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I'm not even sure where I'm supposed to introduce myself, so I'm sorry if this is completely in the wrong area.
I just turned 38 and have been diagnosed as IBS for many years. C/D cycle constant throughout my life. This spring, I had a long bout with D and eventually got over it on my own. When it returned in late July, it was much, much more dramatic. A good day would be 5-7 times. Bad days I lost track after 10 times. My PCP ordered labs and put me on antibiotics for a possible virus. Labs came back normal and the antibiotics did not help at all. Midwife had me take a high dose of acidophilis. Good for me, I'm sure, but didn't help the D. After a followup with PCP and GYN, finally I got to a GI doc. He tried just giving me fiber and doing another series of the same labs (stool and blood). I was still deemed "normal" - much to my frustration.
Last Friday they did an endoscopy and colonoscopy on me and guess what? It's not in my head at all. Not that I ever doubted that. I have Lymphocytic Colitis. I'm happy to find out there's a name for it, but irritated that I have a "rare" thing that can't be easily handled. I kind of knew I had a condition that was long lasting, but it's still tough to hear it from medical people.
He said I tested negative for Celiac, but I've researched some of the wording on my results and I still question that. I found the exact "minor changes in the terminal ileum with villous atrophy" that's on my results as the wording used to describe what they look for in Celiac. I know for a fact that I had a huge amount of mucous in my D when I was having really bad days. And the smell...so foreign and foul. Sadly, I don't remember what I'd eaten and couldn't connect it to any certain food. Am I completely misinterpreting? I know GF won't hurt me even if I'm not Celiac also, so I may try it anyway.
When I was at my worse acute phase, I do remember that ice cream from Dairy Queen was the devil food. I had one small milkshake and was on the toilet all evening and night, cramping, diarrhea, bloating. So terrible. Dairy has plagued me off and on all my life. I never can tell which day it's fine to have it and which day I'll be terribly upset for hours.
I wanted to see also if anyone here has tried aloe vera water and/or boswellia serrata. I have a friend whose daughter had ulcerative colitis and she recommended I try this combination since the doctors weren't getting any answers for me at the time. I must say that I had HUGE improvement on this more natural combination of "medication". I take a shotglass of aloe vera water in the morning and evening, and boswellia serrata 250 mg 3x a day and I went back to normal bathroom visits after a week. I've been off all supplements and medications for the past few days to prep for the procedures I had done, so I'm back to the D, but I'm trying to get the good stuff in my system again in hopes it helps as much as it did in the past two weeks.
I also take Florjen - high potency acidophilus - and the GI doc prescribed me Citracel on my first visit. Neither one of these helped me in the acute phase, but I continue taking them - I'm not sure exactly why. I guess I just figure they won't hurt me and they may help.
GI doc called me a prescription for bismuth today, but I have yet to pick it up from the pharmacy. My strategy now is to get the aloe vera water back into my system since I flushed everything out last week. If I can live on just the herbal/natural remedies, I will happily do that. I don't want the bloating/cramping/constipation I get with bismuth. That's almost as bad as the D.
Guess that's it. I hope to learn and be a resource as I learn. Thanks!
Amanda
New to the group
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: Aloe Vera
Hi Amanda,
I'm another newbie...presently on month two of Entocourt. An internal medicine doc that I saw recently for menopause issue recommended 2 ounce of aloe vera juice per day due to the CC. I actually was going to check w/ Tex about it. My visit with the internal medicine doc was interesting and actually worth another post but I'll address my history w/ aloe vera here. Kind of what I read on line was that actual aloe vera gel from the plant was better than the juice. When you google it it seems to be heavily recommended for UC and Chrones disease. That being said it is also listed as a laxative. I decided to give it a try. (After 4 months of diareah what do you have to lose.) I bought a branch at our grocery store and filleted a section. I probably ingested @ an 1/2 inch per day, of the gel only, not the green plant, for about 3 days.
At this point I thought maybe check with Tex. I was on month 1 of Entocourt at the time. My 1/2 inch of gel experiment for 3 days I would say no effect negative or positive. I backed away from it because thought I would give Entocourt a chance and I was scared of the laxative effect.
I'm interested in Tex's feedback.
Brandy
Hi Amanda,
I'm another newbie...presently on month two of Entocourt. An internal medicine doc that I saw recently for menopause issue recommended 2 ounce of aloe vera juice per day due to the CC. I actually was going to check w/ Tex about it. My visit with the internal medicine doc was interesting and actually worth another post but I'll address my history w/ aloe vera here. Kind of what I read on line was that actual aloe vera gel from the plant was better than the juice. When you google it it seems to be heavily recommended for UC and Chrones disease. That being said it is also listed as a laxative. I decided to give it a try. (After 4 months of diareah what do you have to lose.) I bought a branch at our grocery store and filleted a section. I probably ingested @ an 1/2 inch per day, of the gel only, not the green plant, for about 3 days.
