Crohn's taking everything away from me

by Sarah
(Wales, UK)

Hi, I am 22 years old and i have recently been diagnosed with Crohn's Disease. I've had priblems with my bowel and stomach for a few years, but I have always been fobbed off by the doctors. They told me I had IBS, and then pernicious anaemia which i had a lot of iron injections for. Finally after years of pain, which made things really hard for me growing up and through my school life, I was sent to a bowel specialist in the hopsital. After a few tests, she told me i had Crohn's.

I was put straight on Pentasa, but unforunately it really did not agree with me. I put on a lot of weight in a very short space of time, and suffered from horrible heartburn, so much i visited the hospital on a few occassions. My specialist in the hospital is nearly impossible to see, and there is a massive waiting list. My doctor told me to cut out the medication completely, to which i did, but that made the symptoms of my Crohn's very severe. The doctors just don't seem to listen to me or my needs, and always fob me off. The only person who listens and tries to help is my specialist, but i just can't get to see her quick enough!

I feel like everything is being taken away from me, my life is being turned upside down. I work full time, and I am finding it so hard to hold full time work down. I have been with my boyfriend for four and a half years, and i feel like it is runing our relationship. I get really down from time to time, and sometime I take things out on him which I really don't want to. We have talked about strating our own family as well, but i am so scared to and don't think it is a good idea considering how ill i am right now.

It is so frustrating, i feel i can't accomplish anything i want to. It would be nice to hear how other people cope with Crohm's, and if anyone knows how i can get the proper help

Comments for Crohn's taking everything away from me

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cause found NEW
by: Trebor

having found the root cause a solution is now being worked on and should be on the horizon. Watch this space

cause found NEW
by: Trebor

having found the root cause a solution is now being worked on and should be on the horizon. Watch this space

Reply to my original post NEW
by: Sarah

Hi guys, thanks for all your replies. Sorry i haven't said anthing sooner had loads going on. Im on Budesonide at the moment now which isn't great for me either but im getting on with it. Ive really piled on the lbs now though, ive always been small its so hard for me to accept. I feel like a totally different person. The thing i think im struggling with most is i feel like its changing me inside and out (the meds and the crohns), and im really finding it hard to accept and if i cant accept it or accept me the way i am, i feel i cant expect anyone else to accept me. M boyfriend is always there for me, but it feels like we have really drifted apart and i hate being the 'ill' one all the time. Most of the time i just keep everything bottled up, i don't even mention if im in loads of pain most of the time cause i dont want people to think im moaning or anything. I think its hard for people to accept or try to understand cause its not necessarily something visible that you can see.
Its really good to come on here and hear stories from other crohns sufferers, and theres so much i dont know about it. The more and more i read and about the symptoms, the more i can relate to myself. Does any one know anthing about causes? No one in my family has it or any bowel problems. The only thing that stands out for me is i had Glandular Fever very badly when i was 15/16 and all my problmes started around then really and have gradually got worse. Thanks, Sarah xxx

living with crohn's
by: Anonymous

hi I was diagnosed with crohn's disease at the age of 11 and given 2 years to live have had many flare ups and hospital trips can't quiet get it under control but i am now 29 years old and i have a colostomy now and i lead a semi normal life so just remember just cos u have chrons doesn't mean it is the end of the world i know all about docs fobbin you off cos back in 93 crohns was pratically unheard of in young kids so don't give up

Hang In there
by: Anonymous

My Crohns has been seriously destructive for 10 years and ive got 180-250cm of short bowel left and permant colostomy. Its so easy to give up,new drugs are coming out and there are new trial drugs which ive had a lot to do with. Im come of PN and am eating again for the first time in 2 years. Im on Tiberal(Ornizole) which has done me the world of good. I know everyones different and crohns varys from person to person. I agree with the comments that if you don't trust your doc,look for someone else.I have done this with both my Doc and Surgeon. Please i beg you make sure Surgery is the last last resort. I had many ops to remove dieseased bowel and now looking back i don't think it was totally nessccary.

someone with crohns
by: donna23

I have had crohns for 2yrs an it dose feel like everything away but once you are on the right meds it will get better i couldnt work for 6month in ano out of hospital but now on infliximab ano im back at work ano feel nearly normal i hope you get some meds that work soon

The same for me!
by: Anonymous

I'm dealing with the same thing, but am 28! Dr.s not answering my questions and "fobbing" me off as well. Get a dietitian! That is what i just recently did, i haven't seen her YET but that was my next step. I had the same issues with my medication as well so diet and exercise are what they are telling me I need to control the Crohn's.

I know it's hard
by: Stacey

I was diagnosed with Crohn's 4 years ago. It is very hard to go to work everyday! I get so exhausted! Ask your doctor about Remicade, Humira, and Cimzia. They helped me for awhile, now I've been on Cimzia for almost 2 years with no flare-ups.Can't figure out how to help exhaustion though. Hang in there, be strong.

by: Anonymous

Hi I would love to recommend something for you all that my partner said helped alot. Please email me as I would love to help. x

by: Nikki

Hey im nikki im 22 and i found out in march of this year i had Crohn's disease. i went from being told i was pregnant at hospital for 3 days to transfer to westmead hospital and finding out in 2 days that i had Crohn's. Its been a very hard road. I was wondering where about you were as my mum is in the medical practice and i can ask her for names of the best and a few options around your area.

I do understand that whole medication. I came off the steriods a week ago and it turns out that my medication wasnt strong enough for my Crohn's and it flared straight back up.

I think if i was you i would find a really good gp for you because the specialist work with your gp to help normalise your life again.

My gp is amazing, as well as my specialist. I believe that it has alot to do with being heard and them listening to what you feel that makes my doctors that much better to see. Personally i believe if your gp isnt listening to what you are saying and helping id find another one.

xoxo Always Nikki oxox

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