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Crohn's Disease Forum » Ulcerative Colitis Forum » remission with cbd, aloe vera and more


10-24-2017, 07:43 AM   #1
jonny83d
 
Join Date: Oct 2017
remission with cbd, aloe vera and more

hi all, thought id join and give a little insight into how I've managed to get to a state of remission using cbd oil (no thc so perfectly legal), aloe vera and bpc-157 and now I'm completely pharmaceutical medication free

i was diagnosed 10 years ago and have tried many medications, every year with out fail i flared up and needed steroids. in the last few years i wasn't really responding to my meds and was flared up for nearly a year, i had been on a course of steroids already that year so was unable to be treated again with them for health reasons. i was so depressed and ill with my colitis i was actually in tears to my specialist begging for surgery.

here's where it all started to change, i read somewhere that cbd could help with any kind of inflammation so i started to give it a go and saw immediate results, i was so inflamed though that this wasn't enough by itself even though my dosage was quite high.

i then introduced aloe vera to my diet. 2 bottle of aloe vera from the pound shop (the ones with the pulp), one on a morning and one at night. this used along side the cbd started to work really well but you've got to keep in mind i had stopped all medication due to it being non effective anymore. i was fighting this by myself.

i was feeling a huge improvement but as you know getting back to remission is a long process, i then through research stumbled across a peptide called bpc-157 and a study into how it has anti ulcer of the digestive track properties. tests were carried out on mice and i used the same mg to weight ratio on myself. the study show no side effects at all so i was happy to do so. within 3 weeks i would say i was 95% better. i felt like i had my life back. wen if i ever flare bpc-157 is my go to< to bring me back to normal.

i use;
cbd 10mg on a morning and night,
aloe vera on a morning and night too as a maintenance and watch my diet.

i know what foods i can and cant eat, 1 thing i would add is refined sugar is the absolute devil. i didn't know it feeds inflammation in the body. you would think a specialist would tell you these things but no. he wouldn't talk about any of the about i've mentioned.

i hope this helps someone, i'm happy to talk and help others out.

have a good day, Jonathon

Last edited by jonny83d; 10-24-2017 at 08:18 AM.
10-24-2017, 10:28 AM   #2
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
Hello Jonny83d,

Thank you very much for sharing your story, and providing details on how you managed to get into remission. I'm currently in a bad flare and am absolutely desperate for relief of all the nasty symptoms. Prednisone is preventing me from getting sleep. It keeps me awake all night until around 7am and doesn't even relieve my symptoms. I' have been on it for 5 days.

Can you please provide more specifics on the Aloe Vera you added to your diet. Sounds like its a drink with pulp, is that correct? How much of this would you drink morning and night?

I read the research studies on CBD. That's great that it helped you. However the studies said that CBD was not nearly as effective treating patients with Ulcerative Colitis unless it was given together with THC. What are your thoughts on this? How do you take your dose of the CBD oil. Where do you recommend I get it? Can you provide me with a link to where you get it?

Can you please provide more information or a link to bpc-157. I'd also like to know where you recommend I get it? Sorry for all my questions and requests. I'm struggling with researching all this dealing with severe symptoms.

Called my GI yesterday and today regarding the meds not working. Left several voice messages explaining I need help and still awaiting her call. Its difficult to even make it to the doctors office. I don't want to continue down this road of failed medications. Any assistance with advice and tips on this would be greatly appreciated.

Thank you,
Alex
10-24-2017, 11:27 AM   #3
Jabee
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My GI is very pro-medical marijuana for my crohnís but I actually use it for migraines more, and it has helped me reduce the frequency from daily to 3-4 per week. Iíve found what works best is a 1:1 ratio cbd/thc. I use 10mg of each per dose. Since I live in Massachusetts itís easy and legal to use regular marijuana (I prefer edibles to smoking so have chocolate bars which are easily split to the right dose). I use it for pain mostly (I take Entocort for the crohnís) and it really helps. Itís not okay to post links to commercial sites here but there are lots of reviews of good products on the web and Iím sure youíll be able to find one that works for you.
10-24-2017, 11:40 AM   #4
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
Unfortunately I live in VA which complicates this type of treatment. Can someone confirm if CBD oils (with no THC) are legal in VA? If so which local stores sell them?
10-24-2017, 12:16 PM   #5
Jabee
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Cbd oils are legal in all 50 states. You should have no problem ordering them online.
10-24-2017, 12:18 PM   #6
jonny83d
 
