gb1 Posted April 10, 2022 Share Posted April 10, 2022 On 2022-01-20 at 3:44 AM, Newcouch said: i am now on the hospital ibd list, and the surgeon rings me every three months to see if he needs to eviscerate me. if im not bleeding, he is happy. sounds to me like you are on a make work project list...always being told how its going ...(truth is..you'd know if things were off.) tied to ..............asking and inquiring as to your health... Sad truth is.. most of us Know out right..when we are sick.. weather we want to believe it or not? ..that's another deal. This cannabis shit works/helps and has worked for many..regardless if it gets taken down off the net and made harder to find. The shit works and should be looked into MORE but ...sadly anyone can make these meds. .and any ideas of grandeur........... gets trounced! Due to NO PROFITS... watch how it's going here ......where its legal????.. it ant all about getting high 1 Link to comment Share on other sites More sharing options...
silvester growdrobe Posted April 10, 2022 Share Posted April 10, 2022 On 4/9/2022 at 0:46 PM, BarrySHitPeas said: What about just taking/asking for "asacol" its still mesalazine just a boring oral tablet ... (i'm not a doctor, please research yourself) Cheers mate, I'll have to get in touch with the GP. 1 Link to comment Share on other sites More sharing options...
soto Posted April 10, 2022 Share Posted April 10, 2022 (edited) I'm off ustekinumab, completely off all crohn's drugs. This isn't advisable for most people, I came off them on medical advice as something else has come up (it's a long story but it's not that serious, just I need my immune system to be powerful right now). Don't be afraid of immunosuppressants though, they can be very effective for Crohn's, especially the newer ones. For me the BAM is the biggest issue, it's what seems to be driving the crohn's unlike most people where it's their immune system. Time will tell anyway. I will probably go six months now without taking any crohn's meds so will be interesting to see what my calprotectin levels will be if I can get the BAM under control. Edited April 10, 2022 by soto 2 Link to comment Share on other sites More sharing options...
silvester growdrobe Posted April 16, 2022 Share Posted April 16, 2022 @soto Good luck man 1 Link to comment Share on other sites More sharing options...
silvester growdrobe Posted April 27, 2022 Share Posted April 27, 2022 I finally saw a GP this morning, they've already found a pharmacy that can get me my mesalazine by later today! This is great news for me as I'd been rationing about a weeks worth for nearly a month. They're also arranging for me to see a specialist finally. The last letter on the system stated that I should have had a follow up appointment six months after my diagnosis, which was March/April 2020. The assumption is I got lost in the system, there was quite a bit going on in the health service right about then I've never seen a specialist before as all my emails to the local ibd team were bounced back electronically and my voicemails weren't returned. Quite excited actually 1 Link to comment Share on other sites More sharing options...
silvester growdrobe Posted May 6, 2022 Share Posted May 6, 2022 I finally managed to get my hands on my prescription last night. Only two weeks worth when I normally get eight, but it's progress at least. 3 Link to comment Share on other sites More sharing options...
soto Posted May 6, 2022 Share Posted May 6, 2022 (edited) So I'm now a couple of months in from not being under the influence of biologics. All seemed well until I decided to go on a calorie controlled diet which I thought best as I need to lose a couple of stone. However it's made this bile acid issue really visible. Horrible shit I tell you lol. More or less diarrhoea for two weeks, sometimes bloody. I'm beginning to think I should go on a different crohn's drug, maybe steroids or medicinal cannabis that would have the benefit of reducing inflammation throughout my whole body. I had bloody diarrhea on biologics at times too, particularly on inflixmab. Not done a calprotectin test for months. I can't get a decent nights sleep at the moment which is drawing me toward medicinal cannabis too. I've been trying to wean myself off 100mg quetiapine and 300mg pregabalin that tend to make the situation worse sometimes. One thing I haven't been doing is drinking alcohol. Last drink I had was a month ago, always tempted but I know that would probably make it worse too. Edited May 6, 2022 by soto 1 Link to comment Share on other sites More sharing options...
soto Posted May 6, 2022 Share Posted May 6, 2022 Sorry I don't mean to come across as all mumsnet, overly anxious about crap. Just growing a bit tired of this whole affair. 4 Link to comment Share on other sites More sharing options...
Newcouch Posted May 6, 2022 Share Posted May 6, 2022 On 09/04/2022 at 8:27 AM, silvester growdrobe said: I'm currently in a situation where my pharmacy can't get hold of my mesalazine enemas. I was diagnosed with UC right at the start of the first lockdown and as such I've never seen a consultant or had any follow ups since. I've left voicemails and emails with my local ibd team but nothing ever comes of it, I can't get a GP appointment before I go on holiday next week, Crohns Colitis UK gave me a number for an NHS service called Hard to Find Medicines to see if I could get an alternative, but the call was such a bad line I had to give up and hope to try again on Monday as they keep normal office hours. I'm not really sure what the point of me posting this is, just to vent really. It's frustrating, feeling like I'm constantly meeting dead ends and my health, and so potentially my earnings too, is going to suffer because of this. Oh well, no point worrying I guess, stress is the last thing I need Im sorry @silvester growdrobe i seem to have missed oyur posts. wtf? i got diagnosed the same time, and i had to fight my ibd team off - they were phoning me all the time. mesalazine is an essential medicine and there is tonnes of it about. i normally get three months suply at a time; nearly 200 tablets or two large boxes. sometimes my local lloyds branch doesnt get the full amount ad i have to get one batch and then the rest two days later. no i do it by post; my next lot is on its way. I simply cant believe your bad treatment. how did you get remission without mesalazine? how do you maintain your remission? wtf is going on? complain! 1 Link to comment Share on other sites More sharing options...
