Crohn's Disease

The_Conductor

Its not licensed for sale in Italy. Talk to your consultant, there may be good alternates available. Note- it belongs to a family of broncho-dilators / muscle relaxants, its more commonly used in treating asthma than Crohns (though given how it works I can see how it would be helpful)

shalalala wrote: »

Another random question. Anyone brought meds abroad? Going to Italy and on mezavant which is so incredibly expensive here wondering if anyone had an idea of the price abroad?

SmileandNod

Hi all. Just wanted to ask a question. Has anyone here continued to lose weight whilst on steroids? Just diagnosed but steroids don't seem to be helping.

Turtwig

SmileandNod wrote: »

Hi all. Just wanted to ask a question. Has anyone here continued to lose weight whilst on steroids? Just diagnosed but steroids don't seem to be helping.

I often wondered if steroids actually helped with weight loss and I don't know the answer. On the one hand, everytime I've been on steroids I've had weight loss. But, on the other, I've also been ill - and regaining weight loss can take quite some time! So, maybe the two just coincide? Weight aside, are you feeling any better? Regardless, if you think the steroids aren't helping probably best to let your consultant/gp know. Btw, if you lost muscle, it can take quite some time to get it back

princess-lala

Steroids + lala = monster I am eating everything in sight!! Only 4 more weeks hopefully.

Turtwig

No idea why steroids are included in that equation. :pac:

princess-lala

Turtwig wrote: »

No idea why steroids are included in that equation. :pac:

Increased appetite.

The_Conductor

princess-lala wrote: »

Steroids + lala = monster I am eating everything in sight!! Only 4 more weeks hopefully.

When I was younger and put on steroids- I'd turn into some weird eating machine. I used fry a pack of rashers- and eat them in a whole demi-baguette- and still be hungry. I put on an unusual amount of weight in a very short period of time. My consultant was worried- as was my GP- and was checked out to make sure I wasn't at risk of Type 2 diabetes- but my blood sugars are if anything on the low side of normal. Speaking of steroids- they can induce temporary blood sugar anamolies.

I'd suggest you discuss it with your consultant- but be aware, its far from unusual.

princess-lala

Some days I can't stomach food at all! Others I'm nearly chewing the arm off myself so I can continue eating.

10 weeks of steroids tomorrow

The_Conductor

princess-lala wrote: »

Some days I can't stomach food at all! Others I'm nearly chewing the arm off myself so I can continue eating.

10 weeks of steroids tomorrow

Look on the brightside- they're working, you're not in pain.
I'm guessing you're on a tappered dose- so you have a roadmap of when you'll be off them. I was always terrified of coming off them- though these days, I'm the opposite, I don't take them at all, if I can help it.

My current problem is imodium- trying to find a dose that is sufficient to stop me running to the loo every 10 minutes- without causing a blockage either. Its a bit of a balancing act.

princess-lala

The_Conductor wrote: »

Look on the brightside- they're working, you're not in pain.

They're working to an extent. Still in alot of pain.

I can't stomach immodium at all

The_Conductor

princess-lala wrote: »

They're working to an extent. Still in alot of pain.

I can't stomach immodium at all

Are you on painkillers too?
I'm on 800mg brufen tablets- seem to get reasonable longevity from them (they're the gastro-resistant ones).
Life is too short to be in pain- if you're in pain, ask for painkillers.

princess-lala

Paracetamol and tramadol. Eating both like smarties.

The_Conductor

I also have a prescription for straight codeine phosphate tablets- they have to be the most bitter tablets out there. The side effect of taking them- is they slow your digestive system right down- and they can make you dizzy and almost knock you out- aka- driving is definitely out.

I have tramadol here too- its another of the ones you can develop a dependency on / have an addiction to. I don't find it works particularly well for me- though the consultant says its great- I find my brufen far better.

princess-lala

Like I said - smarties!!

Trying not to take them but I do need them. Back with the consultant soon so I'll ask him or I might just ring the ibd nurse tomorrow and give her some questions to answer

Turtwig

My bro actually thought the purple gastro resistant pred I was taking were skittles.

lomotil seems to be an alternative to immodium but to be honest I don't know if it's any better stomach wise. It does have opiates though.

Amazingly, the part of the ileum and above that I've had inflamed from the last flare-up has contributed almost zero diarrhea symptoms. If anything the opposite occurred!

Janedoe10

For those of us with no med card these new water charges will end up costing us a bit I'd guess ..
I wonder if mr TD got the runs every now and again he might see that water charges will hurt a lot more than his so called focus groups decided on ..

Who should we start writing to ? About this
Have you brought this up with the councilors ? ESP ones looking for votes .

I'm livid . Every now and again I try and push the illness in the back of my mind but these new plans just make me worry again

Turtwig

No point in worrying until we know the specifics.

€240 average will most likely be an underestimate. There will be concessions for people with health issues and disabilities but I'd bet my right hand crohn's won't be on any of those lists. Either way, just gonna wait and see what the situation is first.

Then, I shall write letters and emails. LOTS of letters and emails.

