As a brief introduction I was diagnosed with CC and Crohns this past April and was treated successfully with Entocort for the past 6 months at least for the CC.
The Crohns I have is not in the ilium but higher up in the small intestine, in the region known as the jejunum. My doctor agreed to try just the Entocort coupled with a GF/DF and limited soy diet for 6 months to see if this would be adequate to control both conditions. The Entocort does not effectively treat the jejunum region of the small bowel as it does not activate until it reaches the ilium.
Two weeks ago I had a follow-up colonoscopy and a pill camera endoscopy to evaluate the CC and the Crohns. The results are:
--The CC has seen some minor improvement with the basement membrane collagen layer reduced from an earlier average of 52um to a current average of 46um (normal < 7um). The pathology report did however note a increase in the lymphocyte count but I do not have the numbers
-- The Crohns disease is estimated to have increased in 'activity' (visual presentation) by roughly 25% and appears to be presenting a bit more in the upper portion of the ilium. These results are in comparison to testing done 6 months ago.
I have noticed during the past 4 weeks an increase in the amount of pain that I feel within 1 hour of eating. My GI feels that this is due to the Crohns.
The question now is how to treat both diseases. My GI feels that with the collagen membrane not reducing that much in thickness after 6 months, use of a the Entocort for another 5 months (what he is willing to do with steroids) will not be that useful. He is recommending the use of one of the biologic immune modulators like Immuran or Remicade, both of which frighten me given what they do to the immune system.
The question I have what would be other non-steroidal options that could be used for the long term. While the diet may be able to manage the CC, and the CC does not usually appear to permanently affect the bowel, the Crohns is a degenerative disease and the damage is cumulative. In many cases the damaged portion(s) have to removed surgically.
My initial goals were to stay with the strict paleo diet, with the hope that that would allow for the eventual discontinuation of the Entocort and the management of CC and significantly slowing down the Crohns.
To say the least I have some thinking to do here and would appreciate any inputs. It feels like being caught between a rock and a hard place.
Thanks
-Joe[quote][/quote]
At the Crossroads Making a Decision
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Dear Joe
I am so sorry to hear your results. That is really tough.
I do not feel qualified to give advice....But thinking out loud......could the Entocort be made to release earlier in the GI tract? If so could that work? Also its seems the "CC" is becoming more "LC"....unless there is a 'margin of error' that should be taken into account with different sets of biopsies?
I am sure others will be here to give support and thoughts.
I am thinking about you and sending hopeful vibs from across the seas))))
Best, ant
I am so sorry to hear your results. That is really tough.
I do not feel qualified to give advice....But thinking out loud......could the Entocort be made to release earlier in the GI tract? If so could that work? Also its seems the "CC" is becoming more "LC"....unless there is a 'margin of error' that should be taken into account with different sets of biopsies?
I am sure others will be here to give support and thoughts.
I am thinking about you and sending hopeful vibs from across the seas))))
Best, ant
Joe,
That's some mighty depressing news about the Crohn's. I hate to try to second guess your GI doc about the MC, but I have a hunch that like most GI specialists, he has unrealistic expectations for healing progress of the colon, for someone with MC. It takes a long, long time for the histology of the colon to return to normal, and I'll bet a GF cookie that he doesn't understand that. He's probably basing his reference on his knowledge of Crohn's disease. The damage from Crohn's can heal much more rapidly, since it's in the form of actual physical damage, and physical damage to almost any part of the digestive system heals relatively fast, compared with the healing rate of damage to other organs.
