Crohn's Disease

Tony H

hey MissG , sorry to hear about the surgery , i have no personal experience with surgery for crohn's but my mother had surgery because of her crohn's and the difference it made to her life was unbelievable , she had at least 10 great years of normal life after the surgery , hope you feel better soon .

MsGiggles

Hello All

I thought I would give you an update. Went in today and was told that my surgery is on hold due to a superbug in the hospital. I have my consent form signed and am now basically on call for the next 6 weeks....!

OUTDOORLASS

That means there will be a really big clean up to kill off the bugs...which means you have a much lower chance of
superbug infection during the op.

MsGiggles

OUTDOORLASS wrote: »

That means there will be a really big clean up to kill off the bugs...which means you have a much lower chance of
superbug infection during the op.

Yes outdoorlass. I'm treating this as a good thing. Get the place spic and span for my surgery !!!

mcratsix

Hope everything goes to plan Ms.Giggles. Try to focus on the positive impact it will have. My dad has had two surgeries for Chron's, and he's had big improvements after each. He had over 20 years between the surgeries. His mother had surgery for Chrons too, and she honestly had the best years of her life after it.
Out of interest, do most people here have a family history of Chrons? My family is riddled with it. Me, my dad, his two sisters, three of their 5 kids, his mum. Bit insane really.

I saw my consultant last week and I'm going to start Imuran next month. I'm both happy and scared. My dad took it before and had a terrible reaction, he got a rash all over his body, so I'm afraid I could have the same reaction. I'm happy just to try something new, I've had 5 doses of steroids this year and I know that's not sustainable. The disease has really been taking over my life the last year, and I can't stand it. Have people in here found Imuran helpful? Thanks

MsGiggles

mcratsix wrote: »

Hope everything goes to plan Ms.Giggles. Try to focus on the positive impact it will have. My dad has had two surgeries for Chron's, and he's had big improvements after each. He had over 20 years between the surgeries. His mother had surgery for Chrons too, and she honestly had the best years of her life after it.
Out of interest, do most people here have a family history of Chrons? My family is riddled with it. Me, my dad, his two sisters, three of their 5 kids, his mum. Bit insane really.

I saw my consultant last week and I'm going to start Imuran next month. I'm both happy and scared. My dad took it before and had a terrible reaction, he got a rash all over his body, so I'm afraid I could have the same reaction. I'm happy just to try something new, I've had 5 doses of steroids this year and I know that's not sustainable. The disease has really been taking over my life the last year, and I can't stand it. Have people in here found Imuran helpful? Thanks

Hey mcratsix - Both me and my sister have Crohn's disease. She was diagnosed when she was 14 (now 30) and I was diagnosed when I was 31 (now 32). There is definitely some genetic factor I think with it.....but other than me and my sis there are no other family members.

Regarding your anxiety about the new drug, I can totally understand that but I want to put your mind at ease. I was prescribed Mercaptopurine last year, which is in the same family as Imuran (My sister was on this for years) after taking the Mercaptopurine, It caused me to get pancreatitis - only a minimal chance that I would have that reaction ! The thing is my sister was on that same drug for years and it totally agreed with her and she never had any side effects. So I suppose what I am trying to highlight here is just because your Dad had a horrid time on one drug definitely doesn't mean that you will have the same reaction.

Try not to be anxious (I know easier said than done !) and hopefully this new drug will give you great relief

Be well x

mcratsix

MsGiggles wrote: »

Hey mcratsix - Both me and my sister have Crohn's disease. She was diagnosed when she was 14 (now 30) and I was diagnosed when I was 31 (now 32). There is definitely some genetic factor I think with it.....but other than me and my sis there are no other family members.

Regarding your anxiety about the new drug, I can totally understand that but I want to put your mind at ease. I was prescribed Mercaptopurine last year, which is in the same family as Imuran (My sister was on this for years) after taking the Mercaptopurine, It caused me to get pancreatitis - only a minimal chance that I would have that reaction ! The thing is my sister was on that same drug for years and it totally agreed with her and she never had any side effects. So I suppose what I am trying to highlight here is just because your Dad had a horrid time on one drug definitely doesn't mean that you will have the same reaction.

Try not to be anxious (I know easier said than done !) and hopefully this new drug will give you great relief

Be well x

Thanks Ms.Giggles. I'll just have to wait and see how it goes. I'm pinning a lot on this, I feel like I'm falling apart at the seams lately. Wish I could just start it now and not have to wait another 4 weeks!
I guess you're in the same boat with the surgery. Hopefully by Christmas we can be on the road to recovery, that's what I'm aiming for at the moment.
Keep us posted.

