Natural Remedies?

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AUSSIET
Regular Member


Date Joined May 2013
Total Posts : 44
   Posted 5/20/2013 5:14 PM (GMT -7)   
Hi everyone,

Im currently on Remicade and it is slowly working after 8 mths but I still can hardly leave the house so I am going back to basics and trying to rebuild my health naturally. I am interested if others have taken this approach? If so what supplements have worked for you?

I'm particularly interested to hear from those who have had UC for a very long time and had it quite severe (ie Hospital admissions, pooping pants constantly, fevers, heavy bleeding)..

Also has anyone read Listen to your Gut- by Jini Patel and followed her advice? And if so what do you think of it? What parts worked and didn't work for you and why do you think?
UC since 2008, tried Mezasalazine, Prednisone, SCD
Then Imuran & Remicade from Oct 2010 started to help a bit after 6mths
Pregnant in 2011 and got 100% better (off Remicade, on Imuran)
Flare again from June 2012, Remicade & Acupuncture since Oct 2012- improving slowly but still so bad I wear nappies. Doctors want me to have surgery.
NEXT- EPA/DHA, Hormones, CoQ10, Multi V, SOON Fecal Transplants

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3295
   Posted 5/20/2013 5:31 PM (GMT -7)   
Hi Aussiet,

I, like you, had very severe pancolitis. Hospitalized many times, heavy bleeding, daily accidents, ect. Before I went on Remicade I tried some natural remedies along with acupuncture. I also tried a juicing regimine that was suggested to me and several different diets such as the SCD diet. None of the above worked for me. The Remicade failed me too. What did work for me was having j pouch surgery. I don't know if you are opposed to surgery or not but I just wanted to say its been a life saver. I have been UC free and drug free since my surgery 3 years ago. I have a normal life again and I can eat real food. (I'm just not diciplined enough to follow those strict diets) I did try everything I was willing to try first though. It's a really tough surgery but oh my gosh, the end result is really worth it. If your uc is really severe and your quality of life is suffering, keep an open mind about surgery. All the best to you.
Marianne

DX UC in 2005. Family history of UC.
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy j-poucher!! :)

Jonny_Murray
Regular Member


Date Joined May 2013
Total Posts : 147
   Posted 5/20/2013 7:42 PM (GMT -7)   
I take a multi vitamin - organic royal jelly, and I have a green smoothie every morning which includes chia seeds, bee pollen and a food state vitamin c supplement.

In the evening I take psyllium seed powder with apple juice and vsl3 which helps a lot with bulk and urgency.

I am a big believer in natural food state supplements - they are much more easily absorbed and effective than synthetic 'vitamins' isolated in a lab and sold on the cheap with all kinds of chemical bulking agents and other additives.

soystud
Veteran Member


Date Joined Jan 2004
Total Posts : 5479
   Posted 5/20/2013 9:18 PM (GMT -7)   
hey aus -
 
ya, i don't think jini has many followers on here - i think a few have tried her ways with limited success if any - but hey, if you like what she has to say and sell, that's ok -
 
are you talking diet mods or supps ? i would only do one or the other - the tendency for a lot of folks (including me) is to throw everything and anything at this crap in hopes of kicking it's ass - far better imo to start slow with a few changes and see how she rides - unfortunately for most, it's the 10,000 meter, not the 100 - you definitely do have options left before you hit the bag, so if you haven't made any real diet changes, have a go - i'm doing pretty well just by saying adios to all grains - for some reason that i'm way too dumb to understand, my body at this point in time doesn't like them in the least -
 
good luck in your battle and welcome !
 

AUSSIET
Regular Member


Date Joined May 2013
Total Posts : 44
   Posted 5/21/2013 12:15 AM (GMT -7)   
Thanks everyone for your responses..

ByeByeUC- I am opposed to surgery.. I'm 29 and a single mum.. I still want to meet a great man, go on dates, have sex etc.. I'm not ready to have a poop bag yet when I feel like there are still things out there..

Jonny- thanks for your shares!

