Crohn's Disease

OUTDOORLASS · 02-02-2015 1:41pm

Hi Deadwards, yes I.m on it, along with fortnightly injections of Humira. My prescription is for 75 mg, but the tablets only come in 50 mg doseage. You cant split the tablet, so I take 50 one day and 100 the next. For the first 4 weeks
after I started it, I have the most awful flulike symptons. It was definately the tablets, and not a "normal" flu.
I.d take the tablet, and then 4 hours later this thing would hit me. After a few hours it would wear off, then hit again
4 hours after the next tablet.
I started it early in 2006. I did get relapses. I started on the Humira about 4 years ago, and whilst I have some
problems caused be damage done by earlier episodes of Crohns, I have.nt had an actual Crohns episode with quite some time.

Deadwards.com · 02-02-2015 2:08pm

Hi OUTDOORLASS, thanks for the info. I am on 100mg per day (2 tablets). I actually stopped using them last November (mainly due to cost) but surprisingly I haven't had a bad Crohn's incident since. I guess I must be one of the lucky ones though. I wasn't diagnosed until my late 30's so I am trying to decide if I remain off them (a risk) or start back on them. I will be meeting my doc in March so I think I may 'wait and see' but it's nice to know there are others on here using the same meds as me.

Cheers
Paul

OUTDOORLASS · 02-02-2015 5:52pm

I saw on the news over the w/end that the Government is going to try and get some of the pharma companies to reduce
the cost of some of their drugs, so maybe there is hope for us yet. Best of luck.

Turtwig · 02-02-2015 7:55pm

It's funny though compared to the rest of Europe the more niche drugs are often seem cheaper here. For example in Ireland Humira is approx €600 per 40 mg pen. In Germany it's €1200 for the same pen. We are overcharged undoubtedly on stuff like paracetamol, Rennie and very popular meds. In the less popular stuff though we seem come out cheaper. This is just my personal experience. I'd love to see an analysis done of drugs prices across Europe for all different types of drugs and how each country fares.

My current hypothesis is general medicines are cheaper in Europe whereas specialist medicines are more expensive there.

Totofan99 · 04-02-2015 4:07am

Deadwards.com wrote: »

Hi all,

Anyone else here using Mercaptopurine (I think it's also known as 6MP). I couldn't stomach Imuran so was given this instead. Just wondering if I am the only one on it and how people are finding it.

Hi Deadwards. I don't post in here but I saw your comment and felt that I should. I'm on 100mg of 6MP per day. I'm on it for UC. I was on infliximab and I was put on the 6MP to complement it because it wasn't working well on its own. The main thing I noticed was that I was absolutely exhausted after I started on it. Lasted for a few weeks. And I started to lose some hair, but that stopped after a few weeks too. Your bloods will have to be monitored closely for a while after you start on it. Hope it does something for you anyway. Good luck.

Deadwards.com · 04-02-2015 9:45am

Hi Totofan99, yea I have been on it now for almost 3 years. I still feel tired on it but unfortunately can't put the hair loss down to it :-)

I stopped using it last November though to see what impact being off it would have and to be honest I haven't seen any big difference (I think I am just very lucky).

I wasn't diagnosed until my late 30's so perhaps it is just a mild form of the disease. From reading other peoples experiences I am convinced that I am one of the lucky ones.

While using 6MP my bloods didn't deviate either so all good there.

I think the only positive to come from the disease is that I am told not to eat broccoli.

I hope it manages the symptoms for you though and hopefully there will be some attention given to this illness in the future. It really frustrates me though that this life long disease is not considered such for medical support on the crazily prices meds.

Thanks

shalalala · 04-02-2015 10:37pm

If you don't make it through all your klean prep, are there alternatives available in the hospital?

Totofan99 · 04-02-2015 11:18pm

Deadwards.com wrote: »

Hi Totofan99, yea I have been on it now for almost 3 years. I still feel tired on it but unfortunately can't put the hair loss down to it :-)

I stopped using it last November though to see what impact being off it would have and to be honest I haven't seen any big difference (I think I am just very lucky).

