Hi Matthew,
When you do your weekend de-tox with the whole chicken, do you feel like you're going to pass out from hunger? I am so starving right now that I'm not sure which is worse - to feel this bad from hunger, or to feel that bad from the flare-up. Any suggestions?
Thanks so much,
Beth
Question for Matthew
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Beth
Maybe what worked for me is not the best thing for you since I had the opposite problem. When I was in a flare it was like something turned off any desire to eat anything at all. I was not hungry and just the thought of food turned me off and in fact for a while my whole sense of hunger disappeared . Knowing that not eating was the worst thing I could do since I was rapidly loosing weight and feeling worse all the time I felt lucky to get myself to eat anything at all thus the chicken broth was a great improvement over nothing. If I remember correctly several other people have had this problem.
I am at a loss for any answers for the opposite problem but suspect that without some balance in carbs and protein your blood sugar may be off resulting in intense hunger. Did the boiled potatoes or squash work for you at all?
The suggestions to eat more protein did not seem to work in that you have nausea from the proteins that did me the most good and might do the best to stabilize blood sugar if you eat them along with a simple carbohydrate.
I am sure others in the collective conscious we have here must have had the same problem you have and will come up with an answer.
Love
Matthew
Maybe what worked for me is not the best thing for you since I had the opposite problem. When I was in a flare it was like something turned off any desire to eat anything at all. I was not hungry and just the thought of food turned me off and in fact for a while my whole sense of hunger disappeared . Knowing that not eating was the worst thing I could do since I was rapidly loosing weight and feeling worse all the time I felt lucky to get myself to eat anything at all thus the chicken broth was a great improvement over nothing. If I remember correctly several other people have had this problem.
I am at a loss for any answers for the opposite problem but suspect that without some balance in carbs and protein your blood sugar may be off resulting in intense hunger. Did the boiled potatoes or squash work for you at all?
The suggestions to eat more protein did not seem to work in that you have nausea from the proteins that did me the most good and might do the best to stabilize blood sugar if you eat them along with a simple carbohydrate.
I am sure others in the collective conscious we have here must have had the same problem you have and will come up with an answer.
Love
Matthew
Matthew,
I had the same problem as you - I didn't have much of a desire to eat, and often didn't, during the worst of it - especially if I was nauseated. After I began to heal, I would continue to eat during reactions - I would just switch to chicken soup for a few days, during the worst part of the episodes.
My situation is kind of unique, though. Somewhere along the line, before I figured out what to do, and began to heal, I apparently had some nerve damage in my gut, and I Lost my ability to feel hunger pangs. To this day, if I don't keep an eye on the clock, I'll work right through meals, and never know the difference, because I never get hungry.
Beth,
My opinion would be: if you're hungry - eat. Eat some of the chicken and veggies, along with the broth. Chicken soup is always good for what ails ya. Has your serum glucose, (blood sugar), level been checked lately?
Wayne
I had the same problem as you - I didn't have much of a desire to eat, and often didn't, during the worst of it - especially if I was nauseated. After I began to heal, I would continue to eat during reactions - I would just switch to chicken soup for a few days, during the worst part of the episodes.
My situation is kind of unique, though. Somewhere along the line, before I figured out what to do, and began to heal, I apparently had some nerve damage in my gut, and I Lost my ability to feel hunger pangs. To this day, if I don't keep an eye on the clock, I'll work right through meals, and never know the difference, because I never get hungry.
Beth,
My opinion would be: if you're hungry - eat. Eat some of the chicken and veggies, along with the broth. Chicken soup is always good for what ails ya. Has your serum glucose, (blood sugar), level been checked lately?
Wayne
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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kate_ce1995
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Sounds like you are like me, Beth and need food when you need food! Perhaps having a pot of soup that you can have very small portions from all day. Even just a few bites at a time once an hour or something, will help the hunger pains, give you the stable blood sugar.
Those stomach pains when you don't feel well are the worst. Remember when a few saltine crackers did the trick?
What do the rest of you gf's do to sooth the stomach when upset (from MC or other stomach bug)?
Katy
Those stomach pains when you don't feel well are the worst. Remember when a few saltine crackers did the trick?
What do the rest of you gf's do to sooth the stomach when upset (from MC or other stomach bug)?
Katy
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artteacher
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.
Hi Beth,
When I'm flaring, I can't stop shoving food in my mouth. I think it's the body's desire to push the bad stuff out with good food.
