Crohn's Disease

LegacyUser

ncmc wrote: »

No unfortunately not, he had his 1st surgery in 2002 and got pretty good health for maybe 5 years. He has had 4 blockages in the last year so that's why they have decided to do the surgery. The funny thing is, that it doesn't cause him too much pain day to day, but the blockages could happen at any time so they feel surgery is for the best. He was supposed to get it done 3 weeks ago, but had a major flare up in his colon so they didn't want to risk it :mad:. Please God it will go ahead this time!

Fingers crossed that it all goes well I hope I stay well The difference is unbelieveable! Was he on any medication after the last surgery?

nerdysal

Hey guys,

A few of us from the Facebook group are working on a letter writing campaign re: Long term illness scheme. I'm going get the ball rolling tomorrow and post 2 letters to Jan O Sullivan and James Reilly (both of whom are the health spokesperson for their respective parties). If you have any suggestions of who to contact or just want any info please send an email to ibdcampaignforrights@gmail.com.

We would be very grateful for any suggestions (except any negative ones telling us not to bother, we're in a recession!!!! That is why we need to be louder than ever!)

Thanks

Sara

Dan133269

nerdysal wrote: »

Hey guys,

A few of us from the Facebook group are working on a letter writing campaign re: Long term illness scheme. I'm going get the ball rolling tomorrow and post 2 letters to Jan O Sullivan and James Reilly (both of whom are the health spokesperson for their respective parties). If you have any suggestions of who to contact or just want any info please send an email to ibdcampaignforrights@gmail.com.

We would be very grateful for any suggestions (except any negative ones telling us not to bother, we're in a recession!!!! That is why we need to be louder than ever!)

Thanks

Sara

That is a good idea targeting the opposition parties as the government ministers have obviously indicated they're not concerned with recognising crohn's as a long term illness. And of course, fingers crossed, labour and/or fine gael will be in power sooner or later. I've met Jan O' Sullivan before and she seemed very down to earth with time to listen to peoples' ideas and opinions. And James Reilly does seem to genuinely care about the health of the people, I remember when he cried over the lack of cancer services in some region.

Allow me to ask a stupid question, having crohn's disease recognised as a long term illness will allow sufferers to obtain a medical card regardless of their finances is that right?

The_Conductor

Dan133269 wrote: »

Allow me to ask a stupid question, having crohn's disease recognised as a long term illness will allow sufferers to obtain a medical card regardless of their finances is that right?

No- the LTI scheme is a scheme which entitles the holder of a specific card to their medication. A consultant will complete the card with details of the prescribed medication- and the holder of the card is entitled to the listed medication- nothing more- nothing less. You still have to pay GP fees and all other fees that everyone else pays. It is *not* a medical card- solely a medication card.

At present many people with Crohn's may spend several thousand per annum on doctors/consultants etc- along with another EUR100 a month on medication. Crohn's is a lifelong condition- it may be calm between flareups- but it is incurable- and sufferers will be prescribed medication for the rest of their life. The LTI scheme recognises the life long nature of incurable illnesses and conditions- and entitles the bearer to medication. There are a list of recognised conditions under the scheme at present- of which Crohns' is not included. Not having to pay EUR100 a month would make a sizeable financial difference to many people.....

ncmc

Unregistered wrote: »

Fingers crossed that it all goes well I hope I stay well The difference is unbelieveable! Was he on any medication after the last surgery?

I can't remember what he was on after the last surgery, I know they plan to keep him on Humira after this surgery. It is an imuno-suppressant that he injects once a fortnight, he has been on it for about 18 months. It has worked quite well for him and his doctor has said that it should work even better after the surgery, as it is better at preventing new flare-ups than dealing with existing ones. It is super expensive, so thank God it is covered under the DPS. They have increased his dose to once a week in the run up to his surgery. Please God you stay well after your surgery. The doc must be fairly confident if they haven't got you on any further meds.

