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Crohns Disease

Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
Hi,

Does anyone have crohns disease? If you've got it you'll know what it is, if not its an Irritable bowel disease, real pain in the arse at times! :crazyeyes

How do other people cope with it? Has anyone had the operation to remove some of the bowel?

Would like to hear from people.

Cheers
«1

Comments

  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Crohn's disease is an inflammatory bowel disease, different from IBS.

    Here's some info for you:
    http://www.crohns.org.uk/
    http://hcd2.bupa.co.uk/fact_sheets/html/crohns_disease.html
    http://www.nym.org/healthinfo/docs/103/doc103surgical.html
    http://www.patient.co.uk/showdoc/40000896

    As for coping with the disease, your consultant or specialist nurse should be able to advise you on how to cope with the symptoms, and what treatments you should be on.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    My Dad's had it ever since he was 21, and he got his bowel removed and was on the pouch for a while, then they put this sack in him.

    He's gone down shit creek since he got his bowel out. He's lost loads of weight and is so gaunt looking.

    :(

    But I feel for ya, my Dad breaks out in mouth ulcers and has the shits all the time.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    yes but crohns is a funny one that people have different reactions to. Recently they'v tried me on two different drugs, neither worked. I wondered if people have different funny things that work for them.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    My sister's best friend has Crohn's...

    Ilora x
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Anyone else know about how to cope better with crohns? There must be someone with a trick or two.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I have IBS, so can't help you. Had all the tests to make sure it wasn't crohns though.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I've had Crohns Disesase for about 5 years now. I have not had an operation but have been on lots of different combinations of drugs inc Steriods which can really play havoc with your mind/body.
    As for tips for controlling it like someone else said it is a strange disease as it differs so much from person to person, but I have found that listening to your body is helpful. You will see signs in your body when your close to flaring up.
    I try to get lots of sleep, eat small meals and generally not overdo it.
    I live a pretty normal life and dont let the disease rule my life or stop me from doing things most of time but at the same time accept that sometimes I it will get the better of me for a while.
    If you want to talk further about it let me know and i'll send u my email add.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I also have Crohn's disease. I was diagnosed 10 years ago now, when I was 17.
    I am lucky that the medication keeps me pretty well most of the time and with small adjustments to my daily life and being careful about things that I know trigger symptoms, it does not really affect me doing anything.
    If you want to talk more about it, I would be really happy to chat. PM me and/or I can give you my email address. :)
    There are alsoorganisations and support groups in many countries as well as on the internet that I know of and that look helpful although I have not really used them myself.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    What sort of things do you have to avoid? I find caffeine really gets me bad. But other than that I cant pinpoint anything. As for medication they tried me on two new ones, one didnt work at all, and the i turned out to be allergic to the other one.

    Thanks for shouting!
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    If you wanna learn what to aviod etc - as has already been said, everyone is different. one thing i did for a while was to note down in my diary every time i had a really bad day and if i had eaten anything particular that day so that then over time i could see if there was any pattern in times of week or month or things I had eaten. It came out pretty random though.. I dont do coffee or really greasy food or really fatty cheese but the worst trigger ever for me is stress/anxiety.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I got diagnosed with it about a year ago.

    I've also found that stress and anxiety can set me off, and should definitely be avoided during a flare up. E.g. I'd just about recovered from my first flare up when my girlfriend dumped me and it set me off again.

    The docs put me on Pentasa to reduce inflammation, calcium tablets (even though I drink like a pint of milk a day), and iron tablets for my annaemia. Still feel tired all the time, though. But maybe that's just my natural lazy self. :)

    Read somewhere that Aloe Vera helps as well, so I bought a few bottles of high strength tablets and take one every day. Has anybody else tried it?

    Also, sounds stupid, but try and chew your food more.

    And read somewhere that scientists were working on a possible cure, and it could be ready in next 5 years. Something to do with bacteria in milk, and MAP whatever that is. Anyone have any more info?
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Read somewhere that Aloe Vera helps as well, so I bought a few bottles of high strength tablets and take one every day. Has anybody else tried it?


    so do you think they help?