At this point I thought maybe check with Tex. I was on month 1 of Entocourt at the time. My 1/2 inch of gel experiment for 3 days I would say no effect negative or positive. I backed away from it because thought I would give Entocourt a chance and I was scared of the laxative effect.
I'm interested in Tex's feedback.
Brandy
Hi Amanda,
Welcome to our internet family. Your history is typical of many of us. I also had alternating D/C, for example, after my symptoms began in earnest, but prior to that, I predominantly had C.
Several members here have tried aloe and boswellia serrata, (though not in combination), with mixed results.
While the disease has no cure, (once the genes are triggered, the change is permanent), the symptoms can certainly be controlled. The key that unlocks the mysteries of treating the disease lies in diet changes. Most of us are sensitive to gluten and casein, and about half of us are sensitive to soy. Some have additional food-sensitivities, of course, but the point is, if we eliminate those food-sensitivites from our diet, our intestines will heal, and all our symptoms will disappear. If we continue to eat the foods that cause the inflammation, then most of us require medications for the rest of our lives, to suppress the inflammation.
Diet changes, IOW, eliminate the generation of the inflammation that causes the disease. Some of the most severe cases require both diet changes and meds, in order to maintain remission, but virtually everyone can get their life back, if they work out a treatment program that fits their situation, and their lifestyle. Most doctors are still unaware that diet changes play an important role in treating MC, because of their faulty training.
IMO, your suspicions about your pathology report are correct - if you have ileal villus atrophy, you definitely have gluten-sensitivity, and you probably have celiac disease as well. The celiac diagnostic criteria are so archaic that they do not detect celiac disease until the disease is "mature", which takes years - that's why it takes so many years to get an "official" diagnosis of celiac disease.
Again, welcome aboard, and please feel free to ask anything.
Tex (Wayne)
Welcome to our internet family. Your history is typical of many of us. I also had alternating D/C, for example, after my symptoms began in earnest, but prior to that, I predominantly had C.
Several members here have tried aloe and boswellia serrata, (though not in combination), with mixed results.
It's true that the disease is not easily handled, but it's not rare, by any means - that's an obsolete idea that many doctors still cling to. Actually, MC is more common than Crohn's disease.Amanda wrote:but irritated that I have a "rare" thing that can't be easily handled.
While the disease has no cure, (once the genes are triggered, the change is permanent), the symptoms can certainly be controlled. The key that unlocks the mysteries of treating the disease lies in diet changes. Most of us are sensitive to gluten and casein, and about half of us are sensitive to soy. Some have additional food-sensitivities, of course, but the point is, if we eliminate those food-sensitivites from our diet, our intestines will heal, and all our symptoms will disappear. If we continue to eat the foods that cause the inflammation, then most of us require medications for the rest of our lives, to suppress the inflammation.
Diet changes, IOW, eliminate the generation of the inflammation that causes the disease. Some of the most severe cases require both diet changes and meds, in order to maintain remission, but virtually everyone can get their life back, if they work out a treatment program that fits their situation, and their lifestyle. Most doctors are still unaware that diet changes play an important role in treating MC, because of their faulty training.
IMO, your suspicions about your pathology report are correct - if you have ileal villus atrophy, you definitely have gluten-sensitivity, and you probably have celiac disease as well. The celiac diagnostic criteria are so archaic that they do not detect celiac disease until the disease is "mature", which takes years - that's why it takes so many years to get an "official" diagnosis of celiac disease.
Again, welcome aboard, and please feel free to ask anything.
Tex (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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barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
welcome -----I know U both will benefit from joining ----plus welcoming new friends into your lives---
we have been a group for quite a few years-----and it is always a reward to hear when someone gets onto that WELLNESS ROAD---
and this I am certain U will do---
Fortunately I didnt have as many issues to deal with----but did learn more about this problem
and 
Barbara
we have been a group for quite a few years-----and it is always a reward to hear when someone gets onto that WELLNESS ROAD---
and this I am certain U will do---
Fortunately I didnt have as many issues to deal with----but did learn more about this problem
and Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Hi, and welcome, Amanda - this is the best community on the entire Internet, for information gathering, support, and general helpfulness/friendliness!
Most of us would find Citracel more of an irritant than a help. The Florajen may be dairy-derived, and you may want to wait to attempt it till you are confident you're on the right track. If you get some healing done, and reintroduce it, you'll know whether it's a help or a hindrance.
