I've been diagnosed with crohns in my small bowel

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Hi everyone, I've never been on a discussion before. After being ill for 8 months I've finally had a phone call off my doctor to say the c.t scan has shown crohns disease in my small bowel only. I've not had any other details so was just wondering if anyone on here can give me an idea of what I'm facing. I'm a 30 year old woman with 5 children to look after. Ive been having awful pain and been back and forth to doctors and A and E and im scared now of what my life is going to be like!!! Any help or insight would be very much appreciated. Thank you

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  • Posted

    Hi, it's good to know that you have finally been diagnosed. I'm afraid I'm not able to offer much help but someone here hopefully can. I have a scan Friday to see if I also have crohns of the small bowel. Good luck x
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    • Posted

      Thanks, I really hope so and good luck for ur scan. All I know up to now is that this condition causes so much pain and has had a big impact on my life. Im hoping the situation improves now I've been diagnosed.
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    • Posted

      I hope it does for u. I know, I've been ill for 20 years but always dismissed with ibs. Now all of a sudden I'm lactose glucose and fructose intolerant, have B12 deficiency, malabsorption and inflammation in my bowel sad I'm praying for an answer soon! X
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    • Posted

      Can I ask what ur symptoms were aside from pain? If u don't want to share on here I understand but could u private message me if so as nobody seems to have much information about it being only in the small bowel x
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    • Posted

      Hi, I don't mind discussing symptoms with you I'vehad to describe them often enough llately haha. It started with pain in the lower right handside of my abdomen, diarrhoea and my stomach swelling up, also a loud rumbling sort of noise coming from where the pain was. Then I had loss of appetite, nausea and then started actually being sick alot. I noticed that the pain would get worse after eating or if I was walking. I've lost 3 stone in weight as some days I cant eat and then when I do manage to eat I'll have a bad day where I'm either being sick or back and forth from the ttoilet . I've noticed lately that the pain goes into the bottom of my back like a burning pain and the pain in my stomach has gotten worse I'd rather have labour than this!! Do any of these symptoms sound familiar to urs? x
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  • Posted

    Hi Kerry,

    It's good that you've got a diagnosis as now your Dr can start treating the Crohn's and doing something about it. You want to know what you're facing so here goes!  First of all the bad news a) Crohn's can't be cured - only treated so you're going to have to learn to live with it long term; b) it may be in the small bowel now but it Crohn's can occur anywhere along the digestive tract - from mouth to anus!! Typically it will follow the pattern of flaring up somewhere for a while, settling down again (going into remission) after treatment and then flaring up again (possibly at another location) later on; c) repeated flares ups in the same place can cause a build up of scar tissue (a stricture) which can obstuct the bowel/intestine and if that happens you will need surgery to remove it (I've just had that done for the third time). So far so bad - now the good news!!! Modern drug treatment with steroids and/or immuno-suppressents can be very effective at relieving the pain and speeding up a remission. Don't be scared by the word 'steroids' you're not going to turn into the Incredible Hulk!!! As with any drug some people will suffer from some side effects but most people don't and I'm sure your GP wil monitor you in the early days. Modern drug treatment is very good (there was none when I was first diagnosed, you just had to wait it out) and can relieve symptoms and bring about a remission quite quickly (within weeks) and these remissions can be very long lasting (I've gone up to 15 years between flare ups during which time I was complete free of any symptoms - but it did come back eventually!). Finally I want to let you know that I've had Crohn's for over 50 years now and for most of that time I've lived a perfectly normal life, Yes, when the Crohn's is active it's bad, but hold on to the fact it will go into remission at some point and then life will get back to normal, if you let it. I think you just have to try and stay positive, don't let the Crohn's determine who you are and rule you're life. Trust your Drs and follow their advice. Oh! and welcome to the club!!!

