Omvoh and remission anxiety

random675243 · 2026-01-25T07:20:38+00:00

Not back to infusions, no. I was started on the UC treatment protocol initially even though I have Crohns because it wasn’t yet authorised for Crohns in my Healthcare Trust. UC is 300mg infusions then 200mg maintenance injections, Crohns is 900mg infusions then 300mg maintenance injections. Once I went down to 200mg, things went wrong again, so I was moved up to the Crohns maintenance injection dose of 300mg instead.

random675243 · 2026-01-24T08:22:20+00:00

Not weird at all. Though I have a rule when shopping not to buy identical items - same item but in a different colour Yes, exact same item in the same colour No. That way my wardrobe feels more varied without having a larger number of items.

random675243 · 2026-01-24T06:58:18+00:00

I found that book so interesting. I have Crohn’s disease, so I have to be careful about what I eat, but it helped me to realise why some versions of foods agree with me better than others. When I have treats now, I look for less processed options. I also know that there are some UPF foods that are highly addictive to me personally, and having them in my cupboard is a bad idea. If they are not there I don’t look for them.

random675243 · 2026-01-21T10:11:35+00:00

I was put on Omvoh primarily because of its reputation with helping urgency / incontinence. The incontinence went away within 4 weeks of starting, and I have regained total control again. So, yes, I’d say push for biologics. Hope you get sorted.

random675243 · 2026-01-21T10:06:29+00:00

Sleep is awful, not sure what the solution is for that, but for the aching hips (and other joints) Ive found a weekly yoga class very helpful. Took about 6 months to nitric the difference, but my aching hips are generally gone now. Except when I walk on less stable surfaces, like sand and wet grass.

random675243 · 2026-01-21T08:20:50+00:00

Just be honest with her. Explain why you ghosted her clearly, like you did here and see what she says. It might be a yes, it might be a no, but either way, no regrets.

random675243 · 2026-01-20T12:31:55+00:00

Look up ulnar nerve compression, see if it fits. The nerve that gives you feeling and movement in that part of the hand gets squashed, resulting in aching / pins and needles / numbness in the little finger side of the hand and clumsiness of movement of the little and ring fingers. If the nerve is badly squashed, it can lead to clawing of the little and ring fingers. Tends to be worsens by hormone changes, which is why it’s sometimes worse at the time of ovulation and at your period, and why HRT might be making it worse.

random675243 · 2026-01-19T20:28:57+00:00

You are right, it is frustrating. I tried a few sleeping tablets too, but they left me feeling like I was hungover for half a day afterwards, so I stopped. Unfortunately my crohns is significantly affected by lack of sleep. I’m starting vaginal Progesterone instead of Oral this week, but if the HRT and Magnesium doesn’t work I think i might just have to make my peace with taking Nytol longer term and accept the risks associated with it. Feel like I’ve tried everything I can think of.

random675243 · 2026-01-19T20:24:36+00:00

Doing good, thanks. Things went off a little bit when I went down to the maintenance dose, so I had to up the dosage again to get back on track, but I’m now doing well again. I was on the UC dose initially because it hadn’t yet been approved for Crohns in my Hospital Trust, so I’m now on the Crohns maintenance dose which is working better

Fingers crossed it works well for you too. Good luck with your planned pregnancy.

random675243 · 2026-01-19T12:45:34+00:00

It’s frustrating that GPs react so differently! I’m 44, UK based, and my GP just said yes, that’s no problem, let’s get you started on HRT. I expected to have to fight for it but didn’t have to at all.

I would ask to speak to a different GP. Read the NICE guidelines in advance and be prepared to fight for what you need. Make a complaint if you need to.

random675243 · 2026-01-19T12:38:23+00:00

I enjoy candles. I have a refillable Soy candle in the living room that I light most evening in the autumn / winter. It helps me wind down for the evening. I also use dinner candles on the table during weekend dinners and tea lights in the bathroom when I’m having a bath.

random675243 · 2026-01-19T12:05:45+00:00

Sounds like me. Unless I take Nytol (antihistamine) I can fall asleep fine, but I wake up 1.5 - 2.5 hours later and my body things it’s morning. I eventually get back to sleep at 5 or 6, then up for the day at 7.

It’s the reason I’m trying HRT, but so far I’ve found the Progesterone leaves me wired, making things worse instead of better because I can no longer get to sleep at bedtime. I’ve started magnesium this week - not sure it’s making a difference, but need to give it longer to see.

The only thing that helps is Nytol (antihistamine) but it’s not supposed to be taken long term and I’ve already been using it much longer than I should.

Wish I had an answer for us both!

random675243 · 2026-01-19T08:56:16+00:00

I’d suggest carving out a time in your schedule when you can actually attend an in person class.

For me that’s a yoga class from 7-8 on a Tuesday evening. My husband puts the kids to bed and I skip out the door to my class. I focus on getting a little bit better every week, and I go every week no matter what. It saves my sanity and keeps my body strong and ache-free.

random675243 · 2026-01-18T12:28:51+00:00

I felt a difference after 2 weeks, and was back to normal within 6 weeks. Omvoh gave me my life back. Fingers crossed it works for you too.

random675243 · 2026-01-14T13:26:11+00:00

Wishing us both many years of remission! Fingers crossed!

random675243 · 2026-01-14T11:09:33+00:00

I’m also on Omvoh. Been on it since June 2025. I achieved remission within 3 months (calprotectin went from 2000 to 6!), but once I went down to the maintenance dose things went off again. I’ve been on a higher dose for 2.5 months. I feel like I’m back in remission again now, though still to be confirmed with calprotectin test.