LegacyUser

Hiya,
just wondering if anyone might be able to help me,
Have just been in hospital for over three weeks and have been on high doses of IV steroids, (which I really don't think have made any big difference so far). I'm now on oral steroids instead and was on them for a period last year but I find they affect me horribly. I'm so puffed up and swollen my skin and glands are sore, I look awful and I'm very paranoid about it....I have terrible ups and downs and am a bit depressed I think. I can't seem to get a good night sleep either although that was impossible in hospital anyway. I'm just wondering if anyone else gets so affected by steroids looks and side effects wise? I just feel very fed up as it seems like its not even worth it since I haven't improved anyway. Iv had active Crohn's for a year and a half nearly and Iv tried nearly every drug there is it seems nothing works for me! Has anyone else had this problem and found anything that works? Im currently on humira once a week, steroids and entocort.

The_Conductor

Unregistered wrote: »

Hiya,
just wondering if anyone might be able to help me,
Have just been in hospital for over three weeks and have been on high doses of IV steroids, (which I really don't think have made any big difference so far).

IV steroids do take some time for their effects to act on your system. I know its annoying as hell- but all you can really do is hang on in there. They will in all probability have an effect- its not instantaneous though.

Unregistered wrote: »

I'm now on oral steroids instead and was on them for a period last year but I find they affect me horribly. I'm so puffed up and swollen my skin and glands are sore, I look awful and I'm very paranoid about it....

I initially suffered swollen tear ducts and eyeballs- and ended up with a scraped retina as a result of my first encounter with high dose oral deltacortil- the manner in which your body reacts to medication does change over time though. There are many widely reported side effects to different medications- with corticosteroids- it tends to be water retention, swollen glands and similar. If the side effects become extreme or change- you need to report this to your consultant immediately. Even if you don't have an appointment- ring his/her secretary- so they know whats happening.

Unregistered wrote: »

I have terrible ups and downs and am a bit depressed I think.

Cortisone (and other medication) totally aside from the medical condition itself- can affect you emotionally and psychologically. Depression is commonly reported in patients with Crohn's Disease. You need to discuss this with your consultant rather than on here though.

Unregistered wrote: »

I can't seem to get a good night sleep either although that was impossible in hospital anyway.

Lots of people have difficulty sleeping in hospitals- myself included. One thing I found- was that cortisone (oral or IV) affected me in a manner not dissimilar to coffee. If I had a high dose in the evening/at night- I couldn't sleep at all, whereas the higher dose in the morning or early afternoon- did not affect me to the same extent. This is something you might like to explore with your consultant. Ps- personally I'm very anti-sleeping tablets/tranquilisers- sure, they'll knock you out- but there is a big difference between being knocked out, and getting a good nights sleep.......

Unregistered wrote: »

I'm just wondering if anyone else gets so affected by steroids looks and side effects wise? I just feel very fed up as it seems like its not even worth it since I haven't improved anyway. Iv had active Crohn's for a year and a half nearly and Iv tried nearly every drug there is it seems nothing works for me! Has anyone else had this problem and found anything that works?

Different drugs affect different people in different ways. There may be widely known and accepted side effects to certain medications- but there is nothing to say that they will affect everyone in this way- or with the same level of severity.

When I was first diagnosed- the idea of 'trigger foods' was introduced to me- certain foods are fine to eat when you are feeling well- but if you're not feeling great- they are likely to trigger a flareup or keep a low level flareup continuing in the background (irrespective of the medical treatment you may be receiving). Foods that may be exacerbating the symptoms are different from person to person- and are not necessarily indicative of an allergy.

In my case- I find my condition easier to handle (relatively speaking) if I avoid anything with maize/sweetcorn in it. Alcohol can be a problem- particularly beer- and don't even get me started on spicy foods or chilli etc. I'm hitting on a couple of things that tend to be fairly common with Crohn's people here (with the possible exception of Maize/Sweetcorn- which I identified myself as causing me trouble).

I would encourage you to use your current opportunity in hospital to make sure you see a dietician before you're released. He/she may be able to give you some very good suggestions.

Unregistered wrote: »

Im currently on humira once a week, steroids and entocort.

