Crohn's Disease

The_Conductor

divinereef wrote: »

just wondering do people know that long tern use of steriods can lead to brittle bones ,,,,,,,,:mad:

Well aware of it. At my last Dexa scan at St. Vincents (I was scheduled to get them done every 2 years), I was diagnosed with osteoporosis (at 33......)

Often someone in this situation might be prescribed tablets to try to enhance calcium absorption- often with high doses of Vitamin K (which is why its so dangerous to go over the stated dose).

There are also other complications possibly resulting from long term steroid use. I wouldn't recommend going on a Google spree looking at all the possibilities though- just because something happens to someone else- does not mean its necessarily going to happen to you.......

BrianJD

Unregistered wrote: »

Hi Brian -

I've a question for you! I'm about the same as you re meds at the mo - on humira. What I wanted to ask you is why you got the bowel resection? Because I've got severe ongoing pain at times waking me at night & stopping me doing things during the day I'm taking strong painkillers for it - but at the same time the meds are settling my diarrhoea - i know my cts have thickening of the bowel & there was mention of surgery before - so i guess i'm just wondering if you've any symptoms like mine - Thanks And best of luck with the operation - if its any consolation its probably going to rain the whole summer here

Hi

I'm having the resection because i've had 3 bowel obstructions in the last 12 months. I seem to have 2 narrowings in my small bowel and we felt that for peace of mind, i'd get them sorted. It just wasn't suitable having to keep going in to hospital for a few days at a time even though my obstructions were self relvolving. My wife and i really felt we couldn't relax and every twinge had me worried about an obstruction. I've been on Humira for just over a year and i havw found it fantastic. Up until about a month ago all my usual symptoms had cleared up and that why it was so frustrating to keep going to hospital when i had been feeling okay. I originally had the operation in 2002 simply because nothing else would clear up what was a fairly inflamed small bowel. I'm suddenly starting to dread the operation because it's really the first time i have a planned visit to hospital so i have had time to think about it. Sorry i'm rambling. Hope you feel better soon. The operation (if you need it) really isn't too bad and once the first few days are over (in a morphine haze) you will def feel alot better. My doctor feels that by having the operation and a clean slate, then Humira will have a much better chance of preventing a repeat.

On a sub note, i've recently been to see a Mr Morgan McCourt in CUH and i can honestly say i've never met a more friendly, helpfull and patient surgeon.

Best of luck

superfear

guys i suffer from a gastric ulser and im on Nexium at least 1 a day if im lucky, these are very expensive and im just wondering has any1 come accross a better way to treat this??

cheers

The_Conductor

superfear wrote: »

guys i suffer from a gastric ulser and im on Nexium at least 1 a day if im lucky, these are very expensive and im just wondering has any1 come accross a better way to treat this??

cheers

I take it that you also have Crohns- and have been prescribed the Nexium in conjunction with your regular Crohn's medication? To be honest- a gastric ulcer is a wholly different treatment than regular Crohns (though its not uncommon for Crohn's sufferers to get gastric ulcers). You really need to discuss this with your consultant.

CathyMoran

Hope that no one minds me asking - how often do you get colonoscopies? My husband who has crohns has not had one in over 10 years and he has had LOTS of surgery - he is my life and I worry about him. Thanks.

Dan133269

kildareash wrote: »

Hi everyone...
Bad news this week, consultant recommended an operation.

Quick update:
OH spent three months in hospital before Christmas.
All the other remedies didn't work, but Humera seemed to be doing the trick.
About six weeks ago, he had some symptoms of a flare up. But they'd last for a day or two then he'd feel fine for a few days.
Anyway, last week, the situation escalated. His GP was worried about the amount of blood he had lost over the weeks, and referred him back down to hosp.
Hosp booked him for scope the very next day and the consultant rang on Monday with an appointment for this week.

He basically told him that he's having a bad flare up and recommended he have surgery. However, there doesn't seem to be a sense of urgency. He's organising appointments with stoma nurse and the surgeon. But it will be OH's decision whether he wants to go ahead with it.

