Crohn's Disease

Tony H · 17-09-2015 11:57am

Hi Miss G good luck with the scope ,what prep are you using ? I used picolax the last time and it was the easiest by far to take .

MsGiggles · 17-09-2015 12:01pm

Tony H wrote: »

Hi Miss G good luck with the scope ,what prep are you using ? I used picolax the last time and it was the easiest by far to take .

Hi Tony - Thanks

- Oh I learned that Picolax existed after my first scope and have been taking it every time since.

My first ever scope was horrendous.....They had to stop halfway through as I was having a panic attack as the sedation didnt work - I have been petrified ever since - Strange feeling to be petrified like this when your 32 !

Tony H · 17-09-2015 5:18pm

MsGiggles wrote: »

Hi Tony - Thanks - Oh I learned that Picolax existed after my first scope and have been taking it every time since.

My first ever scope was horrendous.....They had to stop halfway through as I was having a panic attack as the sedation didnt work - I have been petrified ever since - Strange feeling to be petrified like this when your 32 !

A bad scope is a horrible experience , but most of the time the sedation works , think positive and if they approach you with the scope and you are still conscious , just say no thanks more drugs please ,:)

my first colonoscopy I was just told to take a deep breath , it wont take long and when I complained that I was in pain I was told to cop myself on and shut up .

Things are much more civilized now , any way don't fret too much you will make it through , and tell your GI your fears , they are there to help and reassure you .

MsGiggles · 17-09-2015 6:45pm

Tony H wrote: »

A bad scope is a horrible experience , but most of the time the sedation works , think positive and if they approach you with the scope and you are still conscious , just say no thanks more drugs please ,:)

my first colonoscopy I was just told to take a deep breath , it wont take long and when I complained that I was in pain I was told to cop myself on and shut up .

Things are much more civilized now , any way don't fret too much you will make it through , and tell your GI your fears , they are there to help and reassure you .

Thanks Tony. Means a lot that you take time out of your day to try and calm me

TMJK · 20-09-2015 2:22pm

How do people cope with the cost of medication?
I've no medical card, etc and on Pentasa 1g sachets X4/day. I find it very expensive.
Are there pharmacies that are very cheap people know about?
I think I remember a mother on Joe Duffy before whose daughter had Crohns and she said she flew to somewhere (Canary Islands / Portugal / Croatia ??) and bought her medication there in bulk without a prescription, as it worked out far cheaper ... Is that something people do?
Any feedback would be very much appreciated. I've no idea!

The_Conductor · 20-09-2015 4:38pm

TMJK- what most of us do- is pay the 144 a month.
It is a lot of money- and it is difficult to afford it- I've often had to do without because the 144 was just a bridge too.........

I've heard stories of people going to Portugal and Spain for cheaper meds too- but I've never actually spoken to anyone who did it.
I've also heard tell of people deliberately taking distant learning and part-time courses in QUB to qualify to use the NHS- however, it seems like going to ridiculous lengths to me.

Its not covered under the LTI scheme- like diabetes or a limited list of other conditions- primarily because the list hasn't been updated in well over 20 years- and Crohn's was a rare diagnosis 20-30 years ago (regardless of whether you had it or not).

I don't have an answer for you- I just do my damndest to make the 144 a month go as far as possible. I used try and see if I got stretch meds- but I can't really anymore given the nature of the meds.

If you talk to your GP you may be able to persuade them to push for a discretionary medical card for you- however, its increasingly difficult to get one- and even if you do- they insist on reviewing it every 6 months- which is a pain in the proverbial.

I'm not sure if we're allowed discuss getting meds from abroad in this forum- I know a few threads were shut down on the subject in the past- I'd suggest running it by one of the forum mods first- but if you're ok'ed- I'd suggest splitting it off from this thread- into its own thread- as its equally as applicable to any number of different conditions- the prices for meds in this country are just ridiculous (they are HSE agreed prices- and there is a review currently ongoing- however, for those who don't have a medical card- it means you pay the full price for everything- all the way up to the 144- at which stage the DPS scheme kicks in. Its the first 144 that is the killer- and the manner in which someone in the Department of Health seems to imagine people with LTIs who aren't on the LTI scheme- must be minted. Most of us are not.

Northern Monkey · 21-09-2015 9:18pm

I'm not sure about pentasa, but when I was solely on imuran it was a lot cheaper to buy it up north. £12 versus €45-55 (depending on the chemist) per month.

Edit:

Had a quick look here, I'm sure it would be more in a chemist, but this will give you an idea.

http://www.pharmacy2u.co.uk/searchresults.aspx?keywords=Pentasa

heyday30 · 29-09-2015 1:54pm

Being sucker punched with a flare up at the moment.
Forgot what it's like. Been on an even keel for a few years now.
The cramps are unreal. On steroids to bring the inflammation down.
Feel like death.

