Well, I have now been to a Endocrinologist who ran tests and found nothing wrong. Also an MD who practices alternative medicine and more tests. This has been a little more fruitful. She ran a Comprehensive Digestive Stool Analysis and has discovered I possess NO beneficial bacteria (Escherichia coli & Bifidobacterium) and my Metabolic references are not in normal range, i.e. n-Butyrate. My Gut Immunology was perfect; no yeast, no inflammation; indicating my CC has healed. She started me on probiotic retention enemas and I must say they have helped. I am also trying to follow the "GAPS" diet, but it is difficult since I can only eat around 12 items. (had to eliminate pork, rice, buckwheat, quinoa and carrots) The diet is high on fermented veggies and, of course, Kefir. I am going to try some version of Kefir using young green coconuts (water), but I have already had one reaction to the fermented veggies.
With all that I am doing I still had to increase my meds to 2 Entocort a day and 4 Imodium to have any kind of control and this can vary on loose, soft to firm depending upon what I have eaten. Naturally, I am wondering if any of the meds are doing me any good!
For me I feel like I have gone backwards over the two years, since this is the most medication I have ever had to use AND no food to eat to speak of. Whatever I eliminate, I do not get back.
The REAL ISSUE now is my weight. I continue to lose and currently at 96 pounds (5'5"). I am very scared and am beginning to get my life in order for the alternative.
My Endocrinologist has made me an appt with a GI at Baylor Medical School here in Houston and I can only pray that we can find something that stops this downward cycle.
Think of you all often! Ginny
My on going saga...............
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
My on going saga...............
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
Ginny wrote:For me I feel like I have gone backwards over the two years, since this is the most medication I have ever had to use AND no food to eat to speak of. Whatever I eliminate, I do not get back.
Yes, I identify completely with what you've written. I was hoping (but not too optimistic) that you would get some relief through your new health care providers. Did either of them investigate a mast cell problem?
GloriaYou never know what you can do until you have to do it.
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Ginny, my heart goes out to you. I hope that the specialists at Baylor can help you.
Z, you can do kefir with coconut milk. You can buy it (probably at Whole Foods) or you can make your own. However, I read on some paleo blog that between batches you leave the kefir grains in cow's milk so they will grow, although you rinse them off before putting them in the coconut milk. I have considered this, but I am a little concerned about the cow's milk segment.
I talked to a friend last night who just started her family on the intro to the GAPS diet--boiled meat and vegetables in homemade bone broth. All her kids started throwing up the next morning and when she posted on the forum in a panic she found out that it was a common reaction to taking the carbs out of their diets. The recommendation was some homemade apple juice. She said the turnaround was amazing--within 10 minutes of taking just a few drops, her kids were up and playing with no stomachache. They only needed the few drops of apple juice for a couple of days before their little bodies adjusted. She has high hopes that the GAPS diet will resolve GI issues that she is already seeing in them.
Z, you can do kefir with coconut milk. You can buy it (probably at Whole Foods) or you can make your own. However, I read on some paleo blog that between batches you leave the kefir grains in cow's milk so they will grow, although you rinse them off before putting them in the coconut milk. I have considered this, but I am a little concerned about the cow's milk segment.
I talked to a friend last night who just started her family on the intro to the GAPS diet--boiled meat and vegetables in homemade bone broth. All her kids started throwing up the next morning and when she posted on the forum in a panic she found out that it was a common reaction to taking the carbs out of their diets. The recommendation was some homemade apple juice. She said the turnaround was amazing--within 10 minutes of taking just a few drops, her kids were up and playing with no stomachache. They only needed the few drops of apple juice for a couple of days before their little bodies adjusted. She has high hopes that the GAPS diet will resolve GI issues that she is already seeing in them.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Marliss, that is correct about the coconut "kefir", actually you are to use young green coconut water (buy from a florida source) and I am going to buy the starter kit from "Body of Ecology". It should avoid the casein, however, I have not done well with coconut oil. The GAPS theory has been the most comprehensive and more in line with the imbalance of bacteria. The "healing" broth (I can only use lamb & turkey) is very soothing. I think Gabes was a big fan of "bone broth" and the marrow.