    Someone recommended to me once to take flax seed oil tablets but i didnt think they did anything at all.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    i dont have it but i know somebody who does. shes lost loads weight and was in and out of hospital. but the hospital finally found out that it was Wheat and yeast that set hers off. Since then she only goes back for checkups. she doesn't really take anything to settler her, (think she said she shoudl but cant be arsed).
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I honestly can't tell if the Aloe Vera helps. I started taking them a couple of months ago during my flare up. I got over it, but was on steroids and a higher dose of Pentasa as well so I don't know what got me over it. Since then my body's been pretty much back to normal. I don't know, it's a weird condition. I can never tell how bad I am unless I'm really bad.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I am actually supposed to be going next week to a discussion group kind of thing about Crohn's. I saw them advertising in the paper for a research thingee for people to talk about it so I emailed in and they rang and invited me to go in next week (althought they havent sent me out the details yet). will let you know what its all about and if its interesting at all :) and even better, I get 'compensated' for my time :p
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Im hopefully gona get some surgery, to remove the bad part of me bowel. Hopefully that'll sort me out for a few years, then im not sure what'l happen. Hopefully im going in the navy, but at the moment it doesnt look good, crohns is a disease they state as something to turn you down on. Got an appointment with doctors next week about the op, so it should be interesting. Always said I needed to lose a bit of belly, didnt mean like this though!!

    For you guys, did it take a while to accept/sink in that you actually had something wrong for "life"?
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    well yea, it did take a while to sink in and tbh, i dont know that it really has. i dont think of myself as 'sick'; i havent registered as 'disabled' (although i know i could since its long-term, chronic and i could say it affects my daily life); and i dont tell anyone except people very close to me about it (partly cos its hard to explain, mostly cos they dont need to know).

    I remember when i was first diagnosed, i was just finishing school and going away to uni in a couple months. my mum was sitting there in the doctor's room with me and she asked the doctor if it will affect me going to university and i remember just thinking to myself what is she talking about? this is not gonna affect my life.

    and luckily, mostly it doesnt. people just think i am a little strange that i feel the need to know where all the toilets are wherever i go :p

    which reminds me, i have travelled loads of places in europe and i reckon it would be the best idea ever for someone to write a book of capital cities and where the accessible, nice toilets are in all of them :p
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I was diagnosed over a year ago. It all happened really quickly really. I think it only sunk in when i couldn't find a toilet once (I don't really need to explain!!)

    I am on Pantasa and have been for a year. I was on Steroids but i put so much weight that the specialist took me off them. They do work but they bloat you out!!! I am still trying to lose it now.

    I am now on azathioprine which is pretty good. It works in the same way as steroids but not as harsh. They have funny side affects (you feel a bit dizzy/quesy for the first couple of days) but they do help.

    A really good website is www.nacc.org.uk.

    Hope this helps
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I've had it since i was 14/15 (im 22 now) sometimes theres nothing you can do about it if its going to flare up it will but you can help it by not eating things that a really spicy and i found out that if i had a cup of tea in the morning i would be ill for hours maybe even the whole day, now i wait till about 11 in the morn before mty first cuppa and it rarely bothers me ,

    i was the same as dobbi i was put on steroids when i was 16 and 5 stone and by the end i was up to 13 stone :O and i couldnt get off of them so when i finally managed to get off them i vowed to never take them again,

    main thing is to keep in touch with doc and get regular blood test they can tell whats going on
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    I dont have crohns but i have UC which is basically the sister of Crohns (as im sure most crohns sufferers will know anyway....hell i was told it was crohns at first).
    As with the rest of you, steroid treatment is the major controlling factor of my initial recovery. Theyre amazing, they work wonders, but they turned me into a menopausal woman....and i was a 15 year old buy at the time. hehe. The weight didnt bother me as much as the mental side of it all....they sent me up the goddamn wall, over the otherside and into someone elses garden to say the least.
    Im on Azathioprene and Balsalazide as control meds, but i take Colpermin which is a peppermint concoction that seems to help...along with codeine and immodium for control of the symptoms.

