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Crohn's Disease

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    #1502
    smiley face
    Registered Users Posts: 6 ✭smiley face


    Hi I'm new to this forum.
    I just wish to ask people's advice about Ibd.I was referred in the summer with my bowel problems.Frequent diarrhoea,mucus, blood and weight loss.In sept I had an Ocg down and a sigmoidoscopy.This found lots of ulcers on my colon and suspected colitis.They wanted to do a fuller colonscopy to get a better picture and rules out chrons.They put me on the emergency list.I've gone for the full colonoscopy and the consultant has said biopsy results will take 6 wks.Is this the normal time for results?


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    #1503
    shalalala
    Closed Accounts Posts: 1,710 ✭✭✭shalalala


    smiley face wrote: »
    Hi I'm new to this forum.
    I just wish to ask people's advice about Ibd.I was referred in the summer with my bowel problems.Frequent diarrhoea,mucus, blood and weight loss.In sept I had an Ocg down and a sigmoidoscopy.This found lots of ulcers on my colon and suspected colitis.They wanted to do a fuller colonscopy to get a better picture and rules out chrons.They put me on the emergency list.I've gone for the full colonoscopy and the consultant has said biopsy results will take 6 wks.Is this the normal time for results?

    They told me two weeks so when mine took 6 I was lulled into a false sense of security so try not to worry too much but it will probably take the full 6 weeks


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    #1504
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,279 Mod ✭✭✭✭The_Conductor


    There isn't really a 'normal time' for results.
    It can depend on a long list of factors- not leastly the time of the year, and how busy they are- having had several done, I've found results are quickest in the summer (10 days to 2 weeks)- but slowest in the winter months (which corresponds with pretty much all hospital procedures).

    Assume its going to be the 6 weeks- if its quicker, great- but it may not be.


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    #1505
    smiley face
    Registered Users Posts: 6 ✭smiley face


    Thanks for both your replies.I just felt it was a long time as my last biopsy results from the sigmoidoscopy took less than 3 wks. I guess every test is different.The waiting is the hardest!


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    #1506
    shalalala
    Closed Accounts Posts: 1,710 ✭✭✭shalalala


    I have been in constant contact with a very young lady with crohns since I was diagnosed. We have never met but share the same treatments (although I was never operated on) and similar side effects.

    I got news today that she is in icu. It is not directly crohns related but I am so scared. I am scared for her and me and us. Her mother contacted me and asked me not to post anything on fb or anything which I wouldn't do. But I just need to get this out there.

    Please. Everyone pray. Also. Everyone, get your bloods checked, if you are in any pain get it checked out. Be that annoying patient that hassles the doctors. We know our bodies better then anyone else. Trust it when it says that something isn't right.


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    #1507
    patnor1011
    Registered Users Posts: 2,959 ✭✭✭patnor1011


    Any news about question if Crohn's will be considered as "medical condition" by Irish Water?


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    #1508
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,279 Mod ✭✭✭✭The_Conductor


    patnor1011 wrote: »
    Any news about question if Crohn's will be considered as "medical condition" by Irish Water?

    The proposal is to replicate the list in use in the UK- which does include Crohn's Disease as a medical condition.


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    #1509
    thingamagig
    Closed Accounts Posts: 56 ✭✭thingamagig


    Hi, I'm fairly new to here too. I was wondering how do people here come with the emotional impact of the disease? I'm asking as I've had the worst year/year and a half of the disease, not in terms of the seriousness of the inflammation, but the impact it has had on my life. Long story short, but I got a peri-anal fistula ( a tinsy one, but sore) and there was subsequent damage to the muscle. And of course, what heals easily when you're healthy, doesn't patch itself over quite so quickly when you're a crohnser. Spent the whole year, every bloody day, having accidents and reach the wc usually even though I was in the same room. ( Needless to say I was also in pain and some days had muscle/joint pain so debilitating that I had to drag myself upstairs. Other days I ran up them! Go figure)


    Was in a class setting (tg I was only the student) but I could not cope with the daily humiliation. Most days I ended up in tears, or on the verge of them breaking through. So guys, how do you cope? Do you talk to someone you trust, or can you bring the subject up with anyone? God knows I felt, and feel, isolated. ( p.s. excuse the rambling writing. never know how to put this into words) And do you get that, you look healthy so therefore you are bs?