The question is do I have enough time to make this work; you are to stay on it for 2 years. I just can't stop the weight loss and I am retreating to the house. Obviously, if you do not have the beneficial bacteria, how can you heal? That's why they want you to do fermented veggies and get on some kind of kefir, IF it will work for that individual. I also am taking a probiotic daily and cod liver oil. Part of the weight loss issue is you eliminate all carbs so you are eating meat and mostly veggies. I can still eat a banana and applesauce but it must be on an empty stomach or by itself.
Gloria, I approached my alternative med doc with that theory and she thinks that it will cure itself if I do have it, when we get the bacteria right. Honestly, I don't know that I have a mast cell issue, because I do not have any of the "normal" symptoms others have experienced, other than I have allergies. I am beginning to feel that the meds I am taking are doing not much of anything and need something different. I know you relate to my discouragement. I will see the doc at Baylor on Nov 3 and see what he has to say.
Ginny
The question is do I have enough time to make this work; you are to stay on it for 2 years. I just can't stop the weight loss and I am retreating to the house. Obviously, if you do not have the beneficial bacteria, how can you heal? That's why they want you to do fermented veggies and get on some kind of kefir, IF it will work for that individual. I also am taking a probiotic daily and cod liver oil. Part of the weight loss issue is you eliminate all carbs so you are eating meat and mostly veggies. I can still eat a banana and applesauce but it must be on an empty stomach or by itself.
Gloria, I approached my alternative med doc with that theory and she thinks that it will cure itself if I do have it, when we get the bacteria right. Honestly, I don't know that I have a mast cell issue, because I do not have any of the "normal" symptoms others have experienced, other than I have allergies. I am beginning to feel that the meds I am taking are doing not much of anything and need something different. I know you relate to my discouragement. I will see the doc at Baylor on Nov 3 and see what he has to say.
Ginny
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
Ginny,
I'm very sorry to see that your condition is not improving. I've been thinking about this, and it seems clear that a different approach may be needed, (at least for certain parts of your treatment program). IMO, without a stable, (and correct), gut population of bacteria, your food sensitivities are sure to be much worse than they would be with gut homeostasis. Bacteria have the ability to control epigenes, and probably, genes, as well. IOW, gut bacteria probably play a much larger role in the regulation of our immune system, than we realize.
This is pretty radical, but IMO, you might need to consider a fecal gut bacteria transplant, rather than probiotic retention enemas. Commercial probiotics cannot properly attach to the gut, and colonize it, and without that ability, the probiotics being used will never have the ability to regulate your immune system. IMO, the only thing that probiotic bacteria can do is to possibly out-compete other bacteria that are passing through, and prevent them from attaching and starting colonies, but they can never provide the vital services that our original gut bacteria are capable of providing, (such as modulating our immune system).
To work properly, a fecal gut bacteria transplant needs to come from a donor who lives in your environment, and that means a spouse or very close relative who lives with you or nearby. Bacteria from such a donor can and will stick, and they should successfully colonize your gut, and provide the control capabilities that you are now missing.
I realize that this may not appeal to you, but I thought that you should at least be aware of it. Since your lymphocyte count is down, the other option, helminth ova, might not work, because you probably would need a stable population of gut flora and fauna to make that work, and IMO, if you had a stable, working gut population that matched your original population as closely as possibly, you might not need further intervention, anyway, other than a few more normal diet restrictions.
Whatever you choose to do, I wish you all the best, and I hope that you can find a treatment plan that will provide a path back to good health as quickly as possible.
Love,
Tex
I'm very sorry to see that your condition is not improving. I've been thinking about this, and it seems clear that a different approach may be needed, (at least for certain parts of your treatment program). IMO, without a stable, (and correct), gut population of bacteria, your food sensitivities are sure to be much worse than they would be with gut homeostasis. Bacteria have the ability to control epigenes, and probably, genes, as well. IOW, gut bacteria probably play a much larger role in the regulation of our immune system, than we realize.