The_Conductor

MsGiggles wrote: »

Hey mcratsix - Both me and my sister have Crohn's disease. She was diagnosed when she was 14 (now 30) and I was diagnosed when I was 31 (now 32). There is definitely some genetic factor I think with it.....but other than me and my sis there are no other family members.

Regarding your anxiety about the new drug, I can totally understand that but I want to put your mind at ease. I was prescribed Mercaptopurine last year, which is in the same family as Imuran (My sister was on this for years) after taking the Mercaptopurine, It caused me to get pancreatitis - only a minimal chance that I would have that reaction ! The thing is my sister was on that same drug for years and it totally agreed with her and she never had any side effects. So I suppose what I am trying to highlight here is just because your Dad had a horrid time on one drug definitely doesn't mean that you will have the same reaction.

Try not to be anxious (I know easier said than done !) and hopefully this new drug will give you great relief

Be well x

There are a few funny occurrences though- I'm adopted, not a blood relative of my brother- but we both have Crohns. We lived abroad when we were kids- in places where milk pasteurisation probably either didn't exist- or was not on parr with here- so its not a stretch to suggest we both encountered pathogens in the wider environment that caused Crohns.

It would make very interesting reading- if there was a study done on environmental versus genetic links in the occurrences of Crohns. The closest I've found are studies of this nature on the occurrences of Johnnes Disease in cattle (this is the manifestation of Crohn's in cows). Apparently- governments are more willing to fund research on how this debilitating disease occurs in cattle- and how to mitigate it- than they are to focus on human occurences- as its easier to put a price tag on how it affects the national cattle herd..........

Anyhow- if you're bored- Google 'Johnnes Disease' and you'll find some very interesting studies.

mcratsix

Interesting stuff. There are so many possible factors that come into play (genetics, environment, stress, diet) that it's very difficult to separate causes. I got diagnosed during a year where I had virtually no stress (Transition Year in school) but my diet was very poor. My dad was the same when he was younger. Since then, my diet has vastly improved but I get flares whenever I'm very stressed.

Gary_Mc_Cork

Hi i was diagnosed with crohns 5 months ago after putting up with severe pain for a long time and spent weeks in hospital as they were trying to find the cause of my pain. Since being diagnosed I have missed out on my 2nd year of college and also had to leave my job and focus on recovering . After 3 months on budesonide pentasa and all the painkillers in the world my condition hasnt improved like I had hoped.

I am now going back on steroids and am also starting humira . I am 22 and feel like my whole life has been ripped from me since this happened. I havent played soccer went to the gym or been out with friends in the last 6 months . I dont leave my house for more than 5 minutes in a car and feel completely isolated and what makes it worse is i dont know anyone with the disease.

Does anyone have any good or bad experience with humira?

And also after pressure to attend courses or be cut off by the social welfare i have recently printed off a disability allowance form . Does anyone have any experience in what documentation is sufficient to get to support your application or will they have everything from my doctors file .

Thanks for help and replys in advance ,

Northern Monkey

Welcome to the board Gary. I've been on humira just over 2 years and it has changed my life. I would consider myself (almost) normal again since being on it. I experienced extreme tiredness when I first started using it, so it is worth factoring that in when you choose your injection day. I take mine on a Friday, so have the weekend to rest if I need to (rarely happens these days).

OUTDOORLASS

Welcome Gary.
Things WILL improve. Give the Humira a chance. A lot of us here have been through the horrors...and have gone into
remission, with life back to 99% normality. And for the days when things are bad....thats what this forum is for.
If you have a query/worry, somebody here has gone through it, and has some advise.... Or if you just want to vent....thats what this forum is also for. Best wishes to you. x.

princess-lala

Just ugh!

I've been feeling so icky lately, ended up in casualty last week and was put back on steroids.

Saw my consultant this week who stopped the steroids, is now looking for an urgent colonoscopy and whatnot and he's even talking about surgery.

I didn't go into too much details with him because I kinda freaked out. Then calmed down and said there's no point thinking of surgery until he confirms it 100%!

I just miss my being well days

MsGiggles

Gary_Mc_Cork wrote: »

Hi i was diagnosed with crohns 5 months ago after putting up with severe pain for a long time and spent weeks in hospital as they were trying to find the cause of my pain. Since being diagnosed I have missed out on my 2nd year of college and also had to leave my job and focus on recovering . After 3 months on budesonide pentasa and all the painkillers in the world my condition hasnt improved like I had hoped.

I am now going back on steroids and am also starting humira . I am 22 and feel like my whole life has been ripped from me since this happened. I havent played soccer went to the gym or been out with friends in the last 6 months . I dont leave my house for more than 5 minutes in a car and feel completely isolated and what makes it worse is i dont know anyone with the disease.