I wasn't diagnosed until my late 30's so perhaps it is just a mild form of the disease. From reading other peoples experiences I am convinced that I am one of the lucky ones.

While using 6MP my bloods didn't deviate either so all good there.

I think the only positive to come from the disease is that I am told not to eat broccoli.

I hope it manages the symptoms for you though and hopefully there will be some attention given to this illness in the future. It really frustrates me though that this life long disease is not considered such for medical support on the crazily prices meds.

Thanks

6MP takes a few months to build up in your system before it starts working properly, so maybe it takes a few months to leave your system too. That might be why you haven't noticed any ill effects? And maybe you're just lucky too.

It's great that you haven't been too ill. I hope it stays that way! I'm doing alright at the moment, but I had a few very bad spells. One of those spells landed me in hospital for 3 weeks.

I'm with you on the medical support issue too. One of the most annoying things is that if you look up IBD (or Crohn's or UC) on the HSE website, it describes it as a chronic long-term disease. But they won't recognise them as long-term illnesses for the purpose of the long-term illness scheme.

Turtwig · 04-02-2015 11:38pm

shalalala wrote: »

If you don't make it through all your klean prep, are there alternatives available in the hospital?

*hugs*
Supposedly there according to internetz. (Checked this up a few years back during a miserable 10 hour plus adventure with Klean Prep.) From the impression I've got from the nurses though they just expect you to have it drank or they'll wait for you drink it there. So in short, I don't know the answer.

Hope you getting the blasted thing finished asap with as little more discomfort as possible. Take your time. The thing says to strive for a litre every hour but it also says not to worry if you take longer. I'd bet just about every crohnsies and UC'er takes way longer!

If you need to vent we're here.

shalalala · 04-02-2015 11:42pm

Turtwig wrote: »

*hugs*
Supposedly there according to internetz. (Checked this up a few years back during a miserable 10 hour plus adventure with Klean Prep.) From the impression I've got from the nurses though they just expect you to have it drank or they'll wait for you drink it there. So in short, I don't know the answer.

Hope you getting the blasted thing finished asap with as little more discomfort as possible. Take your time. The thing says to strive for a litre every hour but it also says not to worry if you take longer. I'd bet just about every crohnsies and UC'er takes way longer!

If you need to vent we're here.

Thanks! I drank two litres before I puked one of them up. The cramps are unreal so I have decided to give up. It just felt wrong... you get me?

Northern Monkey · 04-02-2015 11:48pm

I've found using ice cold water and adding some diluting orange made it easier to take.

Trebor176 · 04-02-2015 11:59pm

Turtwig wrote: »

*hugs*
Supposedly there according to internetz. (Checked this up a few years back during a miserable 10 hour plus adventure with Klean Prep.) From the impression I've got from the nurses though they just expect you to have it drank or they'll wait for you drink it there. So in short, I don't know the answer.

Hope you getting the blasted thing finished asap with as little more discomfort as possible. Take your time. The thing says to strive for a litre every hour but it also says not to worry if you take longer. I'd bet just about every crohnsies and UC'er takes way longer!

If you need to vent we're here.

I really have no idea how any patient can be expected to drink all of the Klean prep. I've only had it once, and am likely to have it again in the near future. It is the most vile thing I have ever tasted. I remember wretching after every sip of it. I did manage to use mouthwash before each sip and it helped somewhat. Lemony taste my arse!

From memory, I didn't manage three litres. I don't even think I managed two litres. But, it was obviously sufficient to clear me out enough for the colonoscopy, as the procedure was carried out the next day.

shalalala · 05-02-2015 12:52am

Trebor176 wrote: »

I really have no idea how any patient can be expected to drink all of the Klean prep. I've only had it once, and am likely to have it again in the near future. It is the most vile thing I have ever tasted. I remember wretching after every sip of it. I did manage to use mouthwash before each sip and it helped somewhat. Lemony taste my arse!

