Hello everyone,
I have just started my treatment with Entocort and I know I have to be patient for this to work. I have not eaten anything since Sunday, because I just don't dare to. I have 3 astronaut food bottles a day and some glutenfree bread at the moment. I feel I am just getting weaker and more fatigued. How did you cope with this fatigue, does it improve after the treatment with Entocort?
Is cafeïne bad for us, can I have decafeïnated coffee? Is smoking bad for us, should i stop?
thanks for your advice,
Annie
Still many questions about fatigue, cafeïne, smoking etc.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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belgiangirl
- Little Blue Penguin
- Posts: 26
- Joined: Thu Jun 03, 2010 3:53 pm
Dear Annie
My experience is it took about 10 days of Entocort at 9mg and day to start feeling a bit better. And yes fatigue was a symptom for me (and many others) and is likely the last to get better.
What is in your "astronaut food"? I suggest you check the ingredients to make sure it does not contain foods you are intolerant or sensitive to. The safest thing at this stage is plan rice, fish and/or chicken. Coffee is somthing I have just started again (but I am 11 months into diet and Entocort treatment). IMHO I would not try out coffee just yet. Tex will I am sure give you an answer on the smoking.
Finally, if you can take pepto bismal (up to 9 a day) it gave me some relatively quick relief, but it is not good to take it for more than a couple of months.
Hope this helps, best ant
My experience is it took about 10 days of Entocort at 9mg and day to start feeling a bit better. And yes fatigue was a symptom for me (and many others) and is likely the last to get better.
What is in your "astronaut food"? I suggest you check the ingredients to make sure it does not contain foods you are intolerant or sensitive to. The safest thing at this stage is plan rice, fish and/or chicken. Coffee is somthing I have just started again (but I am 11 months into diet and Entocort treatment). IMHO I would not try out coffee just yet. Tex will I am sure give you an answer on the smoking.
Finally, if you can take pepto bismal (up to 9 a day) it gave me some relatively quick relief, but it is not good to take it for more than a couple of months.
Hope this helps, best ant
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belgiangirl
- Little Blue Penguin
- Posts: 26
- Joined: Thu Jun 03, 2010 3:53 pm
Astronaut food
Dear Ant,
Thank you for your reply.
I just checked the ingredients of Fortimel and one of them is proteïnes of cow milk, as I am also allergic to lactose that is why I cannot take it.
I am going to follow your advice and have plain fish or chicken with rice.
I just found some lactosefree white cheese and I will have that with some glutenfree bread today. It is a search, but thanks to all of you i will get there!
Love,
annie
Thank you for your reply.
I just checked the ingredients of Fortimel and one of them is proteïnes of cow milk, as I am also allergic to lactose that is why I cannot take it.
I am going to follow your advice and have plain fish or chicken with rice.
I just found some lactosefree white cheese and I will have that with some glutenfree bread today. It is a search, but thanks to all of you i will get there!
Love,
annie
Hello Annie,
for a lot of us, it is not just lactose but also casein, a protein in Milk. So at the moment it could be wise not only to avoid the gluten but also all dairy products. The quickest way to find out your intolerances is the Enterolab testing.
A variant on the food advice of ant is the "BRAT"diet: bananas, rice, apple sauce and tea. Make small portions of all your meals, If you want to include vegetables only do it in small quantities (I started with a 100 gram with every meal).
The fatigue is one of things almost everybody here struggles with. After starting a diet and getting better, this is one of the last symptoms to disappear. I was diagnosed in the end of September last year and started my diet after an enterolab testing mid November. I started to feel better quite soon, only the fatigue only got better in the last couple of weeks. An advice, for what it is worth, don't try to fight it. Take your rest, live for the time being a quiet life. The fatigue is not something you can fight. The harder you fight it, the worse it get (personal experience). Acceptance and respecting the limits of your body works much better (but I know that is easier said than done)
The coffee, ever considered decaf? Some have troubles with coffee here, other say it doesn't bother them. I changed to decaf coffee, also because the caffeine keeps me awake.
Smoking, I have no idea for MC. I know some research is done in the relation chron/US and smoking. In one case (I thought it was crohn) smoking made the disease a bit worse. On the other hand (UC but not sure) for some smoking seems to have a slightly positive influence on
the disease
How is the entocort going? What is your dosage? No side effect hopefully.
I hope you feel a bit better soon.
harma
for a lot of us, it is not just lactose but also casein, a protein in Milk. So at the moment it could be wise not only to avoid the gluten but also all dairy products. The quickest way to find out your intolerances is the Enterolab testing.
A variant on the food advice of ant is the "BRAT"diet: bananas, rice, apple sauce and tea. Make small portions of all your meals, If you want to include vegetables only do it in small quantities (I started with a 100 gram with every meal).
The fatigue is one of things almost everybody here struggles with. After starting a diet and getting better, this is one of the last symptoms to disappear. I was diagnosed in the end of September last year and started my diet after an enterolab testing mid November. I started to feel better quite soon, only the fatigue only got better in the last couple of weeks. An advice, for what it is worth, don't try to fight it. Take your rest, live for the time being a quiet life. The fatigue is not something you can fight. The harder you fight it, the worse it get (personal experience). Acceptance and respecting the limits of your body works much better (but I know that is easier said than done)
The coffee, ever considered decaf? Some have troubles with coffee here, other say it doesn't bother them. I changed to decaf coffee, also because the caffeine keeps me awake.
