Crohns / ulcerative colitis sufferers

yeah certainly noisy, unlike the one I had on my knee a few years ago I didn't get a choice of music but rather instructions on when to breath in, hold breath, breath out etc..
 
I was surprised how loud it was tbh. I had the Radio in the headphones but it was still loud. I could also feel my lower regions getting warm which is apparently normal.... lol
 
I had music at my last mri, could still here it though.

Did not realise we had a Crohns/Colitis thread.

I am currently 3 weeks post proctectomy, I have forgot what sitting down comfortably feels like!
 
Manbatius said:
I had music at my last mri, could still here it though.

Did not realise we had a Crohns/Colitis thread.

I am currently 3 weeks post proctectomy, I have forgot what sitting down comfortably feels like!
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I had to google that........Wished I hadn't done an image search.....

Are you on the mend now?

Is that it done/Cured/etc
 
Got it a few years ago, emergency camera up my bum, ow dear from all the nurses, everywhere the camera went was inflamed, now take a butt load of pills a day and i'm just trying to live my life, the toilet issues don't bother me I struggle more with how it effects the rest of my life.

Work dropped me like a brick when it started, I wasnt on the ball with what was going on, I thought I had colon cancer and didnt care much anyway. I'd say i'm ok now though on my tablets and I'm looking at a new career starting in 2 years time, 1 year for work exp 1 year at uni then I should be set.

My problems are relationships, i've dated girls and then told em my troubles, it's never gone well, a girl-friend said to not tell girls until we get serious, would feel lile lying and stringing a girl on tho, so just short term flings for the last few years. Not sure I want to settle down, and I don't know about kids because I'd feel awful having a kid and them having troubles like this too, tho doc's say its not hereditary, but I would have to come off some of my meds for a minimum of 6 months before getting a girl pregnant anyway.

I have yearly colonoscopies, well I am sposed to and have had them yearly so far due to my high cancer risk, this year they aren't giving me one, not sure how much to push this though, drinking the laxatives is, well I cannot find the words, I just stick to the diet before hand and have 1 dose of it, for last 2 years I have gotten a well done you obviously took all your laxative, yep :E

Just started reading this thread, read up this page and part way down page 1, makes me wanna cry what you all are going through, I've avoided meeting others with this in real life, I don't want to see people doing better than me, nor do I want to see people doing worse.

I also have a dodgey liver coupled with the pancolitis, not sure which will kill me first or if sommot else will get me :p
 
mattyg said:
I had to google that........Wished I hadn't done an image search.....

Are you on the mend now?

Is that it done/Cured/etc
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Bad plan on image search, I should have mentioned not to google!

All abdominal stuff is well on the mend, luckily had keyhole, the other wound it not so great, had a set back due to a fluid build up.

Yep cured, all large bowel gone now, had most of it out in 2005, was just a small bit remaining, what they removed was very flared up with colitis.
 
been reading through this and man i feel for you guys...
i suffered from acid reflux for years not in the same league as you chaps but still painful
was wondering what diets do you guys have?
 
pooley said:
been reading through this and man i feel for you guys...
i suffered from acid reflux for years not in the same league as you chaps but still painful
was wondering what diets do you guys have?
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Its not connected to diet...Unfortunately. The only connection to diet really is during a flair up. An analogy would be sunburn. Your skin doesn't hurt to touch normally but when its sunburnt (flair up) it does. So when your not flairing your guts are ok. But during a flair it can be irritated by diet.

Chances are more so with a healthy diet (fibre etc (like sandpaper))

Its an auto immune disease. Basically your body is fighting an inflammation which in turn makes the inflammation worse. Which your body then fights and so on.....

Not only that.

Its also different for everyone. Some people have issues drinking water during a flair for gods sake..

Although I higher number of Ex smokers have this disease.....But they don't recommend starting smoking to alleviate symptoms.

Not seen a study about weed and IBD yet though....Not looked either
 
pooley said:
so what's causing the inflammation something must be?
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The cause is still unknown to us. I know you chances are increase if someone in your blood line has had the disease.

Also as above, my consultant also said its unrelated to diets.
 
pooley said:
so what's causing the inflammation something must be?
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there is the MAP bacteria hypothesis that is being tested at the moment - idea being some people can't fight this bacteria sometimes found in dairy products and it stays in the gut, they're testing a potential vaccine for it which *might* cure Crohn's
 
Since my bad reaction to Azathioprine, I have been switched to Methotrexate over the past 8 week I believe I am finally starting to make some progress. However, the first month on it was very unpleasant with all the side effects but they have/are wearing off now. I'll be totally honest, I was hugely petrified about going on it after reading things online and because of my reaction for the Azathioprine. I do have to go for weekly blood tests at the moment while I am on it as they were a little worried about my liver high reading around some of the functions but they have started to fall and come back into line. It's still not reading normal levels but its halved it reading in 6 weeks or so.

The one thing I am finding on it, I can sometimes be very tired on it but I am finding as time goes on that seems to be improving. However, I've had the odd day here and there where I have felt completely normal so it must be doing something for me and also passing water seems to have stopped. I do have days where it still feels uncontrollable but overall, I think it’s helping.

I am just taking it easy till the consultant gives me the OK and I can reduce my blood tests.
 
I had to switch from aza to mercaptopurine then to another one before going onto humira injections, they seem to be working now
 
so let me get this clear, you have inflammation of the intestines went to see about a remedy for it,
got told it's not what you're putting in those intestines ie your food choices so eat what you like but we haven't a scoobies why? smh...
 
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