Soystud- yeah I'm not sure about Jini as well thats why I wanted some more opinions.. It seems most people say goodbye to grains :( I love my grains boo hoo
UC since 2008, tried Mezasalazine, Prednisone, SCD
Then Imuran & Remicade from Oct 2010 started to help a bit after 6mths
Pregnant in 2011 and got 100% better (off Remicade, on Imuran)
Flare again from June 2012, Remicade & Acupuncture since Oct 2012- improving slowly but still so bad I wear nappies. Doctors want me to have surgery.
NEXT- EPA/DHA, Hormones, CoQ10, Multi V, SOON Fecal Transplants

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3295
   Posted 5/21/2013 6:06 AM (GMT -7)   
AUSSIET said...
Thanks everyone for your responses..
ByeByeUC- I am opposed to surgery.. I'm 29 and a single mum.. I still want to meet a great man, go on dates, have sex etc.. I'm not ready to have a poop bag yet when I feel like there are still things out there..
Just so you are aware, a j pouch is a restorative procedure that allows you to go to the bathroom "the old fashion way". There is no external "poop bag"....well, temporarily there is while you heal in between surgeries but the end result is no bag. Anyway, since you are opposed to surgery I hope you can find something that works for you. Good luck!
Marianne

DX UC in 2005. Family history of UC.
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy j-poucher!! :)

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 5/21/2013 9:35 AM (GMT -7)   
Aussiet,
 
Welcome to the forum.
 
Glad to hear you asking about natural remedies.
 
My doc tried me on all sorts of meds (except for biologics & antibiotics), which didn't work for me and I become intolerant of the mesalamines. And when nothing worked, he gave me a choice of surgery or the biologics and I refused both, and found my own way.
 
So, here's what I did to get myself into remission. BTW, you should be aware that I had been able to control alot of my symptoms by going on Paleo diet, having reduced the BMs from 10-15 a day to probably 5-6 a day - BUT still couldn't get rid of the heavy, heavy bleeding until I started on LDN, low dose naltrexone which put me in remission.
 
I did: vitamin d3, slippery elm powder, probiotics, l-glutamine amino acid powder, liquid vitamins and liquid minerals, lots of protein shakes, chia seeds, maca powder.
 
If you are interested, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.
I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.
 
For more info on the protocol which has put me into remission, please go to this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.
I hope you feel better and let us know how we can help you.

Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements=REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.For more info,my protocol is the 11th post at this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318
If you have any questions, you can find my email address at my profile.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 5/21/2013 12:57 PM (GMT -7)   
I was extremely ill for the first year or two after my diagnosis. Other than sulfasalazine (which I still take at a maintenance level), I was given high doses of prednisone, then put on 6mp. Both had terrible side effects and 6mp didn't seem to do much at all other than making my hair fall out.

From the beginning, I was determined to use all of the dietary, lifestyle and alternative approaches I could to bring my flare under control and to regain my health. The keys for me were dietary modifications, high doses of probiotics to rebuild healthy gut flora and natural supplements to heal the colon and reduce inflammation. This combination worked for me.

I have several good books for reference, including Listen to Your Gut. There is a lot of good info in that book, regardless of what you've heard. One of the most valuable items is her wild oregano oil protocol for its antibacterial and antimicrobial qualities. I also found the books Optimal Digestion and Eating Right for A Bad Gut (lots of info about omega-3 supplementation for reducing inflammation) to be extremely helpful.

All of these approaches take time to work, so you'll have to be prepared to make a commitment and stick with it, but it can sure pay off. I've only had a few minor symptoms crop up here and there over the years - nothing I would even qualify as a "mild flare" and I've passed my ten year anniversary.
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Last two scopes showed no inflammation at all.

Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Currently using autoimmune Paleo diet.

Sweets7
Regular Member


Date Joined Feb 2008
Total Posts : 54
   Posted 5/21/2013 2:46 PM (GMT -7)   
i was diagnosed with UC in 97... Been in remission a few times through the years and in 07, crap hit the fan.. my disease spread so much so that I was diagnosed with Crohn's colitis and pancolitis - the entire length of my colon was all inflammed. Now.. It's 2013 and i've healed up A LOT, but can't seem to get the last part .. my rectum and anal canal to stop bleeding. I also have urgency all the time if I dont take imodium a few times a day.

