Hello everyone

[amberqueen]

This forum seems so helpful and friendly, it's about time I said hello! Don't know where to start though. Just diagnosed with crohn's disease but have had problems on and off since childhood, am now 26! Since I was a teenager its been passed off as IBS or a tummy bug, which looking back now I can pick definate flare's over the years, not stupid IBS! I had a scope(down throat) last december which was normal. Was taking fybogel for "IBS" since but still sore, constipated, bloated, my intestines were swelling all the time too and had definately been more exhausted than usual. Then nearly 4weeks ago now I ended up in hospital for 10days, I nearly collapsed in work with the pain one day, never felt pain like that, horrible..was made fast for 4days and had xrays, blood tests, CT scan(with contrast), MRI scan(with barium) and finally another scope where they took biopsies..rough week and so much pain :ybatty: So I was told that my whole small intestine from start to finish was extensively damaged, what does this mean exactly?? I was on a list for surgery for my first 7days where I would have had to have my whole small intestine removed because they said its all unhealthy :eek2: this freaks me out..I'm still waiting on biopsy results, which I should get on Wed, have a gastro appt then, I am so full of q's for them! I was put on Prednisolone on a drip 4times a day for 5days and antibiotics, then after that took pred orally 40mg a day for a week, 35mg for week, now 30mg, is this likely to be tapered down till I'm taking 5 a day or something because I'm not a fan!? Am also taking multivitamin, iron, calcium and maxalon 10mg 3 times a day. I'm feeling alot better since my hospital stay but still feel crap enough and have very little energy. Might be worth mentioning that I was allergic to dairy and eggs as a child but grew out of both allergies? Also in the last few years my B12 and iron went low twice (that I know of) I think my doc at the time just assumed I wasn't eating properly..bla! Have always been on the skinny side. I'm trying to be positive and just hoping I can get back to work and back to "normal" asap but I feel overwhelmed and nervous of whats to come. This post is kind of a ramble-my apologies, just have so many q's and thoughts at the moment but I think I've come to the right place :smile: any help, advice or tips will be greatly appreciated, thanks in advance

 

[Jessi]

Hi Amber, and welcome to the family.

Sorry you had to have such a crappy diagnosis. You're really going through a rough time, aren't you?! Your whole small intestine is bad? And your whole colon? Oh, you poor sweetie. You definitely came to the right place.

Did your GI prescribe B12 supplements or injections because you're low? Many Crohnies suffer from that problem. Iron and others, too.

I sure hope you feel better soon, love. :hug:

 

[Awbrey]

Welcome this is the place to be ;-) Everyone is great and you will learn alot how to manage the disease and feel like you are not alone. Hope you feel better soon and your energy comes back fast.

 

[Del]

Hello Amber and welcome to the forum..
Great information to be found here. There is plenty of people here in a similar situation and they should be along soon.
Take care..

 

[amberqueen]

Thanks for the welcome guys, I'm glad I joined this site, it really is full of information. Jessi-as far as I know its just my small intestine, don't think its in my colon(fingers crossed) Have to get a colonoscopy when I'm not so inflamed. Will know alot more on Wednesday. My B12 also seems to be fine at the moment, have had injections before-its a good thing I don't mind them I guess!

 

[Crohn's 35]

Hi Amber welcome to the forum :bigwave: I too had an unhealthy Ileum area, it was loopy, and heavily diseased. Had laproscopic surgery and was great for 7 years. You may have alot of patchy or ulcered areas, and or narrow passages. If the recommend surgery it will most likely be the best avenue. Scar tissue isnt fixed with meds. Let us know the results!

:hang:

 

[amberqueen]

Hello Pen! thanks for welcome I'm trying to not think about surgery for now, I really hope I can avoid for as long as possible, I should find out more on Wed, I'm full of q's for them! Great to hear you were doing good for 7yrs after though! Hope you're doing good now I'll let ye know how it goes, so anxious.