This is pretty radical, but IMO, you might need to consider a fecal gut bacteria transplant, rather than probiotic retention enemas. Commercial probiotics cannot properly attach to the gut, and colonize it, and without that ability, the probiotics being used will never have the ability to regulate your immune system. IMO, the only thing that probiotic bacteria can do is to possibly out-compete other bacteria that are passing through, and prevent them from attaching and starting colonies, but they can never provide the vital services that our original gut bacteria are capable of providing, (such as modulating our immune system).
To work properly, a fecal gut bacteria transplant needs to come from a donor who lives in your environment, and that means a spouse or very close relative who lives with you or nearby. Bacteria from such a donor can and will stick, and they should successfully colonize your gut, and provide the control capabilities that you are now missing.
I realize that this may not appeal to you, but I thought that you should at least be aware of it. Since your lymphocyte count is down, the other option, helminth ova, might not work, because you probably would need a stable population of gut flora and fauna to make that work, and IMO, if you had a stable, working gut population that matched your original population as closely as possibly, you might not need further intervention, anyway, other than a few more normal diet restrictions.
Whatever you choose to do, I wish you all the best, and I hope that you can find a treatment plan that will provide a path back to good health as quickly as possible.
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.
Ginny, if you can talk your DH into giving you a specimen, let us know if a fecal transplant works. I can't even convince my DH to sending a stool sample to Enterolab. 
Tex,
I'm wondering if there are a lot of us who have to struggle to achieve remission, and suspect that an overload of antibiotics caused our MC. I suspect it, and I believe Polly does, too. Perhaps a poll would shed some light.
Gloria
Tex,
I'm wondering if there are a lot of us who have to struggle to achieve remission, and suspect that an overload of antibiotics caused our MC. I suspect it, and I believe Polly does, too. Perhaps a poll would shed some light.
Gloria
You never know what you can do until you have to do it.
Ginny,
Dr. Fine trained at Baylor under a renowned GI named Dr. John Fordtran. I don't know if Dr. Fordtran is still there, but you may want to be sure that whatever GI you see trained under him. He is speaking at Dr. Fine's upcoming conference.
Hugs,
Polly
Dr. Fine trained at Baylor under a renowned GI named Dr. John Fordtran. I don't know if Dr. Fordtran is still there, but you may want to be sure that whatever GI you see trained under him. He is speaking at Dr. Fine's upcoming conference.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Polly, I am seeing a Dr. Jim Schwartz and I will ask. If you have time would you expound on your pros or cons to doing the Fecal Gut Bacteria Transplant. Tex suggested I get your input.
Gloria, honestly my DH would do anything for me at this point just to see me put weight on and eat. I have had D all day today and now up to 6 Imodium plus the Entocort. This is just ridiculous! AND still do not have any control. BUT I know you have been through it before!! I am really considering doing the transplant; it seems to make the most sense to getting the good bacteria back in order.
One thing, I did have cataract surgery three days before this disease began but outside of that I hadn't taken an antibiotic in a very long time!
Thanks for everyone's support and suggestions. Ginny
Gloria, honestly my DH would do anything for me at this point just to see me put weight on and eat. I have had D all day today and now up to 6 Imodium plus the Entocort. This is just ridiculous! AND still do not have any control. BUT I know you have been through it before!! I am really considering doing the transplant; it seems to make the most sense to getting the good bacteria back in order.
One thing, I did have cataract surgery three days before this disease began but outside of that I hadn't taken an antibiotic in a very long time!
Thanks for everyone's support and suggestions. Ginny
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Ginny
sorry to hear that you are so poorly.
I shared an article about the fecal transplant in the news and research area. One thing that Tex and I discussed was that to optimise benefits and avoid MC inflammation, the fecal matter would have to be from someone who had avoided the ingredients that are your MC triggers
in your case it would need to be GF/DF/SF/EF/Corn Free etc
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14218
fingers and toes crossed that you come up with solution soon
take care
sorry to hear that you are so poorly.
