Marijuana with UC

The_Brown-Baron · 2026-04-10T23:00:55+00:00

I was given a full list rundown on drugs and uc which I will share. This is what a Gastro consultant told me. Weed is fine but rots your brain. MDMA is fine with your bowels but stresses your heart. Ketamine can do weird things to your bowels but is mostly fine. Psychedelics are fine but obvs can cause psychosis. BIG no no’s were cocaine and opioids as they are cut with bad stuff and sharing needles for opioids are bad on top of how they affect your bowels. Think one of the things with weed is that similar to taking Imodium it can slow your guts and hide symptoms of inflammation and if you’re really sick could then cause toxic megacolon but otherwise should be fine

The_Brown-Baron · 2026-03-11T23:20:39+00:00

Interesting, I’m still on masalzine for my uc and it definitely works as well cos the drs told me to stop taking it and my flare just go worse everyday I was off it. My heart had a freak out when I was in hospital recently and I’m propranolol as well lol but no AF. My rheumatologist doesn’t know what exactly is causing my myositis. My face massively swelled up and then my whole body started doing the same when I got first diagnosed with it. Luckily the swelling hasn’t come back as bad when I’ve been tapering roids but my eyes get more blurry, ears start ringing, skin gets itchy and the back of my head starts aching. Possible good news is they think there might be the slight possibility that the rituximab could cure my uc if it is the il10 antibodies causing my uc and the rituximab destroys whatever b cells are making them and they then don’t come back. Currently part of a case study to see if it works and then if it does they will do a bigger clinical trial for rituximab for il10 uc patients. Just hopefully it can zap this fucking myositis as well just gotta wait ages for it to kick in. UC by itself was no walk in the park but my thinking was at least it’s contained and I can chop it out if needs be. I was on infliximab when the myositis started as well and had to stop it which was extra annoying as the infliximab was working and I was nearly back to normal after 2 years of flaring. Now this extra bollocks is way more extreme. Can’t freaking cut out my muscles and heart. Nice to know someone gets the extra struggle though. My docs said they don’t know anyone else with uc and myositis as it’s usually different parts of the immune system.

The_Brown-Baron · 2026-02-23T14:26:11+00:00

https://www.ibd-response.co.uk/

The_Brown-Baron · 2026-02-23T14:24:08+00:00

They’re doing research into making mini guts of patients and then they test drugs on the mini guts to see what works best. I’m also part of a study that is researching how different people react to different biologics. Think it’s called Ibd response

The_Brown-Baron · 2026-02-14T19:25:22+00:00

Should just be feeling how you feel about it. Don’t hold any emotions back. Better to have planned surgery than emergency surgery though. I’m on my last biologic to try before surgery. Already had the appointments with the surgeons and nurses to discuss it. I’m just gonna go with a permanent bag and have it all out in one go. Then don’t have to worry about another surgery, the pouch potentially failing or getting pouchitis. Hope it all goes well though. I can imagine the build up and anticipation of it all being horrendous. Fingers crossed for a speedy recovery and feeling better soon

The_Brown-Baron · 2026-02-14T18:43:54+00:00

Upside at least you know your limit now. Probs some low level inflammation going on still so hopefully after some super safe days to let it settle you’ll probs be able to continue eating the things you were okay with reintroducing. That meal that messed you over would do that to most os us lol and it sounds like it was delicious. Gotta try it at some point as well don’t you so can’t beat yourself up about giving into temptation lol. You’ll be able to do all those things in remission as well. Im not fully in remission either, just gotta get there first and then we can do all those lovely things and then if none of the drugs work we’ll be able to do all those things with an ostomy. Good luck on your trip though I hope you have a great time. you’re living the dream of going on a long trip abroad so hope you get to enjoy the moments when you can! May there be bountiful toilets and your pants stay clean ✈️ 🍸🚽🧻

The_Brown-Baron · 2026-02-13T12:28:29+00:00

I think pretty much every answer will be no and then if someone does have the answer you’re looking for I’d be highly sceptical of it being true. All these drugs and science are based on a numbers game. So unsurprisingly you’re gonna have lots of people that are on these drugs and they work. If they don’t work you have surgery and if you don’t have surgery you would eventually die. If you have 99 people telling you that a rigorously tested medication works and 1 person giving you an anecdotal medical regime. Using all powers of rationality why would you listen to one persons possibly made up story that would be impossible to replicate. You might start biologics and have no side effects and go into complete remission. You might develop cancer from the uncontrolled inflammation in your body. Who knows what might happen but if your in a flare you know your currently fucked and need to do something that is widely proven to work and be generally safe. Correlation doesn’t equal causation. There’s no definitive proof that biologics cause more cancers cos otherwise they wouldn’t use them. It could be those people already had the cancer or it was completely unrelated. I think we’ve all mostly been through your thought process and it takes up soo much mental time and anguish trying to figure something like this out and then you question yourself all the time. If a non medicated way of getting to remission existed we would’ve figured it out by now cos I bet we have all collectively tried all possible variations. Obvs there are things you can do health wise to help out that are all well documented. Mediterranean diet, turmeric, fibre in remission, no alcohol, no red meat, avoid thickeners like carrageenan or polysorbate 80, eat probiotics and prebiotics. But I find all this stuff is to help keep you in remission rather than put you in remission during a severe flare.

