i was diagnosed with crohns a year and a half ago.....i am finding life a challenge to say the least.....if anyone has any advice for coping with this i would be eternally grateful.....
karen xxx

Hi Karen
I am also new to the site. But have had Crohn's for the last 35 ys.  The best bit of advice I would give is to try and find a clinician who has a particular interest in the condition.  Also, check out the National Association for Crohn's and Colitis (NACC) web site.
Best wishes
Gary

Hi all, i need some more advice, i had my colonoscopy on sunday last week and was finally diagnosed with colitis, crohns had been mention when i went to see the gp, he said it was crohns colitis, which has confused me now, im waiting on biopsy results before they will start me on my medication, im also i bit more confused now, has ive rung my gp for my latest blood test results and they have come back fine, but my scope said it had found inflammation in my bowel, and colon, is this normal what am i to exspect , im very confused by it all Sue

Hi tattyted and nibbles,welcome to the family...

Tattyted,they have found your inflammation in your colon and bowel isnt normal,and they
will give you medication to suppress your condition.Although the blood tests are normal
they seem to have caught your inflammation early.Usually there are pitting on the walls of the bowel,like  measles which bleed and start crohns,but dont worry your in good hands
and they should have you back to normal soon,providing your medication takes affect.

good luck......David.

Thank you davie, im just so confused about it all at the moment, im so down and tired all thr time, all i want is to feel normal again.xxxxxsuexxxx

Wish we all could,life will never be the same again im afraid.Takes a long time to
adjust to this way of life.I was a very fit active guy,and now iam a shadow of my
formal self,very weak,constant pain,depressed,mood swings,anger and anxiety attacks
dont want company,hate crowds,feel cold all the time,skin conditions,very fragile in body
and mind......Medication side affects......but heyho thats life...

Oh dear i know that feelin already, can i ask you if this sounds the same has anybody, at the moment im having about 4/5 days out of the week where nothing stays in within 20 mins im on the loo in pain and also have the runs, but then for 2/3 day i can have pains but no runs, sometimes dont even go to loo and then all of a sudden im really ill again on day 3/4 and the whole process starts again, this is hows its been now for roughly 4 months. Please dont feel that you have to hold anything back, i would rather know now. Cheers xxxxxxxxsuexxxxxxxxxxxxxx

Hi again, i can only tell you that you will lose all your dignity now the flairup has taken hold.
While you are in flareup,make sure your not far from the loo.The bowels are trying to
continue to perform,but the crohns flareup is blocking your passage,causing mucus,blood
and explosive gas.Its not nice,and i think worse for a woman,more embarassing.
There will be times when you go and nothing happens,except gas,then tummy pains,more
excruciating that will double you up,cause you to feel nausius,sick,dizzy.You will cry with pain,its not nice.Make sure your family and friends know what your going through,they need
to help support you,and understand your needs.When you go out,make sure you know
where the toilets are,you will visit them often.Iam afraid this can change your routine
forever.We are here to help you through this.We are friends.....David.

Thank you david, youve helped alot already, ive had a few embarrissing times already, your right dignity goes through the doors doesnt it, my family are doing well at understanding my needs, i have to tell, i once went on the train to manchester to get some shopping from primark, i like the train cos theres a toilet, paid my money, got on the train , the train set off, and i thought oh dear didnt notice which part of the train the toilet was, so off i went looking for the loo, OMG when i found it my heart sank The toilet was out of order, i just stood there and that my world had ended, needless to say i got off at the next stop and waited for the next train home, making sure the loo was in working order, so my shopping never got done and till this day ive still not been to primark cant make that journey yet, Your so right about life never bein the same,My work place has asked for my permission to contact my dr for a medical report, i work in a shop so not sure if they are thinking of finishing me on ill health grounds. least of my worries really. but ive been unable to make work for nearly 3 months this time the last time it was 9 weeks, i understand they need someone thats realible, and this disease doesnt go with bein realible does it,.keep talking to me david your making a big differenceXXXXXXXXXSUEXXXXXXX

Thanks for getting back,glad your family understand about your condition.Your story is
a reality of what we all have to endeavour in our new routines,and not everybody sees
it that way.I had a bad time 2 years ago,during nov 5,i dread this time now,and after
being in hospital for 10 days,my partner picked me up,and we made our way,20 mins into
the countryside.All of a sudden i needed to go,stopped the car,jumped a gate into a field,
but was too late,soiled my trousers,shouted to my partner for some wipes,she had to see
me half naked in a frosty field,excrement everywhere.Managed to get cleaned up,unaware
that a farmer in a tractor had seen everything,and was angrily sounding his horn and waving.I managed to sit on a binbag to get me home,very distraught.
We laughed after,but not nice for anyone to go through....
regards .....David.

Oh, the story of Crohn's.  I am usually pretty controlled, I've figured out my meds and supplements to at least have soft formed poo. But yesterday my hubby and I went out of town and I ate junk food most of the day.  Then I was tired and didn't want to get up to take my nighttime dose of colestyramine for the bile acid.   Consequently, I have been porched 10 feet from the pot all day long.  
It's my own fault, but sometimes I get stubborn and think that I can control things, and I CAN'T.  

I have a problem with bile acids.  I can take my calcium carbonate(absorbs liquids) during the day and take colestyramine (to slow bile acid reduction) at night, and 1 previcid to slow stomach acids and I do pretty well.  But if I skip a dose....I pay the penalty.  

