Crohn's Disease

Northern Monkey · 28-01-2015 9:17am

Has anyone on humira had any issues with joint pain? The last 6 weeks or so I've noticed my knees and ankles getting sore. It was a dull pain originally, but it's got quite pronounced in the last week or so.

OUTDOORLASS · 28-01-2015 12:14pm

I have actually. I did.nt think of the Humira. I.m in the process of enlarging my rings, as I cant get them on/off over my knuckles. Interesting...

Turtwig · 28-01-2015 12:25pm

Northern Monkey wrote: »

Has anyone on humira had any issues with joint pain? The last 6 weeks or so I've noticed my knees and ankles getting sore. It was a dull pain originally, but it's got quite pronounced in the last week or so.

I found since the imuran - and definitely since the TNF inhibitors - that my joints are far more sensitive to impacts. I don't intend on running a marathon. :pac:
(Not that I uh ever did.)

It could of course be coincidental as crohn's is known to cause pain in the joints and when your stomach's cramping like mad the other stuff is less noticeable. I did have joints pains before diagnosis but I think the immunosuppressors have made them far more sensitive. That may be just me.

Take it with a pinch of salt. Definitely mention your concerns to your GP and consultant.

Northern Monkey · 28-01-2015 3:19pm

Not that you should ever google a medical symptom, but there seems to be more than a few hits for "drug induced lupus" while on humira. I've changed my shoes to a more supportive pair to see if that helps me, but if not I guess its off for more prodding.

Turtwig · 28-01-2015 3:24pm

As long as you're the one doing the googling and aware of it's limitations. When it's a family member or relative it's bloody annoying! :mad:

I actually hold back on symptoms descriptions now. Dr Google you're an ass for causing disproportionate anxiety!

OUTDOORLASS · 28-01-2015 4:08pm

Yea, if you went into sites mentioning the side effects of Humira, and took it all on board, you would get a massive heart attack....!!!
But I rationalise this information by saying, if you read up on the side effects of Paracetamol it would scare you too....

Maybe it is just a bit of old age as well....

Northern Monkey · 28-01-2015 7:58pm

I work with someone and the first thing they do when they are prescribed something is google the side effects. They will "develop" most of them within an hour of reading them.

Turtwig · 28-01-2015 8:35pm

There's a condition called medical student syndrome. Basically, when they're studying a disease for the first time they've a tendency to notice their own "symptoms" of it. Imagine, what it's like for a lay person reading up on medical stuff for the first time!

Everything from the common banana to peanuts causes side effects. Most important thing isn't to look at what the side effects of some therapy are, look at the odds on getting those side effects and decide on whether the potential reward is worth the risk.
(Although there are safe guards in place to prevent misinformation, it's probably best to get those odds from scientific sources that aren't anyway linked to the therapy provider e.g cochrane collaboration. )

Trebor176 · 28-01-2015 11:49pm

Hello everyone. I'm a first time poster here, and just recently came across this forum. I was first diagnosed in 2008, having felt unwell for a couple of months prior, such as having a loss of appetite and feeling sick after eating a certain amount. At the time, I put it down to nerves over upcoming exams. It was only one morning I got up and felt very faint. After a trip to my GP, I was sent to A & E, where I spent the few days undergoing this test and that test. Following a colonoscopy, I was diagnosed with Crohn's.

I never really felt too bad and wasn't in agony, nor did I have any other usual symptoms, such as diarrhoea, or passing blood. It was more just the loss of appetite and weight loss. The only agony I had been in for a while was from juvenile arthritis in my legs (well under control now). And, from what I've learned, both Crohn's and arthritis can be linked. I did suffer with stomach pains during my early-mid teens (moreso these periods), which may or may not have been Crohn's related. I always had a tendency to worry, which most likely triggered them.

Almost seven years on since my diagnosis, and I've been pretty much fine, and the doctors have been usually happy with me and whatever tests, such as blood tests, I'd have to get done before appointments. It's only in recent weeks that I've developed fissures or something, which makes it painful going to the loo. And, there's often traces of blood or I pass a good bit of blood. Again, I never suffer with diarrhoea, but there are times when it can be hard to go. I have passed blood the odd time over recent years, but I've had a few incidents of that in recent weeks. I am concerned, but I know it's the norm for Crohn's sufferers. It just seems strange to develop these symptoms after being fine for so long.