    As for daily coping, it differs so much from person to person. I personally have to avoid anything with a hint of spice to it....chilli, curry, even peperoni has some awesome bowel disturbing potential. Shame really cuz they were my favourite foods.
    I dont know how it would help a Crohns patient but i find that when i flare up a bland, easy to digest diet helps me get back on track abit quicker , obviously with additional meds. Things like soup, jelly, rice pudding, etc can actually be lived on for quite some time if needs be.

    I dont think something like this ever settles in.....you just kind of accept it and get on with it after a while. being angry only works for so long.....eventually you just have to do something, regardless of how you feel about being ill for life. Personally, i think that if the price i have to pay for a "normal" life is some tablets and other meds every day then its a damn small price compared to some of the things that happen to our fellow man.

    Hope your all doin good and not flaring up right now.
    Peace and Good Health

    Edited to add: whoever mentioned Azathioprine....its actually an immunosupressant. It reduces the reaction of the immune system against the linings of bowels and other affected areas.....on the downside, it isnt just a targeted effect, it effects your whole system, so over the long term your more likely to be more suseptible to colds, the flu, other easily caught bugs and germs. So stay up to date on your flu shots and stuff people.... Peace
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Aziathioprene is the devils stuff, docs said it'd be good and im allergic to it, got a rash all over, so thats off, then pentasa did not do anything and asacol is about as much use as a chocolate tea pot. Im glad that a lot of people find spicy foods too much, I HATE CURRY and now if i can say i cant have them for medical reasons then... O WELL. Crohns has been the BIGGEST kick in the bulls to me, and looks like it may get bigger. I first noticed stuff was wrong this time last year, I had just got back from a working trip to india (long story but was with navy doing tsunami aid work), so i told the docs, he thought it was either crohns or TB, so got sent to specialist, but appointment was gona take 6 months to get. By june I was iller and ended up in hospital after pretty much collapsing, then had all the tests (the really good one....a colonoscopy!!) and after 10 days got let out, i was really weak for a few weeks, and had to miss out on a trip round the med on a tall ship with navy, would have cost me about £80!!!!

    I am at uni sponsored by the navy and have to do various trining exercises for it, some is very army based, so I had a weekend running around the peak district with a rifle, getting wet, cold (was down to about -10C) and tired, survived no worse than anyone else! The next one was on dartmoor and I failed, led to 5 days in barracks, trips to the army medic, the hosp and many to the loo! Next year I gotta go for a medical for proper navy entry. One of the conditions that stops people getting in the forces is Crohns, so Im really gutted because there's a good chance Im gona be kicked out before iv even started my childhood dream! :yuck: :banghead:

    One tip tho is to eat casseroles and stews as the meat is usually a lot more tender, I find that when im on military exercise I am pretty much perfect health when Im living off military rations, or compo as its known. Its things like pork casserole boil in the bag stuff. Compared to real food its not so good but it really does me some good! Available from many army navy surplus stores.


    Anyone here with it in the forces??
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Wow, its really interesting to see how many people here have experience with this - which sucks that lots of people are sick but is also kinda nice to have other people who understand all this stuff.

    almightybob.. my grandad has UC and thats what they thought I had first before the diagnosed Crohn's. And its really interestin to me to hear you say that Colpermin seems to help cos i have seen it in the shop but never tried it thinking it probably wouldnt do any good but maybe i will give it a try.
    I dont know Aziathioprene but I take Mercaptopurine which is also an immune suppressant. when i was first put on it, i had to have a blood test every week to check that it wasnt lowering the immune system too much (which at least got me over my fear of needles :p) now i just get the flu jab every year and accept that i might be a little more susceptible to illness than some other people.

    wilsonc.. that really sucks that it might affect your chances of your chosen career!! :( is there someone in recruiting or something that you could talk to and find out a little more just to maybe put your mind at ease? I would hope that since its a disease that can be medically controlled pretty well, that they would recognise you could still do your job.. and isnt there some kind of disability rights that might say they cant not hire you if you could do your job with just a little adjustment?? i dont know
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Iv got to have a medical next year anyway so my CO (my boss) said I can at least stay till then and get the money out of it and hopefully a degree. But as far a disability rights goes the forces are above it, because there is no way they can possibly have someone in a unit or ship etc who can not be relied upon 100% of the time as you never know whats going to happen. Im hoping that if i have the surgery it may calm things down a bit enough to get me in, then when it comes back in a few years the navy may want to keep me and help me with it. Have to wait and see.