The entocort (Budesonide) is specifically for Crohns- in that its a low dose cortisone targetted in the digestive tract- rather than being a systemic cortisone. Normally this means that you get the drug where you need it, while minimising the side effects. It is under ongoing investigation by the FDA in the States- and if you experience what you perceive to be side effects directly related to its use- you are encouraged as a patient to file a report with them here.

If you consider the side-effects of your medication outweigh the possible benefits- it is time to sit down with your consultant and hold a conversation to explore what options are open to you. It may also be productive to talk to a different consultant- possibly as a one-off. Different doctors favour different treatment regimes- it doesn't make them right or wrong- nor does it mean they are not open to explore other avenues- simply that people over time tend to build a competence in a particular area, and this may be their 'comfort zone'. Talk to your consultant- and see what else they may suggest.

LegacyUser

Hey, I was on a very large dosage of steroids last year, around 120mg a day which were injected in while I was in hospital with active chrohns. I was also taking methotraxate aswell. When I was released from hospital I started taking the steroids orally and reduced them very slowly for a number of months. Like you I experience puffiness in the face and severe achne. However the good news was once I visited a dermotalogist I got the acne sorted. Also once I got my dose of steroids down to around 5mg every few days the puffiness went away. So you will get there just give it time.

I also would suggest that you mention methotraxate to your doctor and see what he says. I tried every drug possible and none worked for me accept for this one. Also once the methotraxate enters the blood stream I found I didnt need the steroids anymore in order to control my symptoms. Best of look, if you need any more info just ask.

Cheers
Chris

nerdysal

Just want to remind everyone...

nerdysal wrote: »

Hey guys,

A few of us from the Facebook group are working on a letter writing campaign re: Long term illness scheme. I'm going get the ball rolling tomorrow and post 2 letters to Jan O Sullivan and James Reilly (both of whom are the health spokesperson for their respective parties). If you have any suggestions of who to contact or just want any info please send an email to ibdcampaignforrights@gmail.com.

We would be very grateful for any suggestions (except any negative ones telling us not to bother, we're in a recession!!!! That is why we need to be louder than ever!)

Thanks

Sara

wild_swan

Q - why is entocort under ongoing investigation in america?

The_Conductor

wild_swan wrote: »

Q - why is entocort under ongoing investigation in america?

Known in Ireland as Budesonine- its a corticosteroid- however in doses of between 1/20 and 1/40th the equivalent doses of a systemic cortisone. It received rushed FDA approval- given lobbying from the pharmaceutical industry- on the basis that it would vastly reduce the side effects of long term cortisone users- while still effectively treating the underlying complaint. Subsequent blind trials were inconclusive- and the FDA started a consultative process inviting feedback from patients on their experiences. This is most unusual for the FDA (and a very welcome development). The theory is that it delivers a local shot of steroids to the area that needs the steroids- without affecting a person's whole body. There have been numerous studies doubting its efficacy. However- there are also numerous patient advocate groups who sing its praises. I use it personally- among other medications. I personally believe it has a role to play in the treatment of Crohn's Disease- but I don't believe a lot of the hype behind it at the same time......?

wild_swan

thanks for that - I'm interested in it because I was on it & i thought I got way more side effects off it than regular steroids - but I wasn't believed by my doctor. At the full dose of entocort I got palpitations, insomnia, shakes - like how you described iv steroids in a previous post - like too much caffine! I don't seem to get them at all or as much on regular steroids. I was also guaranteed it didn't have as severe damage on the body as regular steroids - Since being on entocort - I got early stage osteoporosis & have suspected adrenal gland supression AND since switching back to the good old reliable regular steroids I have had a tenfold improvement in my crohn's - I now know entocort was doing little or nothing for me (but I may have crohn's in areas that entocort wouldn't work anyway so that doesn't mean it won't work for other people)

So I would believe the hype - I think doctors are taking for granted that its a safe steroid when in fact it is still a steroid - so maybe thats the possible problem - its just like the rest of the steroid family - its not as nice a family member as they thought!!

nerdysal

Hey everyone,

We are starting to drum up interest in our campaign to update the LTI scheme and have received several emails from people wanting to help, but we are going to need alot more if we are going to have any effect. Again, the email is ibdcampaignforrights@gmail.com and we have also just set up a website www.ibdforlongtermillness.weebly.com Bare in mind, we only set up the website on Friday but more information will be posted in the coming weeks.

