Crohn's Disease

Turtwig · 26-03-2014 12:57am

Janedoe10 wrote: »

A question . What is Neocytamen used for ?

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

Janedoe10 · 26-03-2014 12:59am

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

shalalala · 27-03-2014 11:48am

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

Turtwig · 28-03-2014 3:46am

Least we is making investors rich.

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

Source.

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

*Remicade is infliximab.

The_Conductor · 28-03-2014 9:23am

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

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

Turtwig · 28-03-2014 10:44am

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

shalalala · 04-04-2014 8:51pm

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

The_Conductor · 05-04-2014 10:54am

shalalala wrote: »

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

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

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

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

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

shalalala · 05-04-2014 2:19pm

The_Conductor wrote: »

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

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

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

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

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

The_Conductor · 05-04-2014 7:41pm

shalalala wrote: »

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

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

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

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

Gather as much information as possible.

shalalala · 05-04-2014 10:11pm

The_Conductor wrote: »

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

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

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

Gather as much information as possible.

I will try, I have no current health insurance.

The_Conductor · 06-04-2014 9:54am

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

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

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

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

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

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

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

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

I hope this helps you,

Shane

SmileandNod · 07-04-2014 7:33pm

Hi All,

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

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

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

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

Thanks for reading...

The_Conductor · 07-04-2014 7:50pm

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

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

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

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

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

SmileandNod · 07-04-2014 8:01pm

The_Conductor wrote: »

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

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

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

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

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

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

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

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

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

Janedoe10 · 07-04-2014 9:26pm

SmileandNod wrote: »

Hi All,

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

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

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

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

Thanks for reading...

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

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

Hope it helps u too . Take care.

Turtwig · 08-04-2014 2:07am

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

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

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

Janedoe10 · 09-04-2014 12:48pm

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

The_Conductor · 09-04-2014 12:53pm

Janedoe10 wrote: »

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

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

Janedoe10 · 09-04-2014 12:59pm

The_Conductor wrote: »

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

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

shalalala · 09-04-2014 1:20pm

I haven't heard anything about markers but my official diagnosis is crohns colitis. So i seem to have both. Fun times!

Janedoe10 · 09-04-2014 2:21pm

shalalala wrote: »

I haven't heard anything about markers but my official diagnosis is crohns colitis. So i seem to have both. Fun times!

Cool at least there are 2 of us shalalala! Fun times indeed.

Turtwig · 09-04-2014 2:25pm

Crohn's can occur anywhere in the digestive tract. Crohn's colitis is just medics fancy term for crohn's disease manifestation in the colons.
Indeterminate colitis is when they can't discern whether the colitis is due to Crohn's disease or Ulcerative Colitis. Ulcerative Colitis, is well, UC.

The_Conductor · 09-04-2014 2:27pm

shalalala wrote: »

I haven't heard anything about markers but my official diagnosis is crohns colitis. So i seem to have both. Fun times!

Crohn's colitis- means you have Crohn's Disease, however its only found in your large intestine. Its one of the 5 types of Crohn's diease (the 5 different types referring to the area in question that is affected). Its possible (and common) to have more than 1 of the 5 types- however Crohn's colitis simply means you have a definitive diagnosis of Crohn's Disease- however, its found solely in the large intestine.

The_Conductor · 09-04-2014 2:29pm

Heres a good description of the 5 different types of Crohn's Disease

Click Here

SmileandNod · 13-04-2014 11:15pm

Hi All

Can I ask if anyone has had any issues with steroids not working for them?

Tony H · 13-04-2014 11:25pm

How long have you been taking the steroids without them having any effect ? I'm just coming out of a bad flare up and it took nearly two weeks for prednisone @40mg and predfoam twice a day before I started to feel normal again .

Turtwig · 13-04-2014 11:41pm

budesonide (Entocort) was a total disaster for me.

As for how long it depends what you mean? Controlling the flare may only take a day or so. Reducing your symptoms, healing and managing damage done though may take a whole lot longer.

The_Conductor · 14-04-2014 7:25am

Sometimes I need hydrocorisone by infusion- sometimes as an inpatient, sometimes on a day ward- taking it by tablet form just doesn't cut it- I don't absorb enough of it (or at the start of a flare-up- fast enough).

Different things work for different people- and what works for you at a particular point in time will vary depending on the intensity of your Crohn's- there isn't a one-size fits all.

princess-lala · 14-04-2014 4:54pm

I genuinely never thought I'd be posting in this thread. A different thread in LTI yes but defo not here.