Newcouch Posted May 6, 2022 Share Posted May 6, 2022 Hi @soto sorry to hear about your crohns and BAM - thankfully things we with UC generally dont get to worry about. obv crohns is very different from uc, and they dont know the mechanism of either, but cannabis is an anti inflammatory and immuno modulator. It doesnt 'solve' my UC, nor does it put it in remission. Meslazine 'stops' it and puts it in remission. But it is a poor remission, with pain, fatigue, constant urgency and anxiety - this is what medical cannabis solves for me - it gives me a quality of life that doesnt exist with standard IBD drugs. If i just used cannabis, would it do all that mesalazine does? who knows. i aint going to risk it. would it help for you? Clearly there is plenty of evidence it might. when i spoke to the specialist - bad results on other meds (almost inecitable given the known side effects), such as you report,helped to justify. I would give it a go. Use Sapphire - they only have the one GI specialist ( i wont name him) but he is very good. Its £50 to talk to him, and it can be a really good conversation even without mentioning cannabis. good luck. 1 Link to comment Share on other sites More sharing options...
Cambium Posted May 6, 2022 Share Posted May 6, 2022 (edited) @soto you have crohns, I would advise against dieting at all. Eat what you can, when you can. Your body will call on those reserves at some point. Think of it as savings rather than excess weight. cannabis for sleep and eating and general mental stability. If bio not working try immune suppressant, something like azathioprine. Stay away from pred unless bleeding heavily, or relapsing hard. good luck Edited May 6, 2022 by Cambium 3 Link to comment Share on other sites More sharing options...
soto Posted May 6, 2022 Share Posted May 6, 2022 (edited) 1 hour ago, Newcouch said: Hi @soto sorry to hear about your crohns and BAM - thankfully things we with UC generally dont get to worry about. obv crohns is very different from uc, and they dont know the mechanism of either, but cannabis is an anti inflammatory and immuno modulator. It doesnt 'solve' my UC, nor does it put it in remission. Meslazine 'stops' it and puts it in remission. But it is a poor remission, with pain, fatigue, constant urgency and anxiety - this is what medical cannabis solves for me - it gives me a quality of life that doesnt exist with standard IBD drugs. If i just used cannabis, would it do all that mesalazine does? who knows. i aint going to risk it. would it help for you? Clearly there is plenty of evidence it might. when i spoke to the specialist - bad results on other meds (almost inecitable given the known side effects), such as you report,helped to justify. I would give it a go. Use Sapphire - they only have the one GI specialist ( i wont name him) but he is very good. Its £50 to talk to him, and it can be a really good conversation even without mentioning cannabis. good luck. I've just been putting it off as I'm waiting for a valuation and a survey for a mortgage application (long story) and don't want my income to be affected. I know everyone says grow but that's not a good idea where I live. The dealer I used to use went silent on me a while ago as well. It pissed me off as that's the second time it's happened but the other guy was taking crazy risks so I wouldn't be surprised if he got caught. Edited May 6, 2022 by soto 1 Link to comment Share on other sites More sharing options...
soto Posted May 6, 2022 Share Posted May 6, 2022 1 hour ago, Cambium said: @soto you have crohns, I would advise against dieting at all. Eat what you can, when you can. Your body will call on those reserves at some point. Think of it as savings rather than excess weight. cannabis for sleep and eating and general mental stability. If bio not working try immune suppressant, something like azathioprine. Stay away from pred unless bleeding heavily, or relapsing hard. good luck Regards losing weight, I think it could be an issue further down the line but I don't have Crohn's of the small intestine, just colonic and arguably perianal. It's one of the best things about my situation to be honest but also mysterious as if I had ileal Crohn's it would explain the bile acid malabsorption. Link to comment Share on other sites More sharing options...
Newcouch Posted May 8, 2022 Share Posted May 8, 2022 hi @soto i thought some involvement of the small intestine was symptomatic of crohns? pure colonic and even perianal i thought was just uc. i know the biopsy is the gold standard, but i didnt kno you could have crohns without small intestine involvement. sim, its the small interstine that causes BAM innit? hence why we wiv uc dont worry about bam? Link to comment Share on other sites More sharing options...
soto Posted May 9, 2022 Share Posted May 9, 2022 (edited) 19 hours ago, Newcouch said: hi @soto i thought some involvement of the small intestine was symptomatic of crohns? pure colonic and even perianal i thought was just uc. i know the biopsy is the gold standard, but i didnt kno you could have crohns without small intestine involvement. sim, its the small interstine that causes BAM innit? hence why we wiv uc dont worry about bam? There are about four different types of BAM IIRC. For example you can develop it if you have small bowel resection but also if your gallbladder is removed. They suspect that my bile duct is implicated, I may even have an overproduction of bile rather than malabsorption. I've had a capsule endoscopy (which I admit can be a bit of a snapshot) and that showed a healthy small intestine. I'm also over nourished in some areas not under, even on a diet. To be honest it is a bit mysterious but then I don't think BAM Is that well understood anyway. There's a drug called obeticholic acid that may be about to be approved for BAM in the US. Will be interesting to see if that helps as may give an insight as to what is going on. As for crohn's, it can occur in any part of the gastrointestinal tract, from the mouth to the perianal area. It can even affect your skin. Edited May 9, 2022 by soto 1 Link to comment Share on other sites More sharing options...
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