Another thing I thought I'd mention, since you know your cortisol levels are low, is that you may have some hormonal imbalances. That's the main point, and my reason for saying it is this: I have Hashimoto's Thyroiditis. It's a common reason to have low thyroid function due to autoimmune attack on the thyroid gland. It causes the thyroid to work in fits and spurts and can play havoc with your digestion, metabolism and moods. That alone could be causing many of a person's health problems. If you have other hormonal problems with Hashimoto's, like Addison's, or a pituatary problem (causing low or high cortisol, adrenaline, or some other hormones I previously hadn't heard of), the correction of the thyroid problems with supplimental thyroid can mask the adrenal and pituatary problems. Those are facts. I suspect antidepressants can also mask symptoms to a degree.
Since you already know you have low cortisol function, it might help to see an endochronologist (or maybe the doctor you're seeing now could do it) and have ACTH, thyroid, calcium, and electrolytes tested.
My doctor just increased my throid medicine and it stopped my appetite dead in it's tracks.
I'll try and post some links, if it would help.
Love, Marsha
When I'm flaring, I can't stop shoving food in my mouth. I think it's the body's desire to push the bad stuff out with good food.
Another thing I thought I'd mention, since you know your cortisol levels are low, is that you may have some hormonal imbalances. That's the main point, and my reason for saying it is this: I have Hashimoto's Thyroiditis. It's a common reason to have low thyroid function due to autoimmune attack on the thyroid gland. It causes the thyroid to work in fits and spurts and can play havoc with your digestion, metabolism and moods. That alone could be causing many of a person's health problems. If you have other hormonal problems with Hashimoto's, like Addison's, or a pituatary problem (causing low or high cortisol, adrenaline, or some other hormones I previously hadn't heard of), the correction of the thyroid problems with supplimental thyroid can mask the adrenal and pituatary problems. Those are facts. I suspect antidepressants can also mask symptoms to a degree.
Since you already know you have low cortisol function, it might help to see an endochronologist (or maybe the doctor you're seeing now could do it) and have ACTH, thyroid, calcium, and electrolytes tested.
My doctor just increased my throid medicine and it stopped my appetite dead in it's tracks.
I'll try and post some links, if it would help.
Love, Marsha
Hi Marsha,
Thanks for your thoughts. I did have my thyroid checked, and at first it was low (I was tested while I was in a flare), and then I had it checked again when I wasn't flaring, and it was fine. Who knows, maybe my thyroid is low again since I'm in a major flare right now.
As far as appetite goes, I'm so hungry, but today I really don't want to eat anything. The few carrots I ate yesterday went straight throught me today (twice already), and I'm feeling a little nauseous. I also woke up with a tremendous headache - probably either from hunger, or else I got a migraine during the night and didn't wake up from the aura.
So, if I give my digestive system a rest and only sip chicken broth for a few days, and then I still can't keep anything in me, what do you suggest? Have others of you just kept on with the D until the flare works itself out? Or should I think about going on medication for a short time until I've gotten my body under control. I'm a little worried because I certainly can't afford to keep feeling like this. I can't keep cancelling my students, both for their sakes and for mine, and I have to go to my graduate program residency for ten days starting January 4th. It would be awful to be feeling like this while I'm away. Thoughts?
Thanks for your thoughts. I did have my thyroid checked, and at first it was low (I was tested while I was in a flare), and then I had it checked again when I wasn't flaring, and it was fine. Who knows, maybe my thyroid is low again since I'm in a major flare right now.
As far as appetite goes, I'm so hungry, but today I really don't want to eat anything. The few carrots I ate yesterday went straight throught me today (twice already), and I'm feeling a little nauseous. I also woke up with a tremendous headache - probably either from hunger, or else I got a migraine during the night and didn't wake up from the aura.
So, if I give my digestive system a rest and only sip chicken broth for a few days, and then I still can't keep anything in me, what do you suggest? Have others of you just kept on with the D until the flare works itself out? Or should I think about going on medication for a short time until I've gotten my body under control. I'm a little worried because I certainly can't afford to keep feeling like this. I can't keep cancelling my students, both for their sakes and for mine, and I have to go to my graduate program residency for ten days starting January 4th. It would be awful to be feeling like this while I'm away. Thoughts?
