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
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.
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.
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
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