    Best wishes,

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    • Posted

      Thank you for your reply it was really helpful i just can'twait for some ttreatment to start I'mgglad I've eventually got a diagnosis and I'mbeing ttaken seriously now off the doctors. Have u been able to work with ur crohns? X
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    • Posted

      Hello Again,

      To answer your question, yes I worked full time until about 4 years ago and then decided to go part time - but that was a lifestyle choice (mortgage paid, kids left home) rather than anything to do with the Crohn's. As I say, despite having recurring bouts of Crohn's over the past 50 years, three resections and now an ileostomy  I've been able to live a pretty normal life including work, having a family, playing sport, forgeign travel, and even spending time as an Army reservist ('though not in a combat role!) 

      One thing I'd like to pick up on is the question of diet because, however well intentioned, not all the advice you will get will be accurate or helpful.

      It's important to know that Crohn's is a disease of the auto-immune system. Take a look at the NHS Choices website:- (http://www.nhs.uk/Conditions/Crohns-disease/Pages/Introduction.aspx). You'll see that the exact cause of Chron's is unknown but that there is no evidence that diet has anything to do with it. Essentially what happens if you have Crohn's is that from time to time your immune system goes haywire and  fails to recognise your gut is part of you so it attacks it! This results in the gut becoming inflamed and ulcerated - hence the pain. In turn this prevents the gut from working properly and aborbing the nutrients from the food you eat - hence the weight loss and tiredness. Obviously whatever you eat has to pass through this inflamed area and some types of food will aggrivate it (but they don't cause it). Eventually the immune system realises its got things wrong and calls off the attack - this is a remission - then at some point the whole cycle will start again. The real importance of diet therefore is in trying to ensure that when your Crohn's is active you don't eat anything which is going to make matters worse and for most people this involves avoiding anything 'high fibre' as these are more difficult to pass through the system. In extreme cases you may be advised to follow a liquid only diet for a couple of weeks to allow healing to take place. Once the Crohn's is in remission there's no reason not to eat normally. Out of interest I've been to the hospital today to see the nutrionist and his advice is that I should include more dairy produce in my diet. Hope this helps.

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  • Posted

    Hi kerry

    I too have small bowel Crohns.  Once of get the correct medication you will have the bowels more or less sorted.  Unfortunately the fatigue never goes.  You will have to learn to put yourself first and with 5 children that is not easy.  If you get tired you feel bad so talk to the children explain that you need their help and whenever you can take a rest.  The pain can also be controlled to a certain extent.  Listen to your consultant, gp and nurses.  Mine are exceptionally good.  But they are always prompting me to ' listen to your body'.  It is ok to do nothing.  I hope you get it controlled quickly and are lucky enough to have a time without the symptoms.

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    • Posted

      Thanks sheila I think the doing nothing part is something I'll have to try and get used to, I'm normally very active. The pain and my weight are the things I want to get sorted x
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    • Posted

      I've already lost nearly 3 stone and only weighed 9 and 1/2 stone before the weight loss, will I be able to gain weight again once treatment starts? X
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  • Posted

    Hi kerry.  I don't have Crohn's but I've had serious bowel issues in the past. I found that a gluten and dairy free diet worked wonders. Many modern thinking doctors are now placing Crohn's patients on a gluten and dairy free diet. I'm sure you could find info out about it by Googling Crohn's and diet. I know that nuts is another thing not to eat if you have Crohn's. I just Googled it myself and found a list of foods NOT to eat if you have Crohn's. I know that the right diet will help you.

    Best of luck!

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    • Posted

      Thank you, I found out by my own mistake about the nuts after eating a bag of them!! I won'tbe ddoing that again in a hurry. Diet is something I'm interested in I'll miss the days where I could eat anything x
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  • Posted

    I haven't gained any yet but for the past six months I have stopped loosing it.  Every time I put on a pound or two,it comes off again.  Most of my life until,recently I have been overweight and now I cannot put it on.  I feel better since I have stopped loosing it.  This I think is mainly by trying to rest as much as possible.  Very small,portions frequently works best for me.
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