On the other hand, the markers of CC are very slow to resolve, because it's not so much a healing process, as a resolution of an autoimmune issue, and the body seems to be quite slow in removing all the markers of autoimmune events. (Consider the fact that something like 85% of adult celiacs still show limited healing to the villi of their small intestine, after the passage of 2 or 3 years on the GF diet). Because of that, IMO, the reversal of your CC damage is making very good progress, and you may soon be approaching the time when diet alone will be sufficient to handle the CC issue. I wouldn't be overly concerned at this point, about an increase in lymphocytes, because for one thing, the average count depends on where the biopsy samples are taken, and for another thing, it's not really uncommon for MC to segue from one form to another, over time, for some patients. Frankly, IMO, the fact that your CC showed any improvement of markers at all, is somewhat surprising, for such a short treatment span. I would view a reduction in average collagen band thickness of 12%, as an "decent" amount of progress for such a short time span, (but, of course, I'm no doctor).
The Crohn's issue, of course, is a completely different matter. That's disappointing news, for sure. From what I understand, though, jejunoileitis, (only), is a somewhat rare form, (Crohn's usually affects the ileum and/or colon). How does your GI doc usually treat this form, (of course, you may be the first case of jejunal Crohn's that he has encountered)?
As Ant mentioned, has your doctor considered budesonide, (without the Entocort EC encapsulation), as a possibility. From research studies that I have seen, I get the impression that even without the restricted delivery, budesonide has a lower tendency to cause seropis side effects, than the other corticosteroids, but I have no idea if it would be considered to be a "safe" treatment without the encapsulation. I'm aware of at least one member who has used it that way, (for MC, not Crohn's).
I have no idea how successful Imuran might be, at controlling the progress of Crohn's, but we have more than one member of this board, I believe, who have tried it without success, in an attempt to control their MC symptoms. One used it for over a year, I believe, without significant improvement.
The anti-TNF drugs scare me, (especially for someone at your relatively young age), but there are precious few options available, at this point.
This is not an approved treatment, of course, but if I were in your shoes, I believe that I would be very tempted to try a therapeutic dose of vitamin D, especially since a vitamin D deficiency appears to have been the likely cause of the onset of your disease, in the first place. A therapeutic dose would be enough vitamin D to boost your 25t(OH)D level to above 100 ng/mL, and hold it there, until the disease goes into remission, (but don't allow the 25(OH)D level to go over 150 ng/mL). I have no doubt that your doctor would consider that to be a very outlandish suggestion, though.
Another treatment option, (that I'm sure your GI doc would not go along with), would be to try a long-term antibiotic regimen, directed at a possible MAP infection. Obviously, something is causing your Crohn's to spread to new areas, and I'm convinced that MAP is a possible cause of Crohn's disease. Since that's unproven therapy, though, I doubt that most GI docs would even consider it as a possible treatment.
Maybe someone else will have some better suggestions.
Tex
That's some mighty depressing news about the Crohn's. I hate to try to second guess your GI doc about the MC, but I have a hunch that like most GI specialists, he has unrealistic expectations for healing progress of the colon, for someone with MC. It takes a long, long time for the histology of the colon to return to normal, and I'll bet a GF cookie that he doesn't understand that. He's probably basing his reference on his knowledge of Crohn's disease. The damage from Crohn's can heal much more rapidly, since it's in the form of actual physical damage, and physical damage to almost any part of the digestive system heals relatively fast, compared with the healing rate of damage to other organs.
On the other hand, the markers of CC are very slow to resolve, because it's not so much a healing process, as a resolution of an autoimmune issue, and the body seems to be quite slow in removing all the markers of autoimmune events. (Consider the fact that something like 85% of adult celiacs still show limited healing to the villi of their small intestine, after the passage of 2 or 3 years on the GF diet). Because of that, IMO, the reversal of your CC damage is making very good progress, and you may soon be approaching the time when diet alone will be sufficient to handle the CC issue. I wouldn't be overly concerned at this point, about an increase in lymphocytes, because for one thing, the average count depends on where the biopsy samples are taken, and for another thing, it's not really uncommon for MC to segue from one form to another, over time, for some patients. Frankly, IMO, the fact that your CC showed any improvement of markers at all, is somewhat surprising, for such a short treatment span. I would view a reduction in average collagen band thickness of 12%, as an "decent" amount of progress for such a short time span, (but, of course, I'm no doctor).
