Crohns / ulcerative colitis sufferers

Teknobry · 10 Jun 2024 at 22:07

dirtychinchilla said:
Laparoscopic (hopefully)

My Mrs has been through it, to have a chance of doing the gig you're going to have to fully devote every bit of time before the gig to rest & recovery. It's quite a traumatic thing for your body to go through.
Get good advice about diet following the surgery, be careful of your fibre intake.
You'll just have to see how you get on.

dirtychinchilla · 11 Jun 2024 at 08:38

Teknobry said:
My Mrs has been through it, to have a chance of doing the gig you're going to have to fully devote every bit of time before the gig to rest & recovery. It's quite a traumatic thing for your body to go through.
Get good advice about diet following the surgery, be careful of your fibre intake.
You'll just have to see how you get on.

Thanks very much! How’s your wife getting on?

I think I’ll probably have to find someone to stand in for me. That’s proving difficult though!

DB_SamX · 11 Jun 2024 at 08:39

https://crohnsandcolitis.org.uk/new...ause-of-inflammatory-bowel-disease-discovered

This was big news in the media last week; a big step in the right direction!

robgmun · 11 Jun 2024 at 10:45

robgmun said:
That's the worst part of it, thankfully over the years it's become less and less often, but on really bad days I barely have minutes to get to a toilet and often I could be a couple of feet away after struggling to get to a toilet for several minutes and it's still too late because I couldn't hold it for a few seconds more.

Unfortunately, last Friday this happened again, not sure if I ate something bad but I was trying to travel home from work, stuck on a train for 15mins trying to get to the next station with a loo, managed to get to the loo, but couldn't sit down on the toilet quick enough before an accident. Why can't I hold it in for the last few seconds? :mad:

Teknobry · 11 Jun 2024 at 20:51

dirtychinchilla said:
Thanks very much! How’s your wife getting on?

I think I’ll probably have to find someone to stand in for me. That’s proving difficult though!

Long battle for her, had Crohn's since she was a kid. Got AS to deal with now as well so currently on two biologics. All things considering she's doing well. She's certainly tough I'll give her that.

dirtychinchilla · 12 Jun 2024 at 13:33

robgmun said:
Unfortunately, last Friday this happened again, not sure if I ate something bad but I was trying to travel home from work, stuck on a train for 15mins trying to get to the next station with a loo, managed to get to the loo, but couldn't sit down on the toilet quick enough before an accident. Why can't I hold it in for the last few seconds?

Sorry to hear that. It's definitely a mental thing, like you can almost relax and you can tell your body, wait 5 more seconds, and then sitting down adds a second more than your body was expecting.

Teknobry said:
Long battle for her, had Crohn's since she was a kid. Got AS to deal with now as well so currently on two biologics. All things considering she's doing well. She's certainly tough I'll give her that.

Sorry to hear that. I hope she's able to manage the ****.

dowie · 12 Jun 2024 at 16:14

dirtychinchilla said:
I have finally got a date for my bowel resection - 60 cm of it coming out on the 24th June.

For those that have had this procedure, what's the recovery like? I wasn't that fussed, but I'm supposed to play a gig for charity on the 12th July. I play bass, I could definitely just sit in a chair and play. Do you think this would be difficult or achievable?

Totally doable, you could be out of hospital by the Friday if they're doing the Enhanced Recovery thing and then 2 weeks after that you'll have the gig - the fit note is for 2 weeks IIRC. Obvs don't expect to be going running or dancing around or carrying heavy music equipment but you can certainly walk, stand etc.. perhaps a chair is sensible for a long gig though.

dirtychinchilla · 12 Jun 2024 at 20:25

dowie said:
Totally doable, you could be out of hospital by the Friday if they're doing the Enhanced Recovery thing and then 2 weeks after that you'll have the gig - the fit note is for 2 weeks IIRC. Obvs don't expect to be going running or dancing around or carrying heavy music equipment but you can certainly walk, stand etc.. perhaps a chair is sensible for a long gig though.

Sadly, I've decided it's best not to risk it and we've got someone standing in on bass. Thank you, though.

firstborn · 12 Jun 2024 at 21:17

Flexi sigmoidoscopy for in a few days, rather disappointed I miss out on the full colonoscopy

dirtychinchilla · Sunday at 15:09

I had my ileocecal bowel surgery last Monday, so I’m about six days out now. They took about 30 cm from my small intestine and didn’t have to touch the large, which is nice.

