Crohns / ulcerative colitis sufferers

chroniclard said:
So my 11 year old boy has just had a colitis(UC?) diagnosis. :(

Wondering at what sort of age people got diagnosed and how people generally live with it. Dont know a huge amount about it yet. Does diet have much of an affect?
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Sorry to hear that :( for me I was 25 ish when they finally said UC. Diet will help manage the symptoms but its no cure. Booze and sugar really effects mine so I mostly stay away from both. Medication keeps mine under control with the occasional flare.
 
chroniclard said:
So my 11 year old boy has just had a colitis(UC?) diagnosis. :(

Wondering at what sort of age people got diagnosed and how people generally live with it. Dont know a huge amount about it yet. Does diet have much of an affect?
Click to expand...
as macca says, diet can help but it isn't a cure. also, almost every person with UC is different. 1 food type might send one persons UC through the roof and yet another person else can be fine with it. it takes time to find out what your individual triggers are and even then it's not set in stone. some days i can eat nuts with no ill effects, others it'll have me doing the tiptoe dance to the loo but hopefully he'll learn as he gets 'used' to his UC to read his body and how he's feeling.

it's important with his meds though that he speaks up if he feels they aren't working - i learned that the hard way. when i was first diagnosed and placed on meds the first few years were horrendous. i just assumed the meds they put me on were the best for me but it turned out they weren't really doing much in my case. been changed a few times since then but thankfully, touch wood and all that, my current meds seem to keep mine under relatively good control.

re the age of diagnosis i think i was about mid to maybe late 20's - but i'd certainly had it for a good few years prior to that.

i wish your young lad all the best, it's not a fun or pleasant condition to have. try and not let him get too down about it (though i appreciate that is easier said than done) If he does get on a downer, maybe point out to him that Darren Fletcher was diagnosed with UC while playing for Man Utd and he was able to continue playing top level football.
 
Hes mostly just down about the doc telling him not to eat beef, fizzy drinks and spicy food! Does like his food. :p

Awaiting an emergency appointment to get some meds for him, doctor claimed they cost about 5 grand a month!

Thanks for the info.
 
Well yeah spicy food and alcohol probs aren't a good idea during a flare up. If they've got strictures then avoiding fibre is often recommended too, that leads to some counterintuitive diet advice like avoiding brown bread, brown rice and things like salads etc... Go see a dietitian if needed as plenty of "nutritionists" aren't necessarily going to be familiar with IBD and the specific requirements that might be needed... also more prone to recommend fad diets that don't have an evidence base. Remember that you're going to have more trouble absorbing stuff in your gut so you don't really want to arbitrarily restrict things from your diet just because some woo guide or supposed nutritionist person claims you should.
 
So been having a few gastric pains - nothing major - and went to see the doctors. He put me through blood and stool tests and it's come back as positive for H Pylori and Faecal Calprotectin of 1320.
Thinks I may have IBD so I have a referral for a Colonoscopy and Gastroscopy. Guess I'm probably in this threads 'club' now..... :(
 
Anyone ever had Modulen before?

Moley said:
So been having a few gastric pains - nothing major - and went to see the doctors. He put me through blood and stool tests and it's come back as positive for H Pylori and Faecal Calprotectin of 1320.
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I've never had a positive test for H Pylori before, that was what my GP used to check for before I got diagnosed with Crohn's and then would chalk it up as "gastritis" and prescribe PPIs.

Did they say whether H Pylori affects the Calprotectin result? Like if you've just got that surely they nuke it with antibiotics or something... if so I hope you've avoided IBD, it isn't fun! Best of luck with the colonoscopy etc..
 
dowie said:
Did they say whether H Pylori affects the Calprotectin result? Like if you've just got that surely they nuke it with antibiotics or something... if so I hope you've avoided IBD, it isn't fun! Best of luck with the colonoscopy etc..
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So I went to see a consultant yesterday (private, thanks to work funding Bupa), had a discussion and he will be doing my 'oscopy's in two weeks time. He was talking about possible UC or Celiac Disease - apparently Celiac is very common in Irish people which is my heritage. The colonoscopy is really to rule out Bowel Cancer and while in there if he sees any polyps he will cut them out - which by itself reduces your bowel cancer risk by 70% he said. Not looking forward to crapping for England the day before (Picolax is *very* effective apparently) but needs must.
 