From memory, I didn't manage three litres. I don't even think I managed two litres. But, it was obviously sufficient to clear me out enough for the colonoscopy, as the procedure was carried out the next day.

They gave me 4! ARGH

Trebor176 · 05-02-2015 12:54am

I remember the nurse coming in with the jug and glass and said it had a nice, lemony taste. Not so bad, I thought. I took the first sip and I was nearly sick from the taste. She lied! :P

Deadwards.com · 05-02-2015 11:48am

Klean Prep is this stuff of the devil. Even just reading about it here reminds me of the oily metallic taste - yuck!

When I have to use it, I drown it with cordial (usually blackcurrant) and this helps a bit but as other say, it usually takes longer than they advise.

If someone could make it taste less offensive, they would probably be millionaires!

shalalala · 05-02-2015 12:19pm

On my way in. Not cleared out completely but no one answered the phones! I tried to take more this morning but I am not allowed to have more fluids so it is a catch 22. Hopefully they can give me something else there

Deadwards.com · 05-02-2015 12:29pm

Best of luck shalalala Hope it goes ok for you.

Northern Monkey · 05-02-2015 12:59pm

Deadwards.com wrote: »

Klean Prep is this stuff of the devil. Even just reading about it here reminds me of the oily metallic taste - yuck!

When I have to use it, I drown it with cordial (usually blackcurrant) and this helps a bit but as other say, it usually takes longer than they advise.

If someone could make it taste less offensive, they would probably be millionaires!

Blackcurrant was the one cordial I was told not to take with it! Something to do with the colour of it.

The_Conductor · 05-02-2015 1:04pm

Is Movicol or Senokot work as viable alternates?
In their benefit- you don't have to drink vast quantities of them diluted in water etc- and by god they're effective...... (frighteningly so)

shalalala · 05-02-2015 8:57pm

Thanks everyone for your help! I wasn't fully prepped but they went ahead. Was awake the whole way through but they had to use a lot more air to get biopsies but everything is looking good

There was a rumor that the meds might be stopped!!!!! Keep your finger crossed

Janedoe10 · 12-03-2015 12:05am

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Trebor176 · 12-03-2015 12:57am

I got a letter last week offering me an appointment for a colonoscopy for the Monday just gone. I had to turn that down due to the short notice, but also due to the fact that I just didn't feel prepared to have to go through the whole prep. The procedure itself isn't much of a worry to me. Though, of course, I'd be anxious about the results. But, it's moreso the preparation for it that worries me. I should be getting the procedure done some time in April instead.

mano bano · 12-03-2015 1:40am

Trebor176 wrote: »

I got a letter last week offering me an appointment for a colonoscopy for the Monday just gone. I had to turn that down due to the short notice, but also due to the fact that I just didn't feel prepared to have to go through the whole prep. The procedure itself isn't much of a worry to me. Though, of course, I'd be anxious about the results. But, it's moreso the preparation for it that worries me. I should be getting the procedure done some time in April instead.

I fully understand where your coming from I had a colonoscopy last week its the kleanprep I dread its takes so much out of you and its hard to drink 4 ltrs of something as bad as it the colonoscopy is the easy part of it.

mano bano · 12-03-2015 1:46am

Hello all I started Humira on Tuesday I was a nervous wreck going in to start it after hearing and reading about the injection been sore and some people using ice before to numb the injection site. I tried the 1st shot without ice and it wasn't as bad so didn't use ice for the other three shots.. I also am type 2 diabetic on insulin so should be use to needles but I'm not.

Trebor176 · 12-03-2015 1:48am

It'll be the same prep for me. I'll have to add something to it. I don't remember being too bad with the runs the first time I had to take it. Sure, I was in and out to the toilet a number of times, but nothing severe. I don't think I managed three litres, but the procedure still went ahead.

mano bano · 12-03-2015 1:53am

Trebor176 wrote: »

It'll be the same prep for me. I'll have to add something to it. I don't remember being too bad with the runs the first time I had to take it. Sure, I was in and out to the toilet a number of times, but nothing severe. I don't think I managed three litres, but the procedure still went ahead.

