Jenny
the information and support from this site is invaluable. I was diagnosed late December 09 and my sanity with dealing with this demon has mainly come from these wonderful people.
Even if you are struggling to read all the previous posts (there is ALOT of information) dont hesitate to ask questions and these wonderful people will send you links or answer the question for you.
I was assured there is no silly question or embarrasing question! this is the safe place that can discuss the good and bad of Bowel MOtions and remove any doubts or concerns! I was also assured that I would get control on the D Demon and get my life back. At the time i was thinking Yeah Right but here i am, not even 2 months later and i have reasonable control and have even started 'eating out'
Diet - ie finding out what foods are your enemies is the biggest step towards control.
for me the only medication i am using regularly is questran lite, and here and there i am using loperamide for the days that i have important meetings at work and there is unsettlement in my BM. THis is not my preferred but a necessary step to ensure that i am not running to the toilet in the middle of meetings.
Aside from that i am using Zinc and Golden seal (natural) and the Gluten Free/ Yeast Free/ Lactose Free diet is giving the most control
When i was first diagnosed and had had a stressful couple of months with Chronic diarrhea etc, my acupuncturist and naturopath suggested that i start from scratch with eating - like a baby. Have well cooked mushy food and help my body to learn to digest food again
i did this with the gluten free/yeast free/lactose free guidelines having mushy casseroles with mushy rice etc
and only introducing small amount of ingredients each meal. give it time.
I also ate alot of low joule jelly. Gelatine is a great healer. If my tummy was upset i would have a small serve of jelly to settle it down. I still do that now, each time i have a new type of ingredient, if i get colic or cramping i have some jelly.
I wont lie, food management and finding out what foods works, sourcing all the ingredients will take time and constant management! thinking ahead, making sure you have your foods, as you cant just go down to the shop at lunchtime and buy your lunch.
i have found that being organised and thinking a few days ahead means less stress. I have found that stress is an enemy to me and i have more BM issues when i am stressed.
GOOD LUCK! there is nothing wrong with asking for help! and most people on this site will agree that there are only a few GI specialists in the world that are good with this condition
the information sourced, reviewed and presented on this site is your best asset
take care
Gabes
Hello, This is all new to me - joining a support group!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Carol Arnett
- Gentoo Penguin
- Posts: 423
- Joined: Fri Mar 17, 2006 12:07 pm
I wanted to add my welcome Jenny. You have been given so much good advice that I can only add that I have no food intolerances that I am aware of (haven`t been tested) but NSAIDS, Aleve, Advil, Motran and proton pump inhibitors, Prilosic, Previcid, etc, play havoc with my digestive systym so I would suggest if you use any of these, please discontinue them and use only Tylonol for pain. If you continue to read I am sure you will find your road to wellness.
Hugs, Carol
Hugs, Carol
Carol Arnett
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Inconvenienced
- Posts: 9
- Joined: Thu Feb 04, 2010 6:19 am
- Location: Pershore, Worcestershire
Hello All
I have been reading as much as possible on your findings on the message board and am more confused that ever! The response of most of you is that my Specialist took me off the Entocort too soon (12 weeks). I admit that I am back to liquid D and not venturing more than 10 yards from the toilet! The specialist seemed reluctant to leave me on them as they are a steroid. I also didn't like the way they made my body feel (rapid pulse, edgy and nervous plus occasional palpitations). My D slowed down and I had one or two nearly normal motions whilst on it so there is some hope? Meanwhile I have sent off for the sample kit from Enterolab and hope that it will start me on the road to recovery.
I have to take medication for high blood pressure (Valsartan) and osteoporosis (Alendronic Acid and AdCal D3) Could either of these be a contributory factor? I have only been on the Alendronic Acid for 2.5 to 3 years whereas I have had high blood pressure since 1977. I would be interested on your comments.
Also has anyone ever tried the food combining diet? (no carbohydrate eaten with protein) or is it a waste of time? I am almost scared to eat at the moment as I really don't know what could have been the trigger. It really is a 'crap' disease!
I am back at my specialist this Friday so will be interested as to what he does next..................watch this space!
Warmest wishes to all fellow sufferers out there (it's nice to know that i'm not alone).
Jenny
I have been reading as much as possible on your findings on the message board and am more confused that ever! The response of most of you is that my Specialist took me off the Entocort too soon (12 weeks). I admit that I am back to liquid D and not venturing more than 10 yards from the toilet! The specialist seemed reluctant to leave me on them as they are a steroid. I also didn't like the way they made my body feel (rapid pulse, edgy and nervous plus occasional palpitations). My D slowed down and I had one or two nearly normal motions whilst on it so there is some hope? Meanwhile I have sent off for the sample kit from Enterolab and hope that it will start me on the road to recovery.