Beth,
The headache is probably just part of your MC symptoms. You are in the middle of a major flare, so you will naturally have severe symptoms. Most of us using diet for control, just let the D run it's course, for all pradtical purposes. (It can last for days, weeks or months for some individuals, maybe a year for some). It's not always continuous, of course, it can come and go, with unpredictable episodes. (Actually, we try to stop it, of course, at least at first, but we usually don't have much luck, and eventually, we learn to just let it run its course). I'm pretty sure that some will disagree with me about that observation, so I'm not speaking for everyone here, obviously. These are just my observations, after 5 or 6 years of personal experience.
You have to allow for the fact that you have a life-altering disease, and until you get the symptoms under control, and your gut fully heals, you are very vulnerable to flares at any time. This is an unpredictable disease. You might go into spontaneous remission tomorrow, (without any effort on your part), or you might continue to react for months, despite your best efforts, as your gut slowly heals. The actual outcome will most likely be somewhere in between.
If you absolutely have to be able to be "fully functional" by January 4th, I would suggest a short, potent medication regimen, beginning ASAP. In the meantime, stay on the GF, DF diet. For some individuals, meds such as the corticosteroids work promptly, and very effectively, but others have a very tough time achieving "prompt" remission, even with the corticosteroids, unless they watch their diets, also. Asacol, or one of it's "siblings" might work, also, but with your short window of opportunity, you don't have much time available for experimentation. Entocort, or a Prednisone/Entocort program, (similar to what Bob used, has the highest probability of success in a short time frame. There are no guarantees with MC, (except for the guarantee that it affects everyone differently), so everyone has to work out his or her own game plan, to best suit their lifestyle. I wish that I could tell you that you can just do A, B, and C, and everything will be fine, but obviously, it's nowhere near that easy. Among other things, MC is an insidious disease.
Wayne
The headache is probably just part of your MC symptoms. You are in the middle of a major flare, so you will naturally have severe symptoms. Most of us using diet for control, just let the D run it's course, for all pradtical purposes. (It can last for days, weeks or months for some individuals, maybe a year for some). It's not always continuous, of course, it can come and go, with unpredictable episodes. (Actually, we try to stop it, of course, at least at first, but we usually don't have much luck, and eventually, we learn to just let it run its course). I'm pretty sure that some will disagree with me about that observation, so I'm not speaking for everyone here, obviously. These are just my observations, after 5 or 6 years of personal experience.
You have to allow for the fact that you have a life-altering disease, and until you get the symptoms under control, and your gut fully heals, you are very vulnerable to flares at any time. This is an unpredictable disease. You might go into spontaneous remission tomorrow, (without any effort on your part), or you might continue to react for months, despite your best efforts, as your gut slowly heals. The actual outcome will most likely be somewhere in between.
If you absolutely have to be able to be "fully functional" by January 4th, I would suggest a short, potent medication regimen, beginning ASAP. In the meantime, stay on the GF, DF diet. For some individuals, meds such as the corticosteroids work promptly, and very effectively, but others have a very tough time achieving "prompt" remission, even with the corticosteroids, unless they watch their diets, also. Asacol, or one of it's "siblings" might work, also, but with your short window of opportunity, you don't have much time available for experimentation. Entocort, or a Prednisone/Entocort program, (similar to what Bob used, has the highest probability of success in a short time frame. There are no guarantees with MC, (except for the guarantee that it affects everyone differently), so everyone has to work out his or her own game plan, to best suit their lifestyle. I wish that I could tell you that you can just do A, B, and C, and everything will be fine, but obviously, it's nowhere near that easy. Among other things, MC is an insidious disease.
Wayne
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.
Beth,
So far, Bob is the only one who has tried the Pred/Entocort regimen, but he highly recommends it, and his was a very, very tough case.
I don't consider this to be a particularly "risky" treatment, as long as it's done correctly and carefully, in tandem with a diet that eliminates all your intolerances. It will allow your gut the opportunity to begin the healing process.
Unless you are lucky, most other treatments will take longer to get results. Again, we all react differently to meds. Hopefully, you'll get some more input on this, but traffic on the board can be slow sometimes on weekends.
Wayne
So far, Bob is the only one who has tried the Pred/Entocort regimen, but he highly recommends it, and his was a very, very tough case.
I don't consider this to be a particularly "risky" treatment, as long as it's done correctly and carefully, in tandem with a diet that eliminates all your intolerances. It will allow your gut the opportunity to begin the healing process.
