-
Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.
Who is in remission?
- Thread starter tzvia
- Start date
I'm in remission on Cimzia, a once a month injection. I eat like any twenty something girl, lots of pizza, burgers, thai, cheap Americanized Chinese food, and lots of spicy wings. I've thankfully had no surgeries for my CD yet. I bike thirty minutes a day with my fiancee and then do situps and crunches with her.
I am hoping to see a lot more comments on this post, it is a good one.
however, i realize most people in remission are busy living their lives and dont get on this site much any more....
Maybe David could send out a note to all of his past IBDers to post on here.
We all want to know what has actually worked for others.
thanks for the post TZVIA
however, i realize most people in remission are busy living their lives and dont get on this site much any more....
Maybe David could send out a note to all of his past IBDers to post on here.
We all want to know what has actually worked for others.
thanks for the post TZVIA
I am in remission with no trace of the disease that I can discern.
I ended up using an old method of treating using specific frequencies to damage of destroy specific bacteria. It's an alternative treatment method used most often for Lyme Disease today.
While I have tested dozens of pathogens, the ones that made the difference were mycobacterium tuberculosis subspecies Avium (Map), Mycoplasma pneumonia, E-Coli, H-Pylori.
Easiest to reduce was MAP. Most difficult was Mycoplasma pneumonia.
All experimental and specific to myself. Results determined by reduction in symptoms that were quite noticeable. Only one other person that I know of that has tried this method for Crohns. Also reported positive results.
Hundreds of positive results I know of for Lyme Disease. I use it for that also as my wife has this disease. She is doing well today.
Dan
I ended up using an old method of treating using specific frequencies to damage of destroy specific bacteria. It's an alternative treatment method used most often for Lyme Disease today.
While I have tested dozens of pathogens, the ones that made the difference were mycobacterium tuberculosis subspecies Avium (Map), Mycoplasma pneumonia, E-Coli, H-Pylori.
Easiest to reduce was MAP. Most difficult was Mycoplasma pneumonia.
All experimental and specific to myself. Results determined by reduction in symptoms that were quite noticeable. Only one other person that I know of that has tried this method for Crohns. Also reported positive results.
Hundreds of positive results I know of for Lyme Disease. I use it for that also as my wife has this disease. She is doing well today.
Dan
My son(17) is in "deep remission" according to his GI. He takes 25mg of Methotrexate weekly (pill currently, he started off with injections). He also takes folic acid, vitamin d3, calcium and multivitamins. He drinks 3 Ensures a day along with a normal teen diet. He takes Taekwondo 3 days a week and says he feels like the physical activity helps him a lot.
Cat-a-Tonic
Super Moderator
I was in remission for 2 lovely years. I got there thanks to Entocort and I stayed there for 2 years thanks to Asacol. When they stopped making regular Asacol in the US, that's when I flared up again. I've now been in a mild flare for about a year and a half - I think (not sure) that my flare has stayed mild because I've continued to exercise. I lift weights every other day, and I often do cardio (bike) or yoga or take long walks with my dog on the days I don't lift weights. I'm not sure if exercise has helped keep my flare mild, but it's definitely helped with things like my state of mind, moods, etc. I'm currently back on Entocort and struggling to get back into remission.
I'm really appreciating hearing these stories. I know everyone has a different path to remission, and it's really great to hear. I am going through an especially difficult flare right now and we haven't found a med that works. I'm in so much pain everyday, and hearing remission stories keeps me hopefully that my life won't always seem so hellish.
Rife frequency treatments.
It is a method used by those with Lyme disease who are still ill despite antibiotic use. I am an admin on a private Facebook site for those that want to use the method to help with Lyme Disease. The owner of the site went from suicidal from pain and suffering from Lyme Disease to helping others now that she has recovered. I just told her what worked for my wife over my many years of bringing my wife back to good health.
That is how I originally got into researching it. To treat my wife's disease
I fully admit that I have far more experience treating Lyme Disease and it's coinfections this way, but it's been a pretty good treatment for myself so far.
