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Crohn's Disease

  • 30-01-2005 12:45PM
    #1
    Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    ** Mod- if this is not the right place for this thread- please feel free to move it **

    Hey guys,

    Three of us here who suffer from Crohn's Disease were thinking of organising a series of coffee afternoons- to sit down and exchange stories (and offer encouragement) to each other.

    Location as yet undecided- but would be early evening (aka- I am NOT organising a pub crawl.....) and probably somewhere near Dublin City Centre- e.g. Food Emporium on Abbey Street for example.

    I tried to get the ISCC to organise similar and presented them with Meeting Group details, but they are claiming they have insufficient resources to organise it, as they are a voluntary group, but might send someone along with literature- which would be nice.

    It'll be nice to know there are more freaks like us around! :)

    Take care,

    Shane


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Comments

  • Registered Users, Registered Users 2 Posts: 35,522 ✭✭✭✭Gordon


    smccarrick wrote:
    ** Mod- if this is not the right place for this thread- please feel free to move it **
    That sentence always makes me feel better :)

    I'll copy this thread over to the events board. See http://www.boards.ie/vbulletin/showthread.php?t=221681

    Feel free to use this PI thread to discuss Crohn's disease, personally I have no idea what it is.


  • Closed Accounts Posts: 43,044 ✭✭✭✭Nevyn


    what is crohn's Disease

    It can also be known as Inflammatory Bowel Disease or IBD or Irratible bowel syndrome IBS.

    My Dad suffers with it, and it can be quite literially a pain in the arse and lower gut.

    The ISCC is unfortuantely staffed by mostly volunteers, but they do have a good range of information to help people adjust and live with Crohn's disease.

    The support meeting sounds like a wonderful idea


  • Closed Accounts Posts: 2,585 ✭✭✭HelterSkelter


    I had ulcerative colitis (similar to Chron's) and had surgery because of it.

    Did you need surgery?


  • Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    I've had surgery 4 times since 1993, the last time being last February.
    I suffered from a bizarre range of misdiagnosis for about 10 years prior to being diagnosed by Parnell Keeling, the original being stomach ulcers at age 10.
    I suffer regular relapses, am on cortisone at the moment, but want to try to get off it again- it has other side effects. Yes, its a pain, literally as well as figuratively. Both work and personal life can be a totally screwed up by it.

    Thats a brief intro from me!

    S.


  • Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    Thaed wrote:
    what is crohn's Disease

    It can also be known as Inflammatory Bowel Disease or IBD or Irratible bowel syndrome IBS.

    The support meeting sounds like a wonderful idea

    One of the reasons I thought it might be an idea to organise informal meetings, as opposed to structured meetings- is while its all well and good going to the structured meetings- they are very similar to going to lectures- you are presented with information from the podium- you have very little chance to chat and discuss things among yourself. As they tend to be in the evening- I'm normally exhausted (another Crohn's trait- total lack of energy) so I'm not exactly in the right frame of body or mind to try to make small talk.

    Another benefit of a small group meeting up- is a better chance to compare notes with one another- maybe we might be able to pick up tips and pointers from each other that we may not otherwise think of, of our own accords.

    I have had a few PMs on today, as a result of this thread, and would like to go ahead and see what we can arrange.

    S.


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  • Closed Accounts Posts: 2,585 ✭✭✭HelterSkelter


    Hi Lads,

    check these links out, sounds like some positive news...

    http://ibd.patientcommunity.com/features/weinstock.cfm

    http://ibd.patientcommunity.com/features/weinstock_update1.cfm

    http://news.bbc.co.uk/2/hi/health/3287733.stm

    Some interesting quotes:
    "The first six patients we treated received a single dose. We staggered the initial dosing for each of the patients - we wanted to watch them singly, over time. Nothing happened for a couple of weeks, and thereafter five of the six patients went into remission. And, by remission, I mean they felt symptom free. These remissions lasted two months to five months, after which the patient gradually relapsed. We then received permission to do some repeat dosing and the patients responded. Ultimately, we received permission to do some maintenance dosing on a regular basis, and we found that if we gave the agent once every three weeks we could sustain remission. A handful of patients have been maintained now out to a year and a half, and have done well."

