Crohns / ulcerative colitis sufferers

Soldato
Joined
25 Nov 2005
Posts
12,463
If it’s ok to ask, can you guys with UC tell me what your symptoms are please. I appreciate it can be a bit crude and personal, but we’re all friends here
My symptoms are just stomach pain, usually it's managable pain, like when you feel really hungry, now I know what the signs are, I know not to eat much when I'm like this but before I knew what I had I would mistakenly eat, which would make things worse to the point it feels like somebody has their hands inside you and are twisting your intestines and then lots of vomiting then back to normality a day or 2 later
 
Associate
Joined
18 Nov 2010
Posts
489
Hi people

I've been getting stomach pains since early December (lower left pain and right side under ribs) and major cramping. I've had bloods done (fine) ultrasound (fine) endoscopy showed gastritis and hiatal hernia and I've recently had a CT scan which showed thickening of the sigmoid colon.

And that leads onto a colonoscopy which I'm probably going to have to wait around a month or more for, pretty sure I have some form of colitis at this point, I've also had little streaks of blood in poo but not much diarrhea.

Wish there was something I could take for pain/cramping but guessing I'll have to wait till I'm officially diagnosed.
 
Soldato
Joined
12 Jun 2003
Posts
3,946
Hi people

I've been getting stomach pains since early December (lower left pain and right side under ribs) and major cramping. I've had bloods done (fine) ultrasound (fine) endoscopy showed gastritis and hiatal hernia and I've recently had a CT scan which showed thickening of the sigmoid colon.

And that leads onto a colonoscopy which I'm probably going to have to wait around a month or more for, pretty sure I have some form of colitis at this point, I've also had little streaks of blood in poo but not much diarrhea.

Wish there was something I could take for pain/cramping but guessing I'll have to wait till I'm officially diagnosed.
I had bad cramping in the areas of inflammation, once I had biposies from colonoscopy and told me it was crohns, they started me on Prednisolone steroids. After a couple of days my symptoms went away. After I finished those they put me on Azathiprine, and so far so good
 
Last edited:
Soldato
Joined
30 Apr 2006
Posts
17,964
Location
London
Mine was going to the toilet 20+ times a day with urgency that bad, I could be in the next room and still not make it.
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.
 
Soldato
Joined
18 Oct 2002
Posts
3,557
Location
Nottingham
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.
My chemo is still giving me grief. I sometimes get a 10 second warning, leg it to the toilet (work) drop the pants and sit only to realise in my panic somebody left the lid down! Oops :D

Does help to laugh about it.
 
Last edited:
Caporegime
Joined
1 Dec 2010
Posts
52,509
Location
Welling, London
My chemo is still giving me grief. I sometimes get a 10 second warning, leg it to the toilet (work) drop the pants and sit only to realise in my panic somebody left the lid down! Oops :D

Does help to laugh about it.
Last week I had a bit of diarrhoea. I suddenly got the urge to go so dashed to the toilet, dropped my drawers, sat down only to realise too late that someone had left the seat up, so promptly disappeared halfway down the toilet. Managed to scramble out like one of those Ghoulies that come out of the toilet in the 80’s movies :cry:
 
Last edited:

VoG

VoG

Soldato
Joined
20 Jan 2004
Posts
5,874
Location
Nottingham
If it’s ok to ask, can you guys with UC tell me what your symptoms are please. I appreciate it can be a bit crude and personal, but we’re all friends here
At its worst going to the loo upto 20 times a day, passing blood, anemia, chronic fatigue, dizzyness & feeling faint, rapid weight loss, & pain/discomfort in my lower abdomen.
 
Soldato
Joined
17 Jun 2007
Posts
9,309
Mine started with frequent movements. I was always a 3 times a day person. Regular as clockwork. My system seems to take 13 hours from entry to exit.
This started to get more and more frequent. But very small movements. But i could go to the toilet and turn around on the way back down stairs to go back up again. This could happen 3-4 times on the go before maybe an hour or so break.

Then these movements started to happen at night (waking me up) which is a big signal somethings not right.

