Crohns / ulcerative colitis sufferers

MOOGLEYS said:
During my 2016 flare I pretty much replaced all solid food with Ensure Plus drinks. I was prescribed them by my Consultant. Tbh I’m close to maybe trying them again now as at the moment the Steroids are not working and my body is struggling to handle anything solid.
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I'll give them a go, thanks. I've tried (briefly) some of the Soylent and Saturo so far, no immediate bad reactions... aside from Sunday - though stupidly I also had some food with nuts etc.. and that could have been what caused the blockage/backlog... was up all night around the toilet vomiting/feeling rather bloated etc.. and in a lot of pain. I'm going to give them a miss for a few days and then start trying again albeit being very careful re: what regular food I eat too as, if I get problems again, I'd like to know for sure whether it is the meal replacement. I've not tried the Huel yet, will give that a go in the next couple of weeks along with the Ensure Plus drinks you've had.

Re: infliximab - I'm on that at the moment and it seems to be working OK. edit - no I'm not, I thought for some reason that was the other name for Humira.... I'm on Humira(adalimumab) - which I self inject at home
 
The consultant said I was bunged up which showed on my X Ray. I was given Movicol 3x a day which made a huge difference. It’s weird as although I was going more I was not passing properly and the Movicol helped things along going less but passing more. 2nd X Ray showed I was clear again....
 
Every time I've had a flare or a worsening of symptoms, it causes constipation rather than diarrhea. I only tend to flare right at the bottom of my colon / rectum so all my **** forms as normal and then gets stuck behind the inflammation.

It's a pain as like you, I end up going to the loo loads but never pass anything. It took me years to realise it was constipation as you don't tend to think it's possible with colitis. I hope the moviprep helps! I tend to take some fybrogel or similar when I have trouble and it does seem to improve things.
 
MOOGLEYS said:
I like a colonoscopy best feels like it’s going to come out your mouth...... lol....

At my last the Consultant said I had nothing to fear as he was a “Butt Cam Jedi”.....
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My consultants a plainly spoken man who tells it like it is by warning you up front he's going to give your arse a damn good ramrodding. :p
 
Stay strong guys

I like the humour in this thread.. Helps to keep things lighthearted sometimes.

I'm hoping I can make 12 months OFF the Pred....I bought a house 3 years ago and haven't been able to up my life insurance... Previous policies almost cover it but I'd rather have a nice new one too.

Chin up lads!!
 
I’m off today to pick up my pack up. Although it’s seeming oral high dose pred is not able to keep me under control anymore as I’m starting to cramp and bleed again.

I was on 800mg Hydrocortisone in hospital by iv. 40mg of pred is hardly a comparison....lol

Will give it a few days see if it settles but I’m thinking I might be back in Hospital later this week..... Yipeeeee......

Hopefully they will get me started on the Infliximab and try and get me under control. I’m so tempted just to get the lot removed and a bag fitted tbh......
 
mattyg said:
Stay strong guys

I like the humour in this thread.. Helps to keep things lighthearted sometimes.

I'm hoping I can make 12 months OFF the Pred....I bought a house 3 years ago and haven't been able to up my life insurance... Previous policies almost cover it but I'd rather have a nice new one too.

Chin up lads!!
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I think you need a sense of humour with this disease it helps me get through. Years ago one of my old bosses said “No matter how bad something is if you can turn it into a joke and laugh about it then it has not beaten you yet” I try and do this even though sometimes it’s hard.....
 
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jacksgotbones said:
I went to the pharmacy yesterday and picked up a month's supply for Salofalk granules, enemas and rectal foam.... Wickedddddd!
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That's where you almost want to be stopped and searched by the police:

Officer: What do you have here then

You: Oh not much officer, just some granules, enemas and rectal foam

Officer: raises his eyebrows

You: look, it's just my medication... :D
 
Are you guys also paying silly money when it comes to travel insurance with declared medical conditions?

3 week holiday to Mauritius to visit family = £30 + £35 crohns cover.

An annual worldwide policy is £170ish if excluding North America, Carribean, etc, or £300+ if the latter are included.

