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Crohn's Disease

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  • Registered Users Posts: 1,593 ✭✭✭Northern Monkey


    Hope everyone is doing well.

    I'm up in Northern Ireland at the minute and was running low on my prescription (200mg imuran daily), so decided to get a months supply from a chemist up here.

    I don't remember the exact number, but my prescription is somewhere around €55 per month from a chemist in Dublin, so I was expecting a similar bill from the chemist up north. I was a bit shocked when I went to pay and they asked me for £12.48!:eek:

    I know where I will be getting mine from in future!


  • Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    Are any of us allowed us NHS prescriptions up North?
    Do you have to prove residency or anything?
    Whats to stop you nipping into a GP and getting a prescription and then nipping into a local pharmacy?
    The price differential is startling........


  • Registered Users Posts: 1,593 ✭✭✭Northern Monkey


    smccarrick wrote: »
    Are any of us allowed us NHS prescriptions up North?
    Do you have to prove residency or anything?
    Whats to stop you nipping into a GP and getting a prescription and then nipping into a local pharmacy?
    The price differential is startling........

    They put it through as a private prescription for me. It was my prescription from my consultant down here with my Dublin address, so nothing to do with the NHS at all as far as I am aware. When i asked the chemist (boots), she just said as long as the prescription was from a registered Doctor they could dispense it.

    http://www.chemistdirect.co.uk/ seems to do an online dispensary at good prices and deliver to Ireland. I haven't used them, but I guess you send them a scanned copy of the prescription and they then post them out to you.


  • Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    So- they'd accept an Irish prescription, it doesn't have to be a UK prescription (I mean pharmacies up North- not the online pharmacys). I thought the prescription would only be filled if it were issued by a UK registered GP- sounds like I'm wrong?


  • Registered Users Posts: 1,891 ✭✭✭Stephen P


    I'm on Imuran now 4 weeks. The last couple of days my middle to lower back is very sore. Yesterday I my stomach felt like there was trapped wind right up to below my rib cage, its not too bad today but tender to touch. My IBD nurse is off today so can't contact her until Monday. Has anyone who's been on Imuran ever experienced this? It might be totally unrelated to my tabs.


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  • Registered Users Posts: 26,578 ✭✭✭✭Turtwig


    Stephen P wrote: »
    I'm on Imuran now 4 weeks. The last couple of days my middle to lower back is very sore. Yesterday I my stomach felt like there was trapped wind right up to below my rib cage, its not too bad today but tender to touch. My IBD nurse is off today so can't contact her until Monday. Has anyone who's been on Imuran ever experienced this? It might be totally unrelated to my tabs.


    Experienced that before going on Imuran and after going on it- are you sure you're just not going into or having a flare up?:(. But you're right it could be tablet related so mention it to your GP at the earliest possible moment.
    Lower back pains are a bitch, only thing I ever found to relieve them was paracetamol so I'd keep that for just when I want to lie down and sleep. For that trapped wind below the ribcage my GP has me on Buscopan and to be honest I think it's great it does seem to ease some of the pressure on my back too but that might just be wishful thinking on my part. Either way, perhaps ask your GP or nurse about that if you're not already on it?


    Hope those pains reside and you get some more comfort. :)


  • Registered Users Posts: 1,891 ✭✭✭Stephen P


    Thanks for your reply. :) I had problems with my back a few years ago so it may be related. My bloods have been ok the last few weeks so not sure if its the tabs. :confused:
    Jernal wrote: »
    Experienced that before going on Imuran and after going on it- are you sure you're just not going into or having a flare up?:(. But you're right it could be tablet related so mention it to your GP at the earliest possible moment.
    Lower back pains are a bitch, only thing I ever found to relieve them was paracetamol so I'd keep that for just when I want to lie down and sleep. For that trapped wind below the ribcage my GP has me on Buscopan and to be honest I think it's great it does seem to ease some of the pressure on my back too but that might just be wishful thinking on my part. Either way, perhaps ask your GP or nurse about that if you're not already on it?