The Crohn's issue, of course, is a completely different matter. That's disappointing news, for sure. From what I understand, though, jejunoileitis, (only), is a somewhat rare form, (Crohn's usually affects the ileum and/or colon). How does your GI doc usually treat this form, (of course, you may be the first case of jejunal Crohn's that he has encountered)?
As Ant mentioned, has your doctor considered budesonide, (without the Entocort EC encapsulation), as a possibility. From research studies that I have seen, I get the impression that even without the restricted delivery, budesonide has a lower tendency to cause seropis side effects, than the other corticosteroids, but I have no idea if it would be considered to be a "safe" treatment without the encapsulation. I'm aware of at least one member who has used it that way, (for MC, not Crohn's).
I have no idea how successful Imuran might be, at controlling the progress of Crohn's, but we have more than one member of this board, I believe, who have tried it without success, in an attempt to control their MC symptoms. One used it for over a year, I believe, without significant improvement.
The anti-TNF drugs scare me, (especially for someone at your relatively young age), but there are precious few options available, at this point.
This is not an approved treatment, of course, but if I were in your shoes, I believe that I would be very tempted to try a therapeutic dose of vitamin D, especially since a vitamin D deficiency appears to have been the likely cause of the onset of your disease, in the first place. A therapeutic dose would be enough vitamin D to boost your 25t(OH)D level to above 100 ng/mL, and hold it there, until the disease goes into remission, (but don't allow the 25(OH)D level to go over 150 ng/mL). I have no doubt that your doctor would consider that to be a very outlandish suggestion, though.
Another treatment option, (that I'm sure your GI doc would not go along with), would be to try a long-term antibiotic regimen, directed at a possible MAP infection. Obviously, something is causing your Crohn's to spread to new areas, and I'm convinced that MAP is a possible cause of Crohn's disease. Since that's unproven therapy, though, I doubt that most GI docs would even consider it as a possible treatment.
Maybe someone else will have some better suggestions.
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.
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Ant first of all thanks for the good wishes, your kind 'vibes' were truly and thoroughly welcomed. If I understand the issue though the Crohns is going to need a lifelong management technique and steroids as you know can have issues with long term use.
Tex as always you bring up some good and thoughtful points. First I should mention that your GF cookies (aka Oz Leda biscuits) are still safe until cooler weather prevails
As for as budesonide goes I think that my doctor would be somewhat hesitant in using steroids for any significant length of time. From my understanding Crohns ofter requires constant management. I was surprised he was allowing Entocort for up to 1 year.
I agree that the CC did show some reasonable improvement given how stubborn it can be. I attribute that to the very kind individual(s) here who suggested and outlined the excellent diet that I have been on and somewhat to the Entocort.
Thanks again to all on this site for your kind and thoughtful help
This is a bit of a hard decision as the TNF drugs can have significant side effects, but so can unchecked Crohns. I am going to continue to listen to the comments and suggestions here as I meet with my doctor on the 15th to discuss this further and discuss future treatments.
Thanks for all the input, I certainly would welcome any additional comments.
Thanks again to all here, I'm not sure where I would be today without the wonderful members of this family
--Joe
Tex as always you bring up some good and thoughtful points. First I should mention that your GF cookies (aka Oz Leda biscuits) are still safe until cooler weather prevails
As for as budesonide goes I think that my doctor would be somewhat hesitant in using steroids for any significant length of time. From my understanding Crohns ofter requires constant management. I was surprised he was allowing Entocort for up to 1 year.
I agree that the CC did show some reasonable improvement given how stubborn it can be. I attribute that to the very kind individual(s) here who suggested and outlined the excellent diet that I have been on and somewhat to the Entocort.
Thanks again to all on this site for your kind and thoughtful help
This is a bit of a hard decision as the TNF drugs can have significant side effects, but so can unchecked Crohns. I am going to continue to listen to the comments and suggestions here as I meet with my doctor on the 15th to discuss this further and discuss future treatments.