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    #1510
    thingamagig
    Closed Accounts Posts: 56 ✭✭thingamagig


    Hi, I'm fairly new to here too. I was wondering how do people here come with the emotional impact of the disease? I'm asking as I've had the worst year/year and a half of the disease, not in terms of the seriousness of the inflammation, but the impact it has had on my life. Long story short, but I got a peri-anal fistula ( a tinsy one, but sore) and there was subsequent damage to the muscle. And of course, what heals easily when you're healthy, doesn't patch itself over quite so quickly when you're a crohnser. Spent the whole year, every bloody day, having accidents and reach the wc usually even though I was in the same room. ( Needless to say I was also in pain and some days had muscle/joint pain so debilitating that I had to drag myself upstairs. Other days I ran up them! Go figure)


    Was in a class setting (tg I was only the student) but I could not cope with the daily humiliation. Most days I ended up in tears, or on the verge of them breaking through. So guys, how do you cope? Do you talk to someone you trust, or can you bring the subject up with anyone? God knows I felt, and feel, isolated. ( p.s. excuse the rambling writing. never know how to put this into words) And do you get that you look healthy so therefore you are bs?


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    #1511
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,279 Mod ✭✭✭✭The_Conductor


    thingamagig - I'm sorry you've had such a hard time.
    It is difficult- most of us do have accidents from time to time (though rarely on such a protracted ongoing basis).

    Speaking from personal experience- I manage to work- and I do occasionally have accidents (every few days). I keep several changes of underwear in my drawer along with a change of clothes, and shower things- so if/when I have an accident- I can have a shower and clean myself up. I also keep industrial strength air freshner (Its actually called Blast- and is used to clear up the smell of must in boats)- alongside a bewildering array of deoderants and aftershave ever present, in case I need them........

    There are lots of groups out there where most of us are able to discuss these things- the Irish society for colitis and crohns, has a very active facebook page- and they organise regular meetings- and some members do little meetups from time to time (coffee morning type events- where people can relax and swap notes with people who understand what everyone is going through).

    Its not easy- and looking healthy, even when you're in excruciating pain- can be one of most unfair things of all. I've been given out to for using a disabled toilet- when I urgently needed one and there was none free- I've had all manner of abuse flung at me, by people who have no idea of what I'm going through- and think its fair game to hurl abuse, as I don't look ill.

    There are days- when we all just hide somewhere and cry at how unfair things are- at how unfair people are towards us.

    Don't give up- if you are finding things very difficult going- I'd also suggest insisting that your GI consultant comes up with a different regimen for you. Whatever you're doing at the moment doesn't seem to be working for you- life is too short- there are different ways of dealing with these issues.


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    #1512
    thingamagig
    Closed Accounts Posts: 56 ✭✭thingamagig


    The_Conductor wrote: »
    thingamagig - I'm sorry you've had such a hard time.
    It is difficult- most of us do have accidents from time to time (though rarely on such a protracted ongoing basis).

    Speaking from personal experience- I manage to work- and I do occasionally have accidents (every few days). I keep several changes of underwear in my drawer along with a change of clothes, and shower things- so if/when I have an accident- I can have a shower and clean myself up. I also keep industrial strength air freshner (Its actually called Blast- and is used to clear up the smell of must in boats)- alongside a bewildering array of deoderants and aftershave ever present, in case I need them........

    There are lots of groups out there where most of us are able to discuss these things- the Irish society for colitis and crohns, has a very active facebook page- and they organise regular meetings- and some members do little meetups from time to time (coffee morning type events- where people can relax and swap notes with people who understand what everyone is going through).

    Its not easy- and looking healthy, even when you're in excruciating pain- can be one of most unfair things of all. I've been given out to for using a disabled toilet- when I urgently needed one and there was none free- I've had all manner of abuse flung at me, by people who have no idea of what I'm going through- and think its fair game to hurl abuse, as I don't look ill.

    There are days- when we all just hide somewhere and cry at how unfair things are- at how unfair people are towards us.

    Don't give up- if you are finding things very difficult going- I'd also suggest insisting that your GI consultant comes up with a different regimen for you. Whatever you're doing at the moment doesn't seem to be working for you- life is too short- there are different ways of dealing with these issues.

    Thank you so much. I didn't realise they met up tbh. Could with a chat with someone who understands the disease (and talk about other things too- not adverse to having a laugh). I do know they are suggesting a temp colostomy to give the muscle time to heal. At this stage I am finally ready to accept it. I think my discomfort was heightened because I was stuck in a room with 20 or so people where the average age was 19! And every time I got up I was disrupting the delivery of a lesson... (kind of).