I went to the Dr's who said its probably piles (He saw I was looking worried as I had research UC and he said its very unlikely to be that) So then I'm trying every pile treatment under the sun. Cue another 6 months of getting worse and worse. Finally saw another GP. Whilst in the waiting room I went to the toilet twice (The actual toilet) This GP was much more receptive. And sent me for a Sigmoid.
When the nurse says oh dear you must be really suffering when looking at the screen you know theyve seen something.
3 days later and I'm feeling 99% like normal Thank you magic Pred. However, I seem to have dropped off someones radar as i was on pred for nearly 6 months at full whack. So that was a hard comedown. I think i had 3 rebound flares trying to come off that.

That got me about 18 months in remission. Since then I can get about the same 18 months'ish between flares. But they try to treat with anything other than Pred so I can go 12 months of treatment that doens't seem to do anything, Whilst knowing that Pred will have me back to normal within a week.....

So from the start I'd been on Asacol and that worked until the IBD nurse suggested lowering the dose to the maintainance level.... That caused a flare up within 2 weeks. So then back up to full dose and AZA got added... Then Allopurinol as the AZA wasn't doing what it should.. Now i'm on 75mg Aza and allopurinol to shunt it into working properly but that still isn't doing what we want.

Which is were we are now. Urgency, lots of very close calls. Some accidents. And a ****** haemorrhoid now which is probably not helping with the urgency

In two days I'm having my first Infusion. I've just cancelled my holiday as I have an Infusion thurs (week 0) then in two weeks (week 2) then in 6 weeks (week 6) which happens to fall on my 50th which was meant to be in a Villa in Italy after a road trip...

So might try and squeeze it in between week 2 and 6. But getting better, Getting back into the marital bed and getting back to my normal self is more important.
 
Soldato
Joined
2 May 2011
Posts
11,906
Location
Woking
That sounds dreadful, matty. Sorry to hear (read) all that.

Getting back into the marital bed and getting back to my normal self is more important.

This is so important. I haven't slept in the same bed as my wife for months. I had a flare late last year which also coincided with a slipped disk. I couldn't sleep in the same bed as her. To be frank, she would have needed a gas mask. Now I'm feeling a bit better, although I have surgery pending, but sciatica makes it a nightmare to sleep anywhere other than on my own, and even then it can be hard. Good luck with it!
 
Soldato
Joined
17 Jun 2007
Posts
9,309
Well today didn't go as planned. BP to high to have the infusion as they dont know if it would send me higher or lower as its the first... Told them I get white coat syndrome.... Oh well back on Tuesday... At least I wont be having one on my birthday now..
 
Caporegime
Joined
1 Dec 2010
Posts
52,509
Location
Welling, London
Well today didn't go as planned. BP to high to have the infusion as they dont know if it would send me higher or lower as its the first... Told them I get white coat syndrome.... Oh well back on Tuesday... At least I wont be having one on my birthday now..
That’s a pain in the butt (no pun intended)

What’s the infusion you have?
 
Last edited:
Soldato
Joined
17 Jun 2007
Posts
9,309
That’s a pain in the butt (no pun intended)

What’s the infusion you have?
infliximab.

So going to make sure I have a chilled weekend (as much as I can with us putting on a small music event) Avoid salt and sugar over the weekend too and drink lots more water..
 
Soldato
Joined
17 Feb 2006
Posts
8,878
Location
Winchester
Hi people

I've been getting stomach pains since early December (lower left pain and right side under ribs) and major cramping. I've had bloods done (fine) ultrasound (fine) endoscopy showed gastritis and hiatal hernia and I've recently had a CT scan which showed thickening of the sigmoid colon.

And that leads onto a colonoscopy which I'm probably going to have to wait around a month or more for, pretty sure I have some form of colitis at this point, I've also had little streaks of blood in poo but not much diarrhea.

Wish there was something I could take for pain/cramping but guessing I'll have to wait till I'm officially diagnosed.
Ask your GP or doctor if Buscopan Cramps could help. I've taken it before, albeit not for my Crohn's, and it helped reducing cramps.
 
Back
Top Bottom