    Hope those pains reside and you get some more comfort. :)


  • Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    Looks like another 3 or 4 units of O+ for me next week :(
    Trying to schedule it to take care of my little ones.


  • Registered Users Posts: 26,578 ✭✭✭✭Turtwig


    smccarrick wrote: »
    Looks like another 3 or 4 units of O+ for me next week :(
    Trying to schedule it to take care of my little ones.

    :(

    If it cheers you up any little bit I initially read your post as if you had the intention of killing your little ones. Sorry. :D
    Stephen P wrote: »
    Thanks for your reply. :) I had problems with my back a few years ago so it may be related. My bloods have been ok the last few weeks so not sure if its the tabs. :confused:

    Well tablets do cause side effects that don't show up in blood tests so who knows. All you can do is tell the nurse and GP and hope that they can do something to resolve the situation .:(


  • Registered Users Posts: 7,458 ✭✭✭CathyMoran


    Jernal wrote: »
    :(

    If it cheers you up any little bit I initially read your post as if you had the intention of killing your little ones. Sorry. :D
    His father in law, my daddy is critically ill in ICU so things are harder than normal for all of us...both my husband and I have lots of health issues too:(


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  • Registered Users Posts: 616 ✭✭✭LucyBliss


    So sorry to hear that, CathyMoran and smmccarrick. It's hitting ye all sides. I hope things ease up soon and that your Dad/FIL recovers.


  • Registered Users Posts: 618 ✭✭✭OUTDOORLASS


    Hi all, anybody any experience with Peritonal Inclusion Cyst. i have a 16cm one, which has been drained 4 times in the last 3 years. at my wits end with the damn thing. they dont want to operate on it in case the operation damages more bowel.....the drainage option only gives abt 3 months relief, but as it fills again life gets fairly ruf....I have a good sense of humour, and my glass is usually half full.....but somebody went to the bottle bank and brought all my glasses with them...!!
    tks...


  • Registered Users Posts: 1,891 ✭✭✭Stephen P


    I think I may have gallstones. Has anyone on here ever got gallstones? Is the risk of getting gallstones increased in people with Crohns? I'm waiting on an ultrasound, my app is in the first week of January but I think I'll go private to get it sorted before Christmas. I've back pain and stomach pain under my rib cage. Both my IBD nurse and GP mentioned gallstones.


  • Registered Users Posts: 618 ✭✭✭OUTDOORLASS


    Hi Stephen,
    Yep. Gallstones are one of the lovely elements of Crohns disease. Been there...done that...lost the Gallbladder...
    Similar pain to u..ended up in A and E. Gallstones confirmed...was public.....hospital was.nt inclined to operate.
    Went back to my GP. She thought an operation was inevitable. Problem was.nt going to go away. Went private.
    Consultant agreed with GP. Cd.nt do Keyhold surgery due to previous bowel surgery. So had full colerectomy.
    Basically, this is where they cut maybe a 3 or 4 inch incision...removed the gallbladdder. in hospital for 6 days.
    Sorted....
    Until the operation, had episoded of unreal pain...(they say it is worse than childbirth...LOL...)
    I would agree with u about going private and getting it sorted....
    Best of luck...


  • Registered Users Posts: 1,891 ✭✭✭Stephen P


    Hi and thanks for your reply.

    I have had Crohns 15 years and never had any signs of gallstones. Kinda strange that its surfacing now but suppose these things can happen suddenly.
    I wouldn't be able to afford to go private for the operation so hopefully the public system won't have too much of a waiting list.
    Is there any medication to help with it?

    Hi Stephen,
    Yep. Gallstones are one of the lovely elements of Crohns disease. Been there...done that...lost the Gallbladder...
    Similar pain to u..ended up in A and E. Gallstones confirmed...was public.....hospital was.nt inclined to operate.
    Went back to my GP. She thought an operation was inevitable. Problem was.nt going to go away. Went private.
    Consultant agreed with GP. Cd.nt do Keyhold surgery due to previous bowel surgery. So had full colerectomy.
    Basically, this is where they cut maybe a 3 or 4 inch incision...removed the gallbladdder. in hospital for 6 days.
    Sorted....
    Until the operation, had episoded of unreal pain...(they say it is worse than childbirth...LOL...)
    I would agree with u about going private and getting it sorted....
    Best of luck...