So 4 weeks ago I got my diagnosis, ended up back in hospital last Wednesday. Steroids straight into the vein isn't helping as of yet.

Anyone care to tell me that it will get better?? I will get my normal life back??

The_Conductor · 14-04-2014 5:10pm

princess-lala wrote: »

I genuinely never thought I'd be posting in this thread. A different thread in LTI yes but defo not here.

Sorry to see you round these parts!

princess-lala wrote: »

So 4 weeks ago I got my diagnosis, ended up back in hospital last Wednesday. Steroids straight into the vein isn't helping as of yet.

Its early days in all fairness. From personal experience- it always took a few days for the hydrocortisone to kick in- but kick in it did. You do need to talk to the consultant when hes doing his rounds- get his assessment of what he thinks of your progress (thus far) and what roadmap he sees for you. There are different regimens out there- he may have plans to treat you in a different manner than you may anticipate- whats key here though, is communication- you need to talk to him- to find out whats happening.

princess-lala wrote: »

Anyone care to tell me that it will get better?? I will get my normal life back??

Better? Normal? Most of us live semi normal lives- it all depends on whether we're undergoing a flareup or not. There aren't a list of definite things to avoid- or a list of foods that will help you- it really is a personal thing- what works for one person may not work for another.

If you look at websites you'll see all manner of wisdom- smoking is terrible for Crohns, avoid alcohol at all costs, you'll never eat a curry ever again, coffee is lethal........ Its all a load of bollox. What works for one person, may or may not work for another. Normal may include having a handful of tablets in the morning- and what was normal last week, may have a new 'normal' next week- the only constant in life, is change.........

Relax- take things easy, try not to get frustrated or bored there, you obviously have the internet- get family or friends to bring you in some DVDs or shows- but the main thing now- is get rest- and talk to the consultant, and find out whats happening..........

Be nice to yourself!

princess-lala · 14-04-2014 6:17pm

I'm on 2mg pentasa twice a day, 20mg nexium and 20mg of steroids.

I'm on 4mg pentasa twice daily, 40mg nexium and 100mg steroids 4 times a day since I came in. As well as other stuffs.

its mad how much my life has changed in 5 months

Turtwig · 14-04-2014 6:39pm

princess-lala wrote: »

I genuinely never thought I'd be posting in this thread. A different thread in LTI yes but defo not here.

So 4 weeks ago I got my diagnosis, ended up back in hospital last Wednesday. Steroids straight into the vein isn't helping as of yet.

Anyone care to tell me that it will get better?? I will get my normal life back??

*Hugs*

In general most people will get back to a semi normal life with periods of little to no symptoms and remission. In general, people can affected both emotionally and physically. In general, people who smoke face further complications than those who don't. In general, a low fibre diet following a flare up produces the least discomfort. In general, everything will be generalities. Every individual is different though. Only time and trials will really tell. Your consultant will probably offer you the best guesses depending on where the flare is primarily affecting.

You're going to need find to find what works for you and remain open to the fact that this can change depending on how your body is doing. One year banana might be ok. The next, you may be ready to thump lumps out the person who suggests banana to you because that sickens you! Trial and error is really the only way. Hopefully find stuff that works and stick to that. Alcohol may be grand, it may be shyte, it may just be wine, or it may be all alcohol, you're not going to know until you try. After the next flare it might be fruit juice that's problematic and lo and behold alcohol might be grand but are you going to risk it? Then, if you're one of the really lucky ones, you may find that a few months after a flare you can resume a normal diet. Or you may also find that certain foods seem to provoke flares. Or it may in fact be a type of exercise that does! Or a medication! Trial and error. Following the generalities at first is the probably the most efficient way because once you find stuff that works it's probably best to stick to those and not take too many chances. Find the foods, exercise regime, medicines and treatment plan that work and stick to those until they don't work seems to be the overall generality. :rolleyes:

As Conducty said, all that will probably remains constant is that things change. You won't though, you'll still be the same awesome self you always were and you WILL find ways to manage the condition with your life.

Be uber nice to yourself and by all means free to vent here.

princess-lala · 15-04-2014 9:56pm

*waves*

Me again, quick question here now.