Thanks

Sara

LegacyUser

ncmc wrote: »

I can't remember what he was on after the last surgery, I know they plan to keep him on Humira after this surgery. It is an imuno-suppressant that he injects once a fortnight, he has been on it for about 18 months. It has worked quite well for him and his doctor has said that it should work even better after the surgery, as it is better at preventing new flare-ups than dealing with existing ones. It is super expensive, so thank God it is covered under the DPS. They have increased his dose to once a week in the run up to his surgery. Please God you stay well after your surgery. The doc must be fairly confident if they haven't got you on any further meds.

Thats great that it works for him I heard of Humira alright I was on immuno suppresant 6MP twice and both times it had disasterous effects I hope they are confident Its 2months until I see them again I will have to have a colonoscopy in the next year to see how my insides are doing The only thing Im worried about is my bones Ive never had a bone density scan and Ive had an awful lot of steroids in the last 2 years so I think I might ask them about that the next time. Have ye gotten a date for the surgery? Will say a prayer for him. Mr McCourt is a whizz kid thou

LegacyUser

Hi Shane

Would you recommend a bone density scan after a lot of steroid usage -
Prednisone -
3 months in 2007
4 months in 2008
Entocort - 2 months in 2009

Thanks.

ncmc

Unregistered wrote: »

Thats great that it works for him I heard of Humira alright I was on immuno suppresant 6MP twice and both times it had disasterous effects I hope they are confident Its 2months until I see them again I will have to have a colonoscopy in the next year to see how my insides are doing The only thing Im worried about is my bones Ive never had a bone density scan and Ive had an awful lot of steroids in the last 2 years so I think I might ask them about that the next time. Have ye gotten a date for the surgery? Will say a prayer for him. Mr McCourt is a whizz kid thou

Thank you so much! Surgery is on Friday, so please God everything goes ok

The_Conductor

Unregistered wrote: »

Hi Shane

Would you recommend a bone density scan after a lot of steroid usage -
Prednisone -
3 months in 2007
4 months in 2008
Entocort - 2 months in 2009

Thanks.

You really need to consult your specialist on this one. I've been using steroids, at high doses, for well over 15 years- so my personal experiences are not comparable to yours. But eveyone is different- you do really need to bring this up with your consultant.

Geog

Good luck with the surgery!

silversurfer

Unregistered wrote: »

Hi Shane

Would you recommend a bone density scan after a lot of steroid usage -
Prednisone -
3 months in 2007
4 months in 2008
Entocort - 2 months in 2009

Thanks.

Well, prolonged use of steroids is proven to reduce bone. The best thing is to ask your doctor or specialist, and see if they think the level of steroid use necessitates a bone density check.

in one year (52 weeks) I was on steroids for 36 weeks. this as well as lots of previous medical steroid use prompted my specialist to arrange a bone density exam, which showed I have osteopenia, which is a strong indictor of getting osteoprosis in later life. I've been on calcium tablets daily and a weekly fosamax tablet since, I'm in my early 30's, I've been taking these for years now

LegacyUser

silversurfer wrote: »

Well, prolonged use of steroids is proven to reduce bone. The best thing is to ask your doctor or specialist, and see if they think the level of steroid use necessitates a bone density check.

in one year (52 weeks) I was on steroids for 36 weeks. this as well as lots of previous medical steroid use prompted my specialist to arrange a bone density exam, which showed I have osteopenia, which is a strong indictor of getting osteoprosis in later life. I've been on calcium tablets daily and a weekly fosamax tablet since, I'm in my early 30's, I've been taking these for years now

Thanks for your reply! I've been on calcium tablets daily since I was diagnosed in 2007 - sometimes twice a day so I had them all the time I was on steroids and I can tolerate all dairy products so Im lucky and eat as much as I can. I will ask them when Im with them in August. What does the exam involve exactly?!

nerdysal

The bone density exam is the DXA scan and it's just like an xray of your hip and spine.

silversurfer

From what I recall, you lie on a table and they do the scan, and you get the results there and then

The_Conductor

silversurfer wrote: »

From what I recall, you lie on a table and they do the scan, and you get the results there and then

Normally the scan is done by a radiographer who sends the results to your consultant. It would be very unusual to be given the results there and then. Normally they won't comment on the results one way or the other. As they develop the slides they are checking for clarity- not taking readings- and if its considered that an image isn't detailed enough they take extra shots.