Smoking, I have no idea for MC. I know some research is done in the relation chron/US and smoking. In one case (I thought it was crohn) smoking made the disease a bit worse. On the other hand (UC but not sure) for some smoking seems to have a slightly positive influence on
the disease
How is the entocort going? What is your dosage? No side effect hopefully.
I hope you feel a bit better soon.
harma
Hi Annie,
Fatigue is definitely connected with this disease, but part of your fatigue is also almost surely due to not eating. Without food, we quickly run short of energy.
The decision on whether or not to drink coffee, depends on whether you drank coffee before the onset of MC. If you could drink it before you developed this disease, then you should be able to drink it now. If coffee caused you to have diarrhea before you developed the symptoms of MC, then it will still cause the same reaction. (Some people have to run to the bathroom, soon after drinking coffee, even though they do not have MC, and they have a "normal" digestive system).
Nicotine is protective of inflammatory bowel diseases, in general. IOW, believe it or not, smoking helps to prevent the development of the diseases. Stopping a long-term smoking habit is a well-documented trigger for the development of microscopic colitis, so it is likely that if you try to stop smoking now, it may make your symptoms worse. Smoking imposes certain health risks, (which are well known), but it is actually beneficial for controlling MC symptoms. (Of course, I doubt that you would be able to get any doctor to admit that smoking is beneficial for any purpose). Not much research has been done regarding microscopic colitis, but there is documented proof that nicotine is beneficial for ulcerative colitis, and it is also protective of Alzheimer's and Parkinson's disease:
http://content.nejm.org/cgi/content/abstract/330/12/811
http://www.forces.org/evidence/hamilton ... cotine.htm
Love,
Tex
Fatigue is definitely connected with this disease, but part of your fatigue is also almost surely due to not eating. Without food, we quickly run short of energy.
The decision on whether or not to drink coffee, depends on whether you drank coffee before the onset of MC. If you could drink it before you developed this disease, then you should be able to drink it now. If coffee caused you to have diarrhea before you developed the symptoms of MC, then it will still cause the same reaction. (Some people have to run to the bathroom, soon after drinking coffee, even though they do not have MC, and they have a "normal" digestive system).
Nicotine is protective of inflammatory bowel diseases, in general. IOW, believe it or not, smoking helps to prevent the development of the diseases. Stopping a long-term smoking habit is a well-documented trigger for the development of microscopic colitis, so it is likely that if you try to stop smoking now, it may make your symptoms worse. Smoking imposes certain health risks, (which are well known), but it is actually beneficial for controlling MC symptoms. (Of course, I doubt that you would be able to get any doctor to admit that smoking is beneficial for any purpose). Not much research has been done regarding microscopic colitis, but there is documented proof that nicotine is beneficial for ulcerative colitis, and it is also protective of Alzheimer's and Parkinson's disease:
http://content.nejm.org/cgi/content/abstract/330/12/811
http://www.forces.org/evidence/hamilton ... cotine.htm
Love,
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.
Dear Harma
Wise words, especially about the fatigue and not fighting it. I do not like to admit it (and sometimes need to disguise it), but the truth is that I spent over a year in a "semi-zombie" state and have only slowly started to get back into productive work. That means that MC knocked a huge hole in my career and productive earning capacity.
Best, Ant
Wise words, especially about the fatigue and not fighting it. I do not like to admit it (and sometimes need to disguise it), but the truth is that I spent over a year in a "semi-zombie" state and have only slowly started to get back into productive work. That means that MC knocked a huge hole in my career and productive earning capacity.
Best, Ant
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belgiangirl
- Little Blue Penguin
- Posts: 26
- Joined: Thu Jun 03, 2010 3:53 pm
Entocort
Hi Harma,
Thanks for your reply. My Entocort dosage is 9 mg for a month, then 6 mg for a month, then 3 mg for a month.
It seems to make me more hungry, is this normal?
love,
annie
Thanks for your reply. My Entocort dosage is 9 mg for a month, then 6 mg for a month, then 3 mg for a month.
It seems to make me more hungry, is this normal?
love,
annie
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Annie it did that for me as well. I was in a similar distressed state prior to starting Entocort and was essentially eating nothing. So after a couple of days and feeling better I did feel that I had an increased appetite; I would say its a good sign that you have an appetite. I actually went for 3 weeks with absolutely no appetite. I had to 'remember' to eat.
--Joe
--Joe
Joe
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belgiangirl
- Little Blue Penguin
- Posts: 26
- Joined: Thu Jun 03, 2010 3:53 pm
appetite
Thank you Joe. It is reassuring to know that other people have been there. I have not eaten anything for six weeks and this evening I had some plain chicken with green cooked beans and GF bread, it tasted like lobster. I hope it will not wake me up during the night with abdominal pain,wait and see.
love,
Annie
love,
Annie
Annie, I am not one of those who did Entocort, but clearly you cannot go for long periods without eating, even if your body doesn't want to digest food. If what you are trying now is still a problem, I suggest you just make some banana smoothies with whatever juice you have on hand. You need to eat something. Bananas are the magic food, I don't know of anyone who can't tolerate them and they are good for you, if you can't eat anything else from my experience, bananas are safe.
Resolved MC symptoms successfully w/L-Glutamine, Probiotics and Vitamins, GF since 8/'09. DX w/MC 10/'09.
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belgiangirl
- Little Blue Penguin
- Posts: 26
- Joined: Thu Jun 03, 2010 3:53 pm
bananas
thank you for your replies. Indeed, I can tolerate bananas and I eat one or two a day. Last night I had some chicken with beans and bread and I did not have any D, nor pains. This is the first time in six weeks that I am able to hold some food inside, i am absolutely thrilled!!
Annie
Annie