Crohn's Disease and Ulcerative Colitis - Cannabis Treatment

[Cambium]

Just now, HazyDaze said:

Any good links and  or recipes ?

 

I'd love to ease a little bit of pain for a loved one

 

 

 

Straight oil is good as always, but my favourite is fudge made with canna butter. Follow @Joolz recipe in the cooking section. I think it is pinned? Often with UC or crohns eating can be challenging to say the least. The fudge is super easy to ingest, for me anyway. You can stick a small bit under your tongue and just let it melt away. Watch dosage as always build up to it.

Edited October 2, 2021 by Cambium

[Cambium]

@HazyDaze 

 

 

[HazyDaze]

Brilliant,  thanks for that.

 

Can I make meds with coconut oil and cap them?

 

Is  it he same process as making  canna butter just replacing the butter with coconut oil?

 

 

 

[Cambium]

Just now, Cambium said:

 Watch dosage as always build up to it.

 

Just to add to this, for the benefit of the thread. If you are using, or giving edibles, or oil to ingest for med reasons, IMO dosage when first used is sooo important. Crohns and UC in particular as there is so much to be gained from using it. If you completely wreck and inexperienced user out the gate, they often wont return. 

 

Definitly creep up on edibles for maximum return!

[Cambium]

Just now, HazyDaze said:

Brilliant,  thanks for that.

 

Can I make meds with coconut oil and cap them?

 

Is  it he same process as making  canna butter just replacing the butter with coconut oil?

 

 

 

I've no experience, but I would I imagine so as with all oils/fats.

Edited October 2, 2021 by Cambium

[HazyDaze]

3 hours ago, blackpoolbouncer said:

I treated my friends chrons and colitis using 1:1 cbd:thc to cover the bases made into a coconut oil. 

1 to 2 spoonfulls a day spread out had an amazing effect and while in it was in full remission pretty much. Went from being in intensive care and booked in for colostomy bag operation in 2 weeks to back at work by 3 weeks. 

 

I definitely would suggest trying it. 

 

To a lesser extent I use it to keep my ibs at bay and it does really help. 

 

 

Hope you find some relief 

Can you PM me Any links or recipes please bud.

 

[soto]

I'm sad to say that I have crohn's disease. I'm not convinced it's my immune system though, bile acid maladsorption is the main issue, basically the bile acid gets into my colon and rectum and causes inflammation. 

It's been a right battle trying to convince docs that it may not be my immune system causing the problem. When I get the bile acid issue under control by using bile acid sequestrants and avoid stuff that irritates it (caffeine is the worst, coffee almost instantly puts me on the toilet), I get a lot better. I'm currently off immunosuppressants, sending in regular stool samples to try and prove all of this. My calprotectin level hit almost 4000 four months ago. Hoping to get it down into double figures.

I'm willing to try oils and may look into getting a script when I can afford it. Not sure it will do much though if the issue is bile acid. The whole situation really fks me off as bile acid sequestrants don't always work that well (and I'm on a huge dose too), bile acid maladsorption is idiopathic (not caused by the immune system, not crohn's disease) yet that's the source of the problem. There are bugger all treatments for this condition.  And it's fking painful too, imagine going for a shit and hydrochloric acid coming out.

Edited October 2, 2021 by soto

[Newcouch]

Hi Soto,

Sorry to gear that. I couldnt agree more. Almost all IBD poeple have othe symptoms, be it BAM or GERD (like me).  I am sure it is an imbalance in the dietary system rather then the immune system.  But doctors prefer to treat symptoms than causes.

And ask most UC people what causes a flare and they will say stress. I imagine that is part of how cannabis helps ibd, but also i think the entire ecs is totally underesearched. It wouldnt surprise me if thc modualated rather than suppressed the immune system.

Oddly enough i am mildly laid up now, due to building stress over an event today.  alcohol is an obvious cure, so that is what i am taking, and it is working well - bowels / stomach settling, pain and anxiety doing - but what use is that? I hate taking alcohol for ibd. And obviously, i can only do it on a sunday during the day when the wife is away! alcohol is a stupid cure.  But it works.

I tried CBD - nothing.

I dont think i have BAM, but fo sure, i know what you mean about shitting hydrochloric acid. I havent really mentioned that to the team yet and i think to go into further explanation would be tmi for this forum!!!

Regards

Newc

Thanks to all the others who have replied. I think its a useful discussion so glad i necroed the thread. /winks at Tiggy

 

 

[soto]

3 hours ago, Newcouch said:

Hi Soto,

Sorry to gear that. I couldnt agree more. Almost all IBD poeple have othe symptoms, be it BAM or GERD (like me).  I am sure it is an imbalance in the dietary system rather then the immune system.  But doctors prefer to treat symptoms than causes.

And ask most UC people what causes a flare and they will say stress. I imagine that is part of how cannabis helps ibd, but also i think the entire ecs is totally underesearched. It wouldnt surprise me if thc modualated rather than suppressed the immune system.

