Crohn's disease 

Introduction 

Crohn's disease

Crohn’s disease is a chronic (long-term) condition that causes inflammation of the lining of the digestive system. In this video, an expert discusses the symptoms and treatment options for the condition.

Media last reviewed: 14/05/2013

Next review due: 14/05/2015

IBD or IBS?

Conditions that cause inflammation of the intestines, such as Crohn's disease or ulcerative colitis, are known as inflammatory bowel disease (IBD).

This should not be confused with irritable bowel syndrome (IBS), which is a different condition and requires different treatment.

Digestive health

Find out how to beat common digestive problems like bloating and indigestion

Crohn's disease is a long-term condition that causes inflammation of the lining of the digestive system.

Inflammation can affect any part of the digestive system, from the mouth to the back passage, but most commonly occurs in the last section of the small intestine (ileum) or the large intestine (colon).

Common symptoms can include:

  • diarrhoea
  • abdominal pain
  • fatigue (extreme tiredness)
  • unintended weight loss
  • blood and mucus in your faeces (stools)

People with Crohn's disease sometimes go for long periods without symptoms or with very mild symptoms. This is known as remission. Remission can be followed by periods where symptoms flare up and become particularly troublesome.

Read more about the symptoms of Crohn's disease and diagnosing Crohn's disease.

Why it happens

The exact cause of Crohn's disease is unknown. However, research suggests that a combination of factors may be responsible. These include:

  • genetics – genes that you inherit from your parents may increase your risk of developing Crohn's disease
  • the immune system – the inflammation may be caused by a problem with the immune system (the body's defence against infection and illness) that causes it to attack healthy bacteria in the gut
  • previous infection – a previous infection may trigger an abnormal response from the immune system
  • smoking – smokers with Crohn's disease usually have more severe symptoms than non-smokers
  • environmental factors – Crohn's disease is most common in westernised countries such as the UK, and least common in poorer parts of the world such as Africa, which suggests the environment (particularly sanitation) has a part to play

Read more about the possible causes of Crohn's disease.

Treating Crohn's disease

There is currently no cure for Crohn's disease, so the aim of treatment is to stop the inflammatory process, relieve symptoms (induce and maintain remission) and avoid surgery wherever possible.

The first treatment offered to reduce symptoms is usually steroid medication (corticosteroids). If this doesn't help, medication to suppress the immune system (immunosuppressants) and medication to reduce inflammation may be used.

In some cases, surgery may be needed to remove the inflamed section of intestine.

Once your symptoms are under control (in remission), further medication may be needed to help maintain this.

Who is affected?

Crohn's disease is a relatively uncommon condition. There are currently at least 115,000 people living with the condition in the UK.

Crohn's disease can affect people of all ages, including children. However, most cases first develop between the ages of 16 and 30. 

A large number of cases also develop between the ages of 60 and 80.

It affects slightly more women than men, but in children more boys are affected than girls.

The condition is more common in white people than in black or Asian people. It is most prevalent among Jewish people of European descent.

Read more about treating Crohn's disease.

Complications

Over time, inflammation can damage sections of the digestive system, resulting in additional complications such as narrowing of the intestine (stricture), or a channel developing between the end of the bowel and the skin near the anus or vagina (fistula). These problems usually require surgical treatment.

Read more about the possible complications of Crohn's disease.

Page last reviewed: 20/05/2013

Next review due: 20/05/2015

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Comments

The 46 comments posted are personal views. Any information they give has not been checked and may not be accurate.

johnboy45 said on 31 July 2014

I remember reading a lot of these type of comments 3 years ago when I was first diagnosed. Since then I have had 5 operations , spent 4 months in hospital and at the time felt that the future was bleak. However, I had a resection 2 years ago and have not looked back.

I am a teacher and have not had a day off sick in those 2 years and for the most part have felt great. I take a little medication, Loparamide being the main one to control my digestive system, but I see this as a small price to pay when it enables me to live a normal life.

I know that in all likelihood I will have another flare up but I just wanted those that may be in the early stages to hear that it may not be the end.

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Skyemist said on 28 June 2014

Hi I am almost 60 and was diagnosed with Crohns disease in April 2012. I was put on Pentasa along with steroids which seemed to help. In June I developed gout in my right foot and roughly every 2 weeks it flared up and had to get injection to relieve pain which was awful. One dr refused to give me injection and put me on Tramadol 8 per day along with 8 paracetamol for 3 weeks. The result I became constipated. Things have not really been good for me since as I suffer from bypass diahorrea. In December I was put on Azathiaprin and felt sick all the time. Went back to GI in Aptil this year and was taken off them. Had another colonoscopy in May and was given Pentasa suppositories and enemas and strong antibiotics as I had an abscess. I thought that having the colonoscopy would solve all my problems with the bypass diahorrea and last week back it came again. I was on a low fibre diet due to Crohns being active.Dr gave me Movocil which is only slowly working now. Have not been out of the house since seeing the dr last week and a few times I have been feeling a bit strange . I feel shaky and really tearful and can't be bothered doing anything . Got the dr next week but feel a bit silly asking her as I am normally a very upbeat person. My husband is going through treatment for Prostrate cancer so maybe it's just a culmination of everything. Reading everyone's experiences on here I know I have been lucky. Any advice on a diet for this disease will be really appreciated. Thank you.