Join Date: Oct 2017
cbd oil is fantastic for colitis. you need to find the right dose for it to be effective of course. when I was flared I used 50mg per day, now I'm on a maintenance dose I use 10 -20 mg per day depending what I've eaten. I've never taken it with thc in and it's worked great for me.

any aloe Vera drink with the pulp in works best for me. this helped get rid of the loose stools

Google bpc-157 for ulcerative colitis and hopefully you'll read some information that'll put your mind at ease about it and will make you consider using it. and an aid to get me from fully flared up back into remission it's was an absolute game changer. it took 3 weeks and I literally couldn't believe it.

remember these are none pharmaceutical solutions so mine and i guess your specialist will not speak of them. I'm a year and a half off all meds and I've only flared once for a short while because I introduces wheat grass into my diet. that's didn't agree with me at all. I quickly sorted it and I've been fine since. as long as I avoided using sugar too much I never have any problems
10-25-2017, 09:46 AM   #7
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
After more research I learned that CBD oil is carried in stock and sold at local vape stores in northern VA. When calling a few of these stores, one refused to give pricing over the phone (claimed store policy). Another store also refused, but after explaining my disease she at least provided the range of pricing.

There were only 2 brands available at the local stores. Employees cautioned me to do my research on the oil manufacturers as they can simply state whatever they want on the label as to its contents. Online there is a much wider selection of manufacturers, strengths, and quantities available. It's easier to research the manufacturers, products, reviews, and pricing to be more certain you receive the product they claim they are offering.

There are discount codes/promotion codes which can save 10-15% off the entire order. Some places offer free shipping. This is ideal for me or anyone suffering through a flare and can't leave their home.

I ordered the highest strength available which based on my research is 50mg CBD per ml. I noticed that very few manufactures of CBD oil clearly provided exactly how many mg of CBD per ml is in their product. For example most companies only state the product brand name, CBD oil, or Hemp oil, 100mg, 350mg, 750mg, 1000mg, 1500mg etc. on the bottle. If you know how many ml are in the product you'd assume you could easily calculate the amount of CBD per ml. However because it's a non regulated supplement this can be misinterpreted. My understanding is that it could be 100mg, 350mg etc. of whatever ingredient the manufacture decides to put in their product.

I went with a reputable company whom provides 3rd party lab tests on their CBD oil for every batch they produce and sell. The bottles of oil should have matching batch numbers on them.

I'm sharing this information in hopes that it helps others in some way.
10-25-2017, 10:05 AM   #8
jonny83d
 
Join Date: Oct 2017
did you get an oral oil Alex or a vape?

i use cbdlifeuk for my cbd oil, they're one of the companies in the cannabis trades association over here so i know they're trusted. why dont you email in and see if they send over seas?

i found the vape isn't as good for colitis as the oil for fighting the inflammation but it is good for pain relief. look for the full extract vapes if you do get one though as these are far more effective than vapes with just the isolate in.
10-25-2017, 10:33 AM   #9
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
Hello Jonny, thank you very much for your reply. I got the oral type of oil. There is supposed to be some type of eye dropper thing built into the cap.

If the oil I ordered isn't effective I will definitely contact the manufacture that you use.

The vape store employees explained that the most potent and effective form is to take the oral type of CBD oil orally. Their instructions are to place the dosage/drops of oil underneath the tongue and wait 1 minute before swallowing.
10-25-2017, 10:54 AM   #10
jonny83d
 
Join Date: Oct 2017
great, good luck with it.

tumeric also helps for the inflammation too, need to take it with black pepper for the body to fully absorb it.
10-25-2017, 10:56 AM   #11
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
My most recent GI appointment was last Friday. She put me on Prednisone 40mg. I have been taking it for 6 days. Yesterday over the phone she recommended that I go to the Hospital ER to be admitted. She wants me treated as an inpatient. IV steroids etc. 3-4 weeks ago when she put me on Lialda she said the same thing that I should be admitted to the hospital.