He's 28 years of age, and obviously the prospects of what the operation involves are freaking the hell out of him.
To me, it kinda feels like the doc is giving up on him or something.
Reading other posts here, people talk about being on steriods long term.
Since he came out of hosp, he has had one course of steriods for a week, but he did start to feel a bit better.

Has anyone looked into alternative treatments?? We're willing to try anything that won't make him worse, but might make him feel better.

Also, we're thinking about getting a second opinion. Currently, he's under Dr Courteney in Kilkenny, which we have heard great things about, and can't fault him to date. But I don't think it would do any harm to speak to someone else. Any recommendations??

Finally, many of the previous posters have had operations, would you mind sharing your experiences of life after the op with us?
We've tried to do our own research on the net, but I'm so cautious about it because it can throw up anything. But there doesn't seem to be much information from an irish point of view.

Any help would be really appreciated.

Hello, I hope you're oh is doing better now, if you are in Kilkenny, if travelling to Waterford isn't too far for you I would recommend Dr.Kevin Ward at Waterford Regional Hospital.

waterford1988 wrote: »

Hi guys, need some help here.

About 4 weeks ago I had my first remicade treatment. Since then however I have been experiencing some terrible diarreha and stomach cramps. My Gp took some blood tests and he results from inflamation markers came back negative. After doing some research he said this diarreha can be an initial side effect to the treatment. I finally managed to get hold of my consultant and he tells me that remicade does not have his side effect and it is most likely the chrons itself. However if this is the case why would the blood tests not have indicated inflamation?

Im so confused with whats going on with me, im sure the stress of college exams is not helping me either, especially when i'm running to the bathroom about 3 or 4 times per exam.

Anybody experienced something similar?

I'd say the same to yourself waterford1988, Kevin Ward in WRH is excellent in my opinion, knowledgeable, thorough and understanding. I asked him lots of detailed questions and always felt re-assured and in good hands, there's nothing worse than a brusque and dismissive doctor when it comes to something as individual as crohn's disease or indeed any medical condition.

I had 40 cm of my ileum removed in January at the recommendation of Dr.Kevin Ward, the operation was carried out by Mr.Hugo Prins at WRH who also struck me as very competent and I was completely re-assured. Since then I've been pretty much back to full health, still get a bit of diarrhea now and again but no pain and no tiredness or sign of a flare up. My scar is less than 5 inches, barely noticeable and doesn't affect me at all. I'm back lifting weights and exercising and having a few (or many) drinks at the weekend. Hopefully this will continue and for the meantime at least the surgery was the solution, hope this will bring some solace and comfort to others who are worried about it.

How is your health at the mo smcarrick?

I'm sure most of you are aware of www.crohnscolitis.ie but just in case check it out seems to be a lot of information on there

superfear

yes i have crohns too. Ive been to my consultant many times over this and he keeps prescribing me the Nexium, and says i will more than likely be on them for the rest of my life. They are very expensive and can not be good to be taking so many.

The_Conductor

superfear wrote: »

yes i have crohns too. Ive been to my consultant many times over this and he keeps prescribing me the Nexium, and says i will more than likely be on them for the rest of my life. They are very expensive and can not be good to be taking so many.

I would suggest discussing this further with your consultant- and being forthright and open with him. If you're not happy to continue to take the particular course of medication he is prescribing- tell him that- don't beat around the bush. There are other options. Different doctors and specialists may have a lot of experience in the use of particular medications- which is why he/she may be advocating this for you- but while it is a recommendation- you can just as soon state that you are unhappy with it- and what are the alternates.