Recovery is going well I think. The first five days weren’t great. The worst thing has been the recovery from the cuts through the abdominal muscles, but today they’ve really not been hurting. Also, the antibiotics haven’t particularly agreed with me.

So, hopefully in about a week I’ll feel much better. I’m really, really looking forward to a pizza, a burger, a kebab, a curry, etc having been on a probably 50% liquid diet for the past three months.

dowie · Sunday at 15:14

dirtychinchilla said:
I had my ileocecal bowel surgery last Monday, so I’m about six days out now. They took about 30 cm from my small intestine and didn’t have to touch the large, which is nice.

Recovery is going well I think. The first five days weren’t great.

Did they do the "enhanced recovery" thing at your hospital? You get an "enhanced recovery nurse" come around to your bedside each morning to get you up and moving a bit, sitting in the chair etc.. force you to go for a walk around the ward from the day after the operation. It's supposed to slash the hospital stay by a couple of days or something.

robfosters · Sunday at 16:41

dirtychinchilla said:
I’m really, really looking forward to a pizza, a burger, a kebab, a curry, etc having been on a probably 50% liquid diet for the past three months.

Thats a bloody big dinner!

dirtychinchilla · Sunday at 19:38

dowie said:
Did they do the "enhanced recovery" thing at your hospital? You get an "enhanced recovery nurse" come around to your bedside each morning to get you up and moving a bit, sitting in the chair etc.. force you to go for a walk around the ward from the day after the operation. It's supposed to slash the hospital stay by a couple of days or something.

They did indeed. I was only there for three days but she was good. She got me out of bed on day two and then I was up and down like a fiddler’s elbow, mainly trying to get the gas out to be honest!

robfosters said:
Thats a bloody big dinner!

Very!

dowie · Sunday at 19:39

dirtychinchilla said:
Very!

I'm not sure if you meant to reply to me but you've just quoted my message and left a blank?

dirtychinchilla · Sunday at 19:40

dowie said:
I'm not sure if you meant to reply to me but you've just quoted my message and left a blank?

It was indeed an accident. I just replied to you

matthewhotdude · Monday at 08:13

Currently in hospital again after being in for 2 weeks in April and eventually put on Infliximab, which seems to be failing hence being back in and on IV Steroids again, Shall see what the consultant says today. Probably the surgery route, as it was heading that way back in April before we tried the infliximab.

robfosters · Monday at 14:07

matthewhotdude said:
Currently in hospital again after being in for 2 weeks in April and eventually put on Infliximab, which seems to be failing hence being back in and on IV Steroids again, Shall see what the consultant says today. Probably the surgery route, as it was heading that way back in April before we tried the infliximab.

Damn, that’s sad news. Hope the doc has better news for you and sorts you out soon

dirtychinchilla · Monday at 21:44

matthewhotdude said:
Currently in hospital again after being in for 2 weeks in April and eventually put on Infliximab, which seems to be failing hence being back in and on IV Steroids again, Shall see what the consultant says today. Probably the surgery route, as it was heading that way back in April before we tried the infliximab.

Good luck

matthewhotdude · 2024-07-02T07:39:43+0100

Well I was on IV Steroids since Thursday which calmed things down greatly, Switched to oral steroids yesterday and last night I nearly didn't get to the toilet on time. Just when it seems to be showing an improvement it seems to always go backwards. And now they're unsure if its UC I have or Crohns, as my last CT scan showed inflammation in the small intestine too!

So waiting to have an MRI scan at some point this week

DanTheMan · 2024-07-02T08:04:09+0100

matthewhotdude said:
Well I was on IV Steroids since Thursday which calmed things down greatly, Switched to oral steroids yesterday and last night I nearly didn't get to the toilet on time. Just when it seems to be showing an improvement it seems to always go backwards. And now they're unsure if its UC I have or Crohns, as my last CT scan showed inflammation in the small intestine too!

So waiting to have an MRI scan at some point this week

If it's any consolation, I had ileostomy surgery for UC in 2020 and after the initial shock, I genuinely wish I'd had it 10 years before.

It has its moments but it's so freeing not having to worry about where the nearest toilet is. I didn't realise how id compromised my life in so many ways because of UC, until I no longer had the urgency and worry any more.