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Thepursuit4health said on 09 May 2014

Hi All, diagnoised with a rare form of chrons in the mouth when I was 11 now and its progressed into the stomach in 4 different places. Pretty much destroyed my old life. Just trying to rebuild my new life to live with the changes. I just wanted to say ive seen alot of people generally online saying about issues with testing and medication. I have been battling with my consultants all this time to agree to other meds, allow me to stop steriods, test me for the chrons developing and generally getting theyre help.
So i just wanted to say stay strong! Be peristant! and go onto these docs until your heard, and listen to your own body, after all they arent the ones dealing with it u are! Last yr I went to docs once a wk for 6 months to get tests done! And if u believe u may have a problem see the doc, ask them to explain why it isnt the condition your concerned about! Good luck fellow sufferers and chin up!

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Sharonm59718 said on 30 April 2014

Hi everyone, I could use some support through this. I'm a 41 year old female and just got discharged from the hospital yesterday after spending 5 days in there at which time I was diagnosed with Crohn's. I'm glad I listened to my body last Thursday night and went to the ER! I had a peritoneal absces from so much inflammation, thankfully small enough to not require surgery but treat with antibiotics (Amoxicillin and Metronidazole) along with a steroid (Prednisone). My CRP levels were at 98, SED rate was at 57, white blood count was at 19. No wonder I was a hurting unit! Well, now I'm home and supposed to be allowed a full liquid diet that includes some cream soups, ice cream, etc. I'm finding that if I go outside of the clear liquid diet I start vomiting. Is this expected? How long will it be like this? Will I ever be able to eat "normal" again? I can't believe I can feel this crummy yet want to devour a pizza. Any options for clear liquids besides broth and jello? Thanks

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kittykat999 said on 19 March 2014

To all,
Check your vitamin D levels.. new research is showing that a number of symptons in the blogs are vitamin d related... check you are also not allergic to vitamin d tablets when taking.

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BlythCrohnie said on 25 February 2014

I have been diagnosed with Crohn's Colitis since 2009 (29yrs old).
Since then I have been on a bit of a rocky road and have had trouble with keeping my Crohn's stable, I have been on Pentasa which didn't work. Azathioprine I reacted to and made me vomit, apparently it either likes you or hates you and it hated me.

I have been on Humira for the past 2yrs everything has been going until I flared in Oct'13 and haven't been right since. I have also tried the likes of aloe vera juice but this didn't do anything.

I would suggest people with condition make sure they have good support from IBD Nurses and GI's, one thing that helps me during a flare up is to go onto a sloppy diet, soups, jelly, ready brek etc.

I hope a cure is found soon to put an end to this.

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Dom2014 said on 31 December 2013

I was diagnosed with crohns disease when I was 13, my mother did not want me to take steroids at such a young age and therefore I was given a elemental diet which settled my crohns until 9 years later. At this point I was ill for over 2 Years and given every drug possible until there was no options but surgery left. I decided to see someone privately as the NHS would not let me try em elemental or diet route under them. I started an elemental diet for 2 weeks until my symptoms had subsided, I then introduced one food at a time until I reacted to a food. It turnt out wheat and gluten upset my crohns. Now a few years on a gluten and wheat free diet I got married and had a baby boy. Something I could not of done as I was so ill! I advise everyone to check out the diet root before having any surgery or taking any harsh treatments. Some of the things I tried were horrible with horrible side effects I just wish I had found the diet route before taking these.

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Feelingbetternow said on 14 December 2013

I was diagnosed with colitis when I was 12 but after many resections, stomas and an eventual pouch I have been told that I have crohns. No matter really I am 51 and have two adult children and an understanding husband. Each of us will have different stories but those of you who have recently been diagnosed I encourage you to remember that though a difficult disease to deal with you can and will have a life, adjusted to accommodate crohns, just like anyone else. Be thankful that it is something you are able to live with and not a death sentence. Remember that a positive attitude is invaluable for your well being and those around you. I wish you all well and hope you feel better soon. X

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happytobealive said on 07 November 2013

Hi
At the age of 23, I was misdiagnosed in 1996, as having endometriosis. The disease flared up again 4 years later, and following 2 months of very little help from my gp and considerable pain, weighloss and endless trips to outpatients - to what we now know to be the wrong department - I was finally admitted to hospital.

I lost a tremondous amount of weight, and felt very lethargic all the time. I could barely sit upright.

I spent almost 7 months in hospital undergoing 2 major operations to remove bowel, a colostomy and ileostomy bag, and various ops inbetween to drain a huge abcess that developed on my right hip and which then connected to my bowel forming another fistula.

Quite possibly the worst time of my life, and not one I would wish to repeat.

However, my surgeon was fantastic and had so much faith that I would make a great recovery.

I am now 40 years old, married with 6 year old twin daughters. I have not needed to take any medication in that time and my stoma was reversed 6 months after the last op. I live a happy active life, and feel grateful for every day that I have not had a flare up, but am not stupid enough to believe that I am cured.