I have to take medication for high blood pressure (Valsartan) and osteoporosis (Alendronic Acid and AdCal D3) Could either of these be a contributory factor? I have only been on the Alendronic Acid for 2.5 to 3 years whereas I have had high blood pressure since 1977. I would be interested on your comments.
Also has anyone ever tried the food combining diet? (no carbohydrate eaten with protein) or is it a waste of time? I am almost scared to eat at the moment as I really don't know what could have been the trigger. It really is a 'crap' disease!
I am back at my specialist this Friday so will be interested as to what he does next..................watch this space!
Warmest wishes to all fellow sufferers out there (it's nice to know that i'm not alone).
Jenny
Hi Jenny!
It IS overwhelming at first, isn't it?
Good for you for taking your health into your own hands and proceeding with Enterolab testing!
That is the gold standard here - you will find out for certain if you have food intolerances. Don't be surprised if your doc is not at all interested in (or even laughs at) what you are planning to do. Most docs truly are clueless about the association between MC and food. You are on the right path!!!
As far as I know, neither of your drugs is a significant cause of MC. However, once you learn of any food intolerances from Dr. Fine, you will need to check with the drug manufacturers to make sure your meds don't contain any of your intolerances as additives/fillers. Carol already provided you with some of the main drugs that may cause MC or make it worse (the NSAIDs and proton pump inhibitors). It's also wise to avoid hormone replacement therapy (HRT) and antibiotics whenever possible.
I haven't heard of the diet you mentioned. If I had to guess, I would bet that the most important diet for you right now would be the gluten-free diet. Once you send in your stool sample to Dr. Fine, you might try eliminating the major sources of gluten in your diet. There is a lot of advice and support here for how to do this.
I'll be interested in what your specialist says. BTW, quite a few here have found that their general practitioners are better at managing MC than the specialists. They often seem more flexible about trying different approaches and are more willing to involve a patient as a co-team member.
Love,
Polly
P.S. Can you get some loperamide (Imodium) or diphenoxylate (Lomotil) to help with the diarrhea?
It IS overwhelming at first, isn't it?
Good for you for taking your health into your own hands and proceeding with Enterolab testing!
That is the gold standard here - you will find out for certain if you have food intolerances. Don't be surprised if your doc is not at all interested in (or even laughs at) what you are planning to do. Most docs truly are clueless about the association between MC and food. You are on the right path!!!As far as I know, neither of your drugs is a significant cause of MC. However, once you learn of any food intolerances from Dr. Fine, you will need to check with the drug manufacturers to make sure your meds don't contain any of your intolerances as additives/fillers. Carol already provided you with some of the main drugs that may cause MC or make it worse (the NSAIDs and proton pump inhibitors). It's also wise to avoid hormone replacement therapy (HRT) and antibiotics whenever possible.
I haven't heard of the diet you mentioned. If I had to guess, I would bet that the most important diet for you right now would be the gluten-free diet. Once you send in your stool sample to Dr. Fine, you might try eliminating the major sources of gluten in your diet. There is a lot of advice and support here for how to do this.
I'll be interested in what your specialist says. BTW, quite a few here have found that their general practitioners are better at managing MC than the specialists. They often seem more flexible about trying different approaches and are more willing to involve a patient as a co-team member.
Love,
Polly
P.S. Can you get some loperamide (Imodium) or diphenoxylate (Lomotil) to help with the diarrhea?
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Inconvenienced
- Posts: 9
- Joined: Thu Feb 04, 2010 6:19 am
- Location: Pershore, Worcestershire
Hi Polly
I tried to get my specialist on the phone but was unsuccessful so I spoke to my GP. He has suggested I go back to taking 1 tablet a day Entocort and that the specialist may put me back on 3 when I see him Friday. I took it immediately and also asked about taking Imodium as well and he didn't seem to think that it would be a good idea and to wait until Friday. I shall continue with the Questran (colestyramine) and the 1 tablet and keep my fingers crossed (as well as my legs - not that it helps!)
until Friday. One question I would like to ask: when I get the kit from Dr Fine if my motions still have no substance, is it still okay to do a liquid sample?