She said she is worried that I will lose my colon. That it will require surgery to be completely removed.

My current meds are simply not working. My GI wants me on Remicadee but won't give it to me unless I am admitted.

At what point is it critical I go to the ER to be admitted?

Please take into consideration I do not have any health insurance. I signed up for it but it won't be active for over another month. I simply can't afford ER or hospital bills as I'm currently unemployed.

If none of the medications are helping me how is this same doctor at the Hospital going to help? So far the meds have caused me mostly bad side effects like insomnia and back pain. I simply won't allow surgery.

My GI doesn't have my UC under control so why should I continue to follow their orders, and take their meds that continue to make me sick in other ways.

At best I have only a few hours of mild relief from my symptoms in the middle of the day, hours after taking all of the pills, probiotic and vitamins.

I have been in my first UC flare for almost 2 months now. I'm rushing to the toilet every 15 minutes day and night with bloody diarrhea and pain across my entire abdomen. My symptoms were slightly worse during the first 3 weeks and now its back in full force again.

I'm still new to this forum if I need to move this post please let me know,
10-25-2017, 12:30 PM   #12
jonny83d
 
Join Date: Oct 2017
ah man I feel your pain. I'm in no position to tell you what route to go though. I needed 60mg of prednisolone to be effective for myself. I think I was on the high dose for maybe 3-4 weeks before I seen any real results. then I could taper the dose down. they're horrible things to be on though, my mood swings were unreal.

honestly when I was in the highest state of being flared the bpc-157 was the most effective, the cbd and aloe Vera was complementary and is great for keeping me in remission but within 3 weeks the bpc worked wonders. I keep some in my fridge so I know I have it on hand at the first sight of a flare. that fact it has anti ulcer of the digestive track properties it means its great for colitis and crohns
10-25-2017, 07:19 PM   #13
Jabee
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Iím so sorry. The main things are to stay as nourished as you can while still giving your colon as much rest as you can until your insurance kicks in (so wish the insurance situation in the US were different). Have you switched to a liquid diet? Clear liquids are easier than full liquids, and formula is easier still. You need to make sure you are getting enough salt and sugar to keep up your electrolytes. You can look online for recipes for oral rehydration solution you can make at home or buy Gatorade or something similar. Any not for profit hospital can also help you with payment plans if you absolutely have to be hospitalized. Iím assuming your GI is aware of your situation with insurance?
10-25-2017, 09:03 PM   #14
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
Hello Jabee, thank you for your advice and kind words. A few weeks ago I tired a clear liquid only diet for several days to no avail. I also went a few days of fasting with only water. Neither improved my condition. Started juicing anti inflammatory fruits and vegetables last week. Haven't noticed any benefits from juicing yet. Initially I was drinking water, Gatorade, and Powerade to stay hydrated. Once I learned that sugar feeds the inflammation I cut back on sports drinks and most sugars.

It doesn't seem like diet is a trigger for me. Regardless I'm trying to play it safe. Switched to almond milk with my low fiber low sugar cereal. Now reading labels before consuming anything new. Drastically removed most fiber from my diet eating only foods with a maximum of 1% fiber. Eating yogurt each day that is low in sugar (no nuts or whole fruits). Started eating fish and more eggs. Avoiding most meats, but sometimes I eat chicken. Avoiding everything on the low fiber low residue "do not eat" list from my GI.