It's always at the back of my mind that one day it will return, or worse, I have passed it on to my children,

If I could give anyone one piece of advice, it's to be honest and open about it to friends, family, colleagues, as I understand the embarrassment that you feel. It's somehow makes you less self-conscious about it. I hope that one day a cure will be found for this truly awful disease. Anyone who is waiting surgery, I wish you all the luck and hope you have the outcome I have had.

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anotherguywithcrohns said on 23 October 2013

I have been being treated for ulcerative colitis then crohns for the last 5 years, the first 2 years were absolutely the worst 2 years of my life without question, it took them at least 2 years to diagnose correctly.

I am currently on azathioprine and expect to be prescribed steroids if I have a flare up, my recent tests have come up with low activity yet I am still experiencing all of the major symptoms except blood, they now think that I may have IBS as well as crohns.

I have been on a modulen IBD powder diet for the last 75 days, no solid food, only water to drink, this might sound harsh but after 3000 days+ of any food going in = pain coming out, modulen is a much better prospect than food.

I am constantly tired, physically/mentally, I either feel sick or have stomach cramps and a general 'not well' feeling + all the porcelain problems we all suffer.

I'm shocked at how the nhs operates on fundamental levels with treatments of any sort but specifically with sharing information between departments, my dietician for example couldn't access my notes for the crohns, which has caused no end of anxiety due to their not understanding that crohns is a form of colitis, I hate confrontation specifically because it can affect the condition and I just don't have the will to fight.

When initially diagnosed as not having cancer (as opposed to being diagnosed with something) I was advised to eat normally while the specialist waited over 6 months for the condition to progress during which time I wasn't receiving any medication at all, food should be the first place that they look, clearly you shouldn't starve yourself but there are certain foods that may trigger your condition or point to other conditions which are similar, so do your research on foodstuffs and rule it out quickly, dairy, gluten and insoluble fibre can all cause issues! Steroids and the other drugs may help ease symptoms but aren't always the only answer, adjusting your diet may help.

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leannemh2013 said on 05 September 2013

Hi am 26 i hqve suffered with what they said was ibs now they are testing me for crohns as its getting worse and the tablets am on dont seem to be working as i stopped taking them and started drinking aloe vera drinking gel ive been on it for over a week now and i can see a big change in my stomach is it is to clean out your digestive system up to now it seem to be working can help to rid of ibs and crohns al together its around 20 a bottle will comment again in a few weeks to let you no how i am getting on thanks

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rachieebrowneyes said on 30 August 2013

Hi im a 21 year old female and I was in the hospital today and they suspect I have crohns disease but are running tests to confirm it ive never heard of this until now I sufferwith extremly bad aches and pains and my bones grind when I move and you can physically hear the movement and clicks. I have also gained weight in the past 2 years and suffer badly from strech marks the consultant told me that these are all common signs I have a lump on the back of my neck and scans have showed nothing on them im very overwhelmed by all the tests I have gone through today alone and the ones ive been booked in for can anyone please tell me what tests you went though id be very grateful I feel soo confused xx

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Beckii92x said on 14 August 2013

Hi! I've been diagnosed with crohns since the age of 12, I'm now 21, it has been nothing but hell for me, over the years I have tried pretty much all medications from steroids to pentasa, moduline, azaphiaprine, etc when I was 15 my doctors put me onto infliximap, which for roughly 2 years helped dampen down my symptoms but never put me in remission, I then had a huge allergic reaction to that medication and my hair fell out, since then (about two years ago) I've been on and off steroids as I've had a constant flare up for two years I used to weigh a healthier 10sr but I'm now 7st 10..., now my doctor is suggesting humira which is similar to infliximap or if that doesn't work surgery :( anyone else on humira??
Hopefully they will find a cure for crohns one day as people don't truly realise what a dibilitating disease it can be.

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Char92 said on 12 August 2013

I've been diagnosed with Crohn's disease since 2009, when I was 17. 4 years on nothing has really changed. I've had a numerous tests & tried pentasa and a steroid which didnt really do anything. I'm seeing my specialist nurse at the end of the month to see what other medications I can try. I'm also seeing a dietician & on a special drink to try and put on some weight. I have pain everyday, but I try and live my life to the full. I work full time as a dental nurse & have just got back from a girls holiday. I try and stay positive & not let this illness get me! It is a awful disease & I hate living my life with it everyday as no one else really understands it, but you just have to try and get on with it! There isn't a cure but hopefully they will find one in the future! xx

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emogirl89 said on 29 June 2013

My fiancé has had crohns since he was 14 and is soon to turn 25. At the moment he is having a flare up and has food poisoning but I'm not sure how to help him. Any advice?