I put some orange juice or apple juice then into the fridge the colder it is the easier its to drink I find.

Turtwig · 12-03-2015 3:18am

Klean prep is vile stuff. I chill it to bits. Prep it around ten in morning and leave it in the fridge until two. At half one I take two tablets of motilium. Then start drinking it nice and slowly. I found that's the most "comfortable" technique for me. If I feel full to the brim I wait until I pass some stools before drinking more of it. Paradoxically I find the stuff constipates me! It takes a good while for any movement to occur.

Motilium was a suggestion from a GI. I found it helps. Everyone is different though. Talk to your doctor's before taking anything! The fact you're so anxious about the procedure it's probably worth letting them know. There are alternatives to klean prep. (Mileage may vary!)

Regarding humira. I don't bother with ice either. It sounds weird but I actually found it stung more on cold skin. I'll try it next with ice to see if that's true or a mind body trick thing.

Present technique is to take a longer relaxing shower, walk around for five to ten minutes. Stick on headphones and music. Wash the hands. Stretch the muscles a bit. Swab the area. Grab as much skin without muscle as possible and stab!

I'm rather thin and I find the thigh injection is least stingy when I stretch the leg out and inject directly into the thin sheet of skin. With the knee bent it seems to sting a lot more.

As I said though everyone is different. You should first and foremost do it how the nurse showed you. Any significant deviation should be discussed with your doctor.

The_Conductor · 15-03-2015 9:55pm

Ok- I've bit the bullet and gone back for my first check-up (in 4 years). I'm in Vincents once a month for iron or blood transfusions- but have been avoiding the GI consultants. I had intended to go back to Prof. O'Donoghue- before he retired- but obviously that boat has sailed........

Does anyone go to Dr. Garreth Cullen? Seems sound. I need to get things sorted. I have an MRE lined up for a few weeks time- thank god I kept up VHI cover........

I think I'll discuss humira and see what my options are with him- they have to be better than life at the moment.

Does anyone have a checklist for going through when visiting a new GI consultant?

I read a funny article this morning about how some scientists reckon they will be able to do a head transplant by 2020- by god- I could do with a new body.........

Riven_Sky · 16-03-2015 8:29pm

The_Conductor wrote: »

Ok- I've bit the bullet and gone back for my first check-up (in 4 years). I'm in Vincents once a month for iron or blood transfusions- but have been avoiding the GI consultants. I had intended to go back to Prof. O'Donoghue- before he retired- but obviously that boat has sailed........

Does anyone go to Dr. Garreth Cullen? Seems sound. I need to get things sorted. I have an MRE lined up for a few weeks time- thank god I kept up VHI cover........

I think I'll discuss humira and see what my options are with him- they have to be better than life at the moment.

Does anyone have a checklist for going through when visiting a new GI consultant?

I read a funny article this morning about how some scientists reckon they will be able to do a head transplant by 2020- by god- I could do with a new body.........

I attend another Dublin hospital so can't comment on Vincent's consultants but speaking as someone who recently went to a new GI consultant, I can offer a few words of advice:

Have rehearsed in your head or written down your medical history. Any admissions, surgeries etc and what years they were in. Where your disease has been active. When your last colonoscopy/MRI/CT scan was.

Have a list of your current medications and any medications you've been on previously and why they were stopped/changed

What's most important are your current symptoms. Be able to tell them what's most troubling or difficult for you so they're focusing on you as the patient and not your tests/scans.

Write down important questions you want to ask. Side effects, how long medications takes to work, blood test monitoring, scans/colonoscopy frequency etc

Come out of the appointment clear on your treatment plan and what the next step is.

Be your own advocate and if something doesn't happen that's supposed to, an appointment doesn't arrive in the post etc, chase it up. Because of the busy and often poorly resourced health system we have to work with, this is so important. People fall through the cracks. They shouldn't, but they do.

