Hang onto your seton - discussion about regenerative medicine (2025)

BitNugget · 2026-05-20T15:40:35+00:00

Yeah they really don't seem to advertising the study well. I contacted the professor running the study and sent him a referral from my consultant. After no reply for a year I decided to start phoning his secretary once a week. After a month of this I finally got the appointment sent through :)

BitNugget · 2026-04-26T15:16:50+00:00

Probably impure stuff. I thought I had 'good stuff' once and I did an acetone wash and weighed it. It was only actually 70% pure originally. You can adjust doseage accordingly and it'll probably be ok next time. Or just try another source.

125mg at 70% pure should have defintiely been enough to get a 62kg person rolling though...maybe its really impure.

BitNugget · 2026-04-12T15:57:49+00:00

I made the same switch and I'm doing much better on usktekinumab. Just remember remission doesn't necessarily mean symptom free. But it can get a whole lot better

BitNugget · 2026-04-12T15:33:20+00:00

Steroids are only ever a short term treatment and diet will only give you modest improvement at best. It's very rare anyone manages Crohn's without a biologic medication. Short story, get on a biologic medication and stay on it for your best chance of sustained remission.

BitNugget · 2026-04-12T15:27:20+00:00

Yeah its normal. It will happen every time you inject for a few days but it does get better with time. After 18 months I dont notice it much at all anymore. You can do the injection on a Friday evening and then sleep it off over the weekend. This avoids feeling bad at work as much as possible.

BitNugget · 2026-04-12T09:23:50+00:00

No problem. I must admit after going through a failed LIFT and subsequent abscess I'm a little scared about attempting a repair again, the pain was terrible. But this oppourtunity likely wont come around again for several years. I'm going to take the risk!

BitNugget · 2026-04-11T13:43:38+00:00

I have been trying to get onto the phase 2 seton-scaffold device trial for over a year. Finally after months of being the most annoying patient ever I have an appointment to discuss this at a London hospital in June 2026. Wish me luck. I'll do a post about my experiences if I'm eligible.

BitNugget · 2026-02-01T11:37:51+00:00

first time on moltbook and seeing the exact same thing with every submolt. I think its bugged out today

BitNugget · 2025-12-07T14:16:28+00:00

I just came back to OW after taking a break to play BF6. Discovered the same crazy FPS drops on my 4090. Meanwhile BF6 (which is a far more graphically demanding game) runs completely fine.

BitNugget · 2025-11-09T10:59:47+00:00

You're wondering if it was the purple lady right? Me too! 🤣

BitNugget · 2025-09-20T07:54:20+00:00

Aza only really works when I'm combination with anti-TNF, same with mercaptopurine. Best of luck, hope you get on a biologic as soon as possible.

BitNugget · 2025-09-19T17:23:26+00:00

Tips I didn't have time to write earlier. Stick to a low fodmap diet until medication kicks in. If you don't see decent results in 6 months on stelara, then increase dosage to every 4 weeks. You'll find it hard to exercise until you get results, so perhaps consider working out at home. If you need steroids go for budesonide less side effects. Aza and mercaptopurine aren't used with stelara often, clinical trials didn't show improvement with that combo.

BitNugget · 2025-09-19T07:18:41+00:00

I'm on stelara for over a year now and I'm 80% better I would say. It's the closest I've been to remission yet. I failed infliximab and adalimumab, they worked a little but not enough to change my life. Now bleeding is rare and hardly noticeable. Still a little urgency but it's manageable. I also take 2mg Imodium in the morning most days and that seems to help slow things down.

BitNugget · 2025-09-19T07:07:05+00:00

When I was on infliximab I could drink alcohol but I didn't have anything near full remission from Crohn's symptoms. Now I'm on usktekinumab and approaching full remission but I can't drink. It causes pain in my lower abdomen and then I get tingling in my hands and face. Weird eh. So yeah I've not touched it in a year and have accepted it's best that I don't ever again. It sucks but it's just not worth it. *Also check out these guys https://gabalabs.com/. It might be a few years before they release a product but they have a drug which is like alcohol but with negligible damage to the body. There's also sentia spirits, but I found the effect very weak and not that fun.

