Crohn's Disease

The_Conductor · 25-03-2014 9:50am

Have to concur with the above 2 posters. Paying the 144 a month simply isn't feasible- I've 2 young children and a wife who is ill too- somehow we manage to work and pay creche fees- finding 144 a month for medication is just a bridge we cannot cross. Regularly I just do without- as in many cases pharmacies here seem to have the idea that they know whats best for us- and obviously it doesn't suit. My prescription says enteric coated deltacortil- aka so its released in the lower intestine. Instead I'm forced by local pharmacy to take generic prednisolone- which means I need to take 5 or 6 times the dose for the same therapeutic value- as its absorbed in the upper intestine instead- and I have 5 or 6 times the side effects (which doesn't help the osteopenia any........)

If you're not on the list of covered illnesses- which we aren't with Crohn's- you're pretty much left to sing.

Even some things like Neocytamen- which most of us are on (as B12 malabsorption/total lack of absorption is a classic sympthom of Crohns)- is problematic. It was simply not available here in the Republic for almost a year- and many of us went on epic treasure hunts, trying to find vials that pharmacies might have at the back of fridges somewhere.

The only thing that has saved me at all- is biting the bullet and going North- pharmacists here and government policy are- to ignore us until we become critical- and then treat the sympthoms- when giving a little medication before hand would have kept us out of hospital.

Personally- I had 22 days in hospital last year- I'm damn lucky to hold down my job taking this number of week days off- and last year was a good year.

shalalala · 25-03-2014 11:07am

My mother travels regularly to England. It didn't even occur to me! My meds are costing €60 a week as it is! Thank you guys. You have managed to make me feel less blue about it all.

Ush1 · 25-03-2014 12:02pm

The_Conductor wrote: »

I'm off Imuran now- because my white cell count fell off a cliff.
While on it- even more so than sore knuckles- were fingers and ankles.

As Crohn's sufferers we are also apparently prone to arthritis- so do talk to your consultant- there could well be treatments they can advise that might lessen/alleviate some of the symptoms.

It's disappointing because my Crohns seems very under control with Imuran. It is sorta in my fingers and knuckles. I'm due in with the consultant next week so will flag it to them then.

Razleavy · 25-03-2014 6:09pm

shalalala wrote: »

My mother travels regularly to England. It didn't even occur to me! My meds are costing €60 a week as it is! Thank you guys. You have managed to make me feel less blue about it all.

I take it you live in Ireland? Why not avail of the Drugs Payment Scheme?

http://www.citizensinformation.ie/en/health/entitlement_to_health_services/drugs_payment_scheme.html

Turtwig · 25-03-2014 6:24pm

Razleavy wrote: »

I take it you live in Ireland? Why not avail of the Drugs Payment Scheme?

http://www.citizensinformation.ie/en/health/entitlement_to_health_services/drugs_payment_scheme.html

Certain items aren't covered by the DPS scheme e.g Klean Prep, Dulcolax iirc.

The_Conductor · 25-03-2014 6:42pm

Jernal wrote: »

Certain items aren't covered by the DPS scheme e.g Klean Prep, Dulcolax iirc.

You can't those on a regular basis in any event- they're on the controlled list (as they tend to be abused by teenagers as diet aids- I'm not joking........)

Turtwig · 25-03-2014 6:50pm

Klean Prep as a diet aid! :eek:

Anyway, bad examples, only ones I could think of.

Problem with the DPS is you don't know what's not on it until you need it. Is Neocytamen on it ? Cytamin was removed, wasn't it?

The_Conductor · 25-03-2014 7:06pm

Jernal wrote: »

Klean Prep as a diet aid! :eek:

Anyway, bad examples, only ones I could think of. Problem with the DPS is you don't know what's not on it until you need it. Is Neocytamen on it ? Cytamin was removed, wasn't it?

I got Neocytamen (2 vials) on it last week (thanks for reminding me- I need a new prescription for it).

Turtwig · 25-03-2014 7:10pm

The_Conductor wrote: »

I got Neocytamen (2 vials) on it last week (thanks for reminding me- I need a new prescription for it).