    "The first five of the six, went into complete remission - no diarrhea, no abdominal pain, no joint problems. These are people who were chronically ill for years. The one patient who did not go into remission got somewhat better. That same patient re-entered into the open label, maintenance phase, with twenty-five stools per day (all diarrhea), arthralgias, and a fistula. After three doses (within a couple of months) this patient was in complete remission, gained weight, had no signs of arthralgias, and is now running five miles a day."

    They are now testing the treatment out on much larger groups of patients and it seems to be going very well.

    Unfortunatly I am beyond help, I had my colon removed in 2002 due to Ulcerative Colitis.


  • Closed Accounts Posts: 1,156 ✭✭✭DaBreno


    Since I suffer from this crap myself for almost 2 years now, Id be interested in peoples opions on diet, how they manage a working day with it and where this **** comes from.
    Im taking Asacolon to styme it and while it works most of the time, I still have regular bouts of it and have alreayd missed time off work this year with it.
    Id like to hear from anyone who has had surgery how they found it coz it was one option mentioed to me.

    Cheers folks.


  • Closed Accounts Posts: 2,239 ✭✭✭Gilgamesh


    Dudes, I though IBD wouldn't be good talking to coffee and Cake?
    Correct me if I'm wrong,


  • Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    Gilgamesh wrote:
    Dudes, I though IBD wouldn't be good talking to coffee and Cake?
    Correct me if I'm wrong,

    Different foods seem to cause different problems for different people. There are a number of things in common. Personally- I survive on coffee a lot of the time. What I cannot under any circumstances eat is Sweetcorn, Maize or anything made with them- e.g. cornflakes and a lot of the breakfast cereals are poison to me.
    A big no-no for me is also anything with MSG in it (Monosodium Glutamate). Some people have probs with spicy food- in my case it depends on how active the Crohn's is- sometimes I'm ok, sometimes I'm not.

    Depending on how you are feeling, some foods may be fine a lot of the time, but total poison to you at other times. Thats my experience in any case.

    S.


  • Registered Users, Registered Users 2 Posts: 189 ✭✭m4cker


    You poor bastid no msg. oh its so lovelly and tingly hmmmmmmm.


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  • Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    Ps- one thing I have noticed, is that a lot of Crohn's people tend to ingest a lot of highly refined sugar (especially those of us with absorption difficulties). In that regard- hot sweet drinks would feature prominently.

    I have problems with alcohol- my digestive system is incapable of handling boozing at all, where some people get hang-overs, I can take weeks to recover. :( Spirits tend to be different though- for some strange reason. I like a nice whiskey- and also hot whiskeys, and they don't seem to cause me the same degree of difficulty. A lot of the time I do end up drinking coke or orange juice when I'm out- so I do end up feeling a bit out of place, but it means there is not a problem for everyone else with a designated driver- and not a problem for me with a relapse the following day.

    Re: coffee and cake- I'm open to suggestions. If this does not sound like a good idea for some people- its not a problem. One of the reasons I suggested the Food Emporium on Abbey Street- is precisely because of the wide range of very different foods that are available there (should be something to cater for everyone).

    S.


  • Closed Accounts Posts: 2,239 ✭✭✭Gilgamesh


    aahh okya, just read that a low fat diet was recommended as a lot of stuff can worsen the condition.
    thanks for the reply though


  • Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    m4cker wrote:
    You poor bastid no msg. oh its so lovelly and tingly hmmmmmmm.

    The very thought of it is making me queasy......

    Think of all the things with MSG - Tayto crisps, soups (virtually anything in a packet), most savoury foods, Chinese foods....... :( I guess you always long for the things you cannot have!

    S.


  • Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    Gilgamesh wrote:
    aahh okya, just read that a low fat diet was recommended as a lot of stuff can worsen the condition.
    thanks for the reply though

    Low fat, high protein - low fibre, high carbohydrate

    I think the fat may be a problem with absorption and acids- maybe someone who has a little more knowledge might like to give a little more info.

    I have an appointment with the Dietician in St. Vincents in 2 weeks time- so should hopefully have a better idea of things from a foodie perspective then.

    Surgery 4 times, on cortisone most of the time and I've never gotten to meet a dietician........ says something for the state of the Health Service here.......