Does anyone have any good or bad experience with humira?

And also after pressure to attend courses or be cut off by the social welfare i have recently printed off a disability allowance form . Does anyone have any experience in what documentation is sufficient to get to support your application or will they have everything from my doctors file .

Thanks for help and replys in advance ,

Welcome Gary

So sorry you have had such a tough time. I can't praise the people on this forum enough. There is always someone here to help you with any questions or concerns you have, they are such a great bunch and help me so much.

I'm currently waiting to be called for surgery , but my sister who has Crohns also takes humira. It took a little while to kick in but it sincerely works very well for her, she is able to do almost anything !! I think with this illness you have to be ready for the fight mentally and once you get your head lined up you will be in a much better place.

Be well x

A Shopkeeper

best of luck Gary. this place is a great support.

Gael23

Gary_Mc_Cork wrote: »

Does anyone have any good or bad experience with humira?

And also after pressure to attend courses or be cut off by the social welfare i have recently printed off a disability allowance form . Does anyone have any experience in what documentation is sufficient to get to support your application or will they have everything from my doctors file .

Thanks for help and replys in advance ,

I know someone on Humira for a different condition and he says it has changed his life. It can take a while to work so patience is needed.
Re social welfare, a letter from your Gastroenterologist should do

mcratsix

Hey Gary, I'm really sorry to hear about your situation. I feel I can relate, I'm in my 1st year of college and my colitis has been worse than ever. I'm struggling to make friends because I feel like I can't go to any nights out or parties, I'm too sick or I'm afraid of getting stuck somewhere without a toilet. I feel like I have no life, when I'm not in college or at work I'm just sitting in my room recovering/sleeping/curled up into a ball with the pain in my stomach. I'm really into soccer too and I haven't been able to do any exercise since august.Just too exhausted. I've found it helpful to experiment with diet to find your triggers - for example, I can't tolerate pizza (unfortunately), cream, anything really oily or fatty, alcohol etc. When I avoid these, I don't feel amazing or anything, but when I do eat them, things are much, much worse. I've also found that if I eat anything very quickly, I get bad stomach pains. On a psychological level, I think you have to accept your bad days when they come, don't get angry with yourself or depressed. It's not about forcing happiness when you're sick, that's just not possible, but don't let negative emotions take over, and take stock of the good things you have going on, like family or friends or whatever.
My dad is on humira and it has been very good for his Chron's, and I know lots of other sufferers who have only had good things to say about it, so hopefully it will be the same for you.

Oasis678

HI all just wondering if anyone can recommend way of getting cheaper medications currently getting through dps and it's killing me cost wise with dublin rents childcare,loans etc I'm on imuran,pentasa sachet, and 2 inhalers. Checked up north but not much saving is anyone getting these in Spain or elsewhere in europe that might work out cheaper. Thanks!

Totofan99

Oasis678 wrote: »

HI all just wondering if anyone can recommend way of getting cheaper medications currently getting through dps and it's killing me cost wise with dublin rents childcare,loans etc I'm on imuran,pentasa sachet, and 2 inhalers. Checked up north but not much saving is anyone getting these in Spain or elsewhere in europe that might work out cheaper. Thanks!

I can't I'm afraid. But apply for a medical card. And get on to your local TD to help things along if you need to. It's a great time to get on to them as well, coming up to an election.

The_Conductor

Unfortunately we're all in the same boat- vis-a-vis DPS. There have been months when I've gone without medication- as the DPS scheme is just too expensive (and after I prioritise all those things that *have* to be paid- medication is somewhat down the list). It is expensive- you're best bet is to try your damndest to qualify for a medical card. For similar reasons- I rarely visit my GP- the government seem to think we're made of money........

mcratsix

The_Conductor wrote: »

Unfortunately we're all in the same boat- vis-a-vis DPS. There have been months when I've gone without medication- as the DPS scheme is just too expensive (and after I prioritise all those things that *have* to be paid- medication is somewhat down the list). It is expensive- you're best bet is to try your damndest to qualify for a medical card. For similar reasons- I rarely visit my GP- the government seem to think we're made of money........

Just on this, has anyone here managed to get a medical card because of their chron's or colitis? I didn't think it was possible because it isn't one of the severe ongoing illnesses that the government decided warrant a medical card.
If it is indeed possible, under what grounds?
I would dearly love a medical card, my GP visits absolutely drain my money. I've worked part-time this entire college semester and basically have nothing to show for it due to countless GP visits and A and E visits, as well as other medical costs. Any help appreciated!

