Hi, Just joined these boards today, I was diagnosed with crohns a year ago, after I seen my GP about abnormal stools, and loss of bowel control.

I'm on 2g of Pentasa granules twice a day which at first binded me and was an improvement, now for the past few months i'm flaring up every week for 24 - 72 hrs,  I also have anal fissures which often break on a daily basis.  As to my well being its up and down, I can go into work one day all well the next day I can feel absolutly awfull.  I'm getting a itchy pretty much regularly of late, waking up during the night raking the itch, Ive tried a couple of creams but they only cool the inflamation from scratching down.

The most worry I have is the fear of losing bowel control when no toilet facilities are not near by, and having lost control while at work on a number of occasions. It is embarassing for a 45 yr old man, and i've been close to tears for it.  I also have had to tell my Duty Manager so I can go home shower and change, I cant explain the feeling but I just want the ground to open up and swallow me.  Tiredness, is this also a sympton?, generally I sleep well, but during the day I become really tired and it hits me like a wall, normally between 12pm and 2pm, it does come in other times to.

Anyway thats me pretty much, I shall read through the boards, and hopefully have a chat with you guys.

Hi there, I am new to this too but thought I would drop you an email. I know the feeling of ok one day and rubbish the next it is not nice and you never know it is coming. Have you spoke to your doc about not being able to control your bowel? I know this must feel like the worst thing in the world and I really feel for you, I have learned to cope with it over the past 12 years. I would suggest maybe registring with the NACC, they have some great tips on there and also give you a can't wait card for when you are out in public toilets. Somedays I can go to the loo 20 times which obviously is frustrating but when you need to go you have to go. What about taking Immodium? I know its not a long term solution but may help you at work.

Fatiguge, tiredness is one of the biggest symptons of Crohns even if you get 12 hours sleep you can still feel tired, I struggle with this all the time. If you are well enough I find that exercise really helps with this, just a mild work out, or even a walk. Have they checked your iron? You may find your bowel can't absorb this and you may need supplements.

Anyways take care and stay positive know its hard.
Jo

Hi Jo, thank you for the info, I shall look into this.  Does the cant wait cards work? I'm not very well disciplined when its getting out and about doing exercise, I guess I'll have to make more of an effort.

Well they should but a lot of people do get embarassed using them, obviously there is nothing to be embarrased about but I know how some people can be and react to something they don't understand. Def look into the iron and also maybe B12 this is a big thing that people don't realise takes a massive effect if you are lacking in it.
Any questions just shout

Hi there meherwan, i no exactly what your goin through, and im a 42 year old women, ive had the accidents like in all places, ive now been told i have limited work capability due to this, also may i had you can get a radar key from your local council for about £3.50 ish this will give you access to all disabled toilets around, so you dont have to queue, and many places have disabled toilets, im actually goin throught the flare up like you  ie saturday ok saturday night started with the runs, all day sunday i was bad, monday i was good, today im has bad as ever again this is how ive been since August last year, im also on pentas, but mine or slow release tablets, sometimes i think they make my symptoms worse, anad the binding you talk about still gives me the pains, i havnt worked since last August, and im still not been 100% diagnosed, although they have found inflammation in my sigmoid, rectum, and caecum, < hope you can get yourself sorted with it all, but just to tell you your not alone, feel free to talk on here, or you can pm me if you wish id love to hear from you tc all xxxsuexxx

Just to update i've been to see my Consultant this afternoon. Refered for MRI scan on my liver, another colonoscopy, prescribed me some steroids to take for 6 weeks Budesonide 9mg 6mg and 3mg @ 14days retrospectively. Went to chemist to pick up, but because the doc had not described the form i.e. tablet, they couldnt prescribe as it also comes as an inhaler for astma (spelling).  Not to much of a problem as I have to go back in the morning for bloods.

Hi There

I would definitely advise getting them to check for vitamin b12 deficiency.  I had crohns for 12 years before they found out I was b12 deficient.  And i had to faint in the doctors surgery before they decided to test me for it!  It can be confused with Anaemia as it has similar symptoms - the lethargy/constant tiredness particularly.  It can be treated with an injection every 3 months - tablet form wont be absorbed in crohns patients.  I've been having the injections for about 3 years now and it seems to give me more energy, although you really notice it when it comes to the end of the cycle before the next injection!  Hope all your tests went well.