I shared an article about the fecal transplant in the news and research area. One thing that Tex and I discussed was that to optimise benefits and avoid MC inflammation, the fecal matter would have to be from someone who had avoided the ingredients that are your MC triggers
in your case it would need to be GF/DF/SF/EF/Corn Free etc
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14218
fingers and toes crossed that you come up with solution soon
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Ginny,
Desperate situations call for desperate measures. I see no problem at all with considering a fecal transplant. I really can't respond scientifically, since there are no controlled studies to help us know about long-term success, adverse events, etc. But, if it were me, I would consider it. To me, it seems like a relatively low-tech and safe procedure. A lot safer than many other IBD treatments. I would probably prefer that it be injected into the colon - injecting it into the stomach seems risky, IMHO, because of the risk of lung contamination. Would you believe the first time I ever heard about it was on a "Grey's Anatomy" episode several years ago?
I have no idea who might be doing this procedure (or where), but hopefully your GI doc will have an idea. If you do pursue this, I will be MOST interested in your experience. And I would seriously consider it myself, if it eliminated our endless food sensitivities. I'll bet Gloria and others would jump in line too.
Love,
Polly
P.S. I have no idea how they prepare the transplant material. If they isolate out just the microbiota (bacteria) for transplantation, then food antigens (that we might be sensitive to) from the donor may not be an issue.
Desperate situations call for desperate measures. I see no problem at all with considering a fecal transplant. I really can't respond scientifically, since there are no controlled studies to help us know about long-term success, adverse events, etc. But, if it were me, I would consider it. To me, it seems like a relatively low-tech and safe procedure. A lot safer than many other IBD treatments. I would probably prefer that it be injected into the colon - injecting it into the stomach seems risky, IMHO, because of the risk of lung contamination. Would you believe the first time I ever heard about it was on a "Grey's Anatomy" episode several years ago?
I have no idea who might be doing this procedure (or where), but hopefully your GI doc will have an idea. If you do pursue this, I will be MOST interested in your experience. And I would seriously consider it myself, if it eliminated our endless food sensitivities. I'll bet Gloria and others would jump in line too.
Love,
Polly
P.S. I have no idea how they prepare the transplant material. If they isolate out just the microbiota (bacteria) for transplantation, then food antigens (that we might be sensitive to) from the donor may not be an issue.
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Ginny,
I would increase the Entocort to 3 pills a day if I were you. I know it's depressing to increase it because we want so desperately to be off of it. But we do what we have to do. It's better than losing so much weight. In my opinion, you are losing too much weight and need to take steps to stop the weight loss. I had to stop listening to my dietician and began making muffins, pancakes, waffles, bread and pudding in order to gain weight. I was not going to let my weight drop into the 80's.
I've been back on 3 pills per day for seven weeks. I am not seeing perfect Normans and still have plenty of not-so-good days, but I'm able to maintain a weight of 100 lbs., mainly because I'm eating enough carbohydrates. Even though I have less-than-perfect BMs, I feel pretty healthy and have energy. We're all different, and you know your body best. I guess what I'm saying is that I wouldn't put all of my faith in a doctor.
I'm keeping you in my prayers and hope that things will stabilize soon for you.
Gloria
I would increase the Entocort to 3 pills a day if I were you. I know it's depressing to increase it because we want so desperately to be off of it. But we do what we have to do. It's better than losing so much weight. In my opinion, you are losing too much weight and need to take steps to stop the weight loss. I had to stop listening to my dietician and began making muffins, pancakes, waffles, bread and pudding in order to gain weight. I was not going to let my weight drop into the 80's.
I've been back on 3 pills per day for seven weeks. I am not seeing perfect Normans and still have plenty of not-so-good days, but I'm able to maintain a weight of 100 lbs., mainly because I'm eating enough carbohydrates. Even though I have less-than-perfect BMs, I feel pretty healthy and have energy. We're all different, and you know your body best. I guess what I'm saying is that I wouldn't put all of my faith in a doctor.
I'm keeping you in my prayers and hope that things will stabilize soon for you.
Gloria
You never know what you can do until you have to do it.