Admittedly I'm going through some investigations atm, and things have been up and down this year. In past years, when I was more stable, if was a bit more affordable. In the grand scheme of things, it's the price to pay for peace of mind should something happen.
 
Sorry I don't know the answer about the travel insurance. I just assume that as my bank gives me travel insurance, and they never asked for any medical details, I'm covered. Maybe I'll check before going on holiday next.

On another note, I had a seton put into a fistula (and out my butt hole) at the start of September. I was drying myself after a shower, perhaps slightly more aggressively than is strictly necessary, and it came out! I thought it was hilarious...wife went into panic mode, but I think they're designed for a limited lifetime and I'm very relieved to have that thing gone.
 
wingman said:
Came off medication (Pentasa Mesalalzine, one 500mg tablet daily) five days ago for the first time in 17 years (which was when I started).

Probably a stupid idea but my main, annual appointment has been pushed back from August to December this year for no apparent reason. This was when I was going to discuss coming off meds. So far I've been fine, not sure how long it'll last.

To recap, I came off gluten in November last year and all my symptoms dissapeared.
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Update on this.

I'm now three months off medication, and despite two very small flares (one when visiting Barcelona for a few days, which I attribute to the change in water, and one with a cold), I've been better than ever. I call them flares, but my partner had the same symptoms in both scenarios, and she doesn't suffer from IBD, so I think that those two were independent from my UC.

I have my annual appointment in December. I'm a little nervous to tell the doctor I'm off medication, even though I feel much better for it.

DB_SamX said:
Are you guys also paying silly money when it comes to travel insurance with declared medical conditions?

3 week holiday to Mauritius to visit family = £30 + £35 crohns cover.

An annual worldwide policy is £170ish if excluding North America, Carribean, etc, or £300+ if the latter are included.

Admittedly I'm going through some investigations atm, and things have been up and down this year. In past years, when I was more stable, if was a bit more affordable. In the grand scheme of things, it's the price to pay for peace of mind should something happen.
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I have slightly increased premiums for UC, nothing drastic.
 
wingman said:
Update on this.

I'm now three months off medication, and despite two very small flares (one when visiting Barcelona for a few days, which I attribute to the change in water, and one with a cold), I've been better than ever. I call them flares, but my partner had the same symptoms in both scenarios, and she doesn't suffer from IBD, so I think that those two were independent from my UC.

I have my annual appointment in December. I'm a little nervous to tell the doctor I'm off medication, even though I feel much better for it.
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Good for you!!
 
dirtychinchilla said:
Sorry I don't know the answer about the travel insurance. I just assume that as my bank gives me travel insurance, and they never asked for any medical details, I'm covered. Maybe I'll check before going on holiday next.

On another note, I had a seton put into a fistula (and out my butt hole) at the start of September. I was drying myself after a shower, perhaps slightly more aggressively than is strictly necessary, and it came out! I thought it was hilarious...wife went into panic mode, but I think they're designed for a limited lifetime and I'm very relieved to have that thing gone.
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Worth double checking the terms just to be sure.

A seton is a knotted loop....I've got two, the first having been installed over 10 years ago! How could it have come out or loose? Are you going to see if they'll replace it? My first one lasted 5 years, and got replaced during a routine EUA. (A discussion for another day maybe but setons...sigh...what a change in lifestyle.)

mattyg said:
Travel Insurance:

I get covered at no additional cost with my Bank (barclays)

Yes I've checked and Have it confirmed in writing.
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THat's good. Will have to investigate if it's worth getting an account. I am with barclays, but just a standard current account with no benefits afaik.
 
dirtychinchilla said:
Sorry I don't know the answer about the travel insurance. I just assume that as my bank gives me travel insurance, and they never asked for any medical details, I'm covered. Maybe I'll check before going on holiday next.
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I'd definitely check that, quite likely you do need to let them know. Check all the other conditions too, some bank policies are a bit funny.

mattyg said:
Travel Insurance:

I get covered at no additional cost with my Bank (barclays)

Yes I've checked and Have it confirmed in writing.
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That is good to know, I might check them out - was quoted some ridiculous figure of circa £400 by Tesco for a single trip to the US! Perhaps I should look into a Barclays account.
 
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