The_Conductor · 29-09-2015 2:36pm

heyday30 wrote: »

Being sucker punched with a flare up at the moment.
Forgot what it's like. Been on an even keel for a few years now.
The cramps are unreal. On steroids to bring the inflammation down.
Feel like death.

My consultant gave me a prescription for Buscopan- which I found helped with the cramps- ask- there are medications which can help. Also- I was told anytime I'm on cortisone I should also be on Calcichew calcium and Vit D tablets- which makes sense- the cortisone is reknowned for leaching calcium from your system. Its available OTC- and if you're like me and suffer from heart burn- and acid at the other end too- it helps alleviate this too.

Sorry you're feeling unwell- unfortunately most of us know what you're going through.

heyday30 · 29-09-2015 2:50pm

The_Conductor wrote: »

My consultant gave me a prescription for Buscopan- which I found helped with the cramps- ask- there are medications which can help. Also- I was told anytime I'm on cortisone I should also be on Calcichew calcium and Vit D tablets- which makes sense- the cortisone is reknowned for leaching calcium from your system. Its available OTC- and if you're like me and suffer from heart burn- and acid at the other end too- it helps alleviate this too.

Sorry you're feeling unwell- unfortunately most of us know what you're going through.

Thanks for your reply. Yeah I'm on spasmonol like buscopan daily just upped the dose for the time being.
I take nexium for the acid.
Thanks for your suggestions.
Trying to force down some yogurt every few hours just to have something lining the belly. Only thing soothing is warm cups of tea.

Feeling epically sorry for myself. Hoping it's just a minor blip.

Deadwards.com · 05-10-2015 8:31am

Hi all,

Just commenting regarding getting medication abroad. I was using Mercaptapurine?? M4P and it was coming in at about €120 per month which like others, I found very expensive. My Aunt was going to the Canary Islands so she said she would see what she could do. She was able to buy my meds over the counter and if memory serves correctly, I got 6 months for the price of 1 month here!!

She tried to get it for me a second time but customs here stopped here and couldn't let her in with it (understandable really I guess).

Thankfully I am off the meds at the moment but if I had to go back on them, a family holiday to the Canary's for a week would certainly be on the cards for the huge saving I got.

Might be worth looking up details for a chemist there to see what / if savings could be had for you to include a holiday.

Just my limited experience.

MsGiggles · 06-10-2015 3:23pm

Guys, just had colonoscopy last week. I felt ok'ish after it but since I have had it done I feel awful. Toilet activity increased, appetite gone. That horrid niggly pain in my stomach all the time.

Could it take a while to get over the prep? I have a horrendous time with it and always end up vomiting bile.

Any thoughts on this ?

Thanks muchly x

The_Conductor · 06-10-2015 4:13pm

Sorry MsGiggles- know what you mean. Normally it takes me at least a day, sometimes 2, to get back to normal. The prep is actually worse than the colonoscopy itself- and how the hell you're supposed to drink 2 litres of it, is beyond me.

I normally have to take a few extra Imodium after a colonoscopy- however, I'm terrified of doing this- I've enough problems with strictures, without inducing a blockage.

All I can really suggest is taking things really easy for a day or two- and keep extra close to the loo........

MsGiggles · 06-10-2015 4:20pm

The_Conductor wrote: »

Sorry MsGiggles- know what you mean. Normally it takes me at least a day, sometimes 2, to get back to normal. The prep is actually worse than the colonoscopy itself- and how the hell you're supposed to drink 2 litres of it, is beyond me.

I normally have to take a few extra Imodium after a colonoscopy- however, I'm terrified of doing this- I've enough problems with strictures, without inducing a blockage.

All I can really suggest is taking things really easy for a day or two- and keep extra close to the loo........

Thank you. I think I have already disappeared 5 times in work today !

heyday30 · 06-10-2015 4:39pm

MsGiggles wrote: »

Thank you. I think I have already disappeared 5 times in work today !

You poor thing. I know the feeling. Clean prep is just awful. Had to drink 3 litres of the vile stuff for the last colonoscopy.

Hope things calm down for you soon. I find peppermint tea very soothing it may help you x

Trebor176 · 06-10-2015 9:17pm

MsGiggles wrote: »

Guys, just had colonoscopy last week. I felt ok'ish after it but since I have had it done I feel awful. Toilet activity increased, appetite gone. That horrid niggly pain in my stomach all the time.

Could it take a while to get over the prep? I have a horrendous time with it and always end up vomiting bile.

Any thoughts on this ?