Just don't go off your medications if you use it. That is not necessary, or even desirable, since it is so untested. My results are only that, my own. I don't have hundreds of recoveries to look at.
You can PM me if you want more specific info.
There is a bit of a learning curve, but I think it is worth trying if you have not had any luck with the more conventional treatments.
Dan
It is a method used by those with Lyme disease who are still ill despite antibiotic use. I am an admin on a private Facebook site for those that want to use the method to help with Lyme Disease. The owner of the site went from suicidal from pain and suffering from Lyme Disease to helping others now that she has recovered. I just told her what worked for my wife over my many years of bringing my wife back to good health.
That is how I originally got into researching it. To treat my wife's disease
I fully admit that I have far more experience treating Lyme Disease and it's coinfections this way, but it's been a pretty good treatment for myself so far.
Just don't go off your medications if you use it. That is not necessary, or even desirable, since it is so untested. My results are only that, my own. I don't have hundreds of recoveries to look at.
You can PM me if you want more specific info.
There is a bit of a learning curve, but I think it is worth trying if you have not had any luck with the more conventional treatments.
Dan
kiny
Well-known member
Been in remission for a while. What got me in remission initially, was infliximab in combination with antibiotics. Diets, well for me diets never helped. I was on EN for 2 year, and still felt sick, I felt better than without the EN, but did still feel sick. Now I'm doing okay.
Also some great doctors who said I'd be okay and doctors who didn't take no for an answer and told me to either take my medication or hit the road. I needed someone to tell me I was underweight, that I couldn't do it on my own and that I was sick. Lots of initial denial on my part that I was fine, I lied and kept saying I was fine when I was clearly not, and kept lying to myself that I didn't need help. And those doctors convinced I did need help and helped me.
Also some great doctors who said I'd be okay and doctors who didn't take no for an answer and told me to either take my medication or hit the road. I needed someone to tell me I was underweight, that I couldn't do it on my own and that I was sick. Lots of initial denial on my part that I was fine, I lied and kept saying I was fine when I was clearly not, and kept lying to myself that I didn't need help. And those doctors convinced I did need help and helped me.
Thanks Kiny. I also tried to handle things on my own for about 5 years with some success and some failures. Then I ended up in the hospital with an obstruction in 2012. I still refused meds after that. But now I've lost weight, I have muscle wasting, steroids aren't as effective, and I have pain everyday most of the day. I'm on humira but it doesn't seem to be helping..., but the docs tell me to give it more time. I'm listening to them now, but it's hell waiting for this med to kick in. I wish they would have told me that remicade kicks in faster, and I would have tried that instead! Honestly, I think I need surgery because I have a pretty serious stricture but the docs don't do surgery until I try a few meds first .... Or my intestine explodes I guess. Whichever comes first
Last edited:
DustyKat
Super Moderator
Both of my kids are in remission. They have exactly the same type Crohn’s, fistulising, and the location is the same too. They both needed surgery early on.
My daughter: Went undiagnosed for 18 months, finally receiving her diagnosis during emergency which resulted in an ileocaecal resection. She had no medication prior to surgery and post op is on Imuran as a maintenance med. She takes no supplements aside from Vit D and uses psyllium to control her bile salt malabsorption diarrhoea. She had no dietary changes early on but after about 3 years she progressed to a vegan/raw vegan diet but in the last year has pulled back somewhat from this and now has the occasional meal of meat/fish. She avoids oils but that is related to the surgery and does eat grains as without them she can’t maintain her weight. She has been in remission for 8 years.
My son: Was diagnosed very quickly and immediately commenced on meds however he soon developed complications, fistula and abscess x2, and after a few months of setback after setback he too had an ileocaecal resection. It was not as extensive as his sister’s. Whilst the meds pre op didn’t work as such I do believe they helped stabilise his condition. Post op he is on Imuran as a maintenance med and Pentasa. He was also on Flagyl for three months post op as some studies suggest it is helpful in maintaining remission. He also uses psyllium for the same reasons as his sister and supplements with B12, Magnesium, Zinc as these are his areas of deficiency. He also takes Turmeric. His diet has not changed…so basically a well balanced diet of every food group with a smattering of take away. He has been in remission since his surgery also, 3.5 years.