    I really admire your strength and I too have copped on to the benefit of having an emergency pack on me at all times. There were several times in the classroom when people picked up on the smell and there was a complaint about it. That hit hard and I spent several days in a bit of a tearful-zombie state. But no, there's no chance of me giving up either! Thank you for your kindness .


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    #1513
    thingamagig
    Closed Accounts Posts: 56 ✭✭thingamagig


    OUTDOORLASS wrote: »
    Took my shot of Humira last night. Noooo energy today....and major case of the munchies....All I.m doing is going
    from press to fridge trying to get energy from something. Just as well I have circuit training tonight. I might work off
    some of the calories I have eaten....Happy W.end to all....


    I thought I was the only one who finds it exhausting. I had a theory that because I'm afraid of needles (a bit) that the days I took Humira I was emotionally exhausted!! Nice to know there might be another explanation. I take Cellcept too so I tire faster than an OAP (once nearly conked out at a jumble sale- the high life)

    P.s. I'm sure you deserve the extra calories!


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    #1514
    thingamagig
    Closed Accounts Posts: 56 ✭✭thingamagig


    Thanks again. Sorry to write again but I can't edit the posts: Meant to say I am not averse to...


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    #1515
    OUTDOORLASS
    Registered Users Posts: 618 ✭✭✭OUTDOORLASS


    Odor....thats a topic that is not hit on often..I have found that to be a huge problem. On my part, when the
    Crohns is active I think your intestinal bacteria goes into over load, and smell from your output can be unreal. I sometimes think it could be used in Chemical Warfare...smell the enemy out of their hidey places....LOL....
    I had never heard of Blast...
    Nowadays there is more anti smelly stuff available. I used to get this reoccuring dream/nightmare where I had to go to the loo, and could.nt find anyplace to go where there was.nt somebody else sharing the loo. I used to go up stairs and up corridors and anytime I found a loo, it seemed to be a comunal toilet.
    Sometimes you would glory in having to be sick enough to go on an antibiotic, because it killed the bad bacteria as well, thus no smell from your output...
    I dont know how to put smiley faces into a post....but I am smiling as I type. Thank God for a black sense of humour...


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    #1516
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,279 Mod ✭✭✭✭The_Conductor


    This is the 'blast' I was talking of......

    The shipping on it is ridiculous- but it actually works (and the cranberry one smells nice- there are ones- such as vanilla or lemon and lime- that are overpowering and quite vile in their right.......)

    Yes- the stench is quite ridiculous- as indeed, is the amount of gas we can produce- sometimes to amuse myself I used imagine hooking a hose up my ass and somehow using the gas in a central heating system......... but, by god, the smell.........

    I really don't understand how its possible for us to smell so bad.......... but we do.......... :(


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    #1517
    thingamagig
    Closed Accounts Posts: 56 ✭✭thingamagig


    I hope no one minds me writing here for what seems like the hundredth time this week. But I am really confused and need to get a few things off my mind.

    So, as I have written before, I have had near daily accidents due to a complex fistula that has damaged my muscle. During that time I have sometimes had periods where I felt ok and had no accidents, usually for a max of two weeks ( I think this might be because the level of inflammation has an effect on the muscle healing). After this the accidents would return. When this first happed, I thought that I was lamgetting better and I was delighted. But it didn't last.

    In the summer I had an MRI scan of my fistula, and after this they began to treat my disease as they would crohn's (I had been diagnosed with Ulcerative Colitis before this). As a result of this, I was put on humira ( used with the Cellcept I had already been on). After about two months, I developed another fistula (nowhere near the muscle, tg). Basically they then suggested a temp colostomy as I was not responding to the Humira. However, in the last two weeks, praise Jesus!- I have been accident free. My second fistula has also healed and is now just a mere bump. But the first fistula seems to still be oozing. I have no idea what the hell they are going to suggest now or whether I am actually going to stay well. My appointment is soon and my head is all over the place.


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    #1518
    Northern Monkey
    Registered Users Posts: 1,593 ✭✭✭Northern Monkey


    I'm not much help on the fistula, but I'd say it was a good 8 weeks from the start of taking humira that my symptoms started to die down.


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    #1519
    thingamagig
    Closed Accounts Posts: 56 ✭✭thingamagig


    Northern Monkey wrote: »
    I'm not much help on the fistula, but I'd say it was a good 8 weeks from the start of taking humira that my symptoms started to die down.