So from 08 to now, all I do is research because I want to be healthy. I know so much about UC and Crohn's and the treatments for them. If interested... check out my blog... OHH actually I have a great audio of Jini Patel that I blogged a while ago. It's very good. I'll post it after. So yes, I am a fan of Listen to your Gut and also a huge fan of Natasha Campbell McBride, the woman who greated the GAPS diet!! All i have to say is that the woman figured out what most people will never figure out. (She is a doctor of Neurology and maybe she has other degrees) but her son was diagnosed with autism and she noticed a connection between his behavior and what he ate. Most parents who have kids with a digestive problem will eliinate this or that food, but never really get to the bottom of the root issue, which Dr. Natasha was able to pinpoint.
Her theory is that the health of your gut flora/bacteria will determine your overall health. This is due to the fact that the majority of our immune system resides in our digestive system. If we heal our gut and keep it healthy, not only diseases like Crohn's or UC... but MS, RA, Fibromyalgia, all the autoimmue conditions pretty much will go away. I JUST listened to an audio the other day that I will post below so you can listen to how logical GAPS is. It's almost a no brainer when you hear her explain how our brain works and communicates to the rest of the body when something is "off" somewhere. Everything is connected.
I tried the hard drugs like 6mp (allergic) and Remicade (too strong and toxic for me). I didn't get much relief from either of those drugs... the benefits DEF didn't outweigh the risks for me. Plus due to my genes, i am not an appropriate candidate for either of those medications. SOOO.. that leaves me with limited options. I stay clear of dairy and gluten for sure... I also have to take calcium, b12, Iron infusions for anemia due to blood loss, D3 (I highly suggest it... it helps defend against cancer and reduce inflammation.. it's def one to add to the list), Vit K (kinda goes with the calcium and d3), PROBIOTICS... A MUST! Right now i'm on Culturelle and it hekps, but today i'm gonna make my own probiotic that is better than any pill and OMG... the cost isn't even comparable. (get cabbage, water, salt and a jar :) let it sit on the counter for 5 days & there you go...it's a GAPS necessity). I'm not a huge fan of sauerkraut, but i'll eat that stuff if it will make me better.
I always have to use the bathroom!!! so annoying. It has also killed my social life too..well that and just the disease itself effected my life in so many ways. This started years
ago. Imodium works! Take that with this homeopathic med - Pedophyllum Peltatum and they work well together. i was able to cut down on the imodium.
I have to run errands, but feel free to e-mail and we can connect and I can answer whatever questions you have or whatever. I like to help others and exchange ideas. Oh, and here is that link to that amazing audio. I think you will get a lot out of listening to it.
:)

Listen to this.... Really good. http://ahhhhhihavecrohnsdisease.blogspot.com/2013/05/gaps-diet-natasha-campbell-mcbride.html#links




AUSSIET said...
Hi everyone,

Im currently on Remicade and it is slowly working after 8 mths but I still can hardly leave the house so I am going back to basics and trying to rebuild my health naturally. I am interested if others have taken this approach? If so what supplements have worked for you?

I'm particularly interested to hear from those who have had UC for a very long time and had it quite severe (ie Hospital admissions, pooping pants constantly, fevers, heavy bleeding)..

Also has anyone read Listen to your Gut- by Jini Patel and followed her advice? And if so what do you think of it? What parts worked and didn't work for you and why do you think?

34 yr. old single female
as of 2012 - UC again.. Now I call it IBD because who knows what it is!
Crohn's Colitis dx in October 09
UC from 97-09

12mg Prednisone
150mg EFFEXOR ER
Imodium - 2 tabs 4 X /day (PRN)
Homeopathic Medicine - Pedophyllum peltatum, Cinchona
LDN 1ml Dermal
CULTURELLE 1-2 caps daily
Calcium, vit D, vit K, multi vit, iron by infusion, B-12
Restricted Diet - No gluten, no dairy