There are plenty of good options out there in terms of treatment. Humira got me on the road to remission where steroids and imuran failed. After a year and a half I had a problem with a side effect and changed to Simponi (golimumab). I've remained well on this for approaching a year now. Simponi is being used off label but has shown promise in trials thus far. The anti-TNF agents have really given me back a great quality of life.

There's at least one more medication (not an anti-TNF but targeting another inflammatory marker) that I believe they're using off label in Ireland, and there's more coming down the line (vedolizumab is looking promising), so there are options out there if Humira doesn't suit. If all else fails I'm sure full body transplants can't be far behind head transplants..

I'm really glad you're taking this step though. I read this whole thread from my hospital bed when I was first diagnosed and your story was one that stuck with me for both good and bad reasons. Good luck and I hope things take a turn for the better soon!

The_Conductor · 17-03-2015 10:50am

My biggest problem- more than anything else- is the startling amount of imodium I have to take- to avoid going to the bathroom. I must go 20-30 times a day- and during the night I wake up ever hour or so to go. I take 12-14 Imodium a day- if I didn't, it would be even worse. I also carry around changes of clothes and underwear with me- for when I have accidents. The pain- which is still there- is manageable- the bigger problem than anything else- is that I'm tied to the toilet. Thank christ there is a shower room with a toilet within a few yards of my desk in work- I'd be in even more trouble otherwise.........

Outside of that- there is the constant blood loss, the complete exhaustion- not helped by being up throughout the night to go to the toilet, and up there with the worse of all- is the comments from family, relatives and work colleagues- about how well I look (having over 20 units in a 2 month period will help there!) and isn't it great that I've been in hospital and am all cured now........ I've actually screamed at one person in work- much to the amazement of my manager one evening- thankfully there weren't too many people around- she had it coming.........

I bumped into our solicitor while going to the pharmacy yesterday- and got talking to him. One thing I need to do is a will. Before I do a will- having some sort of a vague idea of my life expectancy- would be helpful. The last day I was in hospital I got a comment along the lines of "after we've finished with you in here- you'll last at least another 10 years" (totally without any prompting from me). I'm 40- not 70 or 80. I have a 3 and a 4 year old. I want to be around for them- 10 years isn't going to cut it.

I realise that we're all unique- we have all had different life experiences- and indeed disease has effected us all in unique ways. If I go on the internet- all I see are either wonder stories or complete and utter despair- neither of which relate to what the average person, if there is such a thing, is likely to encounter.

I'd like an honest opinion from a consultant- of how long I'm likely to live. I studied statistics- I know the ins and outs of these things- I would like something I can benchmark though- which is something I don't have..........

On the brightside- I don't imagine I have any more surgery on the imminent horizon (its remarkable that I have anything left in there). On the downside- I have this damn box of Moviprep staring me in the face- I guess making it up with Ribena is out of the question- and I've already been dissuaded from using 7Up- I'm smiling at the thought of watching it explode all over the kitchen floor...........

Vincents are having some fun trying to schedule the MRE on the same days as the endo and colonoscopy. The general anaesthetic for the scopes- doesn't help with MRE- and you have to drink contrast dye for the MRE- which screws up the scopes too- I guess I'll hear back again tomorrow......... If they don't schedule them on the same day- the VHI won't cover the MRE (they only cover it for in-patients- and the scopes classify you as an inpatient- because they give you general anesthetic). I could do without a 600-700 bill for an MRE ontop of everything else. My credit card took a 160 quid hit in the pharmacy yesterday- it appears they've taken more things off the 144 a month for Crohns' patients- so not only are we not getting LTI arrangements- we're also getting some of our general meds taken out of the monthly scheme too. It would be nice if the Minister for Health had a LTI- perhaps he would be a bit more understanding..........

I guess when you've had illness all your life- you do get a bit philosophical about it- but you also recognise that you're not immortal, and have to make plans recognising this.......... My wife and I both need to make our wills and get our affairs in order........

Crohn's Disease

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