I get tickled how you said we lose our dignity.  That's flushed right on down to pot isn't.  I have so many PMPP (poop my pants in public) accidents that's it old habit with me.

Good luck all.  

hey tattyted phone your local council office up and ask for a RADAR KEY that will give you access to all disabled toilets in the country and saves you queueing  and asking for a key or looking for 20p, hang on in there all as these good peeps know adjusting is the name of the game and we are here to help also try crohnszone thats another informative site ok good luck and chin up  xx

Thank you crohnspoof, and buzzy, this is gd to hear, as you will be aware when your new to this, is just seems like its just you goin through it, and you are all making me feel like well hang on its not just me, other peeps r the same, and although i know we are all individuals and things can be different there will always been a common point (POO) LOL can i ask is everyone still working or not, or were they working and had to give work up, or has your work place been supportive with your needs. Im asking this as ive been off work now for 3 months and not showing any signs of returning yet, they have asked for permission to look at my medical records, just wondering whats that all about. Cheers all XXXXXSUEXXXXXXX

hi sue am afraid cant help you as i have been out of work due to ill health as i'm severly disabled due to other conditions for nearly 20 years and before that i wasa industrial chemist mainly research so cant help but weis here to help in any way we can take care and carry some wet wipes very handy L.O.L. xxBXX

Hi Sue

Sorry to hear that you are going through a rough time at the moment. I am also and have been off work for 2 months now, due to have an op in 2wks.  I'm not sure if your employer can actually request to see your medical notes at this stage (I think 3 months isn't long enough), contact CAB and check.  Is your boss being very sympathetic?  My was originally but I think they are getting fed up and want me back asap and are already telling people that I will be back after Christmas.  Realistically I should be back then although my surgeon did say it could take up to 3 months for recovery, depending how I get on (I'm having a small bowel resection with a large amount being removed).  I feel guilty enough as it is but don't want to be pressured, just makes me want to quit my job, but that isn't a financial option for me.  Anyway, hope all goes well for you.

Kind regards, Lou x

Lou Hi hun, my manager is being very gd with and so is my asst manager, my manager has a relative with the same, so from that point of view he understands, but ultimatly its no down to them is it, the powers above always rare the ugly heads and make decisions, they havnt said anything about finishing me, and i havnt heard of them saying anything to anybody, but its a doubt thats in the back of my mind. My absence this time is three months, but i have had a previous absence with something they are hopefully connecting with this illness, that was 4 monthe earlier for 9 weeks, to be honest the way i feel at the moment i havnt got the energy to fight it anyway, if thats there decision, then so be it. my only thing on my mind at the moment is trying to get some sort of normality back in my life. Ty lou message me anytime XXXXSUEXXXX

My husband and I are both retired (9 years ago).  We were self employed which made things much easier on me.

It makes no sense to look at your records though, unless they have to have a legitimate reason to let you go, or remove you from sick leave.  
Have you inquired about their inquiry?  You should do that.

Crohn's has no mercy on the working!  With the stress of lack of employment and jobs out there, it makes it doubly bad to have to take time off.

Hang in there Sue.    

hi....has anyone else been in the position where nothing works???  i have been in flare up for nearly 2 years with no reprieve...i take azathioprine and thaparacetamol and tramadol....my stomach lining is so sensitive just now that i feel like my insides are on fire....i cant eat but its through me within 10 minutes......about six months ago i was so constipated all the time and now i cant stop going to the loo.....my consultant thinks all the pain and weird symptoms are in my head......
im desperate...all i seem to do is lay in my bed and cry....i have been admitted to hospital over 60 times in the last 2 years...help please

We wouldn't want to give medical advice, and can only speak through our own pain and experiences.   I currently take azathioprine for inflammation and to help keep my flares at bay.  The paracetamol (acetaminophen/tylenol) is for pain.  I wouldn't think that would relieve very much gut pain, or if any.  You may want to watch the intake of paracetamol because can be toxic to the liver if taken in high doses.  Tramadol is a narcotic like pain reliever for more severe pain and can be habit forming.  If you have been taking it for a long period of time, you can also suffer withdrawals when stopping it.  I'm not sure why you're taking both.  

It sounds like you may have a couple of issues going on.  One being your stomach, the other your gut.  

I would recommend (if it's possible) to obtain another consultant.  If you are not happy with your health care, see if someone can recommend a consultant for you.   I'm sorry that you have been in the hospital so many times.  That's not a good thing at all.  

Hi nibbles40,

Sorry to hear you have this nasty illness, the best advice i'd try and give is stay as positive as possible, which at times is easier said than done, believe me i know, keep as fit as possible, even if it involves going for short walks, or as far as you possibly can handle, which i find really helps me, take care

Hi Sue

I've been diagnosed for over a year now, have probably been off work for about 6 months with flare ups, medication side effects etc.  The company i work for are pretty good with me, because we have this illness your employer has to class us as disabled employee's, and you are protected by the disablility discrimination act. Hopefully your employer just wants to look at your records to determine for themselves if you have a disability or not, but your right being skeptical about it, are you a member of a union? if you are contact your union rep and speak to them about it.  If not i would definitely go to citizens advice and they will give you all the info you should need i.e. what your employer can or can't do. Take Care