S.

Whoze

Hey everybody,
Wow, I couldnt believe my eyes when I saw the amount of pages in the Crohn's topic! My doctor had me believe it was a very 'few and far between' illness!
First of all after reading through the thread, I just wanted to offer my sympathy with everyone, alot of you have had it worse off than myself and I hope with time it'll be easier.
I was lucky in that my diagnosis came quick enough after my first real symptoms started showing, it was September of last year when I started showing symptoms (I had just started college, it was the sudden change in lifestyle which triggered it), and was diagnosed officially in May.

Starting off, all I noticed was extreme lack of energy, I could barely manage the 15min walk to college every day, and towards the end of October, gave up completely. Unfortunately, the Xmas tests mirrored my efforts and I had failed 6 out of 8 of my subjects. Thinking I could make a fresh start after the hols, and work hard to pass by compensation in the summer, I wasnt too worried.
Long story short, thats when the more serious symptoms took over and I ended up missing 10 weeks of the second semester! I went back to college in mid-May, a couple of weeks before the exams and fought my case with the college's Vice-President, who didnt know what Crohn's was, passed it off as the flu, and told me I wouldnt be taking the end of year exams, saying Crohn's 'was no excuse for missing almost a whole semester' and that I should have 'made the effort to come to college'! I talked to my lecturers and even the President himself, and was given the chance to sit the exams. I studyed hard the last couple of weeks, catching up tenfold, only to get a relapse from stress the weekend before the exams! I was heartbroken when my GP told me I couldnt sit them because of my health, and deferred my exams to be taken at the same time as the repeats in August.
So after everything, at the end of the summer, I've got my end of year exams to look forward to!
Anyway, just thought I'd stick my war-story into the pot.
All the best.

silversurfer

smccarrick wrote: »

Normally the scan is done by a radiographer who sends the results to your consultant. It would be very unusual to be given the results there and then. Normally they won't comment on the results one way or the other. As they develop the slides they are checking for clarity- not taking readings- and if its considered that an image isn't detailed enough they take extra shots.

S.

I remember getting the results on the day, as the machine they used was able to give the bone densities there and then. The lady that did the scan confirmed bone loss (i can't remember if she used the term osteopenia) and I remember her giving me sheets about calcium rich foods and telling me about high impact excerise being important.
She was able to show the readings and indicate the areas where the bone loss was evident.
I did have to go to the specialist who perscribed the calcium supplements and would have definately confirmed the osteopenia.

I assumed this was standard procedure, but I suppose other hospitals may not have the same equipment or may have procedures requiring the results to be sent to the specialsit/ doctor first.

rgds,
s

LegacyUser

silversurfer wrote: »

I remember getting the results on the day, as the machine they used was able to give the bone densities there and then. The lady that did the scan confirmed bone loss (i can't remember if she used the term osteopenia) and I remember her giving me sheets about calcium rich foods and telling me about high impact excerise being important.
She was able to show the readings and indicate the areas where the bone loss was evident.
I did have to go to the specialist who perscribed the calcium supplements and would have definately confirmed the osteopenia.