GOOD FOR YOU, asking those questions about your pathology report. I agree with you *and* Tex, with the additional comment that you don't have to have "true" celiac disease to be plenty sick from gluten, and it's ironic that their "gold standard" for diagnosing celiac misses 90% of people who DO have celiac disease... much rest those who have non-celiac gluten sensitivity - which they're beginning to admit is real.
I am familiar with that mucus - and I think you'll lose it sooner if you discontinue the Citracel, at least temporarily. Fiber in general is kind of like a scrub-brush on a sunburn, for those of us with this kind of inflammation.
Bismuth, the active ingredient in Pepto Bismol, can be very helpful to those who tolerate it. I had that good fortune but some folks have awful side effects with Pepto (whether to the Bismuth, the salicylates, or some other ingredient - it almost doesn't matter, because it makes it off limits). I think you're on the right track, asking the right questions, and I hope you are soon rewarded with significant and sustained symptom relief, and a stable remission.
And welcome, again!
Brandy -
I think it's better to wait to try the aloe till you are a little further down the road, because it's possible that the Entocort could be masking a negative reaction. Meanwhile, Entocort is buying you precious time to reduce the source of inflammation in your diet, so you can begin real healing. That way, when you taper off the Entocort, you're in the best possible position not to backslide (the idea of backsliding, I'm sure, is the last thing you want, or any of us would wish for you - or ourselves!).
Hope this is helpful,
Sara
Most of us would find Citracel more of an irritant than a help. The Florajen may be dairy-derived, and you may want to wait to attempt it till you are confident you're on the right track. If you get some healing done, and reintroduce it, you'll know whether it's a help or a hindrance.
GOOD FOR YOU, asking those questions about your pathology report. I agree with you *and* Tex, with the additional comment that you don't have to have "true" celiac disease to be plenty sick from gluten, and it's ironic that their "gold standard" for diagnosing celiac misses 90% of people who DO have celiac disease... much rest those who have non-celiac gluten sensitivity - which they're beginning to admit is real.
I am familiar with that mucus - and I think you'll lose it sooner if you discontinue the Citracel, at least temporarily. Fiber in general is kind of like a scrub-brush on a sunburn, for those of us with this kind of inflammation.
Bismuth, the active ingredient in Pepto Bismol, can be very helpful to those who tolerate it. I had that good fortune but some folks have awful side effects with Pepto (whether to the Bismuth, the salicylates, or some other ingredient - it almost doesn't matter, because it makes it off limits). I think you're on the right track, asking the right questions, and I hope you are soon rewarded with significant and sustained symptom relief, and a stable remission.
And welcome, again!
Brandy -
I think it's better to wait to try the aloe till you are a little further down the road, because it's possible that the Entocort could be masking a negative reaction. Meanwhile, Entocort is buying you precious time to reduce the source of inflammation in your diet, so you can begin real healing. That way, when you taper off the Entocort, you're in the best possible position not to backslide (the idea of backsliding, I'm sure, is the last thing you want, or any of us would wish for you - or ourselves!).
Hope this is helpful,
Sara
Hi Brandy,
I'm sorry, I originally missed your post, above. Regarding aloe, I don't believe it will hurt anything to use it, but I'm not aware of any way that it can help to suppress the inflammation that causes MC, since the inflammation is generated within the mucosa of the intestines, (internally, not externally). Some people say that it helps by coating the inflamed tissues, and protecting them, but the intestines naturally secrete mucus for that purpose, and if the surface of the mucosa were actually effectively shielded from everything going through the digestive system, food could not be properly digested, and the nutrients that it contains could not be absorbed.
Most of the success stories about treating IBDs with aloe, are either a result of the placebo effect, or they are generated by people selling aloe products, or otherwise promoting them. The placebo effect is real, and it can be very powerful. In some randomized, controlled trials, a placebo has actually performed better than the drug being trialed. Therefore, if someone truly believes that it can help, it might, but that doesn't mean that it will help someone else.
Tex
I'm sorry, I originally missed your post, above. Regarding aloe, I don't believe it will hurt anything to use it, but I'm not aware of any way that it can help to suppress the inflammation that causes MC, since the inflammation is generated within the mucosa of the intestines, (internally, not externally). Some people say that it helps by coating the inflamed tissues, and protecting them, but the intestines naturally secrete mucus for that purpose, and if the surface of the mucosa were actually effectively shielded from everything going through the digestive system, food could not be properly digested, and the nutrients that it contains could not be absorbed.
Most of the success stories about treating IBDs with aloe, are either a result of the placebo effect, or they are generated by people selling aloe products, or otherwise promoting them. The placebo effect is real, and it can be very powerful. In some randomized, controlled trials, a placebo has actually performed better than the drug being trialed. Therefore, if someone truly believes that it can help, it might, but that doesn't mean that it will help someone else.