    Thanks. Does take a while. Unfortunately it has been months. Thanks for input though andI feel better after just writing this and talking to someone who knows something about the disease. I am so not an expert on fistulas either. Whole thing still confuses me. Didn't know what a little harmless-looking abscess could turn into.


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    #1520
    1966
    Registered Users Posts: 1,655 ✭✭✭1966


    The_Conductor wrote: »
    The proposal is to replicate the list in use in the UK- which does include Crohn's Disease as a medical condition.

    Proposed changes to Medical Cards announced today seems to permit Doctors recommending Cards for patients....any chance for Crohns sufferers now?


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    #1521
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,279 Mod ✭✭✭✭The_Conductor


    1966 wrote: »
    Proposed changes to Medical Cards announced today seems to permit Doctors recommending Cards for patients....any chance for Crohns sufferers now?

    Are the rules based on means- or medical conditions?


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    #1522
    shalalala
    Closed Accounts Posts: 1,710 ✭✭✭shalalala


    The_Conductor wrote: »
    Are the rules based on means- or medical conditions?

    Both as far as I can tell. Tbh it looks like it could change something. Varadkar seems to have a clue about what needs to be done.

    It looks like there will be medical cards for some and access to treatments or medication for free for others. So it isn't a one size fits all. Also only one application process! Yay


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    #1523
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,279 Mod ✭✭✭✭The_Conductor


    How does one apply?
    Sorry for being a bit clueless.......


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    #1524
    shalalala
    Closed Accounts Posts: 1,710 ✭✭✭shalalala


    Never seen you ask a question! :pac:

    I jest. This is all I have managed to read on it http://m.rte.ie/news/2014/1125/662286-medical-cards/ even slight changes will help most people, cannot get much worse. I am one of the lucky few that got a card until 2017 with no review. This was after they lost parts of my application, lied and just generally acted stupid. I actually got a letter of apology from varadkar after I complained through yoursay twice (because they lost my first complaint).


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    #1525
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,279 Mod ✭✭✭✭The_Conductor


    Dammit, dammit, dammit.......
    The Expert Panel recommended that a person's means should remain the main qualifier for a medical card.

    It also said it would not be feasible, desirable, or ethically justifiable to list medical conditions in priority order as a means of determining medical card eligibility.


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    #1526
    shalalala
    Closed Accounts Posts: 1,710 ✭✭✭shalalala


    But...

    "There will be changes in relation to the discretionary medical card process, allowing the HSE to also take account of medical hardship and burden of illness in assessing certain cases.

    The HSE is to also ensure a more integrated and sensitive application process, involving a greater exchange of information between the central assessment office and local health staff familiar with the patient's circumstances.

    Family GPs, public health nurses and social workers will be consulted to ensure that all decisions are fully informed.

    The HSE and the Department of Health are to examine the best way to meet the needs of people with significant medical conditions who do not hold a medical card.
    ...
    the new system will see all those in need of a medical card treated equally and will be more patient-centred rather than just looking at "a set of numbers".

    He said that because doctors and social workers are to be included in assessments for patient eligibility, the system should be fairer,
    ...
    Last month, Mr Varadkar said the Department of Health wanted to change the current system of discretionary medical cards, to introduce the concept of medical hardship.

    He proposed this for cases where there is a sick child and their illness has an impact on the family, and for an individual where their illness has a big impact on them."

    I can see how this might help you. I know that you have had a worse time with crohns then many of us so if doctors etc. Are involved, you may not get a full medical card, but maybe access to your treatments for free?


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    #1527
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,279 Mod ✭✭✭✭The_Conductor


    I haven't actually gone to a GP at all this year- since my GP retired.

    I genuinely don't know where to go from here......... First step- a new GP, I guess.........


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    #1528
    CarrickMcJoe
    Registered Users Posts: 3,379 ✭✭✭CarrickMcJoe


    thingamagig wrote: »
    I hope no one minds me writing here for what seems like the hundredth time this week. But I am really confused and need to get a few things off my mind.

    So, as I have written before, I have had near daily accidents due to a complex fistula that has damaged my muscle. During that time I have sometimes had periods where I felt ok and had no accidents, usually for a max of two weeks ( I think this might be because the level of inflammation has an effect on the muscle healing). After this the accidents would return. When this first happed, I thought that I was lamgetting better and I was delighted. But it didn't last.