Thanks for all the input, I certainly would welcome any additional comments.
Thanks again to all here, I'm not sure where I would be today without the wonderful members of this family
--Joe
Joe
Oh, Joe,
No question you are between a rock and a hard place.
It must be so disappointing to hear about the increase in the Crohn's. You have been so diligent with diet and in leaving no stone unturned - considering acupuncture, for example. I agree with Tex that the MC improvement is impressive in such a short period of time. My biopsy showed no change in MC activity after 5 YEARS of diet - it wasn't until the recent biopsy 10 years after diagnosis that the MC was gone.
I checked out the Mayo Clinic website since they have been ranked number 1 in digestive disorders by U.S. News and World Report for 20 years now. You probably have already done this, but if not, check out
www.mayoclinic.org/news2008-rst/5014.html
You probably don't want to hear it, but they have done research showing that Remicade alone or together with Imuran is more effective at achieving remission than Imuran alone. I know how scary it is to think of taking these meds - I would be extremely concerned too. However, we need to keep in mind the very serious complications that result from progressive Crohn's - those of us with MC don't appreciate how lucky we are not to be at risk for the fistulae, abscesses, bowel surgeries, and other problems associated with Crohn's. Before jumping to those drugs, I am wondering if your doc has considered prednisone. Of course, none of us wants to take it either, but it can be beneficial in some cases, and it is considered less risky than the anti TNFs. Of course, the budesonide that Tex and Ant mentioned would probably be safer than prednisone. It might be worth a trial. And, as Tex said, a trial of antibiotics might be indicated - for example, Cipro or Flagyl, etc.
Here are my thoughts:
1. I haven't been to any Crohn's websites, but I'm sure the drug issue has been discussed thoroughly there. Are you involved with any of them?
2. Try to find out who is the foremost authority on treating jejunal Crohn's - this might be found on a support website too. Contact the expert personally to learn of his/her recommendations.
3. If I were you, I think my priority would be to get that Crohn's in remission as quickly as possible, especially because of the serious complications due to active disease. Once in remission, you might then have an excellent chance of maintaining it using the paleo diet and "safer" meds. You are a true pioneer, because I don't think this type of approach has been used by the usual Crohn's sufferer. IOW, it may take some "big gun" meds to achive that remission, but once achieved, you may be able to maintain with your current plan.
Easy for me to say, right? You know that I am one who elected to treat my MC without meds. And anti - TNFs scare me; however, I am a great respecter of Crohn's, which is much more virulent than MC. Plus I have a relative who had a progressive case with every possible complication over many years, so I know firsthand how tricky Crohn's can be.
I hope I don't sound like doom and gloom. It's just that Crohn's is such a force to be reckoned with that I want you to explore all options to the fullest.
Lots of love,
Polly
No question you are between a rock and a hard place.
It must be so disappointing to hear about the increase in the Crohn's. You have been so diligent with diet and in leaving no stone unturned - considering acupuncture, for example. I agree with Tex that the MC improvement is impressive in such a short period of time. My biopsy showed no change in MC activity after 5 YEARS of diet - it wasn't until the recent biopsy 10 years after diagnosis that the MC was gone.I checked out the Mayo Clinic website since they have been ranked number 1 in digestive disorders by U.S. News and World Report for 20 years now. You probably have already done this, but if not, check out
www.mayoclinic.org/news2008-rst/5014.html
You probably don't want to hear it, but they have done research showing that Remicade alone or together with Imuran is more effective at achieving remission than Imuran alone. I know how scary it is to think of taking these meds - I would be extremely concerned too. However, we need to keep in mind the very serious complications that result from progressive Crohn's - those of us with MC don't appreciate how lucky we are not to be at risk for the fistulae, abscesses, bowel surgeries, and other problems associated with Crohn's. Before jumping to those drugs, I am wondering if your doc has considered prednisone. Of course, none of us wants to take it either, but it can be beneficial in some cases, and it is considered less risky than the anti TNFs. Of course, the budesonide that Tex and Ant mentioned would probably be safer than prednisone. It might be worth a trial. And, as Tex said, a trial of antibiotics might be indicated - for example, Cipro or Flagyl, etc.