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chelseas said on 10 June 2013

Hello everyone,
I am currently going through tests to see if I have chrones.
When you were being tested did it take a long time ?
I have had loose stools my whole life I am now 22. I keep getting told its IBS so I didn't return to doctors for about 5 years. Now they are only testing for chrones...
I have good days and bad days. Times when I lose lots of weight for no reason and times when I feel so down I cant get out of bed.
I was wandering if anyone kept being told it was IBS when it was worse ?
Chelsea Smith

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Rebecca1991 said on 24 May 2013

I can compleately understand where your all coming from an reading of your experiences an symptoms has helped me come to terms with why i have the same weak feelings with walking sleeping etc i'm 21 an have been diognosed with crohns disease yesterday an i still cant come to terms with it i dont want to an currently cant come to terms with it being in hospital it feels life destroying really an to know its a life long perminant Disease its more of a problem an a bigger deal than what people make out you can mearly treat the symptoms not stop them an their is no gaurentee that it'll even work :( my heart goes out to everyone else like myself with this condition an i just hope soon one day they'll find a cure.

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carlcrohns said on 17 March 2013

HI nikkistar - I want to give all crohns sufferers hope. My name is Carl 40 years old - I have had crohns in my teenage years but diagnosed at the age of 27 with all the usual symptoms. Don't let the condition beat you. I went to university and have had a 15 year career with the police force so don't let this condition beat you. I was placed on steroid medication (prednisolone) for 3 years. My condition worsened over time resulting in surgery to remove the illum, descending colon and a bladder fistula repair. This proved to be the best decision as it gave me 7 years of trouble free from crohns. until now as I appear to have a stricture of the bowl which may need future surgery.
what the consultants don't tell you - medications don't actually cure crohns disease there merely relief the symptoms and this is often short lived. steroid treatment like prednisone has resulted in me having week bones which is a common side effect. so long term medication is really not the answer. Dr are pushing anti TNF drugs like Infliximab - be very cautious about these drugs research the side effects which are often more debilitating than crohns itself! The USA medical council have recently issued health warnings for the safety of this drug. should only be used as last resort in my opinion as it causes several cancers etc.
My advice - eat a low residue diet (google it - basicaly no fibre). keep a health nutrition with carbs and protein and vitamins.
There is a cure for crohns disease - check out work of Professor Herman Taylor and Map bacteria which is causing this condition. There is treatment to cure it in Astralia where I am heading - see Professor Borody - who has successfully treated patient with antibiotics to complete remission for the past 12 years. see the youtube interview and make your own mind up!
Its a shame that the Nhs are 10 years behind and this treatment does not appear to be available in this country. take care of yourselves x

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NikkiStarr said on 08 March 2013

Hi I'm Nikki 19 and was diagnosed with Crohn's in June 2012. It hasn't even been a year and its been nothing but a living hell. Because I had been having frequent flare ups since the age of 14 I agreed to go on azathioprine straight away. This resulted in me having pancreatitis after taking it for only a few weeks. I was hospitalised for three days and told to no longer take it. Since then I haven't been on any medication and have continued to have more and more complications. I am only 19 and I now have anaemia, vitamin D deficiency, suffer from severe fatigue, have constant aches and pains, have everyday discomfort (toileting), have frequent bleeding, and very irregular toileting. This has resulted in me being sacked from work. And I'm really struggling to cope both mentally and physically. I feel uncomfortable at the thought of working as working on a morning is like waiting for a bomb to go off as I never know when I'm going to need the toilet. That then results in colleagues asking questions which makes me very embarrassed. I feel like I do nothing but waste days in bed because I'm so tired I can't physically get up and when I do I just feel awful. My consultant wanted me to start taking steroids but as I'm already struggling to lose excess weight I refuse to make myself any more unhappy than I already am. My mam also has Crohn's and after it nearly took her life when I was very young and seeing what the medications did to her I am very cautios when it comes to taking medication. Knowing that this disease will never go away I am struggling to deal with everyday life as the symptoms just seem to be one after another. Does this disease ever stabilise? Does it ever get better? Will I ever just feel normal again? I just wish the symptoms would go away. I can deal with the pain it's just everything else that comes with it.

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saz2222 said on 10 January 2013

I started with my Crohns when i was Just 12 years old, it took the doctors till i was 16years to diagose me as they kept telling my mum it was teenage anorexia. By the time i was 17 after trying all the medications and drinks they could offer me i was admitted in july 2001 with a very high temperture after a week of investagations they decided to operate and when i woke up i was faced with my worst fear. The hadnt been able to save my bowel and removed it. I now have a perment illoestmoy that i will have to live with for the rest of my life.

Im 28 now and to be honest its not that bad, i have to watch what i eat still and be carfully not to let the bag inflate but other than that im better than what i was when i was 16. I never told anyone my story but living with the illoestmoy isnt that bad. It takes alot of getting used to and ive still never really spoken to anyone or told anyone about it, ive had sexual partners but ive never felt close enough to tell someone yet. But thats a hurdle i will overcome Im not ashamed or embrassed. Im happy to be healthly ive not had a flare up since my operation although when the winter virus is around im bed ridden. Stay postive its not that scary !!!!!!