    In the summer I had an MRI scan of my fistula, and after this they began to treat my disease as they would crohn's (I had been diagnosed with Ulcerative Colitis before this). As a result of this, I was put on humira ( used with the Cellcept I had already been on). After about two months, I developed another fistula (nowhere near the muscle, tg). Basically they then suggested a temp colostomy as I was not responding to the Humira. However, in the last two weeks, praise Jesus!- I have been accident free. My second fistula has also healed and is now just a mere bump. But the first fistula seems to still be oozing. I have no idea what the hell they are going to suggest now or whether I am actually going to stay well. My appointment is soon and my head is all over the place.






    God, you're having it rough. It was as a result of a fistula that I had to have a permanent colostomy fitted 18 yrs ago. Its not the end of the world and to tell the truth, it was a huge relief for me. I was fed up taking up to 27 tablets a day, weight loss etc.
    There seems to be a lot of new medicines now as I suffered from colitis for 10 years. Keep the chin up and get well soon.
    Pity there was no list brought in for medical cards, think it will still be difficult to procure one.


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    #1529
    thingamagig
    Closed Accounts Posts: 56 ✭✭thingamagig


    CarrickMcJoe wrote: »
    God, you're having it rough. It was as a result of a fistula that I had to have a permanent colostomy fitted 18 yrs ago. Its not the end of the world and to tell the truth, it was a huge relief for me. I was fed up taking up to 27 tablets a day, weight loss etc.
    There seems to be a lot of new medicines now as I suffered from colitis for 10 years. Keep the chin up and get well soon.
    Pity there was no list brought in for medical cards, think it will still be difficult to procure one.

    Fistulas: small but my can they cause damage. I am glad you are happy with your colostomy. And yes, there's a heck of new meds. Cellcept is one that's only recently - I think-being used with ibd sufferers. Are fistulas common with colitis?Just wondering as after I got my second one my diagnosis changed form colitis to crohn's. Though I'm not sure that diagnosis is set in stone either. Confusing business this ibd!

    Anyhow, I got GOOD news today. They are seeing how things go over Christmas. Things are very positive at the minute: I am accident free (as most adults like to be!) and my second fistula has healed. The Humira must be having some impact. As long as this keeps and I don't add another fistula to my collection, no colostomy for me!!

    Thanks for your good wishes and hope you keep in good health! Ps, I'm afraid not all those with ibd lose that much weight. When I was first diagnosed I had serious inflammation of the bowel (and a heck of pain) but no incontinence. Didn't lose ANY weight. Bowel was impacted with faeces as far as I know. There's no 'typical' flare for me, it's up to the gods what happens !

    good luck!


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    #1530
    thingamagig
    Closed Accounts Posts: 56 ✭✭thingamagig


    CarrickMcJoe wrote: »
    God, you're having it rough. It was as a result of a fistula that I had to have a permanent colostomy fitted 18 yrs ago. Its not the end of the world and to tell the truth, it was a huge relief for me. I was fed up taking up to 27 tablets a day, weight loss etc.
    There seems to be a lot of new medicines now as I suffered from colitis for 10 years. Keep the chin up and get well soon.
    Pity there was no list brought in for medical cards, think it will still be difficult to procure one.

    Fistulas: small but my can they cause damage. I am glad you are happy with your colostomy. And yes, there's a heck of new meds. Cellcept is one that's only recently - I think-being used with ibd sufferers. Are fistulas common with colitis?Just wondering as after I got my second one my diagnosis changed form colitis to crohn's. Though I'm not sure that diagnosis is set in stone either. Confusing business this ibd!

    Anyhow, I got GOOD news today. They are seeing how things go over Christmas. Things are very positive at the minute: I am accident free (as most adults like to be!) and my second fistula has healed. The Humira must be having some impact. As long as this keeps and I don't add another fistula to my collection, no colostomy for me!!

    Thanks for your good wishes and hope you keep in good health! I am on a lot of meds like you were but didn't lose much, if any, weight. When I was first diagnosed I had serious inflammation of the bowel (and a heck of pain) but no incontinence. Didn't lose ANY weight. Bowel was impacted with faeces as far as I know. There's no 'typical' flare for me, it's up to the gods what happens !

    good luck!


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    #1531
    CarrickMcJoe
    Registered Users Posts: 3,379 ✭✭✭CarrickMcJoe


    It was the only fistula I had, but the pain was excruciating. Both sh1t and puss built up. Was told it does happen but by a general surgeon and not a specialist on the subject. Weight dropped from 13 to 9 stone, blood count of 6. Constantly getting transfusions. Never saw a doctor since op, until I had a feckin heart attack in Sept


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