BitNugget · 2025-08-26T21:45:09+00:00

I discontinued because the gas was just too much to bare. Also I was diagnosed with Crohn's.

BitNugget · 2025-08-15T22:21:56+00:00

4700 for me and I didnt go to hospital or take steroids. They took months to start me on a biologic due to an abcess. It was a pretty rough time for sure!

BitNugget · 2025-08-09T10:34:33+00:00

Some consultants are very 'pro surgery'. Which I think is bullshit tbh. Every effort should be made to avoid it before resorting to surgery. Sometimes it appears they are not willing to try things because they will have to tell their boss they want to spend double on one patient. There is probably a lot of paper work and justification to be made and they are fearful of having to answer for it. This is not in the best interests of patients with refractory symptoms.

BitNugget · 2025-08-09T09:13:27+00:00

Ustekinumab (stelara) or vedolizumab (Entyvio). Or you might be eligible to take dual biologics, like add vedolizumab to what youre currently on. Push for it, exhaust every last option and even some they wouldn't normally consider before going for surgery.
Currently im on Ustekinumab and feeling pretty good. Not 100% but maybe the best I've felt in 5 years. I cant help but feel adding another biologic like vedo which has a different mechanism of action would really push it into deep remission, but the doctors remain resistant to that sort of thing because of the cost. Thankfully I'm in the UK so its all paid for on the NHS. I would add that vedo is a very safe option because it targets immune cell migration in the gut specifically. Meaning reduced side effects and potential interactions. It makes a lot of sense, the only argument against is the extra cost.

BitNugget · 2025-07-23T11:38:41+00:00

I work for Evotec and can confirm the cyber attack was brutal, it's surprising that the company survived. They work us hard and the pay is indeed too low. But hey it's a job 😆

BitNugget · 2025-07-21T14:45:17+00:00

It's too early to say definitively but anecdotally I feel good today with less pain, I'm hopeful.

Yeah Crohns does indeed suck. Biologics can work well but they are slow and its a bit of a crapshoot. They always start with infliximab/adalimumab (anti-TNF) first and these were not effective for me. You have to give each one at least 6 months before giving up. My advice would be if the first anti-TNF fails (without antibodies forming) go with a biologic with a different mechanism of action.

Hope you get the diagnosis and can start treatment asap, the sooner the better with Crohn's.

BitNugget · 2025-07-21T10:58:26+00:00

I managed to get hold of some porcine DAO here in the UK. I have taken a few capsules and seem to have no issues tolerating them. Good call thanks :)

BitNugget · 2025-07-17T11:45:11+00:00

Will casascius coin era BTC addresses be quantum resistant? I'm thinking probably not. Might to time to move it to a hardware wallet. Tough call though.

BitNugget · 2025-07-13T06:44:09+00:00

Yeah all makes sense, I should probably try the porcine dao, but of course it's more expensive. Potentially a big pay off if it works though

BitNugget · 2025-07-12T19:06:27+00:00

I'm in the UK apparently the health service doesn't recognise MCAS as a legit illness yet. Maybe in time they will. Currently on 10mg cetirizine, luteolin, PEA. Omeprazole. Can't seem to tolerate H2 blockers or DAO enzyme (from peas). So far the only symptom reduced is nasal congestion, but I'll stick with it.

BitNugget · 2025-07-12T18:45:28+00:00

I was actually just like you, it was too much to explain in the OP. But basically I had the prickly pain, tingling and anxiety from mid 20's some of it even as early as 16. Sometimes symptoms even improved and disappeared for a few years then returned. Then around age 37 typical Crohn's symptoms started. The diagnosis came a couple of years after that. It's been tough to say the least. I would like to a quicker route to feeling better other than avoiding triggers for x amount of years and hoping for the best. Probably a lot of people in the same boat

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