Imuran has been mentioned today. So obviously me having far too much time on my hands I googled the sh1t out of it

Does it work enough to counteract the side effects? I'm seeing an unbelievable amount of side effects :eek:

I know and before anyone says it I'm not looking for medical advice just an opinion. My team will be down to see me in the morning so I'll know more then

The_Conductor · 15-04-2014 10:07pm

You may- or may not have side effects.
When you google things- you see the very best case scenarios- and the absolute horror stories- you don't see stories about what happens to the average person walking down the street....... Its only those who have horror stories- or miracle stories- who tend to tell their tales.

Personally I was on Imuran for 7 years- before being taken off it (as my white cell count crashed to nothing- and I needed constant plasma transfusions for 3 years before things have returned to some semblence of normality).

It worked fine for me- for a number of years- before for whatever reason, I became hyper sensitive to it- and it was no longer suitable.

I'm now on anti-inflamatories on a daily basis, alongside warfarin (no-one told me a common complication of Crohn's was a propensity for blood clots, though I now know that)........ aside from that- and infrequent day patient appointments for iron infusions, I'm pretty normal. I have a 4 year old and a soon to be 3 year old- who were jumping up and down on my tummy earlier- aside from kicking me in a way that may mean they have no more siblings- I have no ill effects- that sounds to me like normal.

Normal- means different things for different people. You can have a normal life- it may be different from other people- but it can be your life- it can be fulfilling, you can have fun and enjoy yourself- and having Crohn's doesn't have to define you in any way.

Hope you're feeling better in there- keep asking those questions!

princess-lala · 15-04-2014 10:12pm

Aaah now I understand the warfarin injections

I did wonder

My IBD nurse will be down first thing to answer my 3 pages of questions. At least then I can understand some more.

They almost sent me home today but I'm on some painkillers that I can't drive on so if I go I can't drive, get back to work until I'm back here in another 2 weeks. I thought the point was trying to give me a normal life

Surgery was mentioned today the feckers.

The_Conductor · 15-04-2014 10:38pm

The warfarin / innohep / heparin injections are to make sure you don't get clots while you're in bed there. They'd normally give you pressure stockings too.

I'm on daily warfarin because of recurrent pulmonary clots, they tend to form below the knee and travel. Its not a big deal to be honest, I just have to attend the warfarin clinic every few weeks to have an INR done, its actually handy, I can get them to do a FBC at the same time.

If they are suggesting surgery for you, don't necessarily dismiss it out of hand. It can be remarkable, you can have a new lease on life. I've had few times, I may even be a bit blasé about it, Ive had remarkable success with surgery, I just wish it was done sooner in my case.

Keep asking keeping questions, get answers, make informed decisions.

princess-lala · 15-04-2014 10:44pm

Oh I didn't dismiss or agree to anything as of yet.

I'm taking everything on board and listening. My doc is away until Tuesday so nothing major will be done before then anyway

Turtwig · 16-04-2014 1:48am

A key thing to keep in mind with imuran is that with long term use the side effects of it are far rarer than the side effects from long term use of steroids. Imuran is also used for a plethora other things including chemotherapy and organ transplants so keep that in mind when googling people's reactions to the drug. It is around a long time so the side effects are pretty appreciated by now. You'll have regular blood tests to test for the most serious and common side effects.

Does it negate the side effects? Tough to answer. The serious side effects are very rare but they do exist. The drug can be a slow burner to work (2-6 months). It's just a guess but I'd say your consultants plan is to wean you off the steroids and by the time you're fully off the steroids the imuran should be making some contribution and their thinking is along the lines of the long term use of steroids posing far more risk to you than the imuran. It's all about balancing the lottery so to speak. Imuran has serious consequences but those consequences are far less likely than those of long term corticosteroids.

Seeeing as you've apparently got the time.:P This talk may be helpful for you. It's a little old now, but I found it invaluable at the time.

Transcript:http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Slides: http://www.ccfa.org/assets/pdfs/decision-making-slides.pdf

Relative bit on Aziothorpine [AZA] (Imuran)* begins at slide 5.

Klair88 · 19-04-2014 10:41am

princess-lala wrote: »

Oh I didn't dismiss or agree to anything as of yet.

I'm taking everything on board and listening. My doc is away until Tuesday so nothing major will be done before then anyway

Hey.
Was reading your posts and just wanted to give you a few details about how I got on after diagnosis. I was diagnosed in Spring of '12 and went through about 6-7 months of steroids & other medication (was mostly on Prednisone) before eventually having the surgery to remove the infected part of my Large & Small bowel.