Thanks muchly x

The prep is awful, but I managed the two litres the last time I had to go for a colonoscopy. Though, the prep wasn't as bad this time as it was the first time I tried it. Maybe being at home this time, and having the prep refrigerated helped.

I felt grand the next day, except for a few trips to the toilet. I took the day off work as a precaution. There was no stomach pain or anything like that. It will be another while before I'm due another colonoscopy anyway.

The_Conductor wrote: »

Sorry MsGiggles- know what you mean. Normally it takes me at least a day, sometimes 2, to get back to normal. The prep is actually worse than the colonoscopy itself- and how the hell you're supposed to drink 2 litres of it, is beyond me.

I normally have to take a few extra Imodium after a colonoscopy- however, I'm terrified of doing this- I've enough problems with strictures, without inducing a blockage.

All I can really suggest is taking things really easy for a day or two- and keep extra close to the loo........

Yes, the prep is definitely worse than the procedure itself. I was out of it for my first colonoscopy, but was awake for the second one. Relatively painless, except for some discomfort towards the end of the procedure.

MsGiggles · 06-10-2015 11:10pm

Trebor176 wrote: »

The prep is awful, but I managed the two litres the last time I had to go for a colonoscopy. Though, the prep wasn't as bad this time as it was the first time I tried it. Maybe being at home this time, and having the prep refrigerated helped.

I felt grand the next day, except for a few trips to the toilet. I took the day off work as a precaution. There was no stomach pain or anything like that. It will be another while before I'm due another colonoscopy anyway.

Yes, the prep is definitely worse than the procedure itself. I was out of it for my first colonoscopy, but was awake for the second one. Relatively painless, except for some discomfort towards the end of the procedure.

Thanks Trebor. I suppose I was just wondering if a colonoscopy could trigger a flare. Feeling awful the last week since I had it.

Trebor176 · 06-10-2015 11:36pm

MsGiggles wrote: »

Thanks Trebor. I suppose I was just wondering if a colonoscopy could trigger a flare. Feeling awful the last week since I had it.

Perhaps you should contact your consultant or a member of the team, just to explain how you're feeling. I hadn't been experiencing a flare at the time of the second one, so I'm not too sure if it's a common thing to feel so bad more than a day or two after a colonoscopy.

The_Conductor · 07-10-2015 7:02am

MsGiggles- after a scope- you'll have been poked and prodded internally in places you can't even begin to imagine. Its over a forthnight since I had a scope and I wince if one area of my tummy taps off anything.

Its not nice- depending on the severity of it- the GI team may prescribe pain relief- which may help (though telling you to take panadol or some such is a complete waste of time.......)

Definitely ring them- we have enough crap going wrong with us- we shouldn't have to put up with this too...........

MsGiggles · 13-10-2015 12:20pm

The_Conductor wrote: »

MsGiggles- after a scope- you'll have been poked and prodded internally in places you can't even begin to imagine. Its over a forthnight since I had a scope and I wince if one area of my tummy taps off anything.

Its not nice- depending on the severity of it- the GI team may prescribe pain relief- which may help (though telling you to take panadol or some such is a complete waste of time.......)

Definitely ring them- we have enough crap going wrong with us- we shouldn't have to put up with this too...........

Thanks a mill x

A Shopkeeper · 14-10-2015 9:33am

Going in for an MRI next week, my first since I've been diagnosed. My only symptoms are blood in my stool and I'd say that has been happening about 4/5 times a fortnight for the last few years.

Doctors have told me I have mild crohns and am on no medication as they said I just have to wait for symptoms to get worse before they can medicate. While I know I am very lucky in one sense, the whole being left in limbo wondering will it get worse and if so, when, gets to me at times. I'm trying to live healthy and stress free, but the blood in my stool happens so regularly I kind of don't really get phased by it any more as I have no other symptoms.

Has anyone here similar experience of long term mild crohns, or will it definitely get worse in some form for me?

The_Conductor · 14-10-2015 9:50am

Impossible to say 'A Shopkeeper'- we're all very different- both in our symptoms and in our treatments. What works for one of us- may not work for others- and indeed, what some of us find helps manage our daily conditions- may exacerbate someone else........

'Mild' can mean one thing to a doctor- and something else entirely to a patient- and further- 'mild' can change to completely debilitating- in a matter of hours.

Personally- I've had good stretches of 'mild' Crohn's- sometimes for many months- however, I've also ended up in A&E more times than I can care to remember- and have had surgery 8 times now (over the past 23 years).

Hang in there- and keep in good contact with your doctors. They will advise you how best to manage it- and what best suits you.

Note- I've found the low fibre/ low residue diet to be remarkably helpful- St. Vincents have some leaflets on it for Crohn's Patients. My brother (Colitis) was put on the polar opposite (High Fibre diet)- which suits him.