Here are my thoughts:
1. I haven't been to any Crohn's websites, but I'm sure the drug issue has been discussed thoroughly there. Are you involved with any of them?
2. Try to find out who is the foremost authority on treating jejunal Crohn's - this might be found on a support website too. Contact the expert personally to learn of his/her recommendations.
3. If I were you, I think my priority would be to get that Crohn's in remission as quickly as possible, especially because of the serious complications due to active disease. Once in remission, you might then have an excellent chance of maintaining it using the paleo diet and "safer" meds. You are a true pioneer, because I don't think this type of approach has been used by the usual Crohn's sufferer. IOW, it may take some "big gun" meds to achive that remission, but once achieved, you may be able to maintain with your current plan.
Easy for me to say, right? You know that I am one who elected to treat my MC without meds. And anti - TNFs scare me; however, I am a great respecter of Crohn's, which is much more virulent than MC. Plus I have a relative who had a progressive case with every possible complication over many years, so I know firsthand how tricky Crohn's can be.
I hope I don't sound like doom and gloom. It's just that Crohn's is such a force to be reckoned with that I want you to explore all options to the fullest.
Lots of love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Re: 'Between a Rock and a Hard Place'
Wow Joe I am so sorry you didnt get better news...I dont know much about Crohn's, but from your posts you appear to be very dedicated to diet and managing your issues...seems like sometimes the harder we try to help and educate ourselves the worse we get...just isnt fair 
I know that "caught between a rock and a hard place" feeling...I have felt that way for awhile trying to manage my CC, and I also understand the worry about lowering the immune system, and the way Dr's just seem to blow off the many concerns we have in dealing with it all really infuriates me !! I will certainly be keeping you in my prayers.
I do have a question based on your quote below...does entocort dimish the collagen layer in the colon ? I was told entocort just reduces inflammation during a 'flare', and that CC is forever once 'ya have it, that there is "no cure" and will be a life long 'thing' that only gets worse with age... ( I feel as if I have been given a life sentence )
Anyway, your quote if I am reading it right says you have had a reduction in the collagan ... ( am I understanding that right ) ? if so maybe there is some hope in some aspects of MC afterall
....sending good thoughts your way, Memory
I know that "caught between a rock and a hard place" feeling...I have felt that way for awhile trying to manage my CC, and I also understand the worry about lowering the immune system, and the way Dr's just seem to blow off the many concerns we have in dealing with it all really infuriates me !! I will certainly be keeping you in my prayers.
I do have a question based on your quote below...does entocort dimish the collagen layer in the colon ? I was told entocort just reduces inflammation during a 'flare', and that CC is forever once 'ya have it, that there is "no cure" and will be a life long 'thing' that only gets worse with age... ( I feel as if I have been given a life sentence )
Anyway, your quote if I am reading it right says you have had a reduction in the collagan ... ( am I understanding that right ) ? if so maybe there is some hope in some aspects of MC afterall
....sending good thoughts your way, Memoryjoefnh wrote: --The CC has seen some minor improvement with the basement membrane collagen layer reduced from an earlier average of 52um to a current average of 46um (normal < 7um).
