Hi im Michael

[MikeN]

Hi im Michael 23 from Devon,England

I have just been diagnosed with Crohnes. after a few weeks of constant stomach aches i decided to see a doctor.

It is obviously not the easiest thing to diagnose as it took a while

My symptoms were:

Stomach pains
Bloated Stomach
Weight Loss
Loss of appetite.

After a CT scan i recieved the news...

Im now on steroids 9mg a day

My 1st question is about the side effects and how long u will usually be on them at any 1 time?

And does any 1 else eat like a horse whilst on these!!!

 

[butt-eze]

Welcome!

I'm sorry about your diagnosis but believe you'll find a lot of great answers here.
Prednisone make us all very very hungry. It subsides once you get off the steroids.

Doctors try to keep us off the steroids. Typically once you stop flaring they will wean you off of them. It's different for each of us.

Side effects are different for everyone. I immediately noticed "moon face" and weight gain due to appetite. Others have complained of acne. I have joint pain with or without steroids but may have developed it from long term steroid use (2 years!).

Keep us updated on your progress.

 

[MikeN]

i found the steroids eased the pain overnight and it is pretty much died right down. yes the doctor mentioned the 'moon face' a bit of weight gain would be welcome ate the moment now as ive dropped to 150lbs from 165lbs.

 

[soupdragon69]

Hi Michael,

Welcome to the forum! This is the best site I have found for feedback, understanding and thoughts on how to ease any concerns whether you are having a good or bad day.

Two sites in the UK you may want to look at are: www.NACC.org.uk and www.crohns.org.uk

The first is a national website of the society here in the UK the second is the website provided by my local hospital which quite a few have found useful for decent explanations. See what you think of both.

Half the battle is knowing its Crohns the other half is finding out what suits you as an individual on the diet, meds and lifestyle front.

You are right steroids can give you an appetite. Might get a few spots or have problems sleeping too as a couple of other thoughts. Glad they are helping you so fast.

Keep asking here and posting. Keep asking lots too of your gastro team - remember this about YOU so fight your corner!

Welcome again. Looking forward to seeing another from around the UK ;-)

 

[MikeN]

thanx for the great replies guys, I have plenty more dumb questions...

Do you have any1 else in the family with chrones? (i dont)

how often does chrones lead to surgery?

 

[soupdragon69]

Hi Again,

Nope no one else in my family has Crohns that I know of. There is a history of GI problems like Diverticulitis and IBS and colon cancer (late in life - 70s,80's)

Crohns can lead to surgery if you have strictures or obstruction, severe abcess or fistula but not everyone develops them. Some of the guys here will certainly be able to tell you more on that front. I was diagnosed Dec 06 with gut problems for years and have had no surgery if that is bothering you.

There are lots of things you can do to help yourself in relation to diet and resting and meds for instance. A good relationship communication wise is important too with your GP and gastro cons. Never be afraid to flag up you are having problems and dont ever think you are making a mountain out of a molehill ok? Early sorted is easier to nail whatever it is.

Hope my waffle helps a bit. Have a good hunt through the different threads and post on them too!

 

[butt-eze]

No history of Crohn's in my family. My uncle had stomach cancer. My mom has IBS.

 

[Isla]

Well howdy ho.. I am one of those dumb Americans that has no idea where Devon is (I know a Devon.. does that count?) Anyway, congrats on the new diagnosis as it is always nice to have a cool name to an ugly "face." As for some of your questions.. no family history of any bowel disorders. And then for eating... I have always eaten a lot of food. Food was my first love and I never stopped loving it.

 

[Guest]

hi Mike, welcome to the forum

don't worry about asking questions - i've had a Crohns diagnosis for over 20 years now, and am still learning, particularly since joining this forum.

there isn't anyone i know in my family history who had Crohns, but there are quite a few blood relatives who had stomach problems, such as IBS, 'nervous stomach', colitis, hiatus hernia. i suspect that if these people had been around nowadays and had the diagnostic procedures we've been through, then one or two might have come up with a Crohns diagnosis.

regarding surgery, like already mentioned, it depends what effect the Crohns is actually having on your intestines, like a partial or full obstruction, or fistula etc.. in my case, mis-diagnosis for years led me to an almost full obstruction, untreated with meds because of waiting so long - therefore i went more or less straight from diagnosis to surgery.

i know people who've had Crohns for decades and never had surgery. i guess its just one of things we can't predict - but getting an early diagnosis, meds, and dietary alterations, i would say, give us the best chance of avoiding surgical intervention.

