New to the forum

[coachvee]

Hi all,

I've already made a couple of posts and didn't realise there was an introduction forum

My name is Victoria and I've been diagnosed with Crohn's since early 2006. They had to do all of the fun tests in late 2005 - ultrasound, small bowel meal, endoscopy, colonoscopy - and only confirmed the Crohn's with the colonoscopy, mainly because my symptoms were just the ambiguous "abdominal pain, tiredness"... I never associated the diarrhoeal symptoms with it back then.

Mine is less severe than most peoples, but it still affects me enough to put me out of commission for periods of time, having to have time off work etc.

I am extremely lucky to have a very understanding and pragmatic employer who I have told all about my condition and is happy for me to take time off when I need it. (I'm harder on myself about it, my job is a busy one and it's difficult to catch up sometimes) I am also extremely lucky to be living with a wonderful boyfriend who understands as well and helps me so much.

I am a lucky person with Crohns (ironically!) but am still looking for ways of maintaining the condition better - my job is in retail buying. It's the type of job where you are never able to tick every job off your list, there is always something to do = a great job, and I really enjoy it, but it is very difficult when you have a condition like this which fluctuates and means that you need to take time off.

The worst thing is that for several months before Christmas 2007, it was quite stable, but since the New Year I have had to have a lot of time off. So at the moment I am waiting for a reply from my nurse to discuss possible surgery options - I have just tried steroids and they worked but they didn't work enough. They said if they didn't work it is probably scar tissue narrowing the bowel, so will probably need a resection.

Anyway, this was going to be a quick one and turned out not to be! Good to find a place like this to post

 

[Kev]

hi coachvee Welcome to the forum. If you're the superstitious lot, like myself, you may not want to go posting about how you aren't having it as bad as some others.. this disease can take turns for the worse. Think you'll find us crohnies aren't into comparing things along those lines; bragging about who has had it the worst; or who has been the luckiest. This darned disease is way too unpredictable. Anyway, all the best. Keep posting, asking questions, anything you want.. We're all just folks like yourself, and we really try to help each other.

 

[D Bergy]

Welcome to the forum.

That sounds like a real interesting job. It is hard, at times to do your job and deal with this disease. At one time it was all I could do to make it through work and get through the day. Luckily I am doing great now.

I felt much better after my resection. Most people do improve afterwards. Then it is a matter of keeping from getting another blockage.

I hope it goes well for you.

Dan

 

[russ.uk]

hello everyone!i am also a newcomer to this forum.Had resection June 2007,all went well until three weeks ago.Started with bloatedness then up all last night with abdo pain.Pre surgery i was a vomiter,post surgery i am a loose movements man.Am on no meds,discussed asacol but merits were questionable so skipped it.Looks like back to square one!!!

 

[Shakedown]

How exactly is it one would know there is blockage and would need a resection?

I too have been one of the more lucky ones. This last go around has been kicking my ass, so even though I'm doing better I don't get ahead of myself as it could go straight downhill tomorrow.

 

[coachvee]

Thanks Kev. I guess you're right in that it's so unpredictable, nobody can really say whether they are better or worse off! I guess I come from a typically British background brought up on Python sketches like the Four Yorkshiremen, going on about who's had it the worst...Lol. That and my grandma has Crohn's that is worse than mine too (but it's not that she tells me so - she doesn't even know I have it anyway! She's 86, I'm not going to put her through that kind of worry!)

D BErgy, good to know yours went well. My job is an interesting one especially considering it s for the area of art & craft/board games & jigsaws. It is just a pity I have had to have so much time off - but I'm hoping I can improve on this.

russ.uk welcome to the forums too SOrry you are back to square 1 already - not sure how you can deal with that after the surgery - I bet there are lots of people here who can share their experiences with that.

Shakedown - In terms of my case, the logic my nurses gave me is that if I did not respond to steroid treatment, it is probably not inflammation, but 'permanent' thickening due to scar tissue. Considering the very short-lived relief I had, and going by their logic, I'm guessing that I would be better off with a resection, but this is what I am to discuss with them tomorrow.

Thanks for the warm welcome all

 

[Kev]

Well, my grandmother was English.. from Bromsgrove.. (sp?) a WW I era nurse who had the audacity to marry a Canadian.. Watched Python, saw a great deal of her N her daughters (one of which is my mother).. and the comparison thing, well it didn't skip those generations. Fact is some have it better (at least for moment) some have it worse (and we pray for those) but the vital thing is we all have it; and no matter how quiet or cantankerous it is at this moment in time.... there's always tomorrow... and no telling what our tomorrows may be like. Frinstance... my last operation was a walk in the park. A few times folks have asked; and I and others have shared our experiences; mostly pretty mild experiences... yet some of those folks who asked for this facing their very 1st op had devilishly difficult experiences. Anyway, I'm creeping into another long winded post... (and I'm way over quota now). So, if things are going good for you at the moment; enjoy it while it lasts; and try your best not to jinx it, okay?

 

[pennywanna]

Hey Kev do you have siblings as well who have this disease cause I do, all 5 of us have either or or both and it skipped my mother completely but have family in England who have it, whom are much older. This is a strange phenomenon.

The only good thing is, I dont bleed, but get the pain.