Yes my GI and her nurse are well informed of my insurance situation. I can hear it in their voices and attitude change that they are equally fed up with me and my financial/insurance status as I am with their meds not helping me. They have been helpful but now seemed to have reached their limit. During our last conversation I realized its up to me to find alternative solutions to get well. I'm trying my best to manage it better myself and with your guys support, at least until I'm on the health coverage plan.
10-28-2017, 07:57 PM   #15
Lady Organic
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Hello AlexSkate,

seems like this medical team puts lots of pressure on you. Honestly I dont understand quite well. This is your first episode of UC, the GI gives you Lialda and tells you to be admitted? I dont get it. Lialda is a mild medication for mild to moderate UC episodes, not for severe UC requiring surgery or admission! Prescribing Lialda and alarming a patient with Surgery on first episode is beyond my comprehension... The though of surgery and losing colon is very stressful for a patient. If you dont feel comfortable with this team and have the chance, have a second opinion and consider changing your team. I feel it is so important to feel listened and respected by our team. These are people we will see for many years ahead of us, for our lifetime, unless a cure is found. So finding a nice team is truly key.

40mg of prednisone should help you soon and if its not enough the dosage can be increased. Any relief yet? How many days have you been on it now?

Purinethol and methotrexate are medication that wont need admission to be prescribed. Your dr haven't talked to you about those? These medication are usually given when Lialda and prednisone fail to bring back stable remission. Purinethol and methotrexate are drugs that are far less expensive than Remicade. Remicade is a new medication that has been around for 15 years only. When Remicade didnt exist, UC patient only had Purinethol/Imuran and methotrexate as options for UC not responding to 5-ASA. I was put within a year and a half after my initial episode on purinethol after several fail rounds of 5-ASA (Lialda) and rescue prednisone. I am still on it right now. Purinethol can be prescribed at the same time of prednisone. It takes about 2 to 3 months to be effective.

I am trying a second round trial of CBD oil too. First one failed.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
10-28-2017, 08:53 PM   #16
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
Hello Lady Organic, thank you for your reply. I will have to wait for my insurance to begin in December before getting a 2nd opinion. My current GI isn't one of the doctors that my future insurance plan will cover. This will force me to get a 2nd opinion from a new medical team.

I have been on 40mg of prednisone for the past 9 days. I'm showing no signs of improvement. Increasing amounts of pain and slightly more blood in my almost constant diarrhea.

Lialda was given to me by my GI in the form of free samples of the drug which they had in their offices at multiple locations. They gathered all of the Lialda samples and gave them to me to begin a treatment plan.

My Gi has explained that Lialda is for treating mild to moderate UC. She also explained that in my case I have severe UC. She introduced her plan to get me on Remicade or this one other biologic which is self administered via injections. However she will not provide these treatments without me having a diagnostic colonoscopy with biopsy first. Regardless of the fact she has already diagnosed me according to my chart with Ulcerative Colitis. She explained many times that my CT scan, blood work, stool sample etc all show very high levels of inflammation all throughout my colon.

I think her pushing me to be admitted is her giving up treating me as an outpatient. Once a patient is admitted the hospital will be fast about further invasive, expensive procedures, and tests. They won't care if the patient can afford any of it. The bills come later. No ER or hospital has a cure so how would this help me long term. All it would do is make me bankrupt. How can I manage this life long disease completely broke? These are some of the reasons I won't be admitted. Also once a patient decides its time to be admitted for their chronic disease its likely going to mean they are now more likely to continue being admitted from there on out. This is what I have heard from other UC patients stories. This might be just fine if you have excellent health insurance, or live in a country with universal health care.

No other drugs or treatment options were discussed. She was not interested in discussing herbal remedies, supplements, or alternative natural treatments. She only liked the fact that I started juicing and taking vitamin D pills every day based on what I learned from researching online. I have not bothered to mention CBD oil or anything else to her.

Both my GI and nurse have told me at different times that UC doesn't have anything to do with what I eat. And that my symptoms are only going to keep getting worse without proper treatment. I find this very odd because my GI gave me a low fiber low residue diet. So managing the symptoms at least must have something to do with my diet. This seems very conflicting.