Hi Joe, I'm just weighing in here to give you all the support I can through prayers, positive thoughts, and good energy to help you with the decisions you will need to make. It sounds like you've made great progress with the MC. You are a fighter and your strong spirit will guide you through the next phase of your healing. It sounds like Tex and Polly have given you some excellent advice on some different treatments to pursue. You seem to have great instincts on managing your health and I'm sure you'll be led to the right path to follow. We will all be here supporting you and I'm sure your experience will help many others, JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Hi Memory,Memory wrote:I do have a question based on your quote below...does entocort dimish the collagen layer in the colon ? I was told entocort just reduces inflammation during a 'flare', and that CC is forever once 'ya have it, that there is "no cure" and will be a life long 'thing' that only gets worse with age... ( I feel as if I have been given a life sentence )
Anyway, your quote if I am reading it right says you have had a reduction in the collagan ... ( am I understanding that right ) ? if so maybe there is some hope in some aspects of MC afterall
To be honest, I don't recall ever seeing a research report where the resolution of the collagen band thickening due to CC is specifically addressed. However, it's generally true that if the disease goes into remission, cellular histology is restored, so if the symptoms of CC are controlled, then collagen band thickness should return to normal, given enough time. I'm not sure that it will return completely to normal with the use of Entocort alone, because as you mention, it suppresses inflammation, and it really shouldn't directly affect collagen synthesis, or dissolution. However, since the collagen band thickening is apparently a side effect of the inflammation, then a reduction in the inflammation level should result in a reduction in the collagen band thickness. No one knows exactly how Entocort works to resolve the inflammation, for that matter, so - who knows.
I would speculate that in Joe's case, the improvement in collagen band thickness was a response to the diet, rather than a response to Entocort, because for those who are fortunate enough to figure out all their food sensitivities, remission of symptoms, (and histology), does not require a medication - the diet is sufficient.
Yes, once the disease is triggered, we have it forever, but that does not mean that we will have symptoms for the rest of our lives. As Polly proved, if we are diligent, we can achieve and maintain remission, and given enough time, our histology will return to normal, (IOW, there will be no evidence of the disease in biopsy samples taken from the colon). A few people are even lucky enough to enjoy spontaneous remission, but most of us have to be diligent, in order to maintain that status.
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.
Joe this is from my pay website
My blankety blank email won't send right now!
Someone's Mother found a "milkshake treatment for Crohn's.Here's a quote from the article.
"She found a treatment used across Europe called "enteral nutrition." This milkshake is kind of like a nutritional energy drink, and it put Steve’s disease in remission."
Someone's Mother found a "milkshake treatment for Crohn's.Here's a quote from the article.
"She found a treatment used across Europe called "enteral nutrition." This milkshake is kind of like a nutritional energy drink, and it put Steve’s disease in remission."
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Joe,
I'm sorry about the progression of your crohn's. My best friend from high school is battling a pretty severe case of Crohn's, so I'll share what little I know about her experience. After diagnosis, she used Asacol and several other meds. She said they worked for a short while, then she needed something more hard core. Even on 20 mgs of prednisone, she still took Immodium like candy and still had significant D. She started monthly Remicade infusions a couple of years ago and loved the results. She still had D but could regain lost weight, leave the house, etc. I don't think it actually put her disease in remission, because if she delayed her infusions by a week or two, her symptoms quickly returned. Recently she developed significant joint pain and other non-GI symptoms. Turns out she is developing drug-induced Lupus and she can no longer use Remicade. I always worried about the risk of lymphoma. Lupus was totally unexpected. So, all I can say is she loved Remicade when she could get it, but it turned out not to be a permanent solution. Obviously results will vary by individual.
I can tell you that she has done very little experimentation with diet, other than a brief dairy-free period. I have begged her to try, get enterolab testing etc, but money and time are an issue.
I read in my enterolab results that yeast sensitivity is a factor in Crohn's. You didn't mention in your post, are you yeast free too?
I'm sorry about the progression of your crohn's. My best friend from high school is battling a pretty severe case of Crohn's, so I'll share what little I know about her experience. After diagnosis, she used Asacol and several other meds. She said they worked for a short while, then she needed something more hard core. Even on 20 mgs of prednisone, she still took Immodium like candy and still had significant D. She started monthly Remicade infusions a couple of years ago and loved the results. She still had D but could regain lost weight, leave the house, etc. I don't think it actually put her disease in remission, because if she delayed her infusions by a week or two, her symptoms quickly returned. Recently she developed significant joint pain and other non-GI symptoms. Turns out she is developing drug-induced Lupus and she can no longer use Remicade. I always worried about the risk of lymphoma. Lupus was totally unexpected. So, all I can say is she loved Remicade when she could get it, but it turned out not to be a permanent solution. Obviously results will vary by individual.