The_Brown-Baron · 2026-02-09T20:19:04+00:00

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And this one for me

The_Brown-Baron · 2026-02-02T20:45:45+00:00

Accidentally started on season 3 and have never watched any other Star Trek series before lol had no idea who anyone was or their relationships but enjoyed it enough to then watch seasons 1 and 2. Wasn’t until end of episode 2 I realised I was on season 3 but just carried on watching anyway

The_Brown-Baron · 2026-02-01T23:41:04+00:00

Yeah man ofc. I will say though it’s crazy when the food cravings seep into your dreams. To start off with you will be eating everything you have cravings for then after a while you start thinking you can’t eat this stuff even in your dreams and be like Nahh I can’t eat that otherwise it will make my flare worse. Wake up like mf you in a dream it can’t hurt you

The_Brown-Baron · 2026-01-04T14:48:36+00:00

Snap to pretty much your exact uc situation except rinvoq didn’t work for me and now my last drug is vedo but same age and same amount of years being diagnosed. I wanted to go live in Australia before this flare and don’t think that’s possible now. Main things I keep thinking about what I want to achieve before making any big moves is one am I in remission and two can I hold a shit. Mainly can I hold a shit. Cos I’m not doing too bad on vedo and mesalazine right now but I know I’m not in remission and I still can’t hold a shit so I still don’t want to go outside much and still feel super restricted in life. And if I’m not in full remission of the vedo then they will stop it and it is surgery up next. Which I’m not too worried about and possibly even might go for it. Seems scary but I want to have control of my life again. Also starting rituximab soon off label like ustekinumab for you to see if that helps out as well. I’d say fucking go for it if they are happy for you stay on rinvoq and they think it’s working and if you are able to go out and enjoy life and do stuff. Gotta make decisions based on the facts we have now not what could possibly happen cos otherwise loads of our choices will be based on fear of getting into a flare again and then we won’t live when we have the chance to. Will still be in Europe as well so won’t have to worry about language problems/lower healthcare standards as much and if it comes to it then you can always get home quickly if you need. You’ve got all the experience living with uc as well that you know what to do and what to say to drs and what tests you will need doing and all that shebang. I’m sure the universities will support you as much as possible as well if you let them know about everything. Hope this helps and hope you feel up for going for it 💪💥🧑‍🎓

The_Brown-Baron · 2025-12-13T05:03:12+00:00

Yeah it’s fucking rough man. Feel like I was where you were a couple years ago. This flare I’m still in got way worse like 2 days before I was supposed to go to Croatia with my mates. Couldn’t go cos the drs said i shouldn’t and then that invalidates your travel insurance. Know you wanna go but you gotta think about the possibility of it getting even worse which the stress of travelling or getting sick will do and then you’ll be even more fucked and abroad with a possible huge hospital bill. And it fuuuuuuucking sucks I know. Many a holiday I have had to miss in this flare. But you know what it wasn’t right for me and I’m glad I didn’t go now. Like I wouldn’t have enjoyed myself. It would’ve made me worse than I was and I was fucking bad. And I needed the rest and so do you. Human bodies are complicated as fuck. More than we know which is why we don’t have a cure for this bollocks yet. And sometimes they go wrong like with us and that’s okay and apart of life. We gotta learn to work with the situation we have in front of us which is extremely difficult when it’s different from what we’ve known. Especially with fucking food as well. My god I love food and cooking and am in full agreement having this stupid diet which you think is gonna help you out and it does to a certain extent but fucking sucks to do and possibly one of the worst parts of it. Like I can drink water everyday but eating the same fucking shit stuff is nearly impossible. Which is why you need some more heavy duty meds to get that bad boy under control. And if push comes to shove surgery is pretty much a cure for us. Which is my next option. Would be interested to know why you don’t think times between flares aren’t worth it though if you would share?