  • Closed Accounts Posts: 2,239 ✭✭✭Gilgamesh


    is very weird with the diatician indeed, I don't have Crohn's but am Insulin independant Diabetic, and the first thing they did was send me to the diatician before I even saw the docs.
    Surgery really sucks bigtime, and I guess it was with full anesthetics each time aswell.
    wish you all the best for the future


  • Closed Accounts Posts: 1,156 ✭✭✭DaBreno


    smccarrick wrote:
    Think of all the things with MSG - Tayto crisps, soups (virtually anything in a packet), most savoury foods, Chinese foods....... :( I guess you always long for the things you cannot have!

    S.

    Ouch! Sorry to hear that. I find it varies wildly. Chinese, Mild Curries and the like dont bother me. But then Tangerine Oranges and Red apples kill me! Even when Im laid out by a bad dose, I cant eat most things yet a Pizza from Apache is grand. Weird.

    Alcohol on the other hand is a killer. Still stupid enough to have a drink the odd time mind, but the Hangovers are Epic - a few pints and I wake up in the morning needing to throw up followed by sitting on the bog crapping Blood. This can go on for hours, and I continue to retch even though there is nothing left to bring up. So the big sessions are no more and Ive had to switch to wussy bottles and even then drink only a few. Spirits are a big no-no. Sob!


  • Registered Users, Registered Users 2 Posts: 33,518 ✭✭✭✭dudara


    My first cousin suffers from Crohn's and like some of you, it took ages for him to be diagnosed. I think he keeps it under control at the moment with steroids, but he's already had surgery. My aunt is worried at the moment, as he's having a bit of a relapse right now. I also suffer quite a bit from an irritable bowel, so I have some experience of how *****y this can be.

    There's a centre in UCC, the alimentary pharmacutical centre (APC) whic conduct research into the use of probotics in controlling such things as Crohn's.


  • Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    DaBreno wrote:
    Even when Im laid out by a bad dose, I cant eat most things yet a Pizza from Apache is grand. Weird.

    I know what you mean- when I'm feeling awful, about the only food I can consistently eat is a chicken sandwich from O'Briens.....

    I went through the stage of trying to decide whether it was worth going out boozing and feeling terrible for so long afterwards, and decided it just wasn't worth it. Unlike you- I do get away with a couple of whiskies though- providing they're only on rare occasions when I'm in good form. It is nice.

    As I've had so much of my intestines removed, I have to take a bewildering mix of things to try to slow down my digestive system- was taking 6 Imodium every morning for a long time- but have a few other concoctions now to supplement it- such as Codeine Phosphate tablets. As they are a morphine derivative, they can become addictive, so they are far from ideal too..... :(

    Tried to get on one of the clinical trials in the APC in Cork previously- but a combination of my location and other factors just didn't help. It will be interesting to see the outcome of their research.

    Was looking at research on Johnnes Disease (in sheep I think) which is basically the same as Crohn's. There are a number of studies ongoing on it at the moment. Incidentally its a notifiable disease to the Department of Agriculture- as they are unsure how it occurs they are worried that it will spread through flocks of sheep- even though there is nil proof of this happening. Makes you wonder about Crohn's.....

    I delibertly glossed over a lot of the less savoury aspects of Crohn's such as all the bleeding etc- as I didn't want to scare people on the thread. Anyone who is afflicted with Crohn's knows only too well a lot of the problems associated with this.

    Another problem I have, is I seem to be exhausted the whole time? Even when I am in good form- I just don't have the energy to do things for long periods of time. Also- concentration- my mind seems to wander- as though I want to go to sleep......

    I don't know!


  • Closed Accounts Posts: 43,044 ✭✭✭✭Nevyn


    smccarrick wrote:
    Another problem I have, is I seem to be exhausted the whole time? Even when I am in good form- I just don't have the energy to do things for long periods of time. Also- concentration- my mind seems to wander- as though I want to go to sleep......

    I don't know!

    Wel it si helpfull to hear about how it can effect you systems engery and here we tought that Dad had become all old and grumpy early before he even hit sixty. IT can be a big strain on family and friends until they figure out that really is all you are capible off and your not just putting them off.


  • Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    Thaed wrote:
    Wel it si helpfull to hear about how it can effect you systems engery and here we tought that Dad had become all old and grumpy early before he even hit sixty. IT can be a big strain on family and friends until they figure out that really is all you are capible off and your not just putting them off.


    It can be difficult- as you have limitations that are a lot less than either you would like them to be, or other people would normally expect them to be. Also you do have good spells- but as much as one night bad sleep can set you back for weeks. Its not easy- if it was constantly the same- people might recognise that you are capable of X- but when you have a flareup things get so much worse. As its not an apparent disease- often in my case I could be in work with a temperature of 101-103, feeling dizzy, trying to make sense of figures with my boss barking orders at me- and just not even have the energy to reply to her. I've ended up sitting at my desk at 7PM some evenings- trying to get the energy to walk down to the carpark to get to the car, and then drive home with all the windows open so the gale through the car will keep me awake...... I'm only 30- often I feel like I'm 70...... :(

    As Crohn's isn't an obvious illness- people do not tend to make allowances for you. Even harder- often you don't accept that you yourself have limitations- things that are so simple for everyone else, you just don't have the energy to do. It can be so frustrating.....


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  • Closed Accounts Posts: 1,156 ✭✭✭DaBreno


    smccarrick wrote:
    Another problem I have, is I seem to be exhausted the whole time? Even when I am in good form- I just don't have the energy to do things for long periods of time. Also- concentration- my mind seems to wander- as though I want to go to sleep......

    I find at the start of an attack, Im completley whacked and dont know why. Its when I start seeing a lot of blood I know whats happening. Being exhausted is complete crap. Its like being in the middle of a week long hangover. There are days I just cant get out of the sack and have to phone in late to work before Im even out of bed!

    I dont think other people completley grasp this part of it. Its often misinterpreted as lack of interest in them. Its a nightmare when the folks call and all I can say is "thats grand" and the like. It can be extremley hard to concentrate on work also. The days drag on forever and I get nothing done.

    Im actually going into Hospital again this week to have it looked at. Its been at me quite frequently since August so the Doc wants another camera job(yikes!) to see if it has spread. Will be back on Friday and will let ye know. (Im on a liquid diet today and tomorrow and its a pain in the nuts :D )

    In the meantime, Elan are banging away on a permanent treatment which according to their website seems to be nearing completion and is undergoing trials. Fingers crossed.


  • Posts: 0 Vivian White Fig


    I thought IBS and Crohn's Disease were 2 different things, Crohn's being much more serious? 2 doctors have said I likely have IBS but neither seemed that bothered, they just said to watch what I eat and take these tablets if I get bloating etc. My usual symptons are stomach area pains, bloating, diarrhea etc. I'm usually fine, but certain things like coffee, Chinese food, McDonalds set me off. It used to be loads worse, I used to get awful pains and bloating after EVERYTHING, thats why I went to the Dr.
    I always feel tired, depressed and sluggish but I dunno if thats connected.


  • Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    I thought IBS and Crohn's Disease were 2 different things, Crohn's being much more serious? 2 doctors have said I likely have IBS but neither seemed that bothered, they just said to watch what I eat and take these tablets if I get bloating etc. My usual symptons are stomach area pains, bloating, diarrhea etc. I'm usually fine, but certain things like coffee, Chinese food, McDonalds set me off. It used to be loads worse, I used to get awful pains and bloating after EVERYTHING, thats why I went to the Dr.
    I always feel tired, depressed and sluggish but I dunno if thats connected.
    Yes, sort of....
    Iritable Bowel Syndrome is different from Crohn's in that diseases covered under the IBS umbrella do not tend to cause inflamation of the internal organs. Thus IBS would include a number of disease including the misnamed- mucous colitis, spastic colon, spastic bowel, and functional bowel disease (all of which are really the one).

    Colitis - is an inflamation of the large intestine. Crohn's Disease tends to (initially at least) affect parts of the small intestine (most often the illeum being the starting point - but can migrate literally anywhere in the digestive tract).

    IBS - is what is known as a "functional disorder" - that is tends to be no sign of disease when the colon is examined (as opposed to Colitis or Crohn's where disease is obvious). Unlike Crohn's in particular - IBS does not cause permanent harm to the intestines and does not lead to intestinal bleeding of the bowel or to secondary serious diseases such as cancer.