MsGiggles · 14-10-2015 12:26pm

The_Conductor wrote: »

Impossible to say 'A Shopkeeper'- we're all very different- both in our symptoms and in our treatments. What works for one of us- may not work for others- and indeed, what some of us find helps manage our daily conditions- may exacerbate someone else........

'Mild' can mean one thing to a doctor- and something else entirely to a patient- and further- 'mild' can change to completely debilitating- in a matter of hours.

Personally- I've had good stretches of 'mild' Crohn's- sometimes for many months- however, I've also ended up in A&E more times than I can care to remember- and have had surgery 8 times now (over the past 23 years).

Hang in there- and keep in good contact with your doctors. They will advise you how best to manage it- and what best suits you.

Note- I've found the low fibre/ low residue diet to be remarkably helpful- St. Vincents have some leaflets on it for Crohn's Patients. My brother (Colitis) was put on the polar opposite (High Fibre diet)- which suits him.

Thanks "the conductor" really helpful info for me. It seems by trial and error I was already sticking to a low fibre diet without realising. Definitely helps me a lot.

"The shopkeeper" my Crohns is said to be mild too which can be a bit of a slap in the face when I might have to run to the loo 20 times a day !!

Crohns disease is so individual which is why it can be hard to get a treatment plan at times. Keep the lines of communication open with your doc and consultant. Don't suffer in silence just because you have been classed as mild xx

shalalala · 15-10-2015 7:38am

I on the other hand was diagnosed with severe crohns but remission within a year, no operations, and able to hold down a job. Not saying that it wasn't really hard but I wouldn't dwell too much on the labels that they give.

MsGiggles · 21-10-2015 10:58am

Good Morning All,

So I got told yesterday that I am going to be admitted to hospital next week for surgery - It is kind of like a bolt out of the blue for me if I am honest. I had a colonoscopy 2/3 weeks ago and based on the findings it was thought surgery was needed.

He did mention that they need to cut 10cm which doesn't sound like a lot but to say I am petrified of the surgery is an understatement.....

Any advice would be greatly appreciated.

Thanks so much all

Giggs xx

MsGiggles · 21-10-2015 10:59am

Good Morning All,

So I got told yesterday that I am going to be admitted to hospital next week for surgery - It is kind of like a bolt out of the blue for me if I am honest. I had a colonoscopy 2/3 weeks ago and based on the findings it was thought surgery was needed.

He did mention that they need to cut 10cm which doesn't sound like a lot but to say I am petrified of the surgery is an understatement.....

Any advice would be greatly appreciated.

Thanks so much all

Giggs xx

The_Conductor · 21-10-2015 12:35pm

Sorry to hear that Ms Giggles.
The one thing I will say- is personally, I have found surgery to be life changing.
Ok- it takes 2-3 weeks to recover from the surgery- but when you've recovered- you'll find yourself better than you ever imagined possible, before you had the surgery done.
Thinking about surgery can be scarey- and indeed, it would be foolhardy to tell someone it is all roses, and without risk- however, complications only occur in a very small number of cases- and depending on how you recover- you might be out of hospital inside a week.

The worst part of surgery in my mind- is the physiotherapy afterwards- where they make you breath into a tubey thing to make sure you're properly inflating your lungs. You'll be on good pain meds- so you shouldn't be too sore from the surgery itself. Hospital food is atrocious- do get family and friends to smuggle you in some little bits that you're able to manage- icecream, youghurt, jelly- that sort of thing.

One thing- when you're fasting before the surgery- you're not allowed eat or drink. You are however allowed ice chips- and make damn sure you ask for them. I've never had as much fun as I had crunching icechips- when I was fasting- its fun and it does quench your thirst.

Best wishes- we'll all be thinking of you.

OUTDOORLASS · 24-10-2015 11:26am

Morning Ms Giggles,
Just to wish you all the best for the surgery next week. Like The Conductor, I would agree that once the surgical
pain subsides, you will be amazed how good you will feel. Sometimes, you get accustomed to being unwell, in so far
as you forget what it feels to be healthy.....you plod along...existing....trying to appear normal to those who dont
have a clue how your body feels. After the operation, dont try to be brave. Take every pain killer you are offered...
it will help you with the initial movement/walking. I hope your job is understanding. Guilt for taking time off work, is
a stress that you can do without. If you have any other major stresses in your life, shelf them for the few weeks, and
concentrate on yourself. Best of luck. XX

MsGiggles · 24-10-2015 1:16pm

You're kind words mean alot to me. Thank you all.

The_Conductor · 25-10-2015 9:52am

Good luck Ms Giggles!

Crohn's Disease

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