If you're not happy with the potential long term effects of medication- you have discussed this with your consultant and are still unhappy- along with being a patient, you are also a consumer and it is your prerogative to switch to another consultant should you so wish. There are many very very good gastroenterologists practicing in this field.

superfear

thanks for the advise. i think i may have to change my consultant because there has been no budge on this matter

ncmc

BrianJD wrote: »

Hi

I'm having the resection because i've had 3 bowel obstructions in the last 12 months. I seem to have 2 narrowings in my small bowel and we felt that for peace of mind, i'd have to get them sorted. It just wasn't suitable having to keep going in to hospital for a few days at a time even though my obstructions were self resolving. My wife and i really felt we couldn't relax and every twinge had me worried about an obstruction. I've been on Humira for just over a year and i havw found it fantastic. Up until about a month ago all my usual symptoms had cleared up and that why it was so frustrating to keep going to hospital when i had been feeling okay. I originally had the operation in 2002 simply because nothing else would clear up what was a fairly inflamed small bowel. I'm suddenly starting to dread the operation because it's really the first time i have a planned visit to hospital so i have had time to think about it. Sorry i'm rambling. Hope you feel better soon. The operation (if you need it) really isn't too bad and once the first few days are over (in a morphine haze) you will def feel alot better. My doctor feels that by having the operation and a clean slate, then Humira will have a much better chance of preventing a repeat.

On a sub note, i've recently been to see a Mr Morgan McCourt in CUH and i can honestly say i've never met a more friendly, helpfull and patient surgeon.

Best of luck

Hi all, I'm BrianJD's wife, he was due to get his resection today and we had spent weeks psyching ourselves up for it, booking the time off work, tentatively planning and hoping for a few years Crohns free. Well, he had to be admitted on Tuesday with severe diarrhea, shakes and pain. Turns out he now has colitis in his colon in addition to the strictures in his small bowel. The surgeon was unwilling to operate while he was suffering from a flare up. So now he is back on Humira and has been prescribed Asacolon. We both feel gutted as we feel we are back to square 1 with it.

He can deal with the pain and the diarrhea, it is the constant threat of blockages that he finds hard to deal with. We are too paranoid and nervous to plan anything and it looks like we will have to cancel our planned holiday to Florida in August.

Neither of is are sure of the implications of the colitis in the bowel, he never had it in this area before, we aren't sure if this is something to be worried about or not. The docs in the hospital just seem to want to dash in and out as quickley as possible and are very hard to pin down to get any answers.

On another note, I was feeling really sorry for myself this morning and thinking that no-one had things as hard as us! Well, a short while spent reading this topic is a sobering thing and it has made me realise how bad some people suffer and how lucky Brian is in that he doesn't have it much worse. Thanks to all the people who have shared their experiences, the scary thing is, I have learnt more on here this afternoon than from all the docs that have been in with Brian!

nerdysal

Oh God! Poor Brian! Give him my best wishes... make sure you get answers out of his consultant- it's his/her job to answer your questions so you have every right to now exactly what's going on!

Cathy- I was diagnosed with crohn's in Aug 2005 and since then I have had 3 colonoscopies. The first one was to confirm my diagnosis and the other two were because my condition wasn't improving. Thankfully, the last one didn't show up anything because it was done after my surgery- it was just a really bad sinus infection that was messing up my system!

LegacyUser

irish group on facebook for people with Crohns and UC

http://www.facebook.com/home.php#/group.php?gid=106491930028&ref=mf

wild_swan

Gosh - annoying or what - thats such a pity you have to cancel the holiday. It can be so hard to plan sometimes with Crohn's. Make sure to get answers out of the doctors - ask the nurse what time they're on their rounds & make sure you are there with your husband - or ask for the consultant to talk to you both - not his/her registrar, sho etc. them themselves - afterall they are the one with the final say. I hope you both get some answers so you've some idea where you stand. Let us know how things are progressing.

kildareash

CathyMoran wrote: »

Hope that no one minds me asking - how often do you get colonoscopies? My husband who has crohns has not had one in over 10 years and he has had LOTS of surgery - he is my life and I worry about him. Thanks.

My OH was diagnosed with UC in 2007 following a coloscopy.
He was called in for a follow-up, last August, suffered a major flare up a few weeks later. I suspect, the colonoscopy may have triggered the flare up, as he never picked up after it. And as i have already wrote about the situation got much worse.