So both in surgical induced remission and they have remained that way. Totally different diets. Neither drinks soft drink, they have never really liked them. Sarah runs for exercise and Matt plays loads of soccer.
Looking at my daughter’s recent bloods, and in view of the amount of bowel she has had resected - 70cm, plus the fact that she doesn’t supplement, there is no other explanation for her very pleasing Iron Studies, Folate, Hb and B12 results and her results overall other than her diet and more particularly what I would think is her juicing of leafy green vegetables.
Dusty. xxx
My daughter: Went undiagnosed for 18 months, finally receiving her diagnosis during emergency which resulted in an ileocaecal resection. She had no medication prior to surgery and post op is on Imuran as a maintenance med. She takes no supplements aside from Vit D and uses psyllium to control her bile salt malabsorption diarrhoea. She had no dietary changes early on but after about 3 years she progressed to a vegan/raw vegan diet but in the last year has pulled back somewhat from this and now has the occasional meal of meat/fish. She avoids oils but that is related to the surgery and does eat grains as without them she can’t maintain her weight. She has been in remission for 8 years.
My son: Was diagnosed very quickly and immediately commenced on meds however he soon developed complications, fistula and abscess x2, and after a few months of setback after setback he too had an ileocaecal resection. It was not as extensive as his sister’s. Whilst the meds pre op didn’t work as such I do believe they helped stabilise his condition. Post op he is on Imuran as a maintenance med and Pentasa. He was also on Flagyl for three months post op as some studies suggest it is helpful in maintaining remission. He also uses psyllium for the same reasons as his sister and supplements with B12, Magnesium, Zinc as these are his areas of deficiency. He also takes Turmeric. His diet has not changed…so basically a well balanced diet of every food group with a smattering of take away. He has been in remission since his surgery also, 3.5 years.
So both in surgical induced remission and they have remained that way. Totally different diets. Neither drinks soft drink, they have never really liked them. Sarah runs for exercise and Matt plays loads of soccer.
Looking at my daughter’s recent bloods, and in view of the amount of bowel she has had resected - 70cm, plus the fact that she doesn’t supplement, there is no other explanation for her very pleasing Iron Studies, Folate, Hb and B12 results and her results overall other than her diet and more particularly what I would think is her juicing of leafy green vegetables.
Dusty. xxx
D Bergy- How did you test for those pathogens?
Map was easy, because I got lucky. I used specific frequencies from this site. They are based on the genetic sequence of the particular pathogen.
http://www.dnafrequencies.com
I have successfully used these before, treating Lyme coinfections, so I knew I had a decent chance.
I ran the frequencies once just to see if I had a response of any kind. Occasionally, but not often, you can feel if it hits something. I did not feel anything internally. I did feel it on my shin where I had a nasty patch of psoriasis that came with my Crohns. It made a distinct tingling sensation.
Within the week, the psoriasis first flared worse. Then was gone completely. I tried many methods to get rid of it before. I couldn't budge it.
In retrospect, I believe it was actually the start of Pyoderma gangrenosum, but was misdiagnosed.
That was my evidence I had the pathogen, I also knew it would take longer treatments to get rid of it internally.
After more treatments I had improvement in Diahrea and less discomfort. Not 100% but noticeable improvement.
All the other pathogens had similar circumstances in that their reduction resulted in improvement. The mycoplasma was the last one I figured out. That caused me to speed to the toilet all night. Like I had the flu. I treated that for a couple of hours right off. Not too smart, but it cleaned me out all at once.
That improved my gums for the first time in my life. Lessened the crushing fatigue that haunted me before. The effects of these treatments fix thing that you do not expect.