My GI and nurse neglected to tell me that I have a 4mm non obstructing kidney stone in my right kidney. I discovered this myself both while viewing my CT scan on my computer, and by reading the doctors report which was sent to me from the imaging company. I watched videos online to learn how to read a CT scan. Kidney stones are very easy to identify. I lost some trust in my doctor when I learned she had not informed me of my Kidney stone. I had to inform her about it. She replied that she was aware however it's not causing my current symptoms.

My CT scan had 2 significant findings. My UC and my kidney stone. At the very least my GI should have discussed it with me. After all passing this stone is going to be very painful. Had I not done my own research into my lab results I wouldn't have known about it until the time it starts to pass.

I'm thankful for the free samples of the expensive Lialda, especially not having insurance. I'm not sure if it's helping me though. The prednisone is still causing me to have mood swings, panic attacks, high anxiety, and bad insomnia. I'm doing my best to manage my symptoms but so far nothing is working for me. I feel more desperate each passing moment. I get a few hours of sleep at best segmented throughout the day. I still have night sweats even if its an hour nap.

Sorry to hear the CBD oil didn't help. Mine was supposed to arrive in the mail today. I'm super anxious to use it. Are you getting your second batch from a different supplier? Are you getting a higher strength CBD per ml this time?

Thank you for the additional information on treatment options for me.

Last edited by AlexSkate; 10-28-2017 at 09:09 PM.
10-28-2017, 09:13 PM   #17
Lady Organic
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Ok yes, I remember you from another thread! sorry I didnt realize!
I am hoping you will soon start feeling the benefits of prednisone. prednisone usually kicks in very fast. There is a very good chance it will kick in in the next few days. Really try to remain positive it will kick in. This is important Try to nap as much as you can to relax and help your body. I know disease takes away some sleep and prednisone usually does too.
You can try a diet such as the one in my signature in the meantime, IBD-AID.
I made my own cbd oil with a special machine last year. This time I am buying from a supplier for a standardized and certified product.
I would really ask the dr asap about Purinethol/Imuran if getting Remicade is too complicated.
10-28-2017, 09:34 PM   #18
AlexSkate
 
Join Date: Oct 2017
Location: Sterling, Virginia
Sorry If I repeated much of my story to you and everyone. I'm a broken record at this point. Impressive that you made your own CDB oil. Very cool. Here is some of the info I learned about CBD oil today. It can even take several weeks for CDB to build up in your system before you notice the benefits.

Because you made the oil yourself is there a way for you to know how many mg of CBD that you were taking per dose? If your dose was too low you may not feel any benefits. Possibly the concentration of CBD was not strong enough. This is only based on my hours of reading up on it.

It's still my understanding from reading various medical studies that CBD in combination with THC provides more benefits for treating UC and Crohn's. Currently I don't use either. Starting off with only CBD. Only interested in treating and managing my symptoms. I don't need or want to feel a stoned effect. However if that's the only way to get maximum relief from this disease it might be the next thing to try.

I will take your advice. Thank you!
11-10-2017, 01:25 PM   #19
Fayth
 
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Location: Quebec, Quebec
Last time I had a flareup my body didn't respond to oral prednisone, went to the ER, got IV steroids and it was instant relief, I was also just like you running to the bathroom every 15 minutes losing a lot of blood. Got a blood transfusion, switched to oral prednisone and started Imuran + Humira almost right away when I got out of the hospital.

I also want to point out that 3-4 months after this I was feeling okay-ish and after watching a documentary I switched to a whole food plant based diet (I'm a very disciplined guy to begin with so it wasn't hard) and my digestion became so much better, I haven't had any constipation or diahrrea over the past 18 months, no pain except when I got gas but it's no big deal, mostly due to the very high fiber content of the diet. I was also advised the low residue diet because it seems to cause a bit less pain in the middle of a flare up but to me it didn't change anything what I ate, maybe because I had a severe case but anything I ate just hurt really badly, anyway what I want to say is don't avoid fiber once you get better, aim for more fiber instead, fiber isn't the cause of UC.

Also you might want to take a look at this https://youtu.be/3mWHBuFPtPA

Last edited by Fayth; 11-10-2017 at 01:45 PM.
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