Crohns / ulcerative colitis sufferers

My biopsy came back as UC. I've been bleeding since March and still am. I was on 1.5g of Salofalk a day but now they're upping it to 3g (6 sachets a day) and I'm on Salofalk enemas for a month..woohoo!!!
 
I’m on day 6 of 40mg Pred now and so far it has had no effect. Before it has worked within a couple of days but not this time. Speaking to the Nurse on Wednesday see what else they can try....
 
jacksgotbones said:
My biopsy came back as UC. I've been bleeding since March and still am. I was on 1.5g of Salofalk a day but now they're upping it to 3g (6 sachets a day) and I'm on Salofalk enemas for a month..woohoo!!!
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Yikes, just one thing that is slightly reassuring - it usually looks much worse than it it... just a tiny amount of blood can seem like quite a lot if the water in the bog turns red-ish/pink.

One thing to keep in mind if you are losing small amounts of blood over time is to think about your iron intake. Could be worth speaking to a dietitian (not a nutritionist). They may suggest eating some foods rich in iron etc... (liver is great as it helps with b12 too if you're also on PPIs).

Alternatively you can end up taking iron tablets when your blood tests show a deficiency - these aren't so fun for some people and can cause a bit of abdominal discomfort.
 
bum cams :D

fortunately I pretty much zoned out when under sedation the last time I had to have one of those, well I vaguely recall getting to watch the first part on the monitor, which was rather surreal then the next thing I remember I had been wheeled back to my room and the nice Irish nurse was waking me up
 
The best bit about the cam is the brew and toast afterwards. My best is about 6 brews and 4 slices of toast...... lol....

My recent one was only a sigmoid which was all over in about 10 mins and only a quick brew afterwards.

I do like a nice cuppa, toast and a chat after the camera......
 
Anyone tried meal replacement drinks?

I've got to be careful with fibre though these things mostly contain soluble fibre (AFAIK) so could well be OK - anyway I saw something in the news about a UK approved version of Soylent being available recently so thought I'd order it plus a batch of Huel and another random brand that came up on Amazon. If anyone has any other suggestions for ones to try then please let me know - I did try slimfast shakes once before when on a flare (and I still have some tubs of that stuff left), I've also grabbed the odd Nurishment milkshake for breakfast from a newsagents when in a rush though I'm not sure that is quite comparable.

Anyway these arrived today:

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I think I'm going to just replace one or two meals with one of these things and tbh.. I'm not a fan of wasting plastic bottles so I guess I'm already predisposed to using Huel if it works out (or perhaps slimfast on occasions to mix it up a bit). I still intend to have at least one if not two proper meals per day with plenty of veg and things like fish, liver or lean meats - chicken/turkey etc...

Reason for the meal replacement shakes is it is something that could be switched onto for all meals temporarily if having a bad few days (assuming these things don't further irritate the gut) and it is useful for breakfast too. Potentially useful for lunch every so often, I try to avoid both bread and salad and though I'm a big fan of sushi and some of the deli stuff from M&S I'm not going to eat it every day.
 
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.
 
Just been admitted to hospital as my oral steroids have had no luck. Looking at Iv steroids and biologics over the weekend. Tbh I wish they would just take the lot out...

Hospital is nice and staff are really friendly and have given me access to the brew kit when I like. Even have my own room....
 
chipperhead said:
I appreciate your probably just venting but I had my colon removed and JPouch reconstruction, to say it's not ideal would be an understatement.
I'd treat surgery as the last option.
Hang in there partner :)
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Cheers mate I think you just get a bit fed up after a while.

Bloods have just come back fine so steroids have done more than I thought as I was showing high inflammation and wonky platelets at last test.

Will see what they decide is the best route of action.
 
Escaped hospital yesterday after 3 days of high does iv steroids now tapering on pred tabs again. I’m not right it’s not totally under control so have had a big discussion with the Ibd nurse and consultant about starting a biological treatment in the next couple of weeks. I’m more looking into Infliximab as I know people who have had good results with it but need to sit and have a good think once my head has cleared up a bit.

Missed my cornflakes, toast and brew this morning. I loved the hospital food.... lol
 
dirtychinchilla said:
I've found infliximab very effective. My body had reduced its reaction to azithioprine, so they put me onto biologicals as well, and all is good so far.
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Great to hear mate. I had a bad time with aza it made me quite ill. I’m pretty sure Infliximab is the way I’m going as long as all tests, x rays come back ok.
 
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