I can tell you that she has done very little experimentation with diet, other than a brief dairy-free period. I have begged her to try, get enterolab testing etc, but money and time are an issue.
I read in my enterolab results that yeast sensitivity is a factor in Crohn's. You didn't mention in your post, are you yeast free too?
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
-
Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Dear Joe,
What disappointing news this must have been for you. You have been so careful to do everything right and so very committed to your healing. My heart aches for you. I don't have much to offer in terms of suggestions or discussion on what courses of action you might take from here, other than what I have written below, but I will be sending good thoughts and hopes your way, too, for a resolution for you.
" Someone's Mother found a "milkshake treatment for Crohn's. Here's a quote from the article. She found a treatment used across Europe called "enteral nutrition." This milkshake is kind of like a nutritional energy drink, and it put Steve’s disease in remission."
Thanks, Joan, for posting this info and Joe, I think you may be interested in what I have found in some research I did tonight on this. Enteral nutrition is basically just a totally liquid or elemental diet and I have found a site about a product, called Absorb Plus, that has quite a bit of useful info on it. The product and a way of dealing with Chrohns using enteral nutrition was developed by a woman named Jini Pattel Thompson who has (had?) Chrohn's disease herself. She has also written a book called the IBD REMISSION DIET. I am kind of excited and hopeful based on what I have read tonight and think it is worth checking out. Here are some quotes off the site about the diet
IBD REMISSION DIET
Hardcover, 168 pages
THE IBD REMISSION DIET is an easy to follow, 100% natural program that uses an elemental diet and specific supplementation plan to induce disease remission and heal affected areas of the gastrointestinal tract. It is ideal for anyone with Crohn's, Ulcerative Colitis, Diverticulitis or Irritable Bowel Syndrome who has had enough of the drugs and surgery cycle. If you're ready to take control of your health and body and heal your disease naturally and effectively, then take advantage of this step-by-step program to induce disease remission. In fact, THE IBD REMISSION DIET is such a wonderful, holistic program of whole-body healing that secondary health issues may also be resolved by following the diet and supplementation plan.
If you've been looking for a very detailed, step-by-step plan that works quickly and effectively to induce disease remission (average duration 3-6 weeks) and reclaim your natural state of health, this is the book for you. A wonderful, natural alternative to damaging prescription drugs and surgery, dozens of clinical, medical studies show an elemental diet is as effective as steroids (prednisone) at inducing remission for inflammatory bowel disease.
"Elemental diet therapy is as effective as steroids in inducing remission, whilst avoiding steroid side effects.""
Dr. Bhupinder Sandhu, MD "In children with active Crohn's disease, exclusive nutritional therapy shows a more rapid effect than steroids in inducing clinical remission and is markedly more effective than steroids in producing healing of mucosal inflammation." Dr. Robert Canani, MD
[quote][/quote] (Red highlighting mine)
Just watching her talk about the product and reading the info on it has convinced me that this is not a scam product but one developed carefully and obviously by someone who has "been there" . My one concern about this particular product is that it uses Whey powder as it's protein source and I have always thought I cannot tolerate it but the site says that all the casein and 95% of the lactose have been removed form it's whey protein. Anyhow, I am seriously thinking about giving this a shot. The website has a lot of valuable info about this treatment. Here is the link to her story and the site. http://www.absorbplus.com/story.php
Linda
What disappointing news this must have been for you. You have been so careful to do everything right and so very committed to your healing. My heart aches for you. I don't have much to offer in terms of suggestions or discussion on what courses of action you might take from here, other than what I have written below, but I will be sending good thoughts and hopes your way, too, for a resolution for you.
