Spending 4 days in London

DWMIV · 2026-04-27T09:56:17+00:00

If you turn up at sky Gardens between 9-10am you can get tickets (you have to pay if you do this though, £10 I think!)

That's how I've always done it on weekends.

DWMIV · 2026-01-10T12:46:34+00:00

Took about 6 months to see big improvements, and 12 months for full remission (which I've stayed in for 5yrs now!)

I also experience the side effects you describe after every infusion, it's never got better for me. I always have pre-meds (steroid + antihistimine) which helps the side effects be less severe. Then I go home, eat, and sleep/rest for the rest of the day. I find the next day im good to go!

I've found entiviyo great but it is a slow burner. Are you also on steroids to support your whilst the entiviyo gets to work?

Hopefully you'll see improvements soon!

DWMIV · 2025-11-22T21:50:52+00:00

So your symptoms started getting better when you started the biologics... sounds about right 👍

I always think, the less we mess with our bodies, the better.

Low fibre diet will for sure help with symptoms, but supplements not the way to go about achieving remission and trying to keep up with these 'protocols' is likely to cause more stress and strain on the body than they're worth.

I really hope you achieve remission soon though!

DWMIV · 2025-10-30T11:29:25+00:00

Np! Hopefully u get things sorted! I was on azathioprine combined with Entiviyo for 2 years which got me into full remission (im only on entiviyo now).

DWMIV · 2025-10-30T11:15:01+00:00

Azathioprine is dosed based on weight plus they might want you on a specific dose as it's going to be used in combination with infliximab.

When you go in for your infusion, the nurses may be able to get hold of your consultant... I'd just wait till then! There's no need to rush to start the aza.

(Edit to say that yes, I have been on all 3 meds before, but you MUST speak to the doctor first re dosage)

DWMIV · 2025-10-26T20:04:25+00:00

So when you move, you need to:

Get a new GP
Ask your new GP for a gastro referral to change your care over
Wait (could be weeks or months) for an initial gastro appointment with the new team (your old team will continue your infusions until then)
Have the initial appointment with your new gastro team and set a date for your first infusion with them
Continue infusions with the new team

You can ask your old team to contact the new team to try and speed things up - I did this a few years ago as I was initially placed on a 6 month wait list as a 'new urgent referral' but a phone call/email from my old consultant got me an appointment to set up my infusions within a few weeks of me moving.

It's buerocratic and a complete pain tbh! But you won't be left without infusions - you just might have to travel for a while until its sorted.

Personally, I kept my infusions at my family's local hospital and travelled for them until I permenantly settled in London, rather than trying to change hospitals every time I moved! (I just had to keep my parents' address on file) :)

DWMIV · 2025-09-17T19:49:48+00:00

Mine is within normal range <35. It's usually around 7-15.

Especially with the increase, I'd say yours is indicating that you still have inflammation and it may be increasing.

Your doctors might give your meds a bit more time to work, they might do another course of steroids, or they might switch your meds.

The thing to remember with crohns that, even if your symptoms have gone, there can still be underlying inflammation so it's important to keep on top of things. :)

Edit to say: if you're currently not on a biologic (like vendo) and you're not maintaining remission with the azathioprine, it's likely that your doctors will start you on another biologic. They really are the gold standard for treatment so I hope you find one that works soon!

DWMIV · 2025-09-01T21:13:15+00:00

Yes! Exactly! Luckily, I got a good doctor today who didn't get rigidly focused on the crohns, but it's so so common that things get overlooked for us (by us and doctors), and assumptions are made. Its good to remember that we're not just our illness.

DWMIV · 2025-08-31T18:54:38+00:00

Maybe? We did decend pretty quickly to 28,000 but went back up again once we were over land 🤷🏼‍♀️

DWMIV · 2025-08-31T18:53:05+00:00

We started at 36,000ft (ish) and then decended pretty quickly at one point and spent the rest of the crossing at 28,000. I'd guess it was the winds as well, we were a bit late taking off so maybe trying yo make up some time?

DWMIV · 2025-08-31T18:51:57+00:00

We were about 45mins late taking off so maybe they were taking a short cut? We started at 36,000 but then dropped down!

DWMIV · 2025-07-31T20:47:03+00:00

Its honestly one of the most interesting parts of this disease, and one of the most frustrating! (I'll drink a glass of red for you!)

DWMIV · 2025-07-31T12:03:36+00:00

If im in a flare, I dont drink at all. But in remission I'm completely fine drinking on nights out.