Sweets7
Regular Member


Date Joined Feb 2008
Total Posts : 54
   Posted 5/21/2013 3:51 PM (GMT -7)   
When our body has a disease or gets ill, it means something has got to change somehwere in your life.. USUALLY. I dont think there is any illness that doesn't require you to change something, however that's what our society wants you to think and believe. Take this (med) and you dont need to do this (eat better). That is what I would like to call stupid medicine. Everyone wants a fix but noone wants to put in any effort. Well, unfortunately that's not how life works. Your body will tell you when you need to modify something. Ignoring the obvious OR not getting to the root issue of why your body is responding the way it is, just isn't healthy period.
You are one of the lucky ones. It was said that surgery heals UC.. not true. I am not opposed to surgery. It's just not for me at this point in my life and I'm not into quick fixes that I know I can get rid of with a little willpower and determination. I can't tell you how many people I have talked to that had surgery, but they are on hard meds STILL... Meaning they still are sick. SO many people it's unbelievable. You happen to be very lucky my friend. Most case scenarios after surgery.. from what I have read, do not end up the way things have played out in your life. It's rare. It seems like surgery should be done if the disease has progressed and there is very low chances of healing and your chances of cancer is high. The body can repair and heal itself, given the right tools.. It's a marvelous machine that is often underestimated.
I had Crohn's colitis and Pancolitis and have healed most of my colon now. The last part and the hardest area to heal is what I'm working on now. It has taken years for me to get this healthy. I can actually leave the house now and i'm getting my life back... sloooowly. Last scope said I had UC.. Basically I was so jacked up years ago that my UC developed into Crohn's. (Yes I know the doctors say it cant be both...blah blah they can kiss my @$$... I've learned that doctors don't know everything.. I'd most likely be dead if I took their advice on everything they have suggested to me.... Not joking) In the end, at least i'm not dependent on a toxic drug and missing all or parts of my organ. I am not saying that its bad to have surgery and that you were wrong for doing that.. NO NO please dont take it that way. You made a decision that worked for you and it was successful. Your quality of life is how it should be and that's what matters - your overall health and living a happy life without the everyday burden is what really counts.
The route I chose is just totally different and it has taken me years of hard work of restricting myself from various things that weren't healthy for me and researching and making changes here and there in my life to get healthy. A lot of soul searching and cleaning up my mind and taking out the trash per se. I have had to sacrifice for the decisions I've made. You realize a lot about people and who will stick by your side or run the other way. I love knowing the truth about people.. A lot of disappointing realizations, but I'd rather know now than later. Everything I've had to face with this disease, has made me who I am, I'm smarter because of everything I have read and researched and use it to help others, I know I'm strong and can bust through any disease without the use of a knife. I trust my intuition 100% now and that if I always continue to learn about this disease, I will always have control of it and IT will not control me.

So, I would say... open your mind and fill it with knowledge... then you'll be ready to make a confident and informed decision. :)

ByeByeUC said...
Hi Aussiet,

I, like you, had very severe pancolitis. Hospitalized many times, heavy bleeding, daily accidents, ect. Before I went on Remicade I tried some natural remedies along with acupuncture. I also tried a juicing regimine that was suggested to me and several different diets such as the SCD diet. None of the above worked for me. The Remicade failed me too. What did work for me was having j pouch surgery. I don't know if you are opposed to surgery or not but I just wanted to say its been a life saver. I have been UC free and drug free since my surgery 3 years ago. I have a normal life again and I can eat real food. (I'm just not diciplined enough to follow those strict diets) I did try everything I was willing to try first though. It's a really tough surgery but oh my gosh, the end result is really worth it. If your uc is really severe and your quality of life is suffering, keep an open mind about surgery. All the best to you.

