Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
Diverticular disease is a funny one, that's the one with pockets in your bowel correct? And then infections in those pockets is the diverticulitis?
I believe they treat it mainly with diet and paracetamol, and some people take Fibergel. Hope you feel better chum.
Soldato
That's me just over 15 years with a J Pouch. I have been lucky (touch wood) that it has been fine. Had one minor bout of pouchitis 6 years ago
Soldato
Nice! I've heard so many horror storied about j pouch failure that having it done scares me. I'm 7 weeks post ileostomy surgery and I'm quite 'enjoying' life with a bag. It's so liberating being able to go anywhere without having to worry about where the nearest toilet is and I don't want to have j pouch surgery and end up back where I was prior to surgery.
Can I ask, how often do you go to the loo and can you hold it if necessary?
In case anyone was wondering about discussing their treatment with their gastro consultant at next appointment - this is some current guidance:
https://www.ioibd.org/ioibd-update-...s-with-crohns-disease-and-ulcerative-colitis/
https://www.ioibd.org/ioibd-update-...s-with-crohns-disease-and-ulcerative-colitis/
Soldato
I'm glad that I refused azathioprine and biologic drugs years ago. It's worrying enough as it is having IBD with corona virus about.
I'm only 9 weeks post surgery so I have no idea what my immune system is like at present.
I'm only 9 weeks post surgery so I have no idea what my immune system is like at present.
Might depend what/if other meds you are on. I was told everything would be out of whack for about a month and healing would take 12-18 months.
I've been fortunate to be off medication for almost 18 months now, but I hope everyone out there with IBD is doing their best to stay positive and putting themselves in as safe an environment as possible.
Every time I hear/read about "elderly and those with underlying conditions" I get a little more triggered, though...
Every time I hear/read about "elderly and those with underlying conditions" I get a little more triggered, though...
Soldato
I'm off all meds now thankfully. Have been off pred for 3 weeks now so I hope my immune system has kicked in properly.
I hope you're doing well!
Great your off the meds mate well done. I would just play it safe as per guidelines and I’m sure you will be fine.
I’m doing ok getting of the Pred slowly but at least it’s coming down without too many side effects.
cheers
Soldato
My sumptons and CRP have been low last few months so the doc recommended I reduce gradually my Methotrexatea dose from 10mg a week by say 2.5mg every couple of months.
On a Covid note, do you chaps usually feel worse flus/colds/chest infections due to immunosuppressant? Whilst I've had the odd terrible bout in the last few years (maybe because I never got the flu jab until this winter), it's not been regular problem. So I am in the dark as to whether Covid would put me in a lot of trouble if caught.
On a Covid note, do you chaps usually feel worse flus/colds/chest infections due to immunosuppressant? Whilst I've had the odd terrible bout in the last few years (maybe because I never got the flu jab until this winter), it's not been regular problem. So I am in the dark as to whether Covid would put me in a lot of trouble if caught.
Awesome news about your symptoms and inflammatory markers fella!
As for colds etc, I'm supposed to be at much greater risk, though I'm on Vedolizumab these days which is apparently better side effect / risk wise vs m Infliximab or Adulimumab for that. Not sure about Azathioprine.
It may be because I'm careful, but it's very rare for me to pick up anything at all. Still, I've taken a number of measures which I hope will prevent me from finding out just how bad it could be.
We have pre-existing conditions (some of us bloody loads of them) so in my opinion it's better to play it safe. I've had enough near misses, and spent enough time in hospital, to know it's better to be inconvenienced than run the risk of being gravely ill, or even croaking it.
With a compromised immune systems and pre-existing chronic medical conditions, there's no way you'll find me socialising, or out at all, unless I absolutely have to.
Besides, with the Mrs on Amber Alert and decontaminating anything that crosses the threshold, I don't think I'd have much choice in the matter anyway.
Last edited:
Soldato
We have pre-existing conditions (some of us bloody loads of them) so in my opinion it's better to play it safe. I've had enough near misses, and spent enough time in hospital, to know it's better to be inconvenienced than run the risk of being gravely ill, or even croaking it.
With a compromised immune systems and pre-existing chronic medical conditions, there's no way you'll find me socialising, or out at all, unless I absolutely have to.
I'm exactly the same. Feels like I'm being paranoid, but I'd rather be safe than sorry. Tbh as an introvert, being in a bit of solitude appeals to me anyway.
IBD alone can lower your immune system as your body is fighting itself with the condition. I think the general consensus is play it safe if you have any form of IBD regardless of medication. Up the hand washing and avoid gatherings or known ill people. The general guidance at the moment pretty much.
I wouldn’t do anything without talking to your care team first. Last thing you want is a flare up due to cutting back your meds and end up in a worse situation.
Permabanned
Boys been on Amjevita(I think) pen injections things for a few weeks. Dont think his immune system is suppressed yet going by the last load of bloods. The hospital didnt seem particularly worried, though he is 12 and in a pretty low risk category for Corona. Still a worry of course. 
This wouldn't be something we can discuss, it would break forum rules and could get the thread closed.
Speak to your consultant or care team.
There is a link with some advice above - general advice is basically stay on them/follow advice of doctors... (you don't want a flare up when hospitals are already overrun)
the risk factors with this new virus seems to be things like heart disease, respiratory issues, diabetes and cancer... the various articles I've seen don't mention IBD, obvs we know we've got a slightly lower immune system when taking various meds for IBD.