  • Registered Users Posts: 618 ✭✭✭OUTDOORLASS


    Hi Stephen, sri for delay in replying...
    Ye, gallstones seem to hit v suddenly..I had mine back in 2004. At that time there was no real medicinal treatment for it, just remove the organ, taking the stones with it. A lot cd have changed in the meantime. I got some herbal stuff trying to hold off another attack. One minute u.d be fine, and then suddenly somebody turned on a switch of the type of pain u described. Be very careful with what u eat...and remember u are heading into C.mas season...the season of excess...!!
    Very fatty diet cd set an attack off. Keep everything as low fat as possible. If u ate something very rich/fatty the gallbladder seems to go into overdrive, and where the pain comes from is when a stone gets stuck in a duct .....The only thing that relieved it for me was an injection of something very strong, and wait for the gallbladder to relax...
    Back then I had a much better private health insurance in comparison to what I have now. Cd.nt do now what I did then, going private...
    Do u have an appointment to see a consultant in Jan, or is it to get a scan....
    One thing u might consider...In the Euromedic Clinics, u can get an ultrasound for abt EUR95 and they give results to GP the following day....At least u cd confirm if u have gallstones. Euromedics have several Clinics throughout the country.
    Best of luck and take care.


  • Registered Users Posts: 1,891 ✭✭✭Stephen P


    Hi and thanks for the reply again :)

    I've booked myself into St. James's Private Clinic for tomorrow morning. I'm inpatient and couldn't wait until early January for the appointment in the public system :) I attend St. James's anyway so going there makes sense, and also, they didn't need a GP referral as they could access the original referral from my consultant.
    My IBD nurse and GP will both get the results within 24 hours so hopefully I'll know by the end of the week what it is.
    I've been fine the past 2 days, no pain but today now I'm starting to get some back pain. My GP said there's not really any medication to give only take the gallbladder out so God know's how long I'll be waiting for that, the fact that I have Crohn's might hurry it along a bit (it if is indeed Gallstones).
    Hi Stephen, sri for delay in replying...
    Ye, gallstones seem to hit v suddenly..I had mine back in 2004. At that time there was no real medicinal treatment for it, just remove the organ, taking the stones with it. A lot cd have changed in the meantime. I got some herbal stuff trying to hold off another attack. One minute u.d be fine, and then suddenly somebody turned on a switch of the type of pain u described. Be very careful with what u eat...and remember u are heading into C.mas season...the season of excess...!!
    Very fatty diet cd set an attack off. Keep everything as low fat as possible. If u ate something very rich/fatty the gallbladder seems to go into overdrive, and where the pain comes from is when a stone gets stuck in a duct .....The only thing that relieved it for me was an injection of something very strong, and wait for the gallbladder to relax...
    Back then I had a much better private health insurance in comparison to what I have now. Cd.nt do now what I did then, going private...
    Do u have an appointment to see a consultant in Jan, or is it to get a scan....
    One thing u might consider...In the Euromedic Clinics, u can get an ultrasound for abt EUR95 and they give results to GP the following day....At least u cd confirm if u have gallstones. Euromedics have several Clinics throughout the country.
    Best of luck and take care.


  • Registered Users Posts: 618 ✭✭✭OUTDOORLASS


    Thats gr8....and u.r not impatient...u.r in pain.......I would agree with what u are doing....getting it done privately....
    Hope it all goes ok.....
    Just as a side note....in case it happens sometime in the future..I also got a kidney stone last year...again sometimes linkd to Crohns....much easier to treat. Basically passed it. I think it has something to do with having too much calcium in your system..
    Best of luck tomorrow....