34 yr. old single female
as of 2012 - UC again.. Now I call it IBD because who knows what it is!
Crohn's Colitis dx in October 09
UC from 97-09

12mg Prednisone
150mg EFFEXOR ER
Imodium - 2 tabs 4 X /day (PRN)
Homeopathic Medicine - Pedophyllum peltatum, Cinchona
LDN 1ml Dermal
CULTURELLE 1-2 caps daily
Calcium, vit D, vit K, multi vit, iron by infusion, B-12
Restricted Diet - No gluten, no dairy

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 3295
   Posted 5/21/2013 4:04 PM (GMT -7)   
Sweets7 said...
When our body has a disease or gets ill, it means something has got to change somehwere in your life.. USUALLY. I dont think there is any illness that doesn't require you to change something, however that's what our society wants you to think and believe. Take this (med) and you dont need to do this (eat better). That is what I would like to call stupid medicine. Everyone wants a fix but noone wants to put in any effort. Well, unfortunately that's not how life works. Your body will tell you when you need to modify something. Ignoring the obvious OR not getting to the root issue of why your body is responding the way it is, just isn't healthy period.
You are one of the lucky ones. It was said that surgery heals UC.. not true. I am not opposed to surgery. It's just not for me at this point in my life and I'm not into quick fixes that I know I can get rid of with a little willpower and determination. I can't tell you how many people I have talked to that had surgery, but they are on hard meds STILL... Meaning they still are sick. SO many people it's unbelievable. You happen to be very lucky my friend. Most case scenarios after surgery.. from what I have read, do not end up the way things have played out in your life. It's rare. It seems like surgery should be done if the disease has progressed and there is very low chances of healing and your chances of cancer is high. The body can repair and heal itself, given the right tools.. It's a marvelous machine that is often underestimated.
I had Crohn's colitis and Pancolitis and have healed most of my colon now. The last part and the hardest area to heal is what I'm working on now. It has taken years for me to get this healthy. I can actually leave the house now and i'm getting my life back... sloooowly. Last scope said I had UC.. Basically I was so jacked up years ago that my UC developed into Crohn's. (Yes I know the doctors say it cant be both...blah blah they can kiss my @$$... I've learned that doctors don't know everything.. I'd most likely be dead if I took their advice on everything they have suggested to me.... Not joking) In the end, at least i'm not dependent on a toxic drug and missing all or parts of my organ. I am not saying that its bad to have surgery and that you were wrong for doing that.. NO NO please dont take it that way. You made a decision that worked for you and it was successful. Your quality of life is how it should be and that's what matters - your overall health and living a happy life without the everyday burden is what really counts.
The route I chose is just totally different and it has taken me years of hard work of restricting myself from various things that weren't healthy for me and researching and making changes here and there in my life to get healthy. A lot of soul searching and cleaning up my mind and taking out the trash per se. I have had to sacrifice for the decisions I've made. You realize a lot about people and who will stick by your side or run the other way. I love knowing the truth about people.. A lot of disappointing realizations, but I'd rather know now than later. Everything I've had to face with this disease, has made me who I am, I'm smarter because of everything I have read and researched and use it to help others, I know I'm strong and can bust through any disease without the use of a knife. I trust my intuition 100% now and that if I always continue to learn about this disease, I will always have control of it and IT will not control me.

So, I would say... open your mind and fill it with knowledge... then you'll be ready to make a confident and informed decision. :)

ByeByeUC said...
Hi Aussiet,

I, like you, had very severe pancolitis. Hospitalized many times, heavy bleeding, daily accidents, ect. Before I went on Remicade I tried some natural remedies along with acupuncture. I also tried a juicing regimine that was suggested to me and several different diets such as the SCD diet. None of the above worked for me. The Remicade failed me too. What did work for me was having j pouch surgery. I don't know if you are opposed to surgery or not but I just wanted to say its been a life saver. I have been UC free and drug free since my surgery 3 years ago. I have a normal life again and I can eat real food. (I'm just not diciplined enough to follow those strict diets) I did try everything I was willing to try first though. It's a really tough surgery but oh my gosh, the end result is really worth it. If your uc is really severe and your quality of life is suffering, keep an open mind about surgery. All the best to you.
I like your post. :) Glad you found something that works for you. I tried many things, believe me!! Bottom line is not one thing works for everyone. I didn't have any time left to wait it out anymore. I was seriously ill. Surgery is for the seriously ill. Not someone with mild/ moderate UC. And the successes far outweigh the failures. If I could have kept my colon I would have. Continued good health to you. :)
Marianne

DX UC in 2005. Family history of UC.
Tried every drug-even Remicade-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy j-poucher!! :)

damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 677
   Posted 5/21/2013 4:14 PM (GMT -7)   
Love your post Sweets. It is so true. Medicine does a job in controlling symptoms and it does a relatively good job. Rarely does medicine cure the cause. Tackle the symptom and the situation created in your body. For some that is life-saving and needed.