Totofan99

mcratsix wrote: »

Just on this, has anyone here managed to get a medical card because of their chron's or colitis? I didn't think it was possible because it isn't one of the severe ongoing illnesses that the government decided warrant a medical card.
If it is indeed possible, under what grounds?
I would dearly love a medical card, my GP visits absolutely drain my money. I've worked part-time this entire college semester and basically have nothing to show for it due to countless GP visits and A and E visits, as well as other medical costs. Any help appreciated!

I qualified for a medical card because I was under the income threshold, but I even had a battle on my hands there because of cock ups on their part.

You can also qualify for a medical card if they decide that you have a medical condition which causes 'undue hardship'. There's some info on it here: http://www.hse.ie/eng/services/list/1/schemes/mc/about/Amieligible/

Apply for the medical card, and make your case well. Include ALL your expenses. They take into account rent, childcare, costs of travelling to work, etc. Include photocopies of receipts for your medications, visits to your GP, hospital stays, all of that. And if you're refused, get on to your local TD.

By the way, they will also assess you for a GP Visit card when you send in the medical card application. The income threshold for the GP card is higher so if you don't get the medical card, you might get that.

Good luck with it!

ChartAccount

Hi guys,

did anyone here try LDN or CBD oil or Marijuana for Chrons?

How long can i stay on steroid and what are the real consequences???

Whats humira like?

Thanks!!!

mcratsix

Totofan99 wrote: »

I qualified for a medical card because I was under the income threshold, but I even had a battle on my hands there because of cock ups on their part.

You can also qualify for a medical card if they decide that you have a medical condition which causes 'undue hardship'. There's some info on it here: http://www.hse.ie/eng/services/list/1/schemes/mc/about/Amieligible/

Apply for the medical card, and make your case well. Include ALL your expenses. They take into account rent, childcare, costs of travelling to work, etc. Include photocopies of receipts for your medications, visits to your GP, hospital stays, all of that. And if you're refused, get on to your local TD.

By the way, they will also assess you for a GP Visit card when you send in the medical card application. The income threshold for the GP card is higher so if you don't get the medical card, you might get that.

Good luck with it!

Thank you so much!

A Shopkeeper

Hi,

Does anybody have health insurance? Or can anybody give a recommendation. I've been looking online and done a few dummy runs and can't see anywhere to include that I have Crohns. So I'm going to have to ring around.

Thanks

Littlehorny

A Shopkeeper wrote: »

Hi,

Does anybody have health insurance? Or can anybody give a recommendation. I've been looking online and done a few dummy runs and can't see anywhere to include that I have Crohns. So I'm going to have to ring around.

Thanks

This was about ten years ago,my wife has Crohns and this is our experience. We applied to Vhi and although we were quoted the monthly premiums were very big and they would not give us instant cover. Basically we had to pay them for two years before my wife was allowed make any kind of claim.

mcratsix

Hey guys,
I was wondering does anyone here take regular (as in daily) pain medication for chron's/colitis?
Recently I've been having lots of abdominal pain, but my other symptoms are fairly mild. My consultant wants to put me on Immuran but I'm reluctant. If I take a few panadol every day it deals with the pain, and I'd rather this than take on a new immunosupressant, especially since I am extremely prone to infections as it is.

So basically I'm wondering has anyone here been told it's fine to take pain relief every day?
I realise this is probably a question for my doctor but I'm just wondering does anyone here have any experience. Thanks.

mcratsix

Hey guys,
I was wondering does anyone here take regular (as in daily) pain medication for chron's/colitis?
Recently I've been having lots of abdominal pain, but my other symptoms are fairly mild. My consultant wants to put me on Immuran but I'm reluctant. If I take a few panadol every day it deals with the pain, and I'd rather this than take on a new immunosupressant, especially since I am extremely prone to infections as it is.

So basically I'm wondering has anyone here been told it's fine to take pain relief every day?
I realise this is probably a question for my doctor but I'm just wondering does anyone here have any experience. Thanks.

TOMP

Oasis678 wrote: »

HI all just wondering if anyone can recommend way of getting cheaper medications currently getting through dps and it's killing me cost wise with dublin rents childcare,loans etc I'm on imuran,pentasa sachet, and 2 inhalers. Checked up north but not much saving is anyone getting these in Spain or elsewhere in europe that might work out cheaper. Thanks!

Imuran is a good bit cheaper in Spain. I recently got a friend to get a years supply from Canary Islands. Bring an empty box to show them also bring a prescription but they dont always ask for it.

Trebor176

I have to go for a sigmoidoscopy during the week. Has anyone had this done before?