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hammers50 said on 20 November 2012

I am now 49 and i have had crohns disease since i was 13.I have had 3 operations where parts of the bowel has to be removed.I am the only one in my family to suffer from this.Both my parents are fine and i am the 2nd oldest out of my 4 sisters and 1 brother.For some reason i was quite abit shorter than my sisters and brother , I am 5'1 and the rest are between 5'5 and 5'11.It took a year to find out what was wrong with me has i wouldnt eat.I thought that if i didnt eat it wouldnt hurt i was 13 at the time.I ended up with being force fed by drips.I still get flareups to this day and the consultant has told me that if i need another operation then i would need a bag which i dont fancy.I have had alot of different medication but still get flareups.I try to stay away from Queens Hospital in Romford has it isnt good.I actually go to Basildon Hospital.I have had all the tests and xrays but it takes a couple of days to get over them.I also suffer from arthitis lower spine problems and the chronic having to run to the toilet is bad.Sometimes between 10 /15 times i can handle it better now though.

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tj17 said on 10 November 2012

I was diagnosed with Chrohn's when I was 35 Im now 48 had afew flare ups over the years im on Pentasa for mine which helps.
When I do have flare ups i usually take Codeine these help also.
I guess im quite lucky with mine i still eat currys and dairy but try to keep it in moderation...I dont tend to let it rule my life if i can help it.
I just wanted to pass my opinion on to others maybe im just one of the lucky ones who dont get symtoms too often........i do find also that if i get stressed it brings it on aswell:-(

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iamzakaria said on 20 August 2012

Evidence is mounting that Crohn's disease is not an autoimmune disease, but an immune response to a bacteria - most likely candidate being? "mycrobacterium avium paratuberculosis", responsible for "johne's disease" in cattle and other mammals. Look up Prof Tom Borody from Australia and also Prof. John Herman-Taylor. Borody invented the triple antibiotic therapy for helecobacter (stomach ulcers).
----
http://stomachpainafter-eating.com/

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MattChurchill said on 30 June 2012

Hello, I am Matt , I am 21 and I was diagnosed with Crohn's a year ago. I was in my Basic Infantry Training for the Army at the time, so I was enduring constant mental and physical stress. I started to get symptoms within the first couple of weeks, starting with inflammation of the eyes - uveitis. This was accompanied by weight loss, the need to constantly open my bowels, joint pain, headaches, tiredness, I lost my appetite and many more. Most of the symptoms I put down to the training and ignored them, I carried on for 13 weeks. I decided to go to the Army doctor about it all, also because I caught the flu. I was admitted to hospital in November 2010 where they assumed it was Crohn's but had to wait for test results. I was diagnosed with Crohns in 2011. Following this I was medically discharged from the Army and I was in a bad place. I decided to go to Australia and travel, after about 6 weeks of being there, I got ill with my crohns and the fear of being admitted into hospital the other side of the world on my own convinced me to come home. Since I have been back, which has been from January 2012 I have had a few flare ups. I am currently going through one now, I am on azathioprine and some other drugs.

So other than now not being able to retain an active lifestyle as doing to much exercise makes me ill, I find it incredibly hard to keep fit, my weight fluctuates constantly, I still haven't mentally got to terms with not being able to be in the army and having crohns disease and I would even say I have forgotten what it feels like to be happy.

I have been reading through everybody else's comments, and I dread surgery. It would kill any confidence I have. I have started a new job, its office work which really isn't my thing but if I want any sort of career it has to be something that isn't physically or mentally stressful.

I just want my old life back, as this one now seems to be full of rapidly closing doors and I don't know what to do in general.

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amberbamber said on 01 June 2012

Hi Jedi74.....I have just read your entry and I can fully understand how you feel as all the awful things that you are experiencing, I have too.......and still am.
What I would suggest if you feel that your doctor is not listening to you, is to try and get another doctor at a different practice or if possible make an appointment to see a Gastroenterologist privately which I know will cost you a bit....but if this means that you can sit and talk to someone who will listen to what you are telling them and taking note of what you are saying then I am sure it will be worth it in the long run. I am Epileptic too and I eventually had to do this to find a Neurologist who would find me the right drugs for my condition.
I really do feel sorry for anyone who has a doctor that is ignoring the patient's information they are giving.....I would personally feel like screaming at the doctor until he did listen to me.
When I was diagnosed with Crohn's Disease I can clearly remember asking the doctor 'How long does it take to go away?'.....he then sadly replied 'It won't'.........this answer made me feel physically sick!
Please consider what I have said as I really do think it could be the answer to your problem.
Hope things get better................................................

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Jedi74 said on 31 May 2012

Hi I have read all of the comments already left on this page and can relate to most if not all of your previous comments, I too have had bowel problems etc now for over two yrs, I have had all the cameras etc but to no avail, I have recently had a barium meal and am awaiting results no consultant or gp as mentioned crohns to me but I have a friend who suffers with it and a family member and everything they have been through I have or am myself I am almost certain this is my case I have just been released from hospital with thrombosis hemoroids and personally think this is related to the dozen times a day I have to rush to the toilet, fatigue, weight loss, insomnia, hematura then periods of weight gain and feeling fine then a few weeks or months the weight loss starts and the trouble begings yet again I know personally there is something majorly wrong with my plumbing works although my GP just fobs me off, with prescriptions for other things, I am now at my wits end and very depressed its causing me problems at home & work my mood swings are unbearable and have now lost my long term partner as well as my job due to this although my ex partner bless her is still my friend and wants to stand by me, I just need somebody to speak to and a definitive opinion off somebody who knows what their talkin about if anything to just give me a 2nd opinion and piece of mind, as the weeks, months, years pass this process seems to be getting worse and my flare ups more frequent is there anybody that can give me information on who I can contact for help on That matter would be greatly appreciated. Yours despairingly Jed Camilleri :-(