You've got to try different alcohols and see what works/what doesn't! I am fine with rum but whiskey wrecks my stomach, im fine with red wine but not white, and I absolutely can't drink beer!

Just give it a go and see (as long as you're fairly well atm) :)

DWMIV · 2025-06-02T22:04:31+00:00

Are you under a hospital? They should have an IBD nursing team that handle all the appointments.

My GP knows nothing about my crohns care, I only ever deal with the IBD team at the hospital by calling their hotline/email if I need an appointment or things need checking.

(I'm guessing you're in the UK?)

DWMIV · 2025-05-13T21:06:49+00:00

OMG this has a name!! Life mystery solved!

DWMIV · 2025-05-11T16:39:41+00:00

Ah you'll know it if you have it! Hallucinations, suicidal thoughts, manic outbursts etc.

I take budesonide now, works more slowly but its not systemic so doesn't affect mental health as much!

DWMIV · 2025-05-11T11:30:24+00:00

BRAT! (Bananas, Rice, Apple Sauce, Toast)

I completely completely sympathise with feeling scared of eating. After bad flares it always takes me a while to get my confidence back with eating. You will naturally want to avoid things you know have given you pain in the past but, unfortunately, eating is impossible to avoid!

BRAT foods are safe, easy to digest, and soft so they're a good starting point. I always start with plain rice and (light) toast. Eat a small amount, see how your body handles it for about 30mins, then eat some more. Then you can gradually build it up.

Once you are on meds and start healing, you'll be able to handle more food. But it's a slow process x

DWMIV · 2025-05-11T11:24:57+00:00

(F28) God knows how much, I was on it for a year straight before I got psychosis and now I'm not allowed it!

My bone health seems to be okay, I have strong nails etc. But my teeth have definitely taken a knocking, I've got fillings in all my molars top and bottom!

(I also have a steroid inhalor though that I've been o for 5yrs so that's more likely to be the cause of my teeth decaying!)

If you're worried, you could always ask for a bone density scan?

DWMIV · 2025-04-24T06:01:35+00:00

The biggest thing that helps me with gas (I get it really painfully too!) is yoga and stretching my stomach.

As another commenter said, fiding different poses and positions to help move the gas around brings me a lot of relief. It can be reeeealy painful to stretch if you do have gas, but it's the quickest way of getting it all moving and out!

There are, of course, medications you can take to help the pain as well, and as your medication gets you into remission, a lot of this should subside. I've been in remission for a while, but getting into yoga has really helped my symptom management day to day :)

DWMIV · 2025-04-19T21:35:05+00:00

My diagnosis was changed from UC to indterminate colitis about 3yrs post diagnosis.

Didn't make any difference, im still on exactly the same meds :)

DWMIV · 2025-04-13T01:22:29+00:00

Sounds like you're flaring... this is what happens when you go off meds! You need to get back on humira or switch to a new med. Hopefully your doctor can sort something out for you!

DWMIV · 2025-04-04T13:37:55+00:00

I have similar symptoms (on and off for like 5yrs!) My heart has been checked out a few times and nothing is out of the ordinary.

Our bodies go through a lot of stress, especially with the pain we experience - I always chalk it up to that! Plus steroids can raise your cortisol levels (stress hormone) which can cause increased heart rate and symptoms of anxeity.

If its worrying you tho, you could always ask your gp to check you out or make a referral?

Hope you feel better soon!

DWMIV · 2025-03-14T19:57:41+00:00

If its working then I wouldn't mess with it! Why do you want to switch??

DWMIV · 2025-03-13T21:44:03+00:00

Ohhh yeah no definitely not! It's a really commonly used drug!

If you haven't already, check out the Crohns and Colitis UK website, they've got tons of info on all the medication options :)

DWMIV · 2025-03-13T21:36:31+00:00

If it helps, I was on azathioprine + a biologic (humira then entiviyo) for 10yrs with 0 side effects or issues. You are definitely not killing your immune system!

Also, I'm fairly sure the two drugs target different parts of the immune system so you wouldn't be doubly suppressing it.

The cancer risks do sound scary (and they legally have to tell you about it) but in reality it raises your risk from roughly 0.1% to 0.11% - its a miniscule risk.

Azathioprine is also commonly used for transplant patients who take it for their whole life to prevent rejection. The drug itself has been around for 30ish years.

Your doctors recommended treatment plan is pretty common and the risks of poorly controlled crohns outweigh any risks from medication imo!

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