Unless you are lucky, most other treatments will take longer to get results. Again, we all react differently to meds. Hopefully, you'll get some more input on this, but traffic on the board can be slow sometimes on weekends.
Wayne
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.
Beth
Don’t know if you have read Bob’s posts. Having not responded to the diet after some years he did a short course of prednisone, hitting it hard and then backing off. Then went on to Entocort with some great results .
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4794
I was offered only a life long course of high doses of prednisone. Knowing what it did to friends and family I had to find another route and after more than a year began to have some resolution to my problems. It is one way to go but a long study.
If I had been offered such a treatment as Bob has found results with I might very well have given it a go. I was not offered that and took the only other route I could find.
With twenty twenty hindsight it seems that if you can find a doctor that would hold to the program and not leave you hanging for years on high doses of prednisone that this is a great jump start to healing.
Its a commitment no matter which way in that if you want to eventually get off it you have to stay 100 percent committed to a GF, DF, trigger free diet. Never having done it I have no idea how you would identify what was working and what was not as far as food goes while on meds.
Don’t feel that you have failed if you decide to go the med route. We all have had to follow a lot of circuitous paths, sometimes coming to dead ends, sometimes finding nothing after bucketing out the pond, some times being led astray by the MC cure Gremlins that lurk in all kinds of on line supplements.
And finally coming to some resolution.
To your continued healing
Love
Matthew
Don’t know if you have read Bob’s posts. Having not responded to the diet after some years he did a short course of prednisone, hitting it hard and then backing off. Then went on to Entocort with some great results .
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4794
I was offered only a life long course of high doses of prednisone. Knowing what it did to friends and family I had to find another route and after more than a year began to have some resolution to my problems. It is one way to go but a long study.
If I had been offered such a treatment as Bob has found results with I might very well have given it a go. I was not offered that and took the only other route I could find.
With twenty twenty hindsight it seems that if you can find a doctor that would hold to the program and not leave you hanging for years on high doses of prednisone that this is a great jump start to healing.
Its a commitment no matter which way in that if you want to eventually get off it you have to stay 100 percent committed to a GF, DF, trigger free diet. Never having done it I have no idea how you would identify what was working and what was not as far as food goes while on meds.
Don’t feel that you have failed if you decide to go the med route. We all have had to follow a lot of circuitous paths, sometimes coming to dead ends, sometimes finding nothing after bucketing out the pond, some times being led astray by the MC cure Gremlins that lurk in all kinds of on line supplements.
And finally coming to some resolution.
To your continued healing
Love
Matthew
Hi Beth,
I couldn't agree more with what Matthew has said. I was in the same boat as he - the only option offered me was longterm prednisone, which I refused. But now that Entocort is available and has been used so successfully by many here, I think I may have opted for that route. I like the fact that Entocort's action is pretty much limited to the GI tract - it does not have the major systemic effects that prednisone does.
You could try Bob's plan, if you have a willing doc. Or, you could just go on the Entocort and continue to diet. Joanna did the latter route, I believe, and was able to stop the Entocort and use diet alone after 6 months. Or maybe it was 12 months? Hopefully, she'll stop by and enlighten you!
Good luck. I know you will figure out the best option.
Love,
Polly
P.S. Matthew, I love the phrase " the MC cure Gremlins that lurk in all kinds of on line supplements". How true................
I couldn't agree more with what Matthew has said. I was in the same boat as he - the only option offered me was longterm prednisone, which I refused. But now that Entocort is available and has been used so successfully by many here, I think I may have opted for that route. I like the fact that Entocort's action is pretty much limited to the GI tract - it does not have the major systemic effects that prednisone does.
You could try Bob's plan, if you have a willing doc. Or, you could just go on the Entocort and continue to diet. Joanna did the latter route, I believe, and was able to stop the Entocort and use diet alone after 6 months. Or maybe it was 12 months? Hopefully, she'll stop by and enlighten you!
Good luck. I know you will figure out the best option.
Love,
Polly
P.S. Matthew, I love the phrase " the MC cure Gremlins that lurk in all kinds of on line supplements". How true................