    I found out recently that my aunty and nan have/had crohns so it may be herreditary, but then again it could be from the MAP enzyme in milk, common in unpasteurised milk, i spent 3 weeks in india....yum yum!!
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Just as a little side note, this is one really for any girls to answer who have crohns or UC, quite blunt but... how does it compare to period pains and the like? Just wondering if i can use the line "I know exactly what your going through" with my girlfriend!


    Cheers
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Hey sorry to hear that Crohn's might effect your chosen career path but try not to be too down about it as things seem to have a way of working out.
    I used to be in Construction and was doing really well, earning lots of money and was thinking of going into buisness with someone. Then Crohn's hit which knocked me for six - I found the physical side of the job impossible.
    This was a really low point for me - stuck in hospital, a disease I'd never heard of etc
    But I found it made me re-evaluate my life and what I wanted from life. I started doing Voluntary work at a youth club and really enjoyed it. I'm now working for Connexions helping young people out with lots of different issues and love it!
    So when I look back at being diagnosed I feel mixed emotions now - yes it was a low point, but on the other hand if it had never happened I would have never found my way into the job I love now!
    So keep you chin up cos im sure it will all work out for you :thumb:
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    How did you manage to survive working as a volunteer? I mean with living costs etc.

    Iv got an appointment tomorrow with the hospital docs to see about an operation that may straighten me out for 5 years or so, maybe by then the navy wont wana just let me go or whatever, will have to see what the docs say.

    Its really annoying because im usually fine but when i get stressed (i.e. now with uni exams) it gets worse. On a recent military exercise on dartmoor i was fine most of the time, until i ate, then the toilet was my best mate, but because if i was out running round id need food, the old dangerous cycle!!!
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Well I spent a long time off work - in and out of hospital and was recieving sick pay for quite a while and not spending any as at the time I was still living at home with my folks.
    After a while I started doing the odd day at work for my brother but took my time with it all and eventually got involved in my new job.
    As for what you were saying about stress - that can def be a major trigger for me, also if I get a cold or something I have to be careful I find it can trigger a flare-up.
    Good luck with it all anyways.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    As for what you were saying about stress - that can def be a major trigger for me..
    me too.. it is the worst thing for me. I get stuck in this cycle: i get stressed ---> start feeling sick --> think oh no, i'm stressed, i'm making myself sick --> get more stressed --> get more sick... :yuck:
    I even asked my doctor if he can recommend somthing or refer me to someone to help with this psychological side of it and he just didnt want to know :( any of you guys got any tips for this?
    this is one really for any girls to answer who have crohns or UC, quite blunt but... how does it compare to period pains and the like?

    I cant really say, sometimes its similar with the aching and cramping feeling, sometimes not but the Crohn's does get worse around that time of the month - double the pain, yay :rolleyes: and the doctors have to keep an eye on this in case you get endometriosis as well :eek:

    Just to let you know, i went to that research thingee i mentioned. it was kinda interesting and kinda depressing. a group of us had to sit and talk about how Crohn's affects our lives - made me feel kinda lucky that mine is mild compared to the others who had a lot of problems, but also depressed and scared that mine could get like that some time :nervous:
    we got paid £100 each for 2 hours of talking tho so that was good :p

    Wilsonc, hope it goes well with the Docs!! let us know what they say
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    The docs have given me some more different tablets!! Mercaptopurine... like aezothioprene, but hopefully im not allergic to em. Doc wasnt keen on the surgery because it doesnt always have the desired effects, and he'd like to leave it a bit longer for me to try more things before i go for it. Looking bleak for the whole career thing though. I am off to USA in July for 3 weeks on a ship, so iv gotta get blood tests before and after i go, but its a lot of hassle, not gonna be able to do it during normal 24/7 navy life.


    Has crohns affected other peoples career paths etc??

    £100 for 2 hours work...sounds good!
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    mercaptopurine is the one that i take too. never had any probs with it but had to have frequent blood tests to check that it wasnt suppressing my immune system too much.. seems alright now tho :)
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