very appropriate for this disease.
You have already received some excellent advice. The Entocort does help but the main help will come from figuring out which foods are bothering you. Unfortunately that's just part of MC.
For most it includes wheat products.. you know bread, pastries, pasta, cake... all the good stuff and it seems like just about everything in the grocery store has the ingredients gluten or wheat or wheat flour in the list. Those are the ones to avoid. Along with gluten many here also react to soy and possible dairy.
There are tests that you can have done to help you determine that category of foods that your body is reacting to. In conjunction with those tests a food diary is very helpful.
To start with keep up with the entocort as prescribed then eliminate gluten... this will give you the quickest relief. You should be ready that it will take weeks for the Entocort and diet to really begin to show benefits. During that time keep a food diary and add ingredients slowly to have time to judge how you react to them. I know for me the biggest issues were gluten and soy products and any raw fruits or veggies. Cooked ones were fine.
Again welcome to the group
--Joe
You have already received some excellent advice. The Entocort does help but the main help will come from figuring out which foods are bothering you. Unfortunately that's just part of MC.
For most it includes wheat products.. you know bread, pastries, pasta, cake... all the good stuff and it seems like just about everything in the grocery store has the ingredients gluten or wheat or wheat flour in the list. Those are the ones to avoid. Along with gluten many here also react to soy and possible dairy.
There are tests that you can have done to help you determine that category of foods that your body is reacting to. In conjunction with those tests a food diary is very helpful.
To start with keep up with the entocort as prescribed then eliminate gluten... this will give you the quickest relief. You should be ready that it will take weeks for the Entocort and diet to really begin to show benefits. During that time keep a food diary and add ingredients slowly to have time to judge how you react to them. I know for me the biggest issues were gluten and soy products and any raw fruits or veggies. Cooked ones were fine.
Again welcome to the group
--Joe
Joe
Thank you to everyone who responded. I am now on my 7th week of Entocort and have begun a food diary. It is hard for me to imagine being intolerant of any foods since I have never had any issues my whole life. Then at 45 I lose my mom and my body started to fall apart. I am reluctant to be tested but I can not live with the discomfort I had prior to starting Entocort. What is this Enterolab that I see mentioned in posts? Has anyone had any side effects from Entocort, like being dizzy or dull ache in tummy at night? I had an ultrasound of my gallbladder and that looked normal.
I was on Entocort for 6 weeks and I started to feel relief on my second week. It only lasted about 3 days and I was back to the D. I have been gluten free for the past 3 years bc I have celiac's disease and since I have found out about my LC i have been TRYING to be dairy free and soy free. However I am not as strict as I am with gluten. I changed meds about 2 weeks ago and am now on Asacol HD. On about day 3 i started feeling better and was having normal stools and have been good ever since (fingers crossed).
I would def. try and eliminate certain trigger foods and see how you feel. Or maybe ask your GI for a different med?
Good Luck
Jenny
I would def. try and eliminate certain trigger foods and see how you feel. Or maybe ask your GI for a different med?
Good Luck
Jenny
Yes, some of us have had to either reduce the dosage, or discontinue taking Entocort, because of neurological symptoms, such as dizziness, balance issues, vision problems, etc.enuf4me wrote:Has anyone had any side effects from Entocort, like being dizzy or dull ache in tummy at night?
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.
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Foxnhound8
- Adélie Penguin
- Posts: 84
- Joined: Thu Dec 30, 2010 7:34 am
Dear Enuf, welcome. I am an Entocort queen with very good symptom control provided I stay on chicken, rice, potatoes...I had a brain fart yesterday at dinner and ate some of the stir-fry I made for my family and spent the night with nausea, gut pain and then D all this morning. I had a similar beginning, too. A sudden change in my family situation, then explosive D. Never had any kind of problem before that. Keep the food simple for awhile and add different foods back slowly.
foxnhound
foxnhound
Dear Enuf,
I am new also as I just posted yesterday for the first time. I too have terrible gas pains under ribs at times and under my shoulder blades. I am not on any meds yet because I don't go and discuss results with my GI until April. I have gone GF and DF and will be also trying a low fiber diet to try and alleviate some of the gas pains. I also had a gallbladder ultra sound and it was negative but I know that sometimes, sludge in the gallbladder will not show up on an ultra sound and must be seen through a Hida-scan. I am hoping the diet will work and am trying that first before I go back to the GI doc.
Did you have the pains before the Entocort?
Sondra
I am new also as I just posted yesterday for the first time. I too have terrible gas pains under ribs at times and under my shoulder blades. I am not on any meds yet because I don't go and discuss results with my GI until April. I have gone GF and DF and will be also trying a low fiber diet to try and alleviate some of the gas pains. I also had a gallbladder ultra sound and it was negative but I know that sometimes, sludge in the gallbladder will not show up on an ultra sound and must be seen through a Hida-scan. I am hoping the diet will work and am trying that first before I go back to the GI doc.
Did you have the pains before the Entocort?
Sondra
Please consider rescuing a dog from your local shelter today.
Sondra,
Your are smart to start a diet modification before you start your meds. I never altered my diet because I was told diet had nothing to do with it. I now realize that it does. I did have pain under my ribs prior to starting Entocort, it radiated to my back. It has since stopped. I have lowered my dose to 6mg daily of Entocort and cut out gluten from my diet. Time will tell wether this works or not.
Leslie
Your are smart to start a diet modification before you start your meds. I never altered my diet because I was told diet had nothing to do with it. I now realize that it does. I did have pain under my ribs prior to starting Entocort, it radiated to my back. It has since stopped. I have lowered my dose to 6mg daily of Entocort and cut out gluten from my diet. Time will tell wether this works or not.
Leslie