Ah well at least you can just go gluten free to manage symptoms then.... and actually be one of the people who genuinely need a gluten free diet rather than the idiots who just adopted one as a trend.
 
In terms of symptoms, seemingly they're quite similar (and both can vary in severity), just different parts of the gut typically affected.
 
chroniclard said:
Apparently now saying son has Crohns rather than UC, doesn't seem a huge difference between them?
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Also it's easiler when you tell someone about it :/

Other person: So what does he have?
You: UC
Other person: Whats that?
You: You know what Chrons is?
Other person: Yes
You: Same thing

I've had that same conversion so many times!
 
First paediatric appointment tomorrow, hopefully get some meds sorted. Boys been mostly fine last few weeks, still some blood coming now and again though.
 
chroniclard said:
Apparently now saying son has Crohns rather than UC, doesn't seem a huge difference between them?
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Chrons can affect the entire digestive tract from mouth to butt and include the inner and outer walls of the gut. U/C is the Colon and Anus and usually just the inner walls although mine had spread out by the time they removed my colon.
 
My colonoscopy and gastroscopy are tomorrow. I'm sitting in my home office which is five paces from the bathroom. This picolax stuff is effective. :-o
 
Handing in a stool sample tomorrow morning. Not really looking for Crohns or UC but maybe something more sinister, just in case.

I've been having it treated as IBS for the last few months with having symptoms for a few years now. Fingers crossed it stays as this as I really can't deal with another bombshell moment. Already had one of them a few years ago with my CML that in all honesty I still haven't really got over complelety.
 
Well, December onwards has been a funny old time. I was taken to hospital 2 weeks before Christmas as I had a stomach virus called crypto sporidium. That triggered a massive colitis flare which was uncontrollable with massive doses of steroids and other drugs.

Roll forward to January 5th and I'm taken for emergency ileostomy surgery due to the potential rupturing of my bowel.

Here I am 2 weeks later, now with a stoma and pooping into a bag. What a turn of events. I'm doing well recovery wise as it was done keyhole (purely out of luck as the on call surgeon specialises in laporoscopic surgery) but I'm very weak as I lost 18kg before the op.

I'm feeling positive about life with an ileostomy; no more worrying about how near I am to the toilet or fear of getting on long public transport journeys without access to a loo. I can see the positives to bag life!
 
dowie said:
Anyone ever had Modulen before?
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Just noticed this older post, boy tried modulen to get it all under control. Very hard going as its not the nicest but after a 4 week checkup it had not worked so ended up on steroids.

Such a waste of NHS money too, basically got 2 crates of it left at home as they cant accept it back.
 
DanTheMan said:
Well, December onwards has been a funny old time. I was taken to hospital 2 weeks before Christmas as I had a stomach virus called crypto sporidium. That triggered a massive colitis flare which was uncontrollable with massive doses of steroids and other drugs.

Roll forward to January 5th and I'm taken for emergency ileostomy surgery due to the potential rupturing of my bowel.

Here I am 2 weeks later, now with a stoma and pooping into a bag. What a turn of events. I'm doing well recovery wise as it was done keyhole (purely out of luck as the on call surgeon specialises in laporoscopic surgery) but I'm very weak as I lost 18kg before the op.

I'm feeling positive about life with an ileostomy; no more worrying about how near I am to the toilet or fear of getting on long public transport journeys without access to a loo. I can see the positives to bag life!
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Sorry to hear that dude, but it sounds like life is easier for you now with the ileostomy! I have to admit, that's my biggest Crohn's fear. I'm pleased to hear it's not so bad.


I had a bit of a flare late-October, but for me a flare is probably nothing like some other people suffer. I think my Crohn's is pretty mild. I've been on steroids for the last 2 months though. They seemed to have evened me out, particularly after getting my diet under control following Christmas. I feel good now.

I'm scheduled for another seton surgery on the 5th February, which should be fun.
 
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