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Anyone else with Crohn's Diease or IBD?

63 replies

roseylea · 27/12/2006 09:40

I have Crohn's and I'm having a nasty nasty flare-up atm.

I'm just so sick of it. I'm in pain all the time.

I just wanted to see if there's anyone else with this...

OP posts:
strawberrydream · 28/12/2006 20:45

mine is in the stool and when i wipe but not all the time.

idontlikecrusts · 28/12/2006 20:45

ohh lulu, really?

How awful.

Raggydoll · 28/12/2006 20:50

ok in brief without the gore .

He had mild symptoms for several yrs from about 17 I think - like the ones described below but he had a lot of bright red blood. He eventually went to the dr who diagnosed piles for several yrs!!

Then when he was about 25 he lost a lot of weight quite quickly. He went back to the dr and asked to be referred - he was sent to a proctologist who diagnosed proctitis.

Proctitis is ulceration of the anal canal. The proctologist (who was a specialist in all types of bd) was reluctant to diagnose UC or Crohns intially and dh was treated with steroid foam (colifoam) and steroid tablets. This was in the February I think.

It was the following May when his weight really plumetted and he became very weak. He had an appt with the proctologist and when he went the dr refused to let him go home and admitted him.

That fortnight he was treated with steroid injections and given lots of blood and fluids because he was losing so much going to the toilet! I think at the worst point he was going to the loo 20 to 30 times a day - probably 10 times in the night!!

In the end the steroids didnt work and he had a ileostomy - like a colostomy but in the small intestine as the bowel was completely removed.

6 months later he went for recontructive surgery where they make a pouch from the small intestine - ie no bag needed.

Today - he is pretty much 'cured'. He doesnt have colitis because he doesnt have a bowel. He could still get crohns and he goes for 6mthly checks for ealry cancer signs etc.

He goes to the toilet more than avg but other than that he's quite normal.

Apols for lenght and hope I havent scared the living daylights out of anyone.

lulumama · 28/12/2006 20:52

RAggy-- honesty about these sorts of illnesses is good.....too many people too embarrassed to discuss their bowels and bums, am sure people have lived with terrible conditions due to being embarrassed and thinking they are alone...

Raggydoll · 28/12/2006 20:54

yes - dh went undiagnosed for yrs because he didnt want the dr to stick his finger up his bum . He has had far worse as a result - what with child birth and UC there is not much that embarrases us these days.

lulumama · 28/12/2006 20:55

LOLOLOLO!!!! yep. after childbirth and colonoscopy , nothing can shame me now!

Simplyred · 28/12/2006 20:57

Oh that sounds painful Raggy your poor dh!

I'm booking a GP appointment in the morning - I'm sure I have mild IBS - but I want to see a specialist!

strawberrydream · 28/12/2006 21:00

good luck simplyred - i waited 8 months for an appt with a specialist and that was supposed to be a fastrack.

Raggydoll · 28/12/2006 21:01

lulumama - when dh's was bad he said the blood gushed (like you). He also lost a lot of mucus. However my mom also has UC which she easily controls with meds and she gets simliar when she has a flare up.

Dh's got to the point it did because it went untreated for so long. By the time he was diagnosed I doubt there was much bowel that wasn't completely ulcerated .

Raggydoll · 28/12/2006 21:03

It might be worth going private just for th initial consult - after a diagnoses you can go nhs.

idontlikecrusts · 28/12/2006 21:33

Thanks for sharing that raggydoll - sounds very traumatic but pleased a good outcome eventually!

roseylea · 29/12/2006 09:19

Hello all!

I'm a bit better this morning. Still not over it yet but much better than I was when I started this thread.

Raggydoll and Lulumama, thats why I think people avoid asking how I am! I think they're scared I'll give them all the nasty details! People don't like talking about elimination - except for the time I spent in China where they take it all very matter-of -factly!

But to encourage you...I've had Crohns for 10 yrs during which time I've got married, trained as a teacher and started my career, spent a year travelling around Asia and had two children in 18 months! I'd love another too...[wistful emoticon] So life goes on.

I wonder how to talk to my dcs about the Crohns - atm it isn't an issue as they are so small but it will become something they will have to live with as they get older. Have you found this Dracula?

I know my dh is affected by it too. He is v. good at supporting me but sometimes (like just recently when the dcs were ill with colds too) it just gets a bit much and he finds it really difficult living with someone who has constant diarrohea.

Here's another TMI question (it's that sort of thread anyway ) - how have any of you found that this affects your sex life? I know my dh has felt a bit neglectd lately as I'm just too ill / exhausted to even think about it. I want to have as good sex as I acn but Crohns as about as un-sexy as it gets .

OP posts:
moogyboobles · 12/03/2007 00:44

I've got UC, 3 years this month. I've had enough of it now! Best time ever was 6 weeks postpartum, totally symptom free then!
I'm waiting for the day NLP and worms are on the NHS!

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