Really? I was trying to remind you to send me some money? At least now I know my telepathy sort of works. Just need to refine my concentration.

Janedoe10 · 26-03-2014 12:54am

A question . What is Neocytamen used for ?

Turtwig · 26-03-2014 12:57am

Janedoe10 wrote: »

A question . What is Neocytamen used for ?

B12 deficiency. Pretty common with Crohns. B12 is pretty much absorbed in the ileum and a large proportion of crohns cases lead to compromised ileum function. So some crohnsies have no ability to absorb b12 from food so they need the vitamin injected into them.

Janedoe10 · 26-03-2014 12:59am

Ok that's what the B12 injections I get every 3 months from the docs are so . Didn't know the actual name though .thanksðŸ˜Š

shalalala · 27-03-2014 11:48am

The dps is great for a couple or family. But still very expensive for a single person. I have applied. Just waiting for my card

Turtwig · 28-03-2014 3:46am

Least we is making investors rich.

The world's 10 bestselling prescription drugs raked in $75.6bn of sales last year, led by Humira and other treatments for rheumatoid arthritis and autoimmune diseases.

Source.

Sales in $ Millions. (2013, 2012)
1 (1) Humira AbbVie Other anti-rheumatics 10,659 9,616
2 (2) Enbrel Pfizer/Amgen Other anti-rheumatics 8,776 8,496
3 (4) Remicade Johnson & Johnson/ Merck & Co Other anti-rheumatics 8,386 7,990
4 (3) Seretide/Advair GlaxoSmithKline Other bronchodilators 8,251 7,634
5 (6) Lantus Sanofi Anti-diabetics 7,592 7,155
6 (5) Rituxan Roche Anti-neoplastic MAbs 7,503 6,377
7 (9) Avastin Roche Anti-neoplastic MAbs 6,751 6,282
8 (7) Herceptin Roche Anti-neoplastic MAbs 6,562 6,253
9 (8) Crestor AstraZeneca Anti-hyperlipidaemics 5,622 6,149
10 (10) Abilify Otsuka Holdings Anti-psychotics 5,500 5,304

*Remicade is infliximab.

The_Conductor · 28-03-2014 9:23am

Between us and the diabetics- they don't need to focus on any other illnesses- they're sorted..........

There does seem to be a preponderance of drugs there for treating the symptoms of autoimmune diseases. Perhaps if someone came out with a treatment that targetted the causes of autoimmune disease- it would blow 6 of the top 10 earners out of the water- aka its financial suicide for the pharmaceutical industry to try to target the cause of Crohn's, Diabetes, Arthritis etc- there is far too much money to be made from treating the symptoms.

Turtwig · 28-03-2014 10:44am

To be fair though there is a plethora of research being thrown at investigating the causes of those illnesses. Until those are known symptom management and support is where the financial priorities will lie. Drug companies will always find other uses for their drugs. Cure crohns and there's plenty other places for them to throw biologics at. As long as the patents keep expiring they'll be forced to keep innovating. If they don't some other company will happily try take a slice of the pie. Humira's patent expires in 2016.

shalalala · 04-04-2014 8:51pm

Does anyone here have any experience getting health insurance to go abroad and having any problems? Just applied for my IEC and don't want my Crohn's to be the reason I don't get in.

The_Conductor · 05-04-2014 10:54am

shalalala wrote: »

Does anyone here have any experience getting health insurance to go abroad and having any problems? Just applied for my IEC and don't want my Crohn's to be the reason I don't get in.

Short term or longer term?
Even the likes of the VHI have good short-term cover- however, once you go over a set amount of time, you're expected to organise cover where you are then domiciled.

With the VHI you are covered abroad- providing you spend less than 180 in the calendar year, abroad. Once you go over- you need alternate cover.

If you're going abroad for a year- you can buy a top-up from some companies (colloquially known as 'back-packer insurance'). Last time I checked (which was several years ago)- it involved an additional payment of a few hundred- and had additional rules associated with it (e.g. repatriation was only covered in certain circumstances etc).