I have written to the hospital, due to a lengthy wait for a colonoscopy, which should really have been a couple of months after my previous hospital appointment last summer. Coincidently, having wondered what the story is about it, and explaining my symptoms, I did get a letter to see if I still need to get the procedure done, so now I just have to wait for word back. I don't mind getting it done, but I am really not looking forward to the prep. I had to drink it when I was in hospital the few years ago, and really, it is the most horrendous thing to drink. It's just so hard to drink the suggested three litres, and everyone that has to take it must feel the same.

Anyway, I just thought I'd get on board here and just share my story with the posters here. I know that it will be great to be able to share our experiences with one another, and offer one another advice, when possible. All we can do is fight on and not let the Crohn's take over, even if it is hard to do at times.

Deadwards.com · 02-02-2015 12:36pm

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.

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

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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........

Riven_Sky · 17-03-2015 12:15pm

The_Conductor wrote: »

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..........

You're absolutely right, we're all different in how this disease effects us and many of the stories you hear are the extremes. I've accepted at this point that I'm never going to get back to the level of health I was at before, that I'm never going to be 'back to normal' but I'll take going to the bathroom 6 times a day over going 20, and being in pain some or most days over being in pain every day. And I imagine, when it come to Crohn's, that that's a fairly average experience.

I have to say I don't actually know how you're doing what you're doing given what you go through on a daily basis. I managed a matter of days with that level of symptoms before ending up in A&E and being admitted.

And yes, the ignorance of other people never ceases to amaze me. I remember one relative, who knew very well how sick I was, constantly making positive comments about my weight loss.

While it's good to be practical and sensible and consider things like wills and life expectancy, I don't think any consultant is going to tell you how long they think you have to live. Even palliative and oncology consultants are hesitant to do so. Mostly because they don't know the answer. I do 100% think you should ask the question though. Because if I was a doctor and my 40 year old patient with a disease that isn't considered life-limiting was asking that question, it would be significant.

The_Conductor wrote: »

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........

I've heard of them doing two together in the US (the scopes and the MRE). You do the scopes in the morning (under sedation though rather than a general anaesthetic) and the MRE in the late morning or afternoon as you're already fasting from the scopes. It does seem a lot to do in one day though. Plus trying to down the contrast after a prolonged fast isn't something I'd be looking forward to.

On the practical side, any chance you could swap the moviprep for picolax? As someone who has no tolerance for drinking foul tasting liquids, I can recommend it. It was the nicest tasting thing I drank on my prep day. Two small glasses of citrusy tasting liquid. The after-effects aren't much fun, but they are effective. And in between you just drink tons of a clear liquid you actually do like (not something you really like - I used a mix of lilt and 7-up, neither of which I drink often, and water.).

Trebor176 · 15-04-2015 7:53pm

I've my colonoscopy on Monday afternoon, so I'm dreading Sunday. Monday will be a doddle, but the thoughts of having to drink this Klean Prep stuff is terrible. The last colonoscopy I had was in 2008, and was in hospital at the time. So, I guess I've been lucky enough to escape the colonoscopies up to now. It's only half a day or so on Sunday, but still. . .

The_Conductor · 16-04-2015 10:15am

Riven_Sky wrote: »

On the practical side, any chance you could swap the moviprep for picolax? As someone who has no tolerance for drinking foul tasting liquids, I can recommend it. It was the nicest tasting thing I drank on my prep day. Two small glasses of citrusy tasting liquid. The after-effects aren't much fun, but they are effective. And in between you just drink tons of a clear liquid you actually do like (not something you really like - I used a mix of lilt and 7-up, neither of which I drink often, and water.).

Thanks for the tip. My scopes and MRE were rescheduled, as they had difficulty getting them all on the same day. Its now on for Monday the 27th. I also got a prescription for the Picolax, no questions asked, when I requested it from the Gastro's secretary. I was taking a roadtrip on Sunday the 26th down to an Agricultural Fair with my munchkins- I think I had better keep closer to home.

The warfarin clinic in James Connolly are being absolute saints- and have agreed to do blood tests for me everytime they're doing my INR- so I don't have to go over to St. Vincents the whole time (plus having bloods taken in two different places on the same day was proving challenging- my veins are in bits from all the Imuran).

One of the tests they accidentally did last week- was Prolactin. It was highlighted as abnormal. I guess a reading of 146 for a guy is unusual. Anyhow- its gone over to Vincents- no comment from them on it yet.