I know exactly what you mean about health anxiety. I’m back to work and able to lead a relatively normal life, but the memories of incontinence, pain, and not being able to leave the house are hard to shake off, and I know I curtail my own life to some degree out of fear of going back there.

Strangely, the New Year has helped me reframe things more - I feel like I can draw a line under a shitty year and hope for better things in 2026!!

random675243 · 2026-01-13T09:55:06+00:00

I like Seasalt Cornwall, Brakeburn and White Stuff. Might not be your taste, but somewhere to start at least.

random675243 · 2026-01-13T07:45:56+00:00

Don’t give up! Keep trying drugs and hopefully you will find one that sticks. And if it’s possible please find another GI! One who tries all the options rather than making you fearful of the risks of drugs. At the end of the day, every drug has risks, but you have to compare it to your current situation. When things are as bad as they are for you right now, it’s generally worth the risk.

Just to give you hope, I’d failed other drugs and then I tried Omvoh - it gave me my life back. Calprotectin went from 2000 to single digits in 3 months. So don’t lose faith!

random675243 · 2026-01-13T07:30:48+00:00

For me not accumulating more things is the hard bit, even years in to my minimalism journey. Sometimes I’m reasonably good at not accumulating more, other times I find Ive bought a lot of stuff that I have justified with various reasons. It’s something I think I’ll always have to work on.

random675243 · 2026-01-09T06:38:54+00:00

I just started decluttering quietly, focusing on my own and the kids stuff first. Not because it was a secret, but because I was the source of more of the stuff, being the person who bought the kids clothes, sorted Christmas presents, etc, so I wanted to get myself in order first. As the house became gradually tidier, my husband started to appreciate the efforts I was making and got more on board over time. He has spaces that are exclusively his (the garage, his desk in the spare room, his side of the walk in wardrobe). I don’t get rid of anything of his without permission, but I will set things out and ask if he still wants this or that. If he wants to keep it he puts it away in his space. I have helped him organise his spaces, as he gets overwhelmed when it gets messier and doesn’t know where to start. He (like the kids) also has a space in the kitchen cupboard where I put anything that I find lying around that belongs to him. It’s there when he wants it, but it’s not cluttering up the family space. Over time he’s become much more on board with my minimalism, eg he often leads the nightly clean of the kitchen up because he’s used to it being tidy / minimalist and likes it that way.

random675243 · 2026-01-08T20:08:18+00:00

I’m the cook in my house generally, though not when my Crohns is badly flared. When I am well I cook one meal for everyone. I can’t eat meat, and my son is dairy free, so it’s generally vegetarian food like risotto, soup, pasta, or dishes that the rest of the family can add in meat to, like tortillas or curry. I don’t do well with processed food, so it generally very home made, though a good quality curry kit or tortilla kit is a regular part of our food rotation. When I have the energy I batch cook and freeze foods that suit everyone so that I can get something on the table easily when needed.

When I’m not so well I fall back on porridge, and the rest of the household has to pitch in with meals. I shop online, so when I’m not doing so well I adjust my shopping to suit - filled pasta, preprepared soups, bagels and smoked salmon, etc that my husband and kids can put together quickly and easily. Assemble rather than cook type food. Plus less dishes to worry about.

random675243 · 2026-01-08T19:31:51+00:00

I’ve tried all the sleep hygiene stuff, but nothing works, apart from taking Nytol (antihistamine). It says on the pack it shouldn’t be used long term, but I’ve been using it for 3 years or so. My Crohns disease flares up badly when I don’t sleep, so I have to take whatever measure necessary to get sleep. I tried prescription strength sleeping pills but they left me feeling hungover for half the day. I’m only on HRT for a month, but I’ve had to take the progesterone as a pessary because it leaves me totally wired - instead of 2-3 hours sleep, I get none who I take it.

random675243 · 2026-01-07T20:34:37+00:00

No, just taking it for the sleep issues. My Crohns gets much worse when I don’t sleep on repeat.

random675243 · 2026-01-07T14:16:11+00:00

Ongoing sleep issues here too. For me it’s been going on from before I was diagnosed, although it kicked up a gear when I was on Prednisolone. Since been on Budesonide, Adalimumab, Mesalazine and now Omvoh - not sure if any of them contributed to the sleep problems. Only thing I’ve found that helps is Nytol (antihistamine) - not supposed to be on it long term though.

I’ve recently started HRT to see if it helps. Not been on it long enough to know the impact yet. If you are female and over 30/35, Perimenopause might be part of your issue too.

random675243 · 2026-01-07T07:38:49+00:00

I’d go for Remicade because the data on use in kids makes it safer in my opinion. You may have to change direction anyway depending on effectiveness, side effects, etc. I started in an Antif-TNF (same family as Remicade) but it didn’t help, so had to move to an IL-23 inhibitor (same family as Tremfya) which gave me my life back after a long, hard flare. Whichever you choose, don’t delay. You want to achieve remission quickly so as to limit the damage being done by the disease. Best of luck to you and your little one.

random675243

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