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amberbamber said on 26 May 2012

Hi there... I was diagnosed with Crohn's Disease in 1999 and as yet I haven't had no operation other than that for an anal abcess... Ouch!!
Since then I have had 2 huge flare ups and my last one forced me to give up work as it was just impossible. I am currently suffering with inflammation of the stomach and my doc' has put me on FORTISIP drinks which are totally horrid and very sickly......but I shall try and give them a go. I am currently taking Omeprazole/Tegretol and Azathioprine.
Personally I don't believe that there is anything that can help long term as the Crohn's will flare up when it wants... but I have learnt to tolerate it as well as possible... Anyone else out there who is experiencing these symptoms will get good periods of time when they will get good, long periods of feeling very very well.

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lotty89 said on 24 May 2012

i have just been diagnosed with crohns and the thought does get me down. my dr has told me medication wont prevent flare ups it just makes the gap between flare ups longer. i worry one day i may have an opperation. is there anybody out there who hasnt needed an op.

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Foxyhen said on 28 April 2012

Goodness - not a great picture painted so far for any unfortunate person recently diagnosed! Perhaps I can add some perspective that might be a little more helpful!
Crohns can be awful to live with, but the reality is there is a heck of a lot worse you could be diagnosed with. You've a life ahead of you and that's more than some. I was diagnosed at 11 yrs old - I'm now 35 so that's a fair bit of experience! Diagnosis is often the hardest thing. Drs are often too rushed/inexperienced in the field to understand it. In my case my poor parents were labelled neurotic (!) but my dear mother persisted. I was sent to a child psychiatrist (apparently I was making the pain up!!) who quickly informed the drs to do their job! Life was tough, I was a teenager and no boy was interested in a 5.5 stone skeletal girl who kept rushing to the loo! However, once again, there's more to life! I learnt to cope, I learnt where all the public loos were on any route I took! I had surgery - two bowel resections, I've been on many trial drugs over the years, steroids, elemental diets etc etc. Crohns taught me to be strong and determined, and to not let it beat me. I missed so much secondary school but by working hard and revising at home and in hospital I passed all my GCSEs. Later I met a man who loves me, even with my Crohns (!), and got married. I went into remission after my daughter was born and was even drug-free for 8 years (!), and I also had a son in that time. At 34 I decided to go to Uni to follow my dream of being a teacher. I'm experiencing a flare- up now due to the stress involved, but I'll tell you what - it's not going to beat me! I was straight on the phone to the consultant and they are on the ball. It's all about taking control, getting drs and consultants that are experts - if you don't have these then demand them. The NHS is a great provision but sometimes you do need to shout to be heard, and keep on shouting until you get what you want and need. Be strong, be positive!

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Christinetoo said on 11 March 2012

I was diagnosed with Crohn's in 2009 after many years of being told I had IBS. The specialist I saw at the time told me I could expect to be on ever increasing doses of steroids for life plus I could expect to have to be admitted to hospital to have sections of my bowel removed at some stage. Not a pleasant outlook.
However I researched the disease on the web and discovered that Crohn's could be treated by diet and this is the route I decided to take.
I found a specialist who put me on elemental drinks for 2 weeks which took me into remission after which I followed an elimination diet whereby I reintroduced foods one at a time to see which I reacted to. My intolerances are mainly gluten and dairy foods. As long as I don't eat wheat or corn or dairy I remain perfectly well. If I do eat these I have full blown Crohn's.
I can fully recommend this route and for those who might be interested would suggest you see your GP to find a specialist who can help.

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marcpowellcan said on 10 March 2012

I was first diagnosed with crones when i was 15 i had my ascending colon removed at 17 i was ok for about ten years then it returned with a vengance which resulted in my transverse colon being removed they tried to treat me with all the usual drug combinations but nothing stopped it erupting again 7 years later which resulted in my third bowell reccecsion it had spread to my small bowell on that occasion i dread the near future as im am overdue now from my next attack i wish i could tell you happier news but i,ve got most of the assotiated side effects ie nausea deppresion severe cramping ect.ect. i was found to be allergic to the prednisolone and salazopyrin also the steroids i dont respond to very well at all the stress of this has resulted in myself harming the more i read about crones hasnt helped my outlook im only 43 but dont see the point

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chico12 said on 21 January 2012

Hi i'm 41 years old, I have been having lots of symptoms related to crohns now for over a year. I had my gallbladder out last dec 2010, i woke up one night doubled over in pain. I went to the hospital and they done a scan, they said it was my gallbladder. September 2011 last year i had another flare up and ended up in hospital for another 5 days, They kept asking me what the pain was like, i said the exact same as the night i went in with my gallbladder. I can't help but think its been something else all along and my gallbladder was taken away for no reason.
I'm always running to the toilet with great urgency,i have very bad mood swings , ulcers in my mouth.
Out of the seven days a week i have about two of them i feel ok. Recently i have started feeling sick alot, i got anti sickness tablets of my GP.
I am finaly getting an MRI scan next Thursday because i had a colonoscopy and it showed my intestine was inflammed.