But few people give credence to the fact that some people are successful with diet, are succesful with stess-relief and other alternative therapies. So instead of banishing these as extreme case not to be followed by the norm why don't sit back and ask why are some people "curing themselves" (that will get the knives out) with these therapies. No one is suggesting this is happening in the majority of cases but it is happening. If there were a CSI - lead here it would be the point where they say "follow the evidence" and roll the music.

So particularly for the newbies here, research investigate, ask questions, be positive, you know your body better and how it feels very very well. Be progressive and strong with your condition.

soystud
Veteran Member


Date Joined Jan 2004
Total Posts : 5479
   Posted 5/21/2013 5:57 PM (GMT -7)   
and when all that fails, get out the Ronco Colon Chopper !
diagnosed with pancolitis december 21, 2003
currently taking: -- Astaxanthin,vit D, ALA, DHEA, a smorgassbord of probiotics, & Wild Harvest Inflamma Shield -
No Gluten, Rice, Corn, or Sugar - No Meds - Just good, healthy food -
Lots of H2O, exercise & sleep as much as possible & enjoy this great life that God has blessed me with -

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1027
   Posted 5/22/2013 4:19 AM (GMT -7)   
I have not personally tried all of these. I have purchased them to try but haven't gotten through them all yet.
Wellbutrin the slow release kind 100mg 3xs a day
nicotine
Black cherry concentrate
Manuka honey
Blackstrap molasses
Coconut oil
Turmeric
Ginger
These are all remidies I have seen someone on this site say worked.
30 female. Sherrie, 2007 diagnosed with UC, also have Hypothyroidism, Leukocytosis, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose defense, lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, bit D Pred 20mg, started Humira 12/31

AUSSIET
Regular Member


Date Joined May 2013
Total Posts : 44
   Posted 5/22/2013 5:18 AM (GMT -7)   
Love everyones posts! Thank you so much!

Firstly @ByeByeUC The surgeon said it would be unlikely that I could do a J-pouch because he thought my rectum and intestine was too bad to make the internal one. He said most likely i'd have to have the external bag forever- hence why im trying everything else first. I talked to a wonderful woman who had the same surgery as you, and like you it saved her life. She couldn't continue as she was and has been perfectly healthy since! For me though- I'm just not ready.

@sweets I love your posts haha they remind me of myself having a rant! I pretty much think the exact same way as you do, and like you the last part of my bowel/ rectum is just erghhhh f*#d. And I thought the GAPS book was great but havent implemented diet changes since my last attempt at SCD. I'm getting close to being ready though.. I also have found a lot of changes have occurred as a result of this. I have worked on myself and my emotions so much. There is still a huge way to go but I'm learning a lot about whats important in life thats for sure. I haven't tried imodium but i guess i should as it would make life easier than diapers all the time. Do you worry that constant imodium will make you worse though? Or constipated, then impacted or something? Although I go to the toilet constantly its never large volumes- i worry if i block myself up on purpose ill just aggravate things more... thoughts anyone?

@princesa thank you for the book recommendations.. the 2 about food I havent read and they sound like they would benefit me! I tried the Oil of Oregano and found it too hot for my taste buds but thought I might give Olive Leaf Extract a go. Have been taking low doses now for a week and plan on slowly increasing.. In June im starting Fecal Transplants so I want to make sure any infection is cleared before then.