Many Thanks for your thoughts
Jenny
I tried to get my specialist on the phone but was unsuccessful so I spoke to my GP. He has suggested I go back to taking 1 tablet a day Entocort and that the specialist may put me back on 3 when I see him Friday. I took it immediately and also asked about taking Imodium as well and he didn't seem to think that it would be a good idea and to wait until Friday. I shall continue with the Questran (colestyramine) and the 1 tablet and keep my fingers crossed (as well as my legs - not that it helps!)
until Friday. One question I would like to ask: when I get the kit from Dr Fine if my motions still have no substance, is it still okay to do a liquid sample? Many Thanks for your thoughts
Jenny
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Jenny
years ago i did try the food combining - no carbs with protein. It did work to an extent. I foundl it was more socially inhibiting than my current situation of multiple food intolerances.
It got to the stage that when i did eat carb with protein that i would vomit as my body could not digest it.
like most of us have found it does take time (and patience) to figure what is best for you. and i think the key to acceptance of this demon is coming up with the ingredients and meals that fit in with your lifestyle. (work, home, family, socialising)
with your meds, just check what other ingredients they have (some tablets have gluten etc) additionally I was lucky that my local pharmacists was really good, as i am on meds for Hormonal stuff and they looked up all the info on absorbtion for all the meds and basically set me up with my medication plan as to the best time to take each of the medications so they did not affect my ability to get optimum absorbtion, and slotting it in best to suit schedule, work etc
HANG IN THERE. you will be surprised how quickly things can improve once you get a few of the ingredients sorted out and it is not so overwhelming
I am coming up to 8 weeks post diagnosis and having endured chronic diarrhea for days on end prior to this. I have got reasonable control, having picnics with friends where i bring my own food, managing to survive all day meetings/workshops at work where again i bring my own food and not eat the provided lunch, and have even started to brave eating out. So many people at work are doing the lose weight dieting plans where the food is provided that it is not questioned why i am eating my own food and not eating the provided catering.
once you are at peace with it and accept it, you wont feel soo alienated.
I did have one 'smart arse' in a meeting go, "why arent you having cake, whats the worse that can happen?, you put on an extra 200grams this week" (he was assuming that i was dieting) i replied ' the worst that can happen is that i have chronic diarrhea for over a week and get hospitalised for dehyrdation' so i will pass on the cake thanks
he didnt say anything i think my response gob smacked him enough. ANother person heard this interaction and said you are the first person to put him in his place. I said i am not embarrassed about my situation, I cant afford to be.
years ago i did try the food combining - no carbs with protein. It did work to an extent. I foundl it was more socially inhibiting than my current situation of multiple food intolerances.
It got to the stage that when i did eat carb with protein that i would vomit as my body could not digest it.
like most of us have found it does take time (and patience) to figure what is best for you. and i think the key to acceptance of this demon is coming up with the ingredients and meals that fit in with your lifestyle. (work, home, family, socialising)
with your meds, just check what other ingredients they have (some tablets have gluten etc) additionally I was lucky that my local pharmacists was really good, as i am on meds for Hormonal stuff and they looked up all the info on absorbtion for all the meds and basically set me up with my medication plan as to the best time to take each of the medications so they did not affect my ability to get optimum absorbtion, and slotting it in best to suit schedule, work etc
HANG IN THERE. you will be surprised how quickly things can improve once you get a few of the ingredients sorted out and it is not so overwhelming
I am coming up to 8 weeks post diagnosis and having endured chronic diarrhea for days on end prior to this. I have got reasonable control, having picnics with friends where i bring my own food, managing to survive all day meetings/workshops at work where again i bring my own food and not eat the provided lunch, and have even started to brave eating out. So many people at work are doing the lose weight dieting plans where the food is provided that it is not questioned why i am eating my own food and not eating the provided catering.
once you are at peace with it and accept it, you wont feel soo alienated.
I did have one 'smart arse' in a meeting go, "why arent you having cake, whats the worse that can happen?, you put on an extra 200grams this week" (he was assuming that i was dieting) i replied ' the worst that can happen is that i have chronic diarrhea for over a week and get hospitalised for dehyrdation' so i will pass on the cake thanks
he didnt say anything i think my response gob smacked him enough. ANother person heard this interaction and said you are the first person to put him in his place. I said i am not embarrassed about my situation, I cant afford to be.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes,
I just wanted to let you know that your posts are so much fun to read! I LOVE "gob smacked" - we don't use that saying here in Ohio but I think I just might start................anyways.......its great reading your posts!
PS: it's so great having so many friends and pen-pals from around the world; I just wish we would have found each other for a different reason!
One for all and all for one should be our motto!