    In practice IBS sufferers tend to be able to control their conditions through diet - but would often be prescribed fibre supplements (a course of action that would send a Crohn's sufferer into hospital quicker than clicking your heels together twice).

    In that they effect the same part of the body- namely the digestive tract, they are similar, but Crohn's (and Colitis to a lesser extent), through inflamation, fistulas, scarring, prolonged blood loss, secondary diseases (such as cancer) etc- do tend to be more serious.

    Then again - Crohn's occasionally spontaneously vanishes in some people- and never recurs- so there is no quick and ready rule.

    The pronounced manner in which IBS affects patients, can be very similar to the sympthoms afflicting Crohn's/Colitis patients - Crampy pains, Gassiness, Bloating, Massive changes in toiletry habits. Crohn's or Colitis sufferers would tend to also have (possibly) some (or all) bleeding, fever, weight loss and persistent severe pain- which would NOT be present in IBS.

    Some surveys claim as high as 20% of the population of the first world suffers from some form of IBS, with greater than 10% of GP visits currently diagnosising IBS (mostly mild).

    Lots of interesting info on the NACC website (in relation to Colitis and Crohn's....)

    http://www.nacc.org.uk/content/home.asp

    While not belittling IBS in any manner, you should note that there is a distinct difference between IBS and IBD - (Syndrome and Disease), Crohn's and Colitis would be classified as diseases.

    Hope this helps,

    S.


  • Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    http://crohns.meetup.com/64/

    Provisional schedule- meetup first Wednesday of every month, Food Emporium, Abbey Street @7PM.

    Its the Jervis stop on the Luas btw.

    If you register on the above website you will be sent reminder e-mails, and if there is a change in location or schedule it will be e-mailed to you. There is also a bulletin board on the site where you can post a brief introduction to yourself (if you like). Its free to join the website- there are no charges involved.....

    3 members so far - hopefully a few more from here will join.

    Shane


  • Closed Accounts Posts: 1,156 ✭✭✭DaBreno


    DaBreno wrote:
    Im actually going into Hospital again this week to have it looked at.

    Since Im sure ye were all just dying to know, I got on grand. Hasnt spread but the tummy is inflamed. He may have to put me down. Its for the best.


  • Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    Thats good to hear.
    More cortisone I guess for the inflamation?

    Great to hear your good news!


  • Closed Accounts Posts: 1,156 ✭✭✭DaBreno


    Cheers for that Sir!. No mention on drugs yet.


  • Registered Users, Registered Users 2 Posts: 35,522 ✭✭✭✭Gordon


    Did you guys all have to have a barium meal? Isn't that just the most disgusting thing you've ever drunk?!


  • Moderators, Society & Culture Moderators Posts: 32,286 Mod ✭✭✭✭The_Conductor


    Over the past 10 years, I would imagine I've had 7 or 8 barium meals.....
    There is another test that they use as well now- called something like enhanced nuclear resonancing- where you have to drink 2-3litres of metalic orange juice (and tastes like lead, there is no other description for it), and then be injected with tracer dyes so they can view the blood flow around your organs.
    Thats even worse than the barium.......

    One positive thing about us having the barium meals (and believe you me, its scraping the bottom of the barrel to call it a positive thing)- is Crohn's sufferers often have what is commonly known as a "leaky bowel"- that is things fly through us. So- where a lot of people may have to wait hours after drinking the barium milkshake (they thought I was being a comedian when I asked for a specific flavour last time)- in our case its normal to be able to follow the barium through our systems in no time flat.

    Don't like barium, no, but there are far worse things out there.....


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  • Closed Accounts Posts: 403 ✭✭case n basket


    I have Crohn's disease, but fortunately it's been inactive for a good few years now. IIRC I was diagnosed with it when I was 10 and it was pretty bad for a few years. Hospital time, steroids, immuno-suppressants, fortisip (puke!) and so on. Stopped most of all that malarkey by the time i was about 16 with the exception of the fortisips which I attempted to drink for a few years after. /almost/ developed a taste for them in the end ;)

    I'm just happy I don't have a bad case of it now; makes me appreciate being (reasonably) healthy!


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