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.
Thank you!
Thank you for your quick responses, everyone! It's so encouraging to hear from other people.
I went to the store last night and shopped very carefully for GF foods. I'm planning on limiting the sugars and dairy very much, too. I am excited to experient with this diet and hopeful that it will help me live better.
Have you used agave as a sweetener? From what I read it should be better tolerated than all the refined sugars or honey. If I'm on a special diet, I at least need some way to sweeten some things up!
I went to the store last night and shopped very carefully for GF foods. I'm planning on limiting the sugars and dairy very much, too. I am excited to experient with this diet and hopeful that it will help me live better.
Have you used agave as a sweetener? From what I read it should be better tolerated than all the refined sugars or honey. If I'm on a special diet, I at least need some way to sweeten some things up!
Amanda,
We seem to vary in how we react to sweeteners - so some of us do better with honey than maple syrup, and others - the exact opposite. Artificial sweeteners definitely seem to be problematic. I haven't tried agave - at the moment I can handle small amounts of honey or maple syrup, and even plain old sugar, but when I was first reacting, any sweetness at all made everything worse. I think... at the time, it seemed as though *everything* caused me to react!
I hope you get more helpful info from an actual agave-user,
Sara
We seem to vary in how we react to sweeteners - so some of us do better with honey than maple syrup, and others - the exact opposite. Artificial sweeteners definitely seem to be problematic. I haven't tried agave - at the moment I can handle small amounts of honey or maple syrup, and even plain old sugar, but when I was first reacting, any sweetness at all made everything worse. I think... at the time, it seemed as though *everything* caused me to react!
I hope you get more helpful info from an actual agave-user,
Sara
Welcome Amanda!
I have agave sweetener at home and have no issues with it. But I'm fine with honey, maple syrup and regular sugar too. I tried Aloe juice once, but decided it wasn't wort the expense if there was no evidence it would do something. I'm seriously thinking about trying Boswelia. There is a member here who tried it once - you can search for the term. I don't know if he ever gave us long-term results. I do very well with Pepto Bismol, and I only take 1-2 doses a day when needed. The added bonus is that it takes away any odor of the D - very strange, but I recently looked up why it does that.
I have agave sweetener at home and have no issues with it. But I'm fine with honey, maple syrup and regular sugar too. I tried Aloe juice once, but decided it wasn't wort the expense if there was no evidence it would do something. I'm seriously thinking about trying Boswelia. There is a member here who tried it once - you can search for the term. I don't know if he ever gave us long-term results. I do very well with Pepto Bismol, and I only take 1-2 doses a day when needed. The added bonus is that it takes away any odor of the D - very strange, but I recently looked up why it does that.
Incidentally, some people believe excess hydrogen sulfide plays a role in IBDs, especially UC.Bismuth subsalicylate (BSS) reduces the odor of feces and flatus in humans when taken frequently (four times daily). Bismuth is the active ingredient and avidly adsorbs hydrogen sulfide, forming insoluble bismuth sulfide. Bismuth sulfide imparts a characteristic black color to feces. Bismuth also has antibacterial activity, which may account for some of the effects.
An increased amount of colonic sulfate-reducing bacteria has been observed in some patients with ulcerative colitis, resulting in higher concentrations of the toxic gas hydrogen sulfide. The role of hydrogen sulfide in pathogenesis is unclear. It has been suggested that the protective benefit of smoking that some patients report is due to hydrogen cyanide from cigarette smoke reacting with hydrogen sulfide to produce the nontoxic isothiocyanate. Another unrelated study suggested sulphur contained in red meats and alcohol may lead to an increased risk of relapse for patients in remission.
Zizzle,
You're apparently referring to Hotrod's boswellia serrata trial. The thread at the first link below describes his treatment trial, and as you can see from a post later in the thread, the treatment had only limited success. The thread at the second link describes how he then decided to try Entocort, (which worked successfully for him). As you can see from the thread, he was already seeing improvement after only 3 days. Note that he had been avoiding certain foods for a long time, before starting either of these treatments.
http://www.perskyfarms.com/phpBB2/viewt ... =boswellia
http://www.perskyfarms.com/phpBB2/viewt ... =boswellia
Tex
You're apparently referring to Hotrod's boswellia serrata trial. The thread at the first link below describes his treatment trial, and as you can see from a post later in the thread, the treatment had only limited success. The thread at the second link describes how he then decided to try Entocort, (which worked successfully for him). As you can see from the thread, he was already seeing improvement after only 3 days. Note that he had been avoiding certain foods for a long time, before starting either of these treatments.
http://www.perskyfarms.com/phpBB2/viewt ... =boswellia
http://www.perskyfarms.com/phpBB2/viewt ... =boswellia
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.