Hi, I've just joined the forum, looking for like minded sufferers!  I'm sat in bed feeling tearful and sore and as usual I start looking for any information I can find in case there is a chance there's something out there I can do to help myself, still looking.

Diagnosed last year, 2 years after suffering an abcess and fistula (3 ops to sort out), my Doc said we would sort out my 'IBS' after the abcess was sorted...............

First Consultancy visit after diagnosis was that surgery was way off and there were a numbers of drug options available.  So I had my first surgery March this year (some strictures removed, others bits repaired), had a brief spell of wellness, a little under two months.

So far none have the drugs appear to be making much of a difference, steriods, although haven't yet been prescribed Prednisone, was 'threatened' with it by the Consultant 'did I want it with the side affects' don't know what the side affects would have been, but refused because I was scared.  I say threatened, it's all a state of mind really, and mine was in my boots at that time.  Azathioprine, I reacted after 3 weeks, it hurt big time.  I'm currently on Methortrexate, and had the dose increased, but it doesn't appear to be working for me and am also taking budesonide, still hurting though, next step Infliximab, so waiting on the NHS to contact me.  I have no more strictures,just some ulcers and a mass (have no idea what that is!), so it's just the Crohn's itself causing the grief!

Strangely as I type this I'm feeling less tearful, must be because I'm on a forum where everyone will totally understand.

Before I started typing I read through a number of the posts and it made me feel sadder for those of you who are having a much harder time than me, so my thoughts are with you all.

I guess my biggest question/worry is what's left after Infliximab, and I don't even want to kow what side effects lie in store, ignorance is, well maybe not bliss, but you understand.

Any thoughts?  Words of wisdom?

Funnily enough the only words of wisdom I've come accross recenty was on a toilet door, and generally I spend a porportionate(!) amount of my time on the loo!

'If you can't see the light at the end of the tunnel, then get up and switch the light on!

Regards to you all

Julie
'

Hi julie,, hang on in there hun, i was diaganosed with colitis a feww wekks ago, after years of being told i had ibs, im still not sorted i now have to have barium scan on my small bowel has there could be a stricture,? blockage there, Ive had colonoscopy that diagnosed the colitis, im on steroids at the mo, 20mg a day and after the first few days i started to go gaga, now weeek two im an aggressive paranoid beast at times, i have some terrible sweats, and to top it all i still have the runs. not has often, as the blockage holds the food, and then all of a sudden i get pains galore, and the the pruge comes and im stuck on the oo for hours on end, this has become my life, im stuck with it, and im not coping very well with it, so i know what you mean. i see the gastro on the 12th just wish i could have my life back, at least on here all the peeps understand you, and make you feel better about how your feelin,  Stay focused thats what everybody tells me, but i know thats easier said than done mate im on here most days hun so if you fancy a chat private me, and ill chat to you XXXSUEXXX

I know it's a bit late, so thanks for taking the time to reply, I don't know much about Colitis, so I will have a read up about it.  At least now you've been diagnosed, I know the relief I felt finally knowing what the problem was.  So it's onwards and upwards and hopefully some way towards bringing some control to our IBD.  I think everyone suffers a wide range of issues, but we all have the loo in common!  Did you know you can get a RADAR key from a link on the NACC site, mine has come in very handy once or twice in an emergency, I even bought the book so I could plan ahead.

Hey there Julie!  Glad you're here.

Now, that being said, just want to tell you that you are NOT pathetic.  You're just on the same old cruise ship we're all on.  Sometime's it's a little rough and sometimes it's smooth sailing.  Regardless we're here to encourage and support each other.  

I envy you people and your Radar Keys.  They're wonderful!  

Quoted from crohnsproof

Hey there Julie!  Glad you're here.

Now, that being said, just want to tell you that you are NOT pathetic.  You're just on the same old cruise ship we're all on.  Sometime's it's a little rough and sometimes it's smooth sailing.  Regardless we're here to encourage and support each other.  

I envy you people and your Radar Keys.  They're wonderful!  

Hi Julie welcome to the site.I think crohnsproof sums it all up.Take care.

Hi Julie

I just wanted to check, has it been suggested to go on a very low fibre diet until things settle?  I've been diagnosed 2 weeks and on a very low fibre diet (no fruit, 80g max veg) to let my innards settle down, my diarrhoea has practically stopped (unless I eat something like fish n chips, like last night.... but they were scrummy!).

Might help you if you cut out the high fibre foods to let your internals settle.  If you search for "Addenbrookes low fibre" on Google or the like, it brings up a pdf document that is very useful in saying what to eat and what not to.

I have a good idea how you're feeling.  I felt totally alone after the diagnosis, I got a little information from the hospital, but thinking "oh my god what do I do now."  Fortunately this site and a couple of books I've bought have helped me come to terms with things more.

Sounds like your doctor doesn't understand your condition, either physically or mentally.  To say essentially "you don't want these tablets cos they'll make you ill" is a very bad thing to say.  Yes the prednisolone make you feel weird, but they also help.  I just keep saying "it's the tablets making me snap/feel ill/etc" which does help! (even if it's not the tablets all the time )

Hope you're feeling better soon.