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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bobh
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Hi Beth, I had horrific explosive "D" for the past 15 years, with occasional remissions lasting as long as a few months. As noted on some of my previous posts, I was having a 6 month long flare that was like an oil-rig on fire that no one could put out. I was taking fist-fulls of Immodium, Pepto, Pro-biotics, GF diet, no processed foods, etc. I was losing weight, and very hard to remain employed. "Waiting for the flare to work itself out" was like waiting to get younger. It wasn't happening.Beth wrote:Hi Marsha... Have others of you just kept on with the D until the flare works itself out? Or should I think about going on medication for a short time until I've gotten my body under control. I'm a little worried because I certainly can't afford to keep feeling like this... Thoughts?
As noted in my other posts, when I started the SHORT protocol of Prednisone, my flare HALTED WITHIN 24 HOURS. It has been over 3 months now, and I have not had the runs since. Not once. And no BM after the morning, ever. I am "functionally normal".
Some people on this board can eventually get their "D" under control with diet alone. I wasn't able to. Some have been able to control their symptoms with "smaller guns" like Asacol, which only had a temporary benefit for me - lessened symptoms "a bit" then no benefit.
Some people on this board have halted their symptoms with Entocort alone, which is great, the anti-inflammatory steroid is TARGETED to the bowels, not systemically distributed throughout the body. But others on this site have taken Entocort and "waited for it to do something" for weeks.
I cannot stress enough how SERIOUS the flare was for me. I was having "accidents" not making it to a toilet fast enough - it was as bad as you can imagine. I was eating like a saint, and getting punished like a sinner. Day, after day, after day. I was waking up in the middle of the night with the sh*ts, you name it.
60 mg of Prednisone, and the next day I had a formed stool. That dose for 2 days, then 50mg for 2 days, then 40 mg for 2 days, then 30 mg for 2 days. Around the 3rd day I was feeling somewhat euphoric (all the brain fog and inflammation halted - and a somewhat "manic" side effect, but no other "bad" side effects.)
then 20 mg Prednisone for 2 days, introducing 2 pills of Entocort simultaneously. then 10 mg Prednisone for 2 days, with 2 Entocort daily. Then NO Pred, and just the 2 Entocort daily (with approval for a 3rd one "as needed" daily).
My "D" was GONE after the 2nd day, and it hasn't come back. There have been times when I was tempted to go off the entocort, but then could sort of "feel" the inflammatory condition in the lower colon, and would keep taking the Entocort, and I swear it stops MY CONDITION (which is very REAL) from worsening to the point of loose bowels.
As Polly (an MD) noted, Entocort is fairly new on the market. It hasn't been available to us very long, but it works very, very well IF YOU CAN HALT THE FLAIR, and use it to keep things under control.
I am not trying to talk everyone into "taking a pill" rather than watching your diet. but for me, I firmly believe that I had a very serious condition that was just getting worse. I consider "a pill" better than surgery, or circle the drain. I remain GF, don't eat sugar or processed foods. But that saintly behavior was not halting the flare of the universe.
Bob H
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bobh
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If you take long term Prednisone, it can contribute to Osteoporosis. If you are on a significant dose of Prednisone for more than a few weeks, and stop it suddenly, the body doesn't get a chance to start "ramping up" its own levels of "cortico steroids" and you could be in trouble. Thats why you taper off, gradually.Beth wrote:Okay, well, that's a little sobering. What are all the reasons NOT to go on medication. And for those of you who have chosen a short-term regimen of entocort and/or prednisone, did it help? Do you regret it? Would you do it again?
Re: your question, short term regimen, YES I WOULD DO IT AGAIN (short but hard hit with Prednisone to HALT the inflammation, then get off of it).
Re: short term Entocort - my condition of MC is very severe. It already screwed up over a decade of my life, and I choose to take Entocort rather than suffering. I did a lot of research first, was very suspicious. But the info on this site, from my MD, and elsewhere, says that it doesn't have the side effects of long-term Prednisone (or other "systemic" steroids that go throughout the entire body).
If I feel like I could stop Entocort and stay in remission, I would do that. It's only been 3 months into remission, and every few days I can tell that my inflammatory condition is "simmering" in my lower colon - but the Entocort keeps it from going to full-blown "D". I feel like if I stopped the Entocort at this moment, the "D" would return within 2 weeks. Right now, I have had "dry farts" for 3 months, and that is important when you consider that the average human passes gas 15 times in a 24 hour period.
After another 3 months, I may "test" no meds. I'm not saying it has to be forever, and likely it is a case-by-case thing.
Bob H
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annie oakley
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