Surgery was great for me, although I suffered the obvious effects of having a major surgery done, I had the ability to eat without pain again! I got my weight back up from 7.5 st to 9.5 st in about 2-3 months and finally felt positive about life for a long time! I was scared of having surgery as well, I actually asked my GI doc to give me more time on higher steroids than do the surgery! steroid side effects really bad, Prednisone wasn't nice for me.

Now it's been about 15 months since the surgery and I am still in remission, after claiming about 75% of my life back! I'm pain free and can eat freely again but I do suffer daily issues related to crohns as a result but what I go through to daily now compared to when I was in a flare is incomparable.

As an above poster said you'll just have to try & find what's right for your body. I don't drink alcohol or many other things but I have a herbal remedy that extremely helps me deal with the after issues of crohns!

I hope you get better soon, get relief and remember; There's many great threads and communities of Crohns out there with people in all stages of the disease. Their advice and knowledge of what you are going through can greatly help & assist you.

This thread and the people in it are fantastic. I also recommend checking out r/crohns on Reddit. It's a big community filled with world wide suffers.

Stephen P · 23-04-2014 11:02pm

Does anybody else experience night sweats. Lately I wake in the morning and my body is soaking with sweat and the bed sheets are wet. I thought it may be my pjs so I changed to lighter ones but didn't have any effect and the room isn't warm.
I've been looking online and there seems to be some connection to Crohns. I'm away in Manchester at the moment but will ring my IBD nurse on Friday so get her advice.

Turtwig · 24-04-2014 12:06am

Night sweats could be many things. Need to talk to your GP if they persist. Could be something innocuous or serious need to get it checked. From personal experience had them once from imuran when white blood cell count was low.

Stephen P · 24-04-2014 10:10am

I'm on Imuran for the last year & half. I had my bloods checked in the last 2-3 weeks and everything was fine. I'll talk to my IBD nurse and see what she says and then might have to visit my GP

Hopefully nothing serious

Turtwig wrote: »

Night sweats could be many things. Need to talk to your GP if they persist. Could be something innocuous or serious need to get it checked. From personal experience had them once from imuran when white blood cell count was low.

princess-lala · 26-04-2014 11:00pm

Stephen P wrote: »

Does anybody else experience night sweats.

I've been experiencing this for about 5 weeks now.

Last few weeks I was blaming being in hospital. My ibd nurse told me yesterday it can be part of the meds/low white cells/infection looming.

My bloods are ok so she's reckoning mine is my body settling into the meds.

Stephen P · 28-04-2014 10:36am

princess-lala wrote: »

I've been experiencing this for about 5 weeks now.

Last few weeks I was blaming being in hospital. My ibd nurse told me yesterday it can be part of the meds/low white cells/infection looming.

My bloods are ok so she's reckoning mine is my body settling into the meds.

What meds are you on? How long are you on the meds? I'm on Imuran since October 2012. I'm going to ring my IBD nurse today to see what she says.

princess-lala · 28-04-2014 11:22am

I'm only diagnosed 5ish weeks.

Taking
4mg pentasa daily
30mg (reducing weekly) prednisone
40mg emazole daily

Been on the above 8 weeks. The emazole was upped from 20mg to 40mg 2 weeks ago.

For pain at the minute paracetamol and tramadol.

Also on colofac for spasms.

When I went back into hospital 3 weeks ago they were injecting the steroids 4 times a day and 100mg each time.

Stephen P · 28-04-2014 12:05pm

princess-lala wrote: »

I'm only diagnosed 5ish weeks.

Taking
4mg pentasa daily
30mg (reducing weekly) prednisone
40mg emazole daily

Been on the above 8 weeks. The emazole was upped from 20mg to 40mg 2 weeks ago.

For pain at the minute paracetamol and tramadol.

Also on colofac for spasms.

When I went back into hospital 3 weeks ago they were injecting the steroids 4 times a day and 100mg each time.

I was on the Pentasa when first diagnosed in 1997/1998 for about 8 years. Was on the Prednisone a couple of years ago, didn't like that at all, face bloated out and skin was oily. Never heard of the other meds you're on.

Turtwig · 29-04-2014 2:36pm

One drawback to imuran and pred (and possibly IBD itself) that today reminded of is the possibility of hypersensitivity towards the sun.

The_Conductor · 29-04-2014 2:50pm

Turtwig wrote: »

One drawback to imuran and pred (and possibly IBD itself) that today reminded of is the possibility of hypersensitivity towards the sun.

Ditto- quite unusually vicious migraines.......

shalalala · 04-05-2014 1:37pm

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?

Crohn's Disease

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