You really need to talk to your current insurer and find out what their rules are- in general though- once you go over 180 days, you need local cover...........

shalalala · 05-04-2014 2:19pm

The_Conductor wrote: »

Short term or longer term?
Even the likes of the VHI have good short-term cover- however, once you go over a set amount of time, you're expected to organise cover where you are then domiciled.

With the VHI you are covered abroad- providing you spend less than 180 in the calendar year, abroad. Once you go over- you need alternate cover.

If you're going abroad for a year- you can buy a top-up from some companies (colloquially known as 'back-packer insurance'). Last time I checked (which was several years ago)- it involved an additional payment of a few hundred- and had additional rules associated with it (e.g. repatriation was only covered in certain circumstances etc).

You really need to talk to your current insurer and find out what their rules are- in general though- once you go over 180 days, you need local cover...........

thank you for all that. It would be 2 years. But for example i am going on holiday for a few weeks soon. Got insurance. But it makes quite clear it doesn't cover you for any existing conditions. So if that is the same i would be screwed in Canada for 2 years!

The_Conductor · 05-04-2014 7:41pm

shalalala wrote: »

thank you for all that. It would be 2 years. But for example i am going on holiday for a few weeks soon. Got insurance. But it makes quite clear it doesn't cover you for any existing conditions. So if that is the same i would be screwed in Canada for 2 years!

When I was away for a few months- I kept enough money aside to buy a flight home if I needed one in a hurry- as once you're home, you're covered anyway. It would be one hell of a miserable painful flight- but you could make it work (as long as you got through the airport without collapsing- which is another worry I had).

You need to talk to your current insurer- no matter what you do- but at the same time- I'd be prepared to make contingency plans- because it just might not be possible to make anything work.

Have a look at what your Canadian options are- health insurance may be provided with the job- and if so- is there an exclusion period for pre-existing conditions etc etc

Gather as much information as possible.

shalalala · 05-04-2014 10:11pm

The_Conductor wrote: »

When I was away for a few months- I kept enough money aside to buy a flight home if I needed one in a hurry- as once you're home, you're covered anyway. It would be one hell of a miserable painful flight- but you could make it work (as long as you got through the airport without collapsing- which is another worry I had).

You need to talk to your current insurer- no matter what you do- but at the same time- I'd be prepared to make contingency plans- because it just might not be possible to make anything work.

Have a look at what your Canadian options are- health insurance may be provided with the job- and if so- is there an exclusion period for pre-existing conditions etc etc

Gather as much information as possible.

I will try, I have no current health insurance.

The_Conductor · 06-04-2014 9:54am

Ok- I hadn't realised that......

There is an interesting hybrid health system in Canada- provided by private companies, on a public basis (and largely funded through income tax deductions).

As you have a valid Canadian visa- you can apply for coverage in whichever state you plan to reside in- once you have been resident in that state for 3 months and 1 day. Until such time as you have been resident there for that length of time- you do not qualify for public health cover. Normally people would be advised to purchase travel insurance for the first 3 months- however, and unfortunately in your case, it won't cover pre-existing medical conditions.

There are a few very good sites out there that detail how the health system in Canada works and how someone who is going to Canada to work, or as a student, may avail of health cover.

Wikipedia has a reasonably good account of the Canadian system (there are at least 2 glaring inaccuracies in it- so handle with caution).

And for some-one travelling to Canada- for studying or work purposes, with a valid visa- this blog post is quite remarkable. (note- its a general one covering Canada as a whole- the separate provinces will have their own little twists and turns that you will have to explore and which may be unique to one province over another etc)

Main point- you will have Canadian public cover, akin to that available to any Canadian citizen, once you have been resident for 3 months and 1 day- but you will need to apply for it- it does not automatically accrue- and you will need to contact the specific provinical health service to determine their criteria and ensure you meet them.

Keep yourself well- make sure you look into the specific details, apply for health cover in the prescribed manner, if you move province you loose cover and have to re-apply over again to a new province (with another 3 months and 1 day waiting period) etc etc etc.

I hope this helps you,

Shane

SmileandNod · 07-04-2014 7:33pm

Hi All,

I am new to boards but wanted to share my story and get some valuable advice from you good people.