Oddly enough i am mildly laid up now, due to building stress over an event today.  alcohol is an obvious cure, so that is what i am taking, and it is working well - bowels / stomach settling, pain and anxiety doing - but what use is that? I hate taking alcohol for ibd. And obviously, i can only do it on a sunday during the day when the wife is away! alcohol is a stupid cure.  But it works.

I tried CBD - nothing.

I dont think i have BAM, but fo sure, i know what you mean about shitting hydrochloric acid. I havent really mentioned that to the team yet and i think to go into further explanation would be tmi for this forum!!!

Regards

Newc

Thanks to all the others who have replied. I think its a useful discussion so glad i necroed the thread. /winks at Tiggy

 

 

Thanks for responding. The threat of pain from BAM is not my main concern tbh, it's the threat of fistulas which once there will not heal. If they get infected you can end up with blood poisoning, surgery can remove them but that carries a small risk of your sphincter muscle being severed and becoming incontinent for the rest of your life. 

I can put up with that I guess, the big scare is cancer. I'm not sure how much more at risk of bowel cancer I am, probably 10% over the general population although I've read somewhere that the risk is much higher. My father died of prostate cancer, it was pretty upsetting as in the last week of his life he was in severe pain, although not sure how bad it was when he actually died. The death of Greg Gilbert, the frontman of Delays who died of bowel cancer recently has brought a lot of the memories back, reading his twitter posts about struggling to find a balance between pain relief and hallucinations like my father did, it's something I want to avoid like the plague. 

As for alcohol, it doesn't have as severe effect on me as caffeine, the effect from alcohol is something that tends to build up overtime rather than a single event but it does have an effect. 

Apart from bile acid sequestrants there is one ray of hope for me, which is the new treatment FGF19 but clinical trials sadly had to be stopped as people developed liver complications from taking it. Oh and it's associated with cancer, fking typical huh.. However I think perhaps that's where the problem lies, perhaps my body isn't producing enough of it.

Edited October 3, 2021 by soto

[Newcouch]

Hi Soto,

 

As part of the IBD community, the one thing UC sufferers can see is that no matter how bad UC can be, Crohns is a whole lot worse, so i really sympathise with you and wish you all the best.

 

Re bowel cancer; i am really quite relaxed about it. I have lost a good friend to it. But i think bowel cancer, like others, is dependent on ignormance and fear for severity; people ignore the symptoms until it is too late.

With IBD on the other hand, we tend to focus on the symptoms. So i am confident that a) IBD doesnt raise the likelihood of bowel cancer and b) if i do get bowel cancer, it will be discusovered really early since i am regularly getting prodded / tested / camerad etc.

 

The same goes for prostrate cancer. although on one famous occasion i almost asked the nice gentleman exactly why he was digitally raping me if it wasnt to check my prostrate in passing.....

 

My father was on prostrate medicine for many years at the end of his life.

 

Fistulas scare the living crap out of me, and a friend with Crohns had the interconnection thingy which i dont even want to think about.

 

I hadnt heard about fgf19, looks interesting, but as you say, cancer....

 

On the bright side, i am a member of the facebook 'ibd runners' page, and yesterday a whole shedload of IBD ers completed the london marathon, so its not all doom and gloom.

 

Hang tough,

 

Newc

 

 

 

 

[soto]

11 hours ago, Newcouch said:

Hi Soto,

 

As part of the IBD community, the one thing UC sufferers can see is that no matter how bad UC can be, Crohns is a whole lot worse, so i really sympathise with you and wish you all the best.

 

Re bowel cancer; i am really quite relaxed about it. I have lost a good friend to it. But i think bowel cancer, like others, is dependent on ignormance and fear for severity; people ignore the symptoms until it is too late.

With IBD on the other hand, we tend to focus on the symptoms. So i am confident that a) IBD doesnt raise the likelihood of bowel cancer and b) if i do get bowel cancer, it will be discusovered really early since i am regularly getting prodded / tested / camerad etc.

 

The same goes for prostrate cancer. although on one famous occasion i almost asked the nice gentleman exactly why he was digitally raping me if it wasnt to check my prostrate in passing.....

 

My father was on prostrate medicine for many years at the end of his life.

 

Fistulas scare the living crap out of me, and a friend with Crohns had the interconnection thingy which i dont even want to think about.

 

I hadnt heard about fgf19, looks interesting, but as you say, cancer....

 

On the bright side, i am a member of the facebook 'ibd runners' page, and yesterday a whole shedload of IBD ers completed the london marathon, so its not all doom and gloom.

 

Hang tough,

 

Newc

 

 

 

 

Hi mate,

I'm afraid I'm stuck between a rock and a hard place. The crohn's causes inflammation (or rather is inflammation) to the point where my calprotectin levels are at the point where for some people it would indicate bowel cancer. 

So it's quite possible bowel cancer could get overlooked. I guess it's important I looked out for other signs of it given this.

Edited October 4, 2021 by soto

[Newcouch]

Hi Soto,

I didnt know that raised calprotectin was implicated in bowel cancer, but it makes sense.

What i meant was that they have their damned cameras up there so often, they should be able to pick bowel cancer up early.