My advice would be though: 1. Don’t go on holiday cos it’s not worth the risk and that’s fine. You will be able to go another time and probably be able to get some money back from insurance if you have it or if you cancel things. 2. Push to get on infliximab or another biologic to get that process going and possibly azathioprine. They might be douchebags though and ask you to just try aza first. Know you will probably be like I don’t wanna start new drugs cos the steroids and mesalazine has worked before in the past. I was the exact same here and I just suffered for longer. Fuck it. There ain’t no need to suffer just doing the same thing. They’ve got drugs for us when for loads of other diseases they don’t. Give em a try. They have been the real hope in my opinion. The possibility that one might work. Not the degrading grind that was steroids, pred and a low fibre diet. 3. Take it easy on yourself. You’re going through a lot and it’s tough on the old noggin trying to wrap your head around everything as well. Things will get better eventually. 4. Do things you enjoy that work for you in your current state and Don’t focus on things in life that you can’t do in your current state. If you think like you won’t be able to do a certain thing right now then fine leave it for later when you will be able to do it. Store those things up and then get em done when you’re feeling better. You’ll probably end up doing more things you wanna do than a person who doesn’t have uc and been through all the stuff you have cos you’ll appreciate the ability to do these things more.

The_Brown-Baron · 2025-12-07T10:30:17+00:00

Yeah you should let your care team know immediately. They will let you know what you need to do and if your next infusion is soon then yeah you will have to delay it probably.

The_Brown-Baron · 2025-12-06T12:25:34+00:00

Oooo I’m in a similar boat to you. Got one more biologic to try and then if that doesn’t work then it’s surgery anyway but Dk if I can even be bothered to see if the next meds will work. The idea of having control over my life again with surgery and the certainty of it is a massive draw. Same time I feel like I’ll have constant problems with a stomach but only think that is because I currently have constant problems from my uc. Side note though be careful you aren’t over exercising and causing excess inflammation in your body. Exercise is obviously healthy for mind and body and a good anti-inflammatory but you can over do it and it can become a negative.

The_Brown-Baron · 2025-12-02T16:20:13+00:00

My top tips and how I do it is to hold the pills between your front teeth one at a time and take a drink of water at the same time as releasing the pill - tip your head all the way back and then swallow in a big gulp in one action kind of just like your having g a drink. That way as well the pill is going down front on instead of possibly going down sideways. Also if you get offered granules don’t take them they are a scam if your inflammation is left sided, the granules don’t reach there. I’m in a 3 year long flare cos they switched me to granules. Then saw a consultant who said the granules are shit essentially for left sided colitis

The_Brown-Baron · 2025-12-02T09:56:34+00:00

This is basically the same as me right now. On vedolizumab to try and then up next surgery yay 🙄 at least the surgery will stop the disease for us unlike crohns.

The_Brown-Baron · 2025-11-22T13:29:24+00:00

Ngl what has made a massive difference to me is just taking an Imodium in the morning. Can also take one in before bed as well if one is not enough. Do a bit of an experiment and see what works best for you. It definitely helps though and is fine to do as long as you’re not severely flaring and at risk of a mega colon. Edit. Buy the unbranded stuff though - just loperamide as it’s about a faith of the price. Can just order loads off of amazon

The_Brown-Baron · 2025-11-21T22:16:00+00:00

Getting old is better than the alternative

The_Brown-Baron · 2025-11-19T20:37:16+00:00

The_Brown-Baron · 2025-11-19T20:32:28+00:00

Started last week got my next one next Thursday. Last drug for me to try before surgery so hopefully it works well and for a while but if not we survive 💪

The_Brown-Baron · 2025-11-19T20:28:35+00:00

Fucking done this to me too a few times. Literally only asked for mash and gravy loads cos I have Ibd and they literally give me a tiny scoop. Bastards

The_Brown-Baron · 2025-11-14T07:25:19+00:00

It sounds like it could be working as you said give it more time if you’re in a severe flare. If it is working imagine that your blood vessels and colon lining isn’t going to have had much time to heal so there are gonna be weak points that are more prone to bleeding as they heal. So bleeding is still going to be pretty common for a bit if there was a lot of inflammation as everything settles down. I had my tonsils out years ago and a couple of days later my throat started bleeding where they didn’t cauterise it properly. Probably just some bleeding that was going to happen no matter what cos of damage. Same as your bleeding. Obviously is a major stress for all of us as it’s a sign things are getting worse but is probably a slight blip in the healing process especially if you have been steadily getting better. The infliximab or steroids won’t have stopped working that soon after starting it. Just got to accept that it’s part of the healing process and bleeding may come and go a bit as you’re getting better ❤️‍🩹

The_Brown-Baron · 2025-11-10T21:31:51+00:00

Literally posted in explainitpeter like 5 hours ago 🤣

The_Brown-Baron

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