I got diagnosed with Chrons 5 weeks ago. To be honest I had a pretty good idea that the diagnosis was coming since Christmas but hoped it wasn't. I have a sister that has been diagnosed for the past 14 yrs since she was young so our family is no stranger to the challanges it can bring. For me the diagnosis wasn't just something that was bad for me but something I knew would affect my entire family. We are all extremely close and Chrons has been a part of my life ever since my sisters diagnosis. Always there for her, help whilst she was sick and doing all I can to make her life better.

Now here I am with my own diagnosis. The guilt for my family is nearly worse than the upset that I feel about me getting diagnosed. It seems that it may not be moderate as my first course of steroids didn't work and now we are on a 2nd course of steroids trying to judge the severity. I find myself guilt ridden for saying I'm feeling so bad considering my sister has her own daily battles ......

I'm not even sure what questions I have or what answers I am looking for but want to know if my feelings resonate with anyone....

Thanks for reading...

The_Conductor · 07-04-2014 7:50pm

SmileandNod- its a condition that can be managed, and treated- when you have active Crohn's it can feel like the end of the world, and indeed, on occasion I have wished it were the end of the world- but it isn't.

You don't have to feel guilty or apologise to anyone for having Crohn's- its sad that you have it, but its nothing you have any reason to feel guilty or apologise about- its a fact of life.

What you need to do at this point in time- is liaise with your gastrointestinal consultant- and get the current flare-up under control.

If the damage is extensive- your consultant may give you options that he or she might not necessarily consider for milder cases- but there are many different treatment regimens out there- you need to discuss this with your consultant- or if you're feeling so washed out- bring your sister or someone who actually knows what you're going through- to help you discuss it.

Stop feeling guilty and feeling you have to apologise- and instead- try to take care of yourself- you sound like your used to taking care of other people- well, now, you need to take care of yourself.

SmileandNod · 07-04-2014 8:01pm

The_Conductor wrote: »

SmileandNod- its a condition that can be managed, and treated- when you have active Crohn's it can feel like the end of the world, and indeed, on occasion I have wished it were the end of the world- but it isn't.

You don't have to feel guilty or apologise to anyone for having Crohn's- its sad that you have it, but its nothing you have any reason to feel guilty or apologise about- its a fact of life.

What you need to do at this point in time- is liaise with your gastrointestinal consultant- and get the current flare-up under control.

If the damage is extensive- your consultant may give you options that he or she might not necessarily consider for milder cases- but there are many different treatment regimens out there- you need to discuss this with your consultant- or if you're feeling so washed out- bring your sister or someone who actually knows what you're going through- to help you discuss it.

Stop feeling guilty and feeling you have to apologise- and instead- try to take care of yourself- you sound like your used to taking care of other people- well, now, you need to take care of yourself.

Very wise words, thank you. I find that alot of the the time I am the go to person for people if they ever have any problems and I am ALWAYS the person that family tend to go to.

I need to step back, that I know, and take time out to heal me. Don't get me wrong I don't feel overly negative about being diagnosed albeit it is very early I just need to try and rid whatever guilt I feel.

There are also real life things that continue regardless of whether your sick or not. The real life problem of trying to get your condition under control before you may lose your job, people are understanding but to a point...... I suppose its all overwhelming at the moment.

Thanks for taking the time to share, I sincerely appreciate it.

Janedoe10 · 07-04-2014 9:26pm

SmileandNod wrote: »

Hi All,

I am new to boards but wanted to share my story and get some valuable advice from you good people.

I got diagnosed with Chrons 5 weeks ago. To be honest I had a pretty good idea that the diagnosis was coming since Christmas but hoped it wasn't. I have a sister that has been diagnosed for the past 14 yrs since she was young so our family is no stranger to the challanges it can bring. For me the diagnosis wasn't just something that was bad for me but something I knew would affect my entire family. We are all extremely close and Chrons has been a part of my life ever since my sisters diagnosis. Always there for her, help whilst she was sick and doing all I can to make her life better.

Now here I am with my own diagnosis. The guilt for my family is nearly worse than the upset that I feel about me getting diagnosed. It seems that it may not be moderate as my first course of steroids didn't work and now we are on a 2nd course of steroids trying to judge the severity. I find myself guilt ridden for saying I'm feeling so bad considering my sister has her own daily battles ......