I assumed this was standard procedure, but I suppose other hospitals may not have the same equipment or may have procedures requiring the results to be sent to the specialsit/ doctor first.

rgds,
s

Thanks very much for that i read up some bits about it online and it does say that you get the results there and then so thats a bit of a relief. Its something I am definately going to ask about ....
Have sent my letter to Mary Harney in relation to the LTI card so fingers crossed.

nerdysal

Thanks a million for that! Everyone keep the letters going!!! If you have any questions don't forget our email and website:

ibdcampaignforrights@gmail.com
http://www.ibdforlongtermillness.weebly.com

We're slowly getting the interest going. If you could spread the word about the website that would be brilliant!
Thanks
Sara x

wild_swan

Whoze - I totally get you about the hassles of going through college with Crohn's - I had to seriously fight to be listened too - I actually had to lie at one stage to get to defer my exams - apparently being ongoing sick wasn't enough! - I said I was touch & go for an operation - now that was before I had a full diagnosis so bear in mind I hadnt the full medical jist myself except I wasn't able to do exams!! Did you have a consultants letter when going to these college ppl - if not or if you did make sure you tell your consultant the hassle they are giving you & ask for a really detailed letter about you and your crohn's & give it to them - they can't contradict a doctor - do you know you are entitled to a room of your own during exams with breaks of 10 mins every hour which don't come from your exam time & time to go to the toilet without having it taken from your exam & can bring tablets and food into the exam. have you gone to your college disability offficer & registered? because legally they have to help you do your exams as best they can its called 'reasonable accomodations' - go to your student union welfare officer as well if you are having problems dealing with college ppl. also you can spread out your exams - some for the usual time & some for the repeat time to take the pressure off & if it gets really tough take your final year over 2 yrs - i did that - not by choice but if i didn't i wouldn't have got my degree at all. Maybe you know all of this but it took me time to learn it & i often got sick learning so hopefully its of some use to you!

The_Conductor

wild_swan - thanks for voicing what I was going to say- but couldn't get my mind around how to put it....... I had a lot of trouble in college too- I ended up repeating first year altogether, and retaking numerous exams in years 2 and 3- I only got my honours degree in the end because of the modular nature of the courses at UCD where half my 3rd year results went towards my finals. Even then- I was day released from hospital to defend my thesis.

Lack of knowledge among both sufferers, but also college authorities, as to how debilitating Crohn's really is- and how it saps your strength and your energy totally aside from the pain and physical symptoms- is appalling......

The good work that Karin and Sara and so many others are doing in trying to educate both younger sufferers but also the medical profession and hopefully- in time, educational institutions and when necessary equiping people so they can approach employers with details of their condition without fear of consequences- cannot be downplayed.

I'm getting depressed thinking of how bad school and then college was for me- and am saddened to hear that over 10 years later- people are going through exactly the same again. Crohn's can be as much a psychologically cruel disease- as it can be debilitating- even on your good days, there is always the fear of tomorrow.......

Please heed the advice about the college disability officer, taking your exams spread over longer periods of time and any other possible accommodations that may be made for you. For your sake- you need to accept that you have limitations that other people do not have- and while there are a million and one things that you can happily do today- if you have a flareup they are simply not possible tomorrow or the next day. Its very difficult for many people to accept that you can appear to be perfectly normal one day- and incapable of even drinking a glass of water the next....... People find it very difficlt to reconcile the outwardly normal person who can do whatever it is one day- with someone who is just incapacitated the next. That in my mind is almost the hardest- the lack of understanding........

Please make sure you use any facilities that are available to you.

Best wishes,

Shane

ncmc

Hello again all, if you've read my previous posts you may know that my hubby Brian was due to have an ilium resection yesterday to have strictures removed. This was after several hospitalisations with acute blockages.

The surgery went ahead, but when they got in there, they found no strictures, just adhesions caused by his previous surgery in 2002. The adhesions had caused his intestine to stick together and get twisted, which gave him the same symptoms as a blockage. The surgeon went through his intestine by hand twice and freed up the areas affected. He said that everything looked pretty good in there and that there wasn't much evidence of Crohns.

Now, I am taking this as great news, afterall, the less intestine you lose the better, right? And i'm sure that his recovery will be so much quicker as there is no internal incision site.

However, I don't really know much about adhesions, has anyone here every needed surgery to correct them? Is this something that is likely to keep happening again and again? Am I right in thinking that this is a better diagnosis than strictures? Also, what I have read on adhesions say that the more surgeries you have, the more chance they will come back, would that be the case with this surgery, where they didn't actually incise, just freed things up?

Sorry for all the questions, I had done so much research on strictures, never occured to me the problem could be something else!