The_Conductor

Weren't they saying there could be exceptions on medical grounds.
Surely needing to use the loo 50 times a day because you have Crohn's- is a valid medical reason for an exception?
I know we don't qualify for LTI care- which we bloody well should- but metering someone with Crohn's for their water use- is just a bridge too far...........

mano bano

I have being writing to all my local TDs about a extra allowance for people with IBD and have being get family and friends to write to them all I get back is there is a focus group set up to look into water allowance of households. I have also being writing to them about getting IBDs on the long term illness book.

iv crohns just had a ileostomy reversal so lots of water being used in my house again

Turtwig

The Irish Times. wrote:

The Irish Society for Colitis and Crohn’s Disease has claimed that water charges will bring unwanted extra stress to the 20,000 people in Ireland who have inflammatory bowel disease (IBD).
The society has warned that water charges will add to the financial burden of people with the disease, the autoimmune bowel condition that comprises both Crohn’s disease and ulcerative colitis.
The society is lobbying Government politicians to either exempt IBD patients from water charges or to give a free allocation that would take their extra usage into consideration.
The society’s chairwoman, Patricia McCardle, said an IBD patient could use the toilet up to 20 times a day, using much more water than usual, during a flare-up.
Flare-ups can last from two weeks to two months, and can have a severe impact on the health of sufferers.
She warned that if water charges were based on usage, IBD patients would face higher bills than the rest of the population.

Discrimination
The society states that such patients are already discriminated against as they are not on the long-term illness scheme and face expensive medications of at least €144 a month, even with the drugs payment scheme.
Ms McCardle said: “Many patients really worry about the monetary side and how they will be able to afford medications, and now they have the added stress of worrying about water charges.
“It is a vicious circle for patients too as stress causes flare-ups of the condition and there is nothing more stressful than financial worries.”

Next Monday, May 19th, is World IBD Day.

Source.

Not sure I like the discrimination term. It seems a little OTT. Chronies and UCs aren't greatly treated by the state buuuuuut discriminated? ? I don't know, feels wrong. Then again it's probably a good lobby word. Duration of flare ups seems a little short too.:)

Agree with the spirit of the points being made. Maybe we'll just have to wear masks when going for a poop.

The_Conductor

Turtwig wrote: »

Not sure I like the discrimination term. It seems a little OTT. Chronies and UCs aren't greatly treated by the state buuuuuut discriminated? ? I don't know, feels wrong.

When you treat any other medical condition better than a different one- you are negatively discriminating against that which does not receive the favourable treatment. I mentioned this with a politician (who I know has Crohn's) at the weekend- and her comment was- well, we don't look ill, so we don't get acknowledgement of our illness.

Turtwig wrote: »

Then again it's probably a good lobby word. Duration of flare ups seems a little short too.:)

Flareups will vary greatly from one person to another. I particularly take exception to the suggestion that we only need extra toilet breaks when we're undergoing a flareup. I've had all my large intestine and most of my small intestine removed. I *need* to go to the toilet every 20-30 minutes. I bring spare underwear with me, and a spare change of clothes, for when I have accidents (which happens quite regularly). Thankfully work has a shower I can use to clean myself up with when I have an accident- I'm just lucky with that one.

Turtwig wrote: »

Agree with the spirit of the points being made. Maybe we'll just have to wear masks when going for a poop.

It was stated that there would be an exception made for those with medical needs. I don't see any mention of it in the recent media reports. In addition- would we once again fall foul of the 'not looking ill enough'.......?

The_Conductor

Originally Posted by The Irish Times.

How about we all start a little letter-writing campaign?

The Irish Society for Colitis and Crohn’s Disease has claimed that water charges will bring unwanted extra stress to the 20,000 people in Ireland who have inflammatory bowel disease (IBD).

Yes- it'll bring added stress- I think a lot of us try to keep under the radar though- as the nasty comments from colleagues in work who don't view us as ill, because we don't look sick- are more stressful than anything else.

The society has warned that water charges will add to the financial burden of people with the disease, the autoimmune bowel condition that comprises both Crohn’s disease and ulcerative colitis.

The financial burden is such that a majority of patients can't have an annual check-up with a gastroenterologist- as we can't afford it. Many of us skip our meds- as the 144 a month- is a bridge too far- sure we'll take cortisone when we have a flare-up, but ongoing care goes out the window.

The society is lobbying Government politicians to either exempt IBD patients from water charges or to give a free allocation that would take their extra usage into consideration.

At the proposed 0.2c a litre- rising to 0.5c a litre when the subsidy is removed, its less than a Euro a day- which is Pat Rabbits argument for the broadcasting charge. We need to comprehend where these politicians are coming from- they don't care. They really don't. Their lack of understanding or compassion towards those not as financially secure as they- or those with ill health- is nothing short of mind boggling.

The society’s chairwoman, Patricia McCardle, said an IBD patient could use the toilet up to 20 times a day, using much more water than usual, during a flare-up.

20 times a day? Thats a good day. Sometimes I can't leave the bathroom, at all. When I'm walking around- often I have leakage. I carry underwear, deodarant, and shower stuff with me everywhere in an attempt to keep myself reasonably clean and presentable. Most of the time I feel like a leper.