I don't want to have crohns, i just need to know whats wrong with me as i worry about it all the time. I feel nothing is being done in a hurry to find out whats wrong with me either.

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gladys69 said on 29 December 2011

becca i had my first major flare up when having my second son in 1980, then again a brief one when having my third , i was totally unaffected with my 1st and 4th , it is a very individual disease and from my point of view there are no hard and fast rules to coping , i was in remission until 2003 when i entered the menopause , yep 23 years clear , now however it has set in with vengeance and although depression is all part and parcel of this little understood disease my outlook is take every day as it comes if you have a good day put it to good use if its a bad day just try to make the best of it , see your doctor about the depression and hopefully he will be as understanding and helful as mine , try to keep smiling it hard but it helps , i hope you start to feel better about yourself and life

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kenlog1 said on 24 December 2011

I was diagnosed in 2008 and have been through courses of steroids followed by more long term drugs (Azathioprane). I recently started to experience a worsening of my symptoms and revisited my consultant who suggested I try a Polymeric diet for 6 weeks. This diet eliminates all food and replaces it with Ensure drinks which are a kind of milkshake style full nutrition drink. I had 6 drinks a day,plus peppermint tea,bovril and lots of water.I finished the course last week and feel fantastic! My inflammation indicators are normal which means my Crohns is inactive and I have now started re-introducing basic foods (lean meat,rice,fish) to see what my triggers are and hopefully be able to continue my recovery. For anyone who is struggling or has struggled, I would recommend the Polymeric diet as a good way to get Crohns in remmission.It needs to be under medical supervision so see your GP for referral to a local NHS specialist team.

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Becca93 said on 16 December 2011

I was diagnosed with Crohn's disease in December 2008, after I was experiencing abdominal pain and bloody stools for a year, I was 15 at the time I was diagnosed and I feel that it has made me severely depressed because I'm not able to live my life how I want to and it has left me too scared to leave the house in case I need to use the toilet all of a sudden and I am not able to get to one.

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aimee clair 88 said on 16 December 2011

hi im Aimee im 23 years old and i got diagnosed with chrones diease in 2010, i started getting symptoms after the birth of my second daughter in 2009 it took the hospital over a year to diagnose me with it, in 2011 march i was rushed in to hospital as i was having a flar, i couldent eat or drink i was in that much pain i was in hospital for 14days while i was there i was put thow a lot of test like catscans xrays and then it turned out that i had a narrowing of my colum and i was put on inflaximab since having that treatment for the first 4 treatments i was brillent was enjoying my life with my family then after the 4th they rejuced the time of the inflaximab to be injected to me so at first it was taking 2 hours to do it then it got rejuced to a hour and 2 weeks before i was due my next lot of inflaximab i would get pains and burning rashes, now recently on the 5th december i was due my 7th inflaximab and the docs said that they could not give it to me as i was having a reaction to the treatment so now i have stopped it im still on a lot of medication and im still in a lot of pain im starting to get bk to the stage were i dont want to eat any more cos i no im going to be in a lot of pain now im in the process of waiting for a letter from st marys whitch i have not recived yet since 5th dec, to go for a mri scan on my smaller bowel to see how serouse the dease has gone, i need some advice on how to deal with the diease becase i reali cant handle it any more i feel as im losing controle of the thing and dont no what else to do, evey time i go dos to inform them on what else is happening they just give me tablets after tablets to deal with the pain but they dont do anything for me any more.

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Nakia said on 03 November 2011

Nakia-Im 36yrs got diagnosed in 2008 with Chrons and had to have emergency operation to remove my whole colon, and was give a J-Pounch, since then my life has been a night mere. Im not able to have a full nights sleep, Im constantly up using the toilet and Im just so angry and depressed. I really need my life back its totally getting to me now I can't cope anymore I have been crying day and night. Ive lost about 4 1/2 stone my vitamins level is very low and now Ive been diagnosed with Ruhmatriod Arthritis, and my joints swell up in the cold times. Im still seeing a consultant at Guys as well as a diestician but I need some coping skills to continue living with this horrible disease.

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caz2011 said on 02 October 2011

i was diagnosed with chron's in 2000.... i was never treated for it properly or saw another consultant until i was rushed into hospital with what i thought was a u.t.i. due to kidney stones on 9th sept....i was in for 12 days and how things have changed....turned out i'd had a very serious flare up, had two lots of anti-biotics, very high dosage of steroids....clear fluids for a few days...should have been put on an elemental diet but no one knew what it was.....but saw a consultant everyday...had x-rays, ct scans, colonoscopy, dieticians, as i am coeliac as well....i left hospital feeling better than i have in years....on a low residue diet which is boring but have only had two 'not so good days' in 2 weeks....they are talking about putting me on the infusion treatment of injections and the drip which if i can avoid i will but if its as good as christian91 says it is, it may be worth it......i have since had the consultant and the dietician ring me at home to make sure i am ok...which is as rare as hen's teeth...i did slip through the net 11 yrs ago and am very angry i was let go for so long and mis-diagnosed a few times by the same hospital....but cannot complain at all this time about my treatment and look forward to feeling 'well'.....and don't forget to ask....ask...ask...i know it's not easy, especially when you feel so unwell but don't be fobbed off by anyone....because i'm gluten-free too, the food was so bad in hospital one day, i got so angry i insisted the chefs from the restaurant come up and meet me and my dietician....and they did!! you have to make yourself heard, i've learnt that now.. so good luck and better health to everyone...

