Soldato
- Joined
- 7 Feb 2004
- Posts
- 3,072
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.
Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
Does it tend to be bright red blood with UC?
Soldato
Yeah mainly fresh red blood for me as the bleeding was low down in the intestine.
Soldato
- Joined
- 25 Nov 2005
- Posts
- 12,640
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
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'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
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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
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
Does help to laugh about it.
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Caporegime
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 moviesMy 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
Does help to laugh about it.
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Soldato
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.
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.
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
That sounds dreadful, matty. Sorry to hear (read) all that.
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!
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!
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
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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
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.
Soldato
Morning all,
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? I know it really depends on the person, but I need to get a gauge of whether it's completely unrealistic or not.
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? I know it really depends on the person, but I need to get a gauge of whether it's completely unrealistic or not.
Associate
Laparoscopic or open?
Soldato
Laparoscopic (hopefully)
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