No-one ever told me that one of the side-effects of Crohn's is that we're at a vastly higher risk of developing blood clots- than the general population. Bah.....

The_Conductor · 16-04-2015 10:16am

Trebor176 wrote: »

I've my colonoscopy on Monday afternoon, so I'm dreading Sunday. Monday will be a doddle, but the thoughts of having to drink this Klean Prep stuff is terrible. The last colonoscopy I had was in 2008, and was in hospital at the time. So, I guess I've been lucky enough to escape the colonoscopies up to now. It's only half a day or so on Sunday, but still. . .

Keep close to home- and if you have young children think of some way to entertain them that allows you constant access to toilets?

Good luck on Monday!

Northern Monkey · 16-04-2015 12:44pm

This is probably a more general question that just one for us crohnies...

Has anyone any experience with keeping on private health insurance while not in the country? I'm going to be moving to the UK with work (most likely for a couple of years), but I want to keep my health insurance policy live while I'm away so my Crohn's cover doesn't lapse. I've no intention of using it when I'm not in Ireland (NHS should cover me should I need it), but I just wanted to check if someone had already been through this before I show my hand to the insurance provider.

uck51js9zml2yt · 16-04-2015 12:49pm

Northern Monkey wrote: »

This is probably a more general question that just one for us crohnies...

Has anyone any experience with keeping on private health insurance while not in the country? I'm going to be moving to the UK with work (most likely for a couple of years), but I want to keep my health insurance policy live while I'm away so my Crohn's cover doesn't lapse. I've no intention of using it when I'm not in Ireland (NHS should cover me should I need it), but I just wanted to check if someone had already been through this before I show my hand to the insurance provider.

Can't see why you would even need to tell the insurers you've moved.
Just keep paying your premiums.

lulu1 · 16-04-2015 12:54pm

Dont know if I am allowed to ask this question here but can anyone tell me what are the symptoms of cronans

Trebor176 · 16-04-2015 6:35pm

The_Conductor wrote: »

Keep close to home- and if you have young children think of some way to entertain them that allows you constant access to toilets?

Good luck on Monday!

Oh, I'll be home, don't worry. And, there won't be any kids to entertain either

And thank you

lulu1 wrote: »

Dont know if I am allowed to ask this question here but can anyone tell me what are the symptoms of cronans

Symptoms include abdominal pain, diarrhoea, blood/mucus in the stools/passing blood, loss of appetite, weight loss, inflammation and/or sores, such as ulcers, anywhere in the gut from the mouth to the anus.

For me, my symptoms were mainly the weight loss and loss of appetite. I did start to feel nauseous after eating a certain amount of food. I didn't have diarrhoea, I wasn't passing blood and wasn't in pain. I think it can affect people in different ways, either mildly or more serious. I do pass blood at times now, there has often been traces of blood of late, the back passage can be sore when passing stools (the passage seems to be narrower). At least I'm going for the scope so I'll know what's going on, and hopefully be able to ease things in the back passage and wherever there is narrowing, if any.

MORISH · 18-04-2015 2:04pm

Hi fellow chronsies

Just wondering ic anyone on stelara injections? I gav ed been on/off humirafor 6 years but in hindsight only had no side effects the first time i was on it which was pretty much a 3 year stint had a break for 4 months cos i was pregnant but when went back on it i developed psoriasis and ongoing cellulitis i didnt realise it was due to humira so never mentioned it to consultant for ages but when i did i was immediately referred to dermatology where they said to go on it weekly but after a whike i just stopped taking it! Didnt think my chrons was that bad so had a good while off it but the last year i got some symptoms of chrons and went back on it but once i did the psoriasis and cellulitis came back after 3 months apparently i have developed antibodies to it and they are going put me on stelara, just wondering if anyone else is on it and how they have found it? Im concerned i will start developing side effect again. Im sooo tired at the moment and am getting chest pain but consultant thinks its all down to humira antibodies. Love advice from you guys. Xxx

Nadser · 18-04-2015 11:14pm

I am having a colonoscopy on Tuesday morning and have been prescribed Picolax. I've to take one sachet in the morning and another at lunch time. The thing is, I really need to be in work between 1 and 2 pm (the rest of the day I can get away with). Am I kidding myself that I'll be able for it? How long does it take for the Picolax to kick in? I've had Kleen Prep before and it seemed to take a couple of hours before I was chained to the jacks. Would love to hear from anyone whose done the Picolax option.

Crohn's Disease

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