Katherine

Hi There,

My name is lauren and i am 19 years old. I have been diagnosed with having Crohns Disease for just under a year although i believe to have had it since i was 13/14.

The whole of 2009 was terrible for me, from being advised that my illness could have been cysts on my ovaries to thinking i possibly had cancer, it was eventually diagnosed as crohns. After receiving countless admissions to hospital, blood tests, X-Rays, Ultrasound scans, a CAT scan, a colonoscopy, and also an MRI scan they eventually took me in and operated.

I had a re-section done and in total they removed around 18 inches altogether and surgery took over 4 hours. I was in hospital for 5 days after op and took around 2 months to recover completely. I was put onto Azathioprine tablets but they havent had the greatest of effects on me. I was placed in hospital again a few weeks ago due to a severe chest infection. Due to the tablets my body couldnt fight off the infection. So now they have began to check for other complications.

I am feeling completely hopeless and i am constantly left feeling depressed with all of this. I am so angry at how long this took to discover. I have now been advised by my employers that they may pay me off?..Is this possible to do so whilst being given a sickline by your doctor and when they know my illness history and that it is a re-occurring problem?

Does anyone know if Crohns is classed under the Disabilities Act ?

Thanks x

So sorry to hear that you have been through to much at such a young age.  I think it may be an idea to contact your local Occupational Health people, they will be able to help you.  I can't believe that your employers can just do this.  Hope this helps and you feel better soon. x

Hi Linney x

Thanks x I have been put intouch with them previously but i felt that they werent very helpful, they just seem like they want to know info just to pass messeges back to my work, they didnt give me any advice at all x

so sorry to hear about it aswell, im in a similar boat about being annoyed about how long it took to diagnose. I got diagnosed early this year although i think ive had it for three years. First time i knew something was wrong was when i got an anal fissure roughly two years ago. (which is what i hate about my chrons the most) after this i was getting pain in my abdoman for 6 months in which i frequently went to the doctor until i had to go to hospital with burst apendix. For a year after my appendix burst i was getting diorreah, extremlly sore pains in my intestines and sick alot but when i went to the doctor i was told this was normal and it was toxic fluid which had came from my appendix despite me being sure it was something else. Up until early this year my gran paid for me to be seen by a private doctor suspected it straight away after me explaining everything i had been telling my useless doctors for 2 years and had me get tests done and i was diagnosed. I am so sorry to hear how you are doing. I was very poorly for most of this year so far but now seem to be getting better although im still very bad some weeks. i hope your health improves, im sure you will get better over the months and start to be able to enjoy life again. xx

also i know someone who has chrons in my town and claims incappacity benefits. I also looked into it earlier this year as i thought i may have to leave my job. There is a charity that will give you advice and help you heres a link for it http://www.nacc.org.uk/content/home.asp

here is the bit on it about benefits   http://www.nacc.org.uk/content/services/dla.asp

Hi there lizzie funny you should ask that question, ive just been laid of work today on the grounds of ill health due to reaccuring episodes in the future, i think they have said its covered under the dda but has im not able to carry out my duties, they can and have finished me, but i must say they have been very nice and supportive in doin it, ive been of for a year. im now on what the call ESA which the replacement for incapcity benifit, if you want to know anything else ask away and i will try and help if i can  keep in touch  xxxsuexxx

hi am new on here am havin loads of problems at mo regardin  bowel and sicknes for about 2 months now just had a stint in hospital and now am thinkin its crohns as my auntie had it am really worreid as suffer really bad with athritis and the docs think it might be a tablet side effect but am thinkin not so any help would be appreaciated thanks am really worried

Welcome both to the Crohn's forums. Here at least is one place you can talk about all the problems with Crohn's without fear of embarrasment or worrying people won't understand. I'm currently in semi-remission (touch wood) and so I'm not here as often as I was when things were worse but the symptons seem to be very up and down and when you're down this is a great place to come for support, advice and just people who know what the hell you're going on about

Nigel