I'm not even sure what questions I have or what answers I am looking for but want to know if my feelings resonate with anyone....

Thanks for reading...

As said by other posters don't feel guilty . I think you are more worried that you won't be as strong for others now because of your own diagnosis , but another of looking at it crohns did not start 5 weeks ago because you were diagnosed you have had it before now and have been managing it without you realising it , imagine now when the medics and you know how to treat the symptoms .
You will still be there for your sis but u prob will have to think of yourself more now too . Crohns is manageable as is colitis all we need is to right information .
Medication improvements has came along in leaps and bounds for this compared to as recent as 20 yrs ago where surgery was put forward much earlier .

Glad you have found this forum too . I have got some good info and viewpoints on stuff although I know it is not medically endorsed . Some times it's the anonymous impartial opinion we want .

Hope it helps u too . Take care.

Turtwig · 08-04-2014 2:07am

The thing about diagnosis of any illness is that every individual experience is different. How one person experiences the flu isn't necessarily how the other person experiences it. One person ends up in hospital for two months and long lasting complications. The other is only bed bound at home for a week or so. It is generally safe to assume that both people with our imaginary flu didn't have to get a limb amputated! That isn't to say though that individuals with the flu will never have to get a limb amputated.

There's many things nobody can yet tell you about your crohn's diagnosis. What will be your quality of life in six months, 12 months, 1 year, 2 years... time? Will your career and hobbies be affected? The level of support you'll be able to provide to others? Or you'll need from them? The state of your finances? etc. What everyone can you tell both now and then though is that you're still the very same person. Just because you've been diagnosed with a potentially debilitating condition doesn't mean you're any less the person once were. I know, scratch that, we all know, that at times it can feel like we're less than ourselves. There's a sense of inferiority. Illness somehow knocks you back. Even more so if you feel you should be looking after someone else. Doubly so, when your world has just been rocked by a new diagnosis. There's many things right now that cannot be answered. The key is though to be kind to yourself, voice your fears and anxieties with those who are in your support structure. If you need to by all means vent here. Remember also that just as with the two folks with the flu, you and your sister may experience crohn's very very differently. (Or it might be identical!) You may still be the one supporting her. Or the roles may have to reverse. Only time will tell.

Be extra nice to yourself. You can't be nice to others if you're not being nice to yourself, anyway.

Janedoe10 · 09-04-2014 12:48pm

On another note has anyone been advised by the consultants that your medical history indicates you have markers of both crohns and ulcerative colitis ? It's academic at this stage as I have stable for 3 years apart from needing B12 every now and again .

The_Conductor · 09-04-2014 12:53pm

Janedoe10 wrote: »

On another note has anyone been advised by the consultants that your medical history indicates you have markers of both crohns and ulcerative colitis ? It's academic at this stage as I have stable for 3 years apart from needing B12 every now and again .

I can honestly say I have never had any conversation with my consultant about markers- of any nature. It is a bit academic if you've been definitively diagnosed with Crohn's- as while UC is confined to the large intestine- Crohn's can attack there too- so having Crohn's pretty much means a separate diagnosis of UC is irrelevant in the context of the Crohns (though obviously if you hadn't Crohn's, its anything but irrelevant).

Janedoe10 · 09-04-2014 12:59pm

The_Conductor wrote: »

I can honestly say I have never had any conversation with my consultant about markers- of any nature. It is a bit academic if you've been definitively diagnosed with Crohn's- as while UC is confined to the large intestine- Crohn's can attack there too- so having Crohn's pretty much means a separate diagnosis of UC is irrelevant in the context of the Crohns (though obviously if you hadn't Crohn's, its anything but irrelevant).

Yep it's a new one on me . I have been indeterminate for so long I had accepted that . I guess the mild proctitus that escalates to toxic mega colon in a few weeks and then fast forward to inflammation on a site after reversal 5 years later is where they are coming up with this now . To be honest I really don't care at this stage as long as there is suitable treatment for me when any thing changes .
Thanks conductor

Crohn's Disease

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