  • Registered Users Posts: 1,891 ✭✭✭Stephen P


    Well I had the ultrasound this morning and all was clear, no gallstones or kidney stones. I'm relieved but also frustrated. The IBD nurse is going to talk to the consultant tomorrow and see what the next step will be. It's very annoying :mad:
    Thats gr8....and u.r not impatient...u.r in pain.......I would agree with what u are doing....getting it done privately....
    Hope it all goes ok.....
    Just as a side note....in case it happens sometime in the future..I also got a kidney stone last year...again sometimes linkd to Crohns....much easier to treat. Basically passed it. I think it has something to do with having too much calcium in your system..
    Best of luck tomorrow....


  • Registered Users Posts: 618 ✭✭✭OUTDOORLASS


    Ah that is disappointing...its good that nothing showed up...but then again what the hell is it....at least if u had a stone somewhere it would be fairly straight forward to diagnose. I hate it when they cnt give u a straight forward reason.
    Maybe some of the other Crohnsies mite have a suggestion for u....


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  • Registered Users Posts: 469 ✭✭Janedoe10


    Stephen P wrote: »
    Well I had the ultrasound this morning and all was clear, no gallstones or kidney stones. I'm relieved but also frustrated. The IBD nurse is going to talk to the consultant tomorrow and see what the next step will be. It's very annoying :mad:

    Good that at least some things are ruled out .
    Can't speculate on what u have but personally I had pains under my rip cage .+ my belly button . Pain hit like a wave and to be honest it was like a spasm . Stomach got hard during the wave of pain. Back pain was worse in morning but eased during day . Stomach pain only happened cause I had hernias after surgery weaker muscles etc.
    Buscupon eased initially but they became like candy and nothing eased really .
    Hernia op helped all . Back pain still there but not as bad liveable .
    Did u ever have ops linked to your crohns ? Weaker muscles perhaps .


  • Registered Users Posts: 1,891 ✭✭✭Stephen P


    Had an op about 14/15 years ago, nothing since. I'm getting a DEXA scan in April to check out my bone density. It may be an ulcer, the doctor said ulcers can cause back pain but is rare. He gave me tabs last week in the event that it was gastric related. I haven't been taken them every day, the pain went and I stopped which was a mistake :o. The pain seems to start about 2 hours after my breakfast and eases slighly during the day. I'm still waiting to hear from the IBD nurse, she works half day on Friday's so I probably won't hear from her until Monday at this stage. I hope it's just something like an ulcer and can be easily treated with medication.

    Janedoe10 wrote: »
    Good that at least some things are ruled out .
    Can't speculate on what u have but personally I had pains under my rip cage .+ my belly button . Pain hit like a wave and to be honest it was like a spasm . Stomach got hard during the wave of pain. Back pain was worse in morning but eased during day . Stomach pain only happened cause I had hernias after surgery weaker muscles etc.
    Buscupon eased initially but they became like candy and nothing eased really .
    Hernia op helped all . Back pain still there but not as bad liveable .
    Did u ever have ops linked to your crohns ? Weaker muscles perhaps .


  • Registered Users Posts: 1,593 ✭✭✭Northern Monkey


    smccarrick wrote: »
    So- they'd accept an Irish prescription, it doesn't have to be a UK prescription (I mean pharmacies up North- not the online pharmacys). I thought the prescription would only be filled if it were issued by a UK registered GP- sounds like I'm wrong?

    Just to give an update on this, I was back in Belfast at the weekend and went to Boots to get another month's supply of Imuran. I asked the pharmacist what the situation was with Irish prescriptions being dispensed by them and she said that as long as the doctor is registered they can dispense it as a private prescription. I also asked her about dispensing more than a month's worth at a time and she gave me 3 months (and would have gave me the full prescription if they had more imuran in stock) for a grand total of £37.44 which is cheaper than one month down here!


  • Registered Users Posts: 1,891 ✭✭✭Stephen P


    As a matter of interest, how much is Imuran on its in the Republic? I get it with Pentasa so never know how much it is. Thanks.