Flare-ups can last from two weeks to two months, and can have a severe impact on the health of sufferers.

2 weeks to 2 months? I'd love to know where she got this from. I'd willingly let her see my medical files- which would blow this out of the water. Also- it can't be normal to consider pain and considerable internal bleeding (to the extent that you need regular transfusions) as normal- and only relegate the term flare-up to an actual blockage- which is what some of us do.

She warned that if water charges were based on usage, IBD patients would face higher bills than the rest of the population.

Of course we will. Of course we will. Often I feel like we have to apologise for existing- the plan to tax our flushing the toilet is just despicable.

Discrimination
The society states that such patients are already discriminated against as they are not on the long-term illness scheme and face expensive medications of at least €144 a month, even with the drugs payment scheme.

A significant number of us can't afford the 144 a month- and have no other entitlements- as we work. Many health care professionals tell us we would be better off not killing ourselves trying to work. Something is rotten in the state of Denmark (or Ireland) it seems. The state would rather we were critically ill, than support us in keeping our conditions under control- that is how it seems.

Ms McCardle said: “Many patients really worry about the monetary side and how they will be able to afford medications, and now they have the added stress of worrying about water charges.

Most of us feel utterly and totally helpless to be honest.

“It is a vicious circle for patients too as stress causes flare-ups of the condition and there is nothing more stressful than financial worries.”

Big time.

Next Monday, May 19th, is World IBD Day.

Source.

I wasn't aware of this.

Janedoe10

This is what I have done /emailed the emails listed http://www.cer.ie/document-detail/Water-Charges-Plan-and-Customer-Protection-Consultation-Phase-1/956

There is a draft available to review but any queries /questions on the proposals by Commission for Energy regulation has to be replied to by May 16th . see http://www.cer.ie/docs/000956/CER14087 Draft Irish Water Customer Handbook.pdf

I have queried what they mean by critical vulnerable customers and requested that this would be expanded to include our illnesses on the customer handbook .
That there are sufferers of the following who are not on state benefits but meet the definition of vulnerable.

definition of High essential use of water  due to someone in the household has a medical condition for which they need to use a lot of water.
This would include
• incontinence
• abdominal stomas
• Crohn's disease
• ulcerative colitis (all can be backed up by supporting documentation supplied by their family GP)

Janedoe10

PM me if ye want me to send ye the draft of what i sent .

I Cant see any information on irish water sites

Janedoe10

I take it back the CER link is hidden away on this site http://www.environ.ie/en/Environment/Water/WaterSectorReform/

according to the link above there were 139 submissions received from private individuals which is low ,I cannot see any from the of the charities that are linked to IBD in ireland which there are 2 , .
Then again was this information made public . NO
Do you remember if this was mentioned anywhere No

Janedoe10

The_Conductor wrote: »

When you treat any other medical condition better than a different one- you are negatively discriminating against that which does not receive the favourable treatment. I mentioned this with a politician (who I know has Crohn's) at the weekend- and her comment was- well, we don't look ill, so we don't get acknowledgement of our illness.



Flareups will vary greatly from one person to another. I particularly take exception to the suggestion that we only need extra toilet breaks when we're undergoing a flareup. I've had all my large intestine and most of my small intestine removed. I *need* to go to the toilet every 20-30 minutes. I bring spare underwear with me, and a spare change of clothes, for when I have accidents (which happens quite regularly). Thankfully work has a shower I can use to clean myself up with when I have an accident- I'm just lucky with that one.



It was stated that there would be an exception made for those with medical needs. I don't see any mention of it in the recent media reports. In addition- would we once again fall foul of the 'not looking ill enough'.......?

That politician should have told you about the public submissions part . it is difficult enough for us trying to try and live as much as a normal life as possible without our illness consuming it .. this again is part of the reason why they (the establishment) push these things under the carpet if there is ones who are able to make a point and put in on the public record don't do it ..

Northern Monkey

I'm going through my first flare up since last August this week. Having felt normal for so long made me forget how sh1t this disease can be.

Janedoe10

Northern Monkey wrote: »

I'm going through my first flare up since last August this week. Having felt normal for so long made me forget how sh1t this disease can be.

Annoying that happening .. hope you are drinking a fair bit of water as well as if you are in ireland .weather will cause you to get dehydrated much much quicker .
We do try and carry on and push it out of our minds but it will always make us slow down doesn't it ?

Patty O Furniture

Hi, can someone tell me what is Crohn's Disease? a friend of my brother has it, as he says he no longer eats after 6pm. I was looking for some info on the first page, but i didnt see any, but if someone can give me some on it, thanks.

As i've got my own problems, but first things first.

Turtwig

Aww bugger Northern Monkey be kind to yourself. Warm weather is the worst time for flares, if there is a worst time.

Patty,
Crohns disease is an incurable illness that affects any part of the digestive system from the mouth to anus. Typically most manifestations are in the intestines. Most typical symptoms are abdominal pain, cramps, fatigue, diarrhoea, nausea and vommiting. Symptoms often vary in intensity with really intense periods or flare ups occurring.

That above paragraph is a broad generality. Any individual experience can be different.