" Someone's Mother found a "milkshake treatment for Crohn's. Here's a quote from the article. She found a treatment used across Europe called "enteral nutrition." This milkshake is kind of like a nutritional energy drink, and it put Steve’s disease in remission."
Thanks, Joan, for posting this info and Joe, I think you may be interested in what I have found in some research I did tonight on this. Enteral nutrition is basically just a totally liquid or elemental diet and I have found a site about a product, called Absorb Plus, that has quite a bit of useful info on it. The product and a way of dealing with Chrohns using enteral nutrition was developed by a woman named Jini Pattel Thompson who has (had?) Chrohn's disease herself. She has also written a book called the IBD REMISSION DIET. I am kind of excited and hopeful based on what I have read tonight and think it is worth checking out. Here are some quotes off the site about the diet
IBD REMISSION DIET
Hardcover, 168 pages
THE IBD REMISSION DIET is an easy to follow, 100% natural program that uses an elemental diet and specific supplementation plan to induce disease remission and heal affected areas of the gastrointestinal tract. It is ideal for anyone with Crohn's, Ulcerative Colitis, Diverticulitis or Irritable Bowel Syndrome who has had enough of the drugs and surgery cycle. If you're ready to take control of your health and body and heal your disease naturally and effectively, then take advantage of this step-by-step program to induce disease remission. In fact, THE IBD REMISSION DIET is such a wonderful, holistic program of whole-body healing that secondary health issues may also be resolved by following the diet and supplementation plan.
If you've been looking for a very detailed, step-by-step plan that works quickly and effectively to induce disease remission (average duration 3-6 weeks) and reclaim your natural state of health, this is the book for you. A wonderful, natural alternative to damaging prescription drugs and surgery, dozens of clinical, medical studies show an elemental diet is as effective as steroids (prednisone) at inducing remission for inflammatory bowel disease.
"Elemental diet therapy is as effective as steroids in inducing remission, whilst avoiding steroid side effects.""
Dr. Bhupinder Sandhu, MD "In children with active Crohn's disease, exclusive nutritional therapy shows a more rapid effect than steroids in inducing clinical remission and is markedly more effective than steroids in producing healing of mucosal inflammation." Dr. Robert Canani, MD
[quote][/quote] (Red highlighting mine)
Just watching her talk about the product and reading the info on it has convinced me that this is not a scam product but one developed carefully and obviously by someone who has "been there" . My one concern about this particular product is that it uses Whey powder as it's protein source and I have always thought I cannot tolerate it but the site says that all the casein and 95% of the lactose have been removed form it's whey protein. Anyhow, I am seriously thinking about giving this a shot. The website has a lot of valuable info about this treatment. Here is the link to her story and the site. http://www.absorbplus.com/story.php
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
an oldie
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
WOW!
Joe, this looks really promising!!! I would opt for this treatment first, assuming that it is effective for jejunal Crohn's. Diet always trumps meds, right? I wonder if your doc has heard of it. My main question - the article date is 1984, so why hasn't this become more widely accepted during the ensuing 26 years? Of course, given what we know about the lack of info about MC and diet I guess it is not surprising.
Love,
Polly
P.S. Do you know what your current vitamin D level is? I forgot to say earlier that I agree with Tex that you should be sure that yours is optimally high.
Joe, this looks really promising!!! I would opt for this treatment first, assuming that it is effective for jejunal Crohn's. Diet always trumps meds, right? I wonder if your doc has heard of it. My main question - the article date is 1984, so why hasn't this become more widely accepted during the ensuing 26 years? Of course, given what we know about the lack of info about MC and diet I guess it is not surprising.
Love,
Polly
P.S. Do you know what your current vitamin D level is? I forgot to say earlier that I agree with Tex that you should be sure that yours is optimally high.
Blessed are they who can laugh at themselves, for they shall never cease to be amused.