These are just my results. I suspect MAP and E-Coli may be quite common with Crohns. Mycoplasma is common in the general population, but may not always be part of Crohns. Others may have additional opportunistic pathogens contributing to the disease.
I could have others also. It does appear I have reduced or eliminated the worst ones in my case. Hard to know for certain.
In any case, I do feel this method has good potential as an effective treatment.
It's experimental, that's for sure, but relatively safe.
The whole story is way too long to document here, but realize I had way more failures before I had success. It was a lot of trial and error.
Dan
http://www.dnafrequencies.com
I have successfully used these before, treating Lyme coinfections, so I knew I had a decent chance.
I ran the frequencies once just to see if I had a response of any kind. Occasionally, but not often, you can feel if it hits something. I did not feel anything internally. I did feel it on my shin where I had a nasty patch of psoriasis that came with my Crohns. It made a distinct tingling sensation.
Within the week, the psoriasis first flared worse. Then was gone completely. I tried many methods to get rid of it before. I couldn't budge it.
In retrospect, I believe it was actually the start of Pyoderma gangrenosum, but was misdiagnosed.
That was my evidence I had the pathogen, I also knew it would take longer treatments to get rid of it internally.
After more treatments I had improvement in Diahrea and less discomfort. Not 100% but noticeable improvement.
All the other pathogens had similar circumstances in that their reduction resulted in improvement. The mycoplasma was the last one I figured out. That caused me to speed to the toilet all night. Like I had the flu. I treated that for a couple of hours right off. Not too smart, but it cleaned me out all at once.
That improved my gums for the first time in my life. Lessened the crushing fatigue that haunted me before. The effects of these treatments fix thing that you do not expect.
These are just my results. I suspect MAP and E-Coli may be quite common with Crohns. Mycoplasma is common in the general population, but may not always be part of Crohns. Others may have additional opportunistic pathogens contributing to the disease.
I could have others also. It does appear I have reduced or eliminated the worst ones in my case. Hard to know for certain.
In any case, I do feel this method has good potential as an effective treatment.
It's experimental, that's for sure, but relatively safe.
The whole story is way too long to document here, but realize I had way more failures before I had success. It was a lot of trial and error.
Dan
My son and husband are in remission.
Hubby has been in remission for about 13 years on azathioprine. As far as diet goes he eats pretty much everything (except popcorn) but does eat smaller meals more frequently, due to scar tissue if he eats to fast it gets backed up and comes back up.
My son has reached remission twice the first time was on LDN and scopes showed only healthy tissue but it wasn't strong enough to keep him there. He developed cellulitis and flared and we couldn't get him back to remission on LDN so he was switched to remicade and there was an immediate turn around even more so then when on LDN. He had an appetite (something he did not have while LDN and had to have supplemental EN in order to gain weight as he was severely underweight) he has gained 25 pounds since starting in January and grown 4" (he did not grow for nearly 3 years prior). As far as diet, we've tried most of them and they have not worked for us. He now eats like any other teenage boy, my grocery bill has increased because he is actually hungry all the time.
He plays sports and is just an active average 15 year old.
Hubby has been in remission for about 13 years on azathioprine. As far as diet goes he eats pretty much everything (except popcorn) but does eat smaller meals more frequently, due to scar tissue if he eats to fast it gets backed up and comes back up.
My son has reached remission twice the first time was on LDN and scopes showed only healthy tissue but it wasn't strong enough to keep him there. He developed cellulitis and flared and we couldn't get him back to remission on LDN so he was switched to remicade and there was an immediate turn around even more so then when on LDN. He had an appetite (something he did not have while LDN and had to have supplemental EN in order to gain weight as he was severely underweight) he has gained 25 pounds since starting in January and grown 4" (he did not grow for nearly 3 years prior). As far as diet, we've tried most of them and they have not worked for us. He now eats like any other teenage boy, my grocery bill has increased because he is actually hungry all the time.
He plays sports and is just an active average 15 year old.