    Just to give an update on this, I was back in Belfast at the weekend and went to Boots to get another month's supply of Imuran. I asked the pharmacist what the situation was with Irish prescriptions being dispensed by them and she said that as long as the doctor is registered they can dispense it as a private prescription. I also asked her about dispensing more than a month's worth at a time and she gave me 3 months (and would have gave me the full prescription if they had more imuran in stock) for a grand total of £37.44 which is cheaper than one month down here!


  • Registered Users Posts: 1,593 ✭✭✭Northern Monkey


    For me (120*50mg tablets per month) it is around €55 per month (but it might be slightly less or more than that as the pharmacist normally gives me 10% off).


  • Registered Users Posts: 1,229 ✭✭✭Dan133269


    Hello people, I hope everyone is doing well.

    I just wanted to ask if anyone has had any success in alleviating their symptoms by giving up wheat in their diet? I've read recently (on boards - health and nutrition forum) that wheat is apparently very bad, much to my surprise. Here's a paper on the subject: http://www.direct-ms.org/pdf/EvolutionPaleolithic/Cereal%20Sword.pdf

    Any thoughts?


  • Registered Users Posts: 26,578 ✭✭✭✭Turtwig


    Dan133269 wrote: »
    Hello people, I hope everyone is doing well.

    I just wanted to ask if anyone has had any success in alleviating their symptoms by giving up wheat in their diet? I've read recently (on boards - health and nutrition forum) that wheat is apparently very bad, much to my surprise. Here's a paper on the subject: http://www.direct-ms.org/pdf/EvolutionPaleolithic/Cereal%20Sword.pdf

    Any thoughts?

    Likewise hope everyone is doing well.

    I'm not a doctor but my understanding is that for us drastically altering our diets can alleviate symptoms. This is until the bacterial population in our guts reconfigures itself and any alleviation we received will only have been temporary.We get a false positive of sorts thinking changing our diet worked when it actually didn't.

    That said, the only person who knows your body is you. If you find that a certain food is causing your grievances then try cutting it out. I find that even well outside a flare up cabbage and orange juice in particular cause things to get messy.

    With regard to wheat, iirc, 1 in 4 crohns sufferers also have Coeliac disease. Basically anything that contains gluten has a strong tendency to make them fatigued, bloated etc. My own personal opinion is that wheat isn't good for us. But really that's mostly speaking from my own experiences - Even on the best of days eating anything that's wholegrain almost immediately makes me feel weaker and tired. So like everything, it might be ok for some and absolutely toxic for others. But I don't think wheat and Crohns are a good fit. You can't tell when the next flare up is going to be, or if you're currently about to start into one, and wheat during a flare up is usually a very bad idea.


  • Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    I have no issues whatsoever with wheat- my problem is with Maize in all its forms. If I were to eat a bowl of Corn Flakes- I'd be in A&E in absolute pain with a total obstruction within 6-8 hours. Then there are all the foods that are perfectly fine 99% of the time- and only cause issues when you're stressed or feeling under the weather. Packet soups fall into that category for me- I'm convinced its the MSG in them. With Crohn's it seems that there isn't a one size fits all approach- it depends on the person and some things that might hospitalise me- might be a staple diet for someone else.


  • Registered Users Posts: 618 ✭✭✭OUTDOORLASS


    Hi, I.m getting nowhere with CUH and an ongoing problem I have with a Peritonal Inclusion Cyst....so I.m going for
    second opinion..I have read back a bit in this forum about Prof Diarmiad O Donoghue in Vincents. I used to
    go to him years ago. Does anybody know if he is still holds clinics. The last I heard, was that he was only taking
    private patients in St Vincents Private. If he is, would any body have a contact no for a secretary...??
    Tks in advance...


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  • Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    01-2695033

    Yes- he doesn't do the public clinic any longer- but he still has his private clinic in the Private Hospital. I can't recommend him highly enough.


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