 

[amberqueen]

Hi guys, had my appointment yesterday. So I have moderate stenosing small bowel crohn's they say, anyone have this kind? Still have to have a colonoscopy, which I hope is soon, to get it out of the way, so will prob get more info then. Getting a bit more energy back but have really sore joint pain today and yesterday, especially my legs, am so achy, do ye get this too? I started taking Pentasa today(4 a day) along with everything else and also supplements(gross) because I've ended up malnourished after everything, which is a bit weird but hopefully they'll help me put on a few kilo's. Anyone think this is maybe why I feel so sore and achy? Cannot wait to be back to normal!! Any info or advice is much appreciated :ysmile:

 

[Astra]

Hiya Amber
and welcome

I have to say that's a quick taper with the Pred.
Your story is a lot like mine, I was fobbed off with the old chestnut IBS for over 15 years! And in all that time I was scarring inside with inflammation.
Last year I was in hospital with a blockage, the pain is like nothing else on Earth, I couldn't even speak it hurt that much.
Anyway, the surgeon was on stand by to open me up and take it all out. Apparantly, I nearly died, but that's another story!
But... here I am, over 18 months later and no surgery. The Pred saved my life and I was on it for over a year, Metronidazole too.
Blah, blah, blah I can talk a glass eye to sleep!
My point is.... surgery is the last resort unless you're knocking at Death's door.
Discuss other options, meds, treatments etc first.
Get yourself genned up by reading our treatment sections on here.
Oh, the joint pain? this is a common side effect of coming off Pred.
I needed a Zimmer when I stopped it!
Glad you found us, fire away with your questions, nothing is TMI here
lotsa luv
Joan xxx

 

[amberqueen]

Hi Joan, thanks for responding and your positivity, your msg made me feel so much better, I hate the idea of surgery and will do everything I can to avoid. You know a gastro doc when I was in hospital told me that he didn't even believe in IBS, he reckoned it was a blanket term for anything they don't know, how annoying! Glad to hear you're doing much better after such a close call, scary times. You're so right, the pain really is like nothing else on Earth, lets hope we never have to experience that again. A year is a long time to be taking pred, I'm happy they're tapering down quick for me, hate the stuff(but it has to be done!) Can't believe the joint pain though, its making me walk funny! Did it take you long to get back to work and feel better after that? Have you had any flares since then? I feel a bit clueless about it all so will be reading around here bigtime, hope you're feeling good today :sun:
Ps: my mum is from the Wirral, which is pretty close to you I think, small world!!

 

[Astra]

Hiya
The Wirral is very close, over the water tho.

Made me smile about IBS. My consultant told me it doesn't exist too, the jury's still out on that one!
He said there's always a reason for belly ache and everything must be investigated.
I didn't mind the Pred, but I'm a weirdo like that! I loved the speedy wizzy feelings!
But I did have horrific joint pain coming off it. So I did a short course of Entocort (a milder steroid) this isn't as brutal as Pred.
I was off work for 5 months all in all and now I'm back full time. Having said that, I'm off this week with a heavy cold which I cannot shake off, me immune system is shot to Hell!
Talk to your gastro about your options, maybe you could get a biologic? Read our Remicade Club (called Infliximab in UK) or the Humira Club. But be aware that NICE guidelines suggest you exhaust all other meds first, ie an immuno suppressant like Azathioprine (Imuran) or 6MP (Mercaptupurine)
A lot to take in I know, but research here on the forum.
Good luck
xxx

 

[amberqueen]

Heya! I forgot Merseyside is over the water, I got that little ferry once! Sorry to hear you've got a cold, hope you're feeling better real soon. Thanks for the info, will definately be reading up on everything, they didn't really give me an option or tell me about other drugs, they just put me on 4 500mg Pentasa a day, maybe they'll put me on something else when I'm finished the steroids, dunno though, they don't tell us much in Ireland! Good thing I found this place! See you around here, feel better, :rosette1: xxxx