Thanks everyone for your insightful responses... I love hearing what others are trying, or have tried! xx
UC since 2008, tried Mezasalazine, Prednisone, SCD
Then Imuran & Remicade from Oct 2010 started to help a bit after 6mths
Pregnant in 2011 and got 100% better (off Remicade, on Imuran)
Flare again from June 2012, Remicade & Acupuncture since Oct 2012- improving slowly but still so bad I wear nappies. Doctors want me to have surgery.
NEXT- EPA/DHA, Hormones, CoQ10, Multi V, SOON Fecal Transplants

SouthernGirl6
Regular Member


Date Joined Dec 2012
Total Posts : 391
   Posted 5/22/2013 8:57 PM (GMT -7)   
Black cherry concentrate has been my miracle remedy and has healed a moderate flare in days. I know several people here have tried it without any result or little result, and it has caused me to think my UC is a type of arthritis in my colon if that makes sense...Black cherry helps people with gout, and some of the same foods that bother gout bother my UC...example fatty milk..skim milk is fine for me. Rebuilding overall health though is huge to me for UC...good multivitamins, healthy diet, exercise...good luck!
Black cherry concentrate
Rainbowlight Multivitamin
28 years old and have had UC 13 years

snapperhead
New Member


Date Joined May 2013
Total Posts : 4
   Posted 5/22/2013 10:07 PM (GMT -7)   
I have had Ulcerative Colitis for about 18 years now.  I tried Mesalamine and sulfasalazine, which both made it worse.  I tried steroids which worked but I saw aggressive tendencies growing in me so I stopped that, and then I was on Mercaptopurine, which has as a side effect lowering your immune system to the point where Leukemia can develop.  about 2 years ago I started taking Boswelia, a natural herb anti inflammatory.  I feel a difference within hours of taking it.  I have not tried taking them on a regular basis but if I had a bad exacerbation I would.  I have suggested it to 3 people and all 3 have seen awesome success.  One guy went from having to use the bathroom between 15 and 20 times a day down to 3.  If you haven't tried it, you may want to give it a shot.  Good luck!

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 5/23/2013 5:21 AM (GMT -7)   
snapperhead,
 
Welcome to the forum.
It's great that you've found something that helps you so much.
 
I tried Boswellia some time ago, and found it made no difference.
Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements=REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.For more info,my protocol is the 11th post at this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318
If you have any questions, you can find my email address at my profile.

AUSSIET
Regular Member


Date Joined May 2013
Total Posts : 44
   Posted 5/24/2013 8:07 PM (GMT -7)   
@snapperhead what dosage + strength??
UC since 2008, tried Mezasalazine, Prednisone, SCD
Then Imuran & Remicade from Oct 2010 started to help a bit after 6mths
Pregnant in 2011 and got 100% better (off Remicade, on Imuran)
Flare again from June 2012, Remicade & Acupuncture since Oct 2012- improving slowly but still so bad I wear nappies. Doctors want me to have surgery.
NEXT- EPA/DHA, Hormones, CoQ10, Multi V, SOON Fecal Transplants

stereofidelic89
Veteran Member


Date Joined Sep 2011
Total Posts : 1928
   Posted 5/24/2013 8:42 PM (GMT -7)   
Aussiet, I've found diet to play a crucial role in the management of my symptoms.

Sugar, and lots of starchy foods always troubled me. But I was drawn to these foods for 1. calories 2. taste.

I started eating organic, lots of greens, less sulfuric foods (onion/garlic), wild sockeye or alaskan salmon at least 3 times a week (in salads or oven baked). Lots and lots of chickpeas or humus for carbs+protein. Douse your food with turmeric, ginger root, oregano, and parsley (anti-inflammatory and bacteria fighting herbs). Eliminate dairy and gluten completely, see how you feel. For me, i've noticed its a culprit!

1. Look into some stool testing form a reliable lab (metametrix.com) and others on this forum can suggest.
-I found a pattern in my test results, with low SCFA, low elastase, all leading me to believe digestion was a huge factor in my disease.

2. Ask your doctor or provider about supplements, Vitamin D, L-Glutamine, Slippery Elm bark powder, a plant based multivitamin maybe. BTW, I think the entire world should be on probiotics!!

3. Have your blood work done at least every other month in active UC, or every few months for less active UC.

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4679
   Posted 5/25/2013 6:31 AM (GMT -7)   
Stereo, great advice!
 
How have you been doing?
Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements=REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.For more info,my protocol is the 11th post at this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318
If you have any questions, you can find my email address at my profile.
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