 

[jed]

And does any 1 else eat like a horse whilst on these!!!

he he, somewhere in one of my posts here i explain about how when i was in hospital on a lot of intravenous steroids, i started refusing my dose unless the nurses bought me a couple of toasted ham and cheese sandwiches

welcome to the forums Mike!

 

[Isla]

he he, somewhere in one of my posts here i explain about how when i was in hospital on a lot of intravenous steroids, i started refusing my dose unless the nurses bought me a couple of toasted ham and cheese sandwiches

welcome to the forums Mike!

Well did it work? Did ya get your sandwiches?

 

[MikeN]

Thanx for all the welcomes guys!

Yeh there is no history in my family that i no of i will have to do sum research on that!

Oh and Isla Devon is a very rural county in the South West of England very nice place to live.

 

[Nancy Lee]

Welcome to the forum Michael!!

I have researched the family history idea and came up empty handed in my family background, although there is a lot of IBS through-out the family.

Prednisone will make you eat like a horse, give you a moon shaped face, make you feel like you never need to sleep, and just a sense of well being. They will wean you off of it very slowly....never try to just jump off them yourself. I was on them for a year before I was completely weaned from them. Everyone is different as to length of time yo are on them

Also, I was diagnosed over a decade ago and....(knock on wood)... no surgery as of yet. That's not to say that the day won't come when I need it, but, if they get you on the right meds, and get the Crohn's under control and you into remission, you should do very well.

A positive attitude helps a heck of a lot too!

Once again...good to have you here.

Welcoming hugs~Nancy

 

[Jeff D.]

Welcome to the forum. I'm eating like crazy on prednisone. I can now eat an entire pizza.lol I don't have it ini my family either.

 

[Plop Star]

Hi Micheal, new on here today!

My dad has Colitis, his Mum and sister both died of colonorectal cancers.

Pred is making me R-a-v-e-n-o-u-s!!! Used to be on 80 mg - yes eighty- and back then I would grab chocolates off small children in the street!!!!! I would pester your meds and ask to be tapered down as soon as you can. They perform really well but personally I don't like to be on them for too long.

Well done for finding the site so soon after your diagnosis... it's great to get all the detail straight from the horses mouths so to speak (sorry guys!). What inspiring folk these people are too ... it's a lift just to be on board here.
Am just down the road from you in Somerset, so just holler if you wanna chat things through.

Dig deep Michael; you sound like you've got a real healthy and inquisitive attitude to all this. Things WILL get better soon buddy.

Cheers
Al

 

[elp888]

Hi Mike,

Welcome!

I also don't have any relatives with Crohns....
as for the Pred, i got a bit of a moon face and some extra fuzzy hair, but none of the other sides that people describe here. I was on it for 4 months this time.
Your dose (9mg?) seems quite low, so it shouldn't be too bad.

As for surgery, i've had it twice, but it's different for everybody.

good luck/take care,
e.

 

[elp888]

Hi Mike,

Welcome!

I also don't have any relatives with Crohns....
as for the Pred, i got a bit of a moon face and some extra fuzzy hair, but none of the other sides that people describe here. I was on it for 4 months this time.
Your dose (9mg?) seems quite low, so it shouldn't be too bad.

As for surgery, i've had it twice, but it's different for everybody.

good luck/take care,
e.

 

[elp888]

Oops, posted twice, sorry!
Don't know how that happend...

e.

 

[tracey]

Hi Mike, my 15 year old son has had Crohn's for 5 years. We have no history of it in our family but my husband is adopted so it could be on his side somewhere.
Danny has been on loads of high dose steroids on and off for 5 years. The thing he hated was the mooning of his face, but it soon goes when the steroids are reduced. He puts on loads of weight and costs me a fortune in food. Just as well i work for Tesco and get staff discount!
He is going into hospital tomorrow for surgery on Thursday, which he is pleased about. He just wants to get through his final year at school without too much time off sick. Hope things settle down for you on the steroids.