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Penguin1989 said on 10 September 2011

I was 13 when I started getting ill and diagnosed right after my 14th birthday with Crohns. My first treatment was to stop eating for 2 months and drink Modulen which was this powder you mix with water and drink 2 litres everyday. I was in remission for a year or so but then relapsed and went back onto the diet. I relapsed again and moved on to steriods which worked very well but everytime they tried to get me off it I got ill again and the side effects were getting worse.They finally put me on azathioprine and regular treatment of Infliximab which is a drip that I have every 12 weeks.I was 17 when I started that treatment and it has worked very well until now 5 years later as i feel the crohns symptoms a bit before my drip and the period has been reduced to 10 weeks and now drips every 8 weeks. Really hoping I dont have to have a operations.

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christian91 said on 29 July 2011

had crohn's disease for 5 years now, diagnosed at 15.

victor, understand where your coming from but yeh there is medication available. when was first diagnosed i lost hell of a lot of weight, got really weak and everything else. my gp was a useless idiot and prescribed me gaviscon! anyway went to hospital and saw some actual specialists and they started proper treatment for me...
first i was given these nutritional drinks (taste like crap) and they stopped me from eating but this didnt work, just got alot weaker.
the treatment that worked for me which i recommend to you is what i think was called an infliximab. basically its a drip that goes into your blood and it heals the inflamation. no idea how but it worked for me. nursed me straight back to health!
so yeh ask your doctor/consultant about an infliximab (probably not correct spelling)

good luck man, all the best.

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Sixupman said on 21 July 2011

76 years of age Crohn's since 14 years, two resections of small bowel at 20 & 30, first major. Has created havoc with life both physically and mentally [vitamin deficiency (?)]. Have avoided Medics for over 20 years and resort to Paracetamol when flares-up.

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victor34 said on 25 June 2011

does anybody with crohns disease agree with this comment posted under outlook

There is currently no cure for Crohn’s disease. However, medication is available that can be used to treat the symptoms and prevent them from returning

there is no medication i have been prescribed that has prevented a return of crohns.
and this is why there is no cure
it really bugs me to read comments that are not based on reality. it is hard enough to inform people who do not have any knowlege of crohns how the disease affects us but to claim medication can prevent it from returning is fiction..

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suzanne79 said on 23 November 2010

over the past 18mths i have had various symptoms pointing to different conditions and in the last few weeks my consultant is considering it is chrons disease, ive had gallstones and had my gallbladder removed had kidney infections and kidney stones at least 10 times and recently very high lft and kft results of which i ended up in hospital in 3 occasions, i now have the problem where food as is even more of a issue than it was before. Previously anytime i ate i was in chronic abdominal pain now...it doesnt matter wether i eat or not the pain is there and i have lost considerable amounts of weight...the doctor has now put me on steroids as well as morphene and i am now experiencing period like blood however i am on the depo injection and have been for over 6 months...could this be blood from elsewhere or linked? i am rather concerned, i am due to have a endoscopy capsule in 2 weeks time but can you give any guidance in the short term?

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jpfinlay said on 09 November 2010

Redanne: your husband has had a remarkable length of remission - in that respect he has been lucky, but is a little unlucky for it to have returned.

I was diagnosed with Crohn's when I was 16 and have had 2 bowel re-secions with about 10 years of good health in-between them. Firstly, let me say that I am NOT a medical doctor but I have lived with Crohn's for 20+ years so I can at least relate some of my experience in the hope it will help.

I watched the video on this page and, it seems to me, that things have moved on (technologically: e.g. keyhole surgery and CAT scans) since I last had an operation or cause to go into hospital with symptoms (around 8 years).

So, the good news is that the NHS appear much more "tooled up" to diagnose complications and then remedy them once identified. The surgeries I have had were very invasive and not a pleasant experience (although the eventual effect of them were obviously) so the news that keyhole surgery is now used is a real breakthrough in my opinion.

The doctor in the video talks about a special diet that can actually help reduce the inflammation in the bowel, so if I was in your husband's position, I would be asking to be put on that diet and maximising the amount of protein and fat I ate in order to maintain my weight. Also, when you are ill with Crohn's you feel tired most of the time, so any means of keeping energy levels up would also be advantageous - perhaps periodically taking energy gels or drinks might help?

I hope that, if he has had the x-ray by now, things are much clearer and you have had professional medical care and advice.

Good luck with the treatment and I hope your husband is back to his old self soon.

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redanne said on 10 September 2010

my husband had crones in his mid thirties
he is now 81 and it seems to have reared its ugly head and he is quite poorly with loose stools pain and great weight loss
there is a barium x ray due shortly what else can we expect to happen to him please
we are very worried?

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