Im expecting the little pot through my postbox any time, but things are so up and down at the moment that my levels could be anything and it wouldnt surprise me.

Regards

Newc

[soto]

15 hours ago, Newcouch said:

Hi Soto,

I didnt know that raised calprotectin was implicated in bowel cancer, but it makes sense.

What i meant was that they have their damned cameras up there so often, they should be able to pick bowel cancer up early.

Im expecting the little pot through my postbox any time, but things are so up and down at the moment that my levels could be anything and it wouldnt surprise me.

Regards

Newc

Just got a calprotectin result back and it's 1617 so I guess that's good. Now below what it was last October. These things are so much of a snapshot though, am about to go on a diet so will be interesting to see what that does.

Thing is I was a hell of a lot worse in October so I don't think calprotectin is that good a measure. I was in a pretty bad way, green diarrhoea, weeks of diarhrea at a time, was fking horrible. I'm glad that those times are very much behind me.

Edited October 5, 2021 by soto

[soto]

On 04/10/2021 at 9:01 AM, Newcouch said:

Hi Soto,

 

As part of the IBD community, the one thing UC sufferers can see is that no matter how bad UC can be, Crohns is a whole lot worse, so i really sympathise with you and wish you all the best.

 

Re bowel cancer; i am really quite relaxed about it. I have lost a good friend to it. But i think bowel cancer, like others, is dependent on ignormance and fear for severity; people ignore the symptoms until it is too late.

With IBD on the other hand, we tend to focus on the symptoms. So i am confident that a) IBD doesnt raise the likelihood of bowel cancer and b) if i do get bowel cancer, it will be discusovered really early since i am regularly getting prodded / tested / camerad etc.

 

The same goes for prostrate cancer. although on one famous occasion i almost asked the nice gentleman exactly why he was digitally raping me if it wasnt to check my prostrate in passing.....

 

My father was on prostrate medicine for many years at the end of his life.

 

Fistulas scare the living crap out of me, and a friend with Crohns had the interconnection thingy which i dont even want to think about.

 

I hadnt heard about fgf19, looks interesting, but as you say, cancer....

 

On the bright side, i am a member of the facebook 'ibd runners' page, and yesterday a whole shedload of IBD ers completed the london marathon, so its not all doom and gloom.

 

Hang tough,

 

Newc

 

 

 

 

This video explains a bit more about FGF19.

Also see this link which reports on the results of clinical trials for 'NASH: non-alcoholic steatohepatitis'.
https://www.healio.com/news/hepatology/20201116/aldafermin-produces-fibrosis-regression-in-nash

I think it unlikely that I have NASH ( the worst form of fatty liver above) as I had a load of ultrasound scans only a week or so ago. However I have known for almost ten years that I have fatty liver (likely non-alcoholic by the way, I'm not as big a boozer as you guys think! especially not these last few years:-)). I've had the bile acid issues since 2016. Had a colonoscopy in 2017 that was completely normal, no crohn's although my buttocks were getting burned by the bile acid at the time!... Also had a calprotectin level of just 50..

From the start I kept telling them I thought the problem was bile acid maladsorption. Incidentally the SeHCAT test which diagnoses BAM, was the last test they gave me too! Came back as severe BAM, 1.9% of which 19% is normal..

Also did you know that BAM is quite common? Probably as common as diabetes, just not as severe as mine for most people.

Edited October 5, 2021 by soto

[Newcouch]

Thanks for all the replies.

 

Things have moved on substantially.

 

First; the bad; what i thought was recurrent sciatica / pulled muscles etc turns out to be moderate hip osteoarthritis. Its painful. No more marathon running or skiing for me at the moment; all nhs will say is; no more impact sports. waiting for next specialist to talk about possible 'interventions. This is a real pain.

 

The good.

Been accepted and started prescription meds for UC; cbd oil and thc oil.

Also started an elimination diet.

 

At some point, it just fell into place. For 8 days and counting i have had a normally functioning gut. This is simply miraculous!!!!

 

Is it down to the thc, the cbd or the diet? or a combination?

 

It brings us down to the basis of a lot of these conversations; its the brain / gut axis. it gets imbalanced in an unknown number and different ways, resulting in many different symptoms. all our bodies systems work together, and the ecs system has a role in the brain gut axis as well as the immune system; and so does diet.

 

This is so bleeding obvius, and yet the med profession seems to just exist in high level biochemistry and individual molecular interaxctions and effects; doctors and researchers on individual drugs; and noeone will try the systems interactions approach.

 

I know its complicated - systems engineering is what i do in my branch of engineering; but the rewards are massive (and the dangers).

 

Having started in just steak and eggs, for about 2 weeks, i have successfuly re introduced; wheat, alcohol, dairy, leaf veg, rice, wotsits (oh god, the releif).  Potato seems to have set off a one day relapse which i quickly recovered from; so the deadly nightshades go on the back burner for a few days.  Next is caffeine (amazingly - not missed this at all), then soy.

 

So, cannabis and elimination diet - highly recommended. Lost weight too.

Newc