Love and hugs,
Mars
I just wanted to let you know that your posts are so much fun to read! I LOVE "gob smacked" - we don't use that saying here in Ohio but I think I just might start................anyways.......its great reading your posts!
PS: it's so great having so many friends and pen-pals from around the world; I just wish we would have found each other for a different reason!
One for all and all for one should be our motto!
Love and hugs,
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
Gabes, it's wonderful to hear you're responding so well after 8 weeks. You sound a lot like me. Dreadful shape, D all day long, and desperate. As soon as I read from the folks here that gluten was a problem and cut it out, I got a lot better; ditto dairy. It was a miracle, honestly, and so fast. I was so lucky to turn things around so quickly. I am 7 months post dx and I feel almost normal and I go out!
I laughed at gobsmacked. I'm originally from Yorkshire in the UK and gobsmacked was a regular word heard daily. I still use it and my family and friends have got used to it and its meaning. It's lovely to hear it again.
I laughed at gobsmacked. I'm originally from Yorkshire in the UK and gobsmacked was a regular word heard daily. I still use it and my family and friends have got used to it and its meaning. It's lovely to hear it again.
Maxine
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
my theory on life and on this demon is 'you get what you give' (in the cool words of the new radicals!)
I definately value living life and not being a prisioner to my toilet - so the constant work on cooking meals and hunting and gathering ingredients is worth it
i am glad gob smacked has given some giggles. i might have to start using some real aussie slang not just the stuff we pinched from the poms!
I definately value living life and not being a prisioner to my toilet - so the constant work on cooking meals and hunting and gathering ingredients is worth it
i am glad gob smacked has given some giggles. i might have to start using some real aussie slang not just the stuff we pinched from the poms!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Looking forward to it!!!!
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Inconvenienced
- Posts: 9
- Joined: Thu Feb 04, 2010 6:19 am
- Location: Pershore, Worcestershire
Well folks, I saw the specialist yesterday and he is repeating the course of Entocort 9mg a day for 4 weeks 6mg for 4 weeks and 3mg for 4 weeks in the hope that it will calm things down again. I'm not to bother with the Questran as it made no difference whatsoever but I can take Imodium as and when I need to. (Probably all the time then!) I hope that this works as I don't like the sound of the next choice of drugs the GI has suggested if it doesn't.
I have put myself on a gluten free diet and also dairy free as I suspect milk and cheese. I am still waiting for the testing kit to come from Enterlab, it has been a week since ordering it and I am getting a little impatient. I expect it takes longer as it has to come to the UK. I think I will email them tomorrow to see what is happening.
I had a dreadful week last week but am feeling a lot better in myself today, I'm getting a lot of support from friends and family and know that there are people far worse off than me in the world.
Bye for now
Jenny x
I have put myself on a gluten free diet and also dairy free as I suspect milk and cheese. I am still waiting for the testing kit to come from Enterlab, it has been a week since ordering it and I am getting a little impatient. I expect it takes longer as it has to come to the UK. I think I will email them tomorrow to see what is happening.
I had a dreadful week last week but am feeling a lot better in myself today, I'm getting a lot of support from friends and family and know that there are people far worse off than me in the world.
Bye for now
Jenny x
Well, I still disagree with the length of time he is giving you on Entocort. After all, you are starting out from square one again because you weren't on it long enough the first time. That's just a layman opinion though.
I hope you see a difference soon. You could sure use a break.
Love, Shirley
I hope you see a difference soon. You could sure use a break.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Jenny!
Yes, Entocort EC is a steroid, but:
Entocort is a similar steroid to Prednisone, but it is coated in such a way that it does not release until it reaches the small bowel. This helps the medication to work on the diseased area "without absorbing" into the bloodstream nearly as much. That's why it is so much safer to take for longer periods of time.
This would be my question to your specialist.
Why take the Entocort EC for a short time to get things calmed down when you have something that will be chronic until you get to the root of the problem????
I'm just venting, I guess, but this is just another case of one (specialist) not having a clue when it comes to MC.
Love
Dee
Yes, Entocort EC is a steroid, but:
Entocort is a similar steroid to Prednisone, but it is coated in such a way that it does not release until it reaches the small bowel. This helps the medication to work on the diseased area "without absorbing" into the bloodstream nearly as much. That's why it is so much safer to take for longer periods of time.
This would be my question to your specialist.
Why take the Entocort EC for a short time to get things calmed down when you have something that will be chronic until you get to the root of the problem????
I'm just venting, I guess, but this is just another case of one (specialist) not having a clue when it comes to MC.
Love
Dee
"What the heart gives away is never gone ... It is kept in the hearts of others."