 

[Kev]

My birth mother has it... and of her 6 children, 5 of us have it. Guess one of us is really, really lucky.

 

[elp888]

they always told me there was a hereditary aspect to Crohns, but no one in my family has it...

 

[Keara07]

Hi - Welcome to the forum coachvee...happy you have had some good times for sure. It is good to be upbeat at times.

I am just under 8 weeks post resection surgery - only dx'd in Dec, on to many diff drugs incl steroids which , sounds like you, didn't help much (I am tapering now - been on the whole time up to 50mg pred)...ended up with a complete blockage and 180 fold over of the bowel and an emergency surgery...if you can avoid that, do - go into surgery planned, and off steroids and steroids prolong healing....really prolong it. It is taking much longer for healing for me.

But that said, things are improved than the months leading into the surgery and the little things and minimal *flares* if I want to call them that (are they CD related or prednisone issues we are unsure?) are nothing compared to the pre surgery ordeals.

I wish you well !

I have heard too about hereditary but like elp888, I have no relatives with CD but I do have a one aunt with IBS and one with Colitis - both on my mom's side. Considering there are 9 siblings on both my folks sides it's a small number though esp with all the cousins out there. Go figure.

 

[Kev]

Well, from my current understanding of it.. don't hold me to this, I may be wrong; but apparently even the doctors can get it wrong.. if they didn't do well in math..

Depending where you live, the odds of getting it is about .3 - .5 percent
(that's POINT THREE to POINT FIVE.. so it's way less than ONE PERCENT)

But, if one of your parents have it... then the risk increases to 5.0% - 10.0%
(that's FIVE to TEN PERCENT).. so the odds of you getting it are 10 to 20 times greater... but it still means in a group of 100 people who have a single parent with it, 90 - 95 of them WON'T GET IT. (whoever thought studying statistics in college would ever come in handy)

 

[katiesue1506]

No one in m y family has it... but autoimmune diseases run rampant. Hypothyroidism, Raynauds, and some others

 

[russ.uk]

Hello,as an on the whole an anti-meds man:steroids didn't work then azathioprine put me in hospital for 5 days with pancreatitis!Is there any alternative treatments or worthwhile trials out there?Keara07:As with you pre-op was doubled up agony with 8 hour stints of intermitent vomiting but now although uncomfortable i can deal with it(no meds).Might have jinxed it there!As to why we have it,we could discuss it forever and never really know!Wary of seeing Dr.(since first flare up after surgery)as think he'll give(try!)me meds.CROHNS is very much a mental thing!

 

[coachvee]

Hello,as an on the whole an anti-meds man:steroids didn't work then azathioprine put me in hospital for 5 days with pancreatitis!Is there any alternative treatments or worthwhile trials out there?Keara07:As with you pre-op was doubled up agony with 8 hour stints of intermitent vomiting but now although uncomfortable i can deal with it(no meds).Might have jinxed it there!As to why we have it,we could discuss it forever and never really know!Wary of seeing Dr.(since first flare up after surgery)as think he'll give(try!)me meds.CROHNS is very much a mental thing!

Sorry to hear that - not as rare a side effect as they'd have us believe! - I Had a horrible reaction to azathioprine too (see the Vent forum!!), exactly as they described the symptoms of acute pancreas inflammation - thank god I started on half my dose like my nurse suggested, or I could have ended up in hospital too. THankfully it seems like I got over the pain now, I had to take codeine though..
I think Azathioprine is the final step in drug treatments and they look at surgery after that.
Not sure why they tried you on azathioprine if steroids did nothing? My nurse has told me if you don't respond to steroids that you probably have strictures or scar tissue blocking the bowel, rather than inflammation.


To add to the hereditary/family thing... Well, the only person in my family who has it, that I know of, is my grandma on my mum's side, but my mum doesn't have it. Strange indeed.

 

[Kev]

Yeah, involvement of the pancreas can stem from the drugs we take, but it can also be from the disease itself. There's a pathway... the common bile duct.. that ties in the digestive tract to the gall bladder, pancreas and liver. I had pancreas issues that long preceeded my taking any meds. It is not a fun experience, no sir.

As for the genetic link... I don't recall the numbers... and my knowledge of the whole topic is pretty limited. I vaguely recall learning of dominant N recessive genes... But my basic understanding of the risks is that the worst case scenario is that someone with a family history of it has a 1 in 10 chance of IBD.
So, in a family of 10 offspring... statistically 9 would be clear, 1 would have it. I can only 'ASSume' that tho your mother doesn't have it, she may still carry the gene recessively... How it would go from recessive gene in her to dominant in you I dunno. In fact, it may not even be possible. You may have acquired IBD with or without any family history... Obviously, since genetics doesn't carry 100% risk, there are many folks with IBD who have no prior family history (my guess).
Whether you inherited the gene or not is moot, you have the disease. It may affect your children... or it might skip them completely. your own case is proof of that... else your mother would have the disease too. hope there is some sort of comfort to be taken from that.. fact of the matter is for all of us parents, the world is full of things we just can't protect our children from. IBD is one of them.

 

[coachvee]

Hmm.. back again & hoping that my account was deleted by accident..

 

[Kev]

Yeah, coachvee.. Our admin Mikryarmo posted a thread about this. Looks like it was a 'puter' glitch..