He has had two since then, one while he was in the middle of the flare up last year and another a few weeks ago, when he again presented with bad symptoms.

Thankfully, we have now got our date for the surgery.
I'm terrified, but can't show it to him. The nurse, the surgeons are very blase about the ileostomy.
My OH is really sick now tho, he has lost more weight and is really weak. He's barely picking at food and has barely left the house in a month.
The surgery can't come quick enough now, so we can get on with our lives!

LegacyUser

Does anyone find that with steroids their face and body gets very blotchy and sore? I have been off my dose of steroids about 3 days now, and my face is slowly beginning to calm down.

Is there anyway of speeding up the process of healing the blotchyness hopefully by the weekend?

The_Conductor

Unregistered wrote: »

Does anyone find that with steroids their face and body gets very blotchy and sore? I have been off my dose of steroids about 3 days now, and my face is slowly beginning to calm down.

Is there anyway of speeding up the process of healing the blotchyness hopefully by the weekend?

It can take anything from a few days to several weeks for the side effects of steroids to subside (and in some cases months). There is absolutely no way to clear the side effects 'by the weekend'. You should increase your water intake when you are on steroids- but other than that the side effects will subside over time. Relax, take things easy- and the side effects will subside when you stop thinking about them.......

LegacyUser

Hi

Im 25 and have recently had a resection on my ileum for Crohns disease I have a small scar around my belly betton. So far no sign of a flare up Life is Crohns free.

Does anyone know if this will continue forever or can my Crohns come back again

The_Conductor

Unregistered wrote: »

Hi

Im 25 and have recently had a resection on my ileum for Crohns disease I have a small scar around my belly betton. So far no sign of a flare up Life is Crohns free.

Does anyone know if this will continue forever or can my Crohns come back again

The nature of Crohn's is that its a lifelong condition that can flareup at any stage. There is a good likelyhood of a reasonable period of calm, after a resection- however the big difference between Crohn's and UC- is surgical intervention (aka removal) can cure UC- but not Crohns.

Sorry.....

There is a very good Facebook group for Irish Crohn's and UC sufferers- where there is good information to be found. Link here:

Shane

ncmc

Unregistered wrote: »

Hi

Im 25 and have recently had a resection on my ileum for Crohns disease I have a small scar around my belly betton. So far no sign of a flare up Life is Crohns free.

Does anyone know if this will continue forever or can my Crohns come back again

My hubby's surgeon recently told him that you can get up to 10 years Crohns free after a resection, but of course that varies from person to person. He felt the average was 6-7 years.

It's one of the reasons why it makes me so angry that Crohns isn't on the long term illness list for a free medical card. You have it all your life, you can't get more long term than that!

P.s. You must have had keyhole surgery if you're scar is so small? You're very lucky, hubby's scar is quite big as when he had his 1st resection, it wasn't common parctise to do keyhole. As a result, any furthur resections can't be done keyhole either which adds to the recovery time.

LegacyUser

Thanks guys Im hoping it wont come back as Ive had a very miserable few years My scar is small compared to my appendix one lol! Its about an inch below and above my belly button but not that noticeable! I have 2 smaller ones then for the keyhole Was recovered and back to work in 6 weeks time It was well worth it If I had known the difference I would have had it last year!

Im on no medication at the moment only calcium tablets I reckon I had the best surgeon with Mr McCourt and I have great trust in my doctors at CUH as well so hopefully I can live a normal life again!

Medical card = disaster Dont even get me started there I put up a good fight thou and it worked so keep trying!!

The_Conductor

Unregistered wrote: »

Medical card = disaster Dont even get me started there I put up a good fight thou and it worked so keep trying!!

Seriously- if you have the time- I'd be really grateful if you could detail your experiences here.

Thanks,

Shane

LegacyUser

smccarrick wrote: »

Seriously- if you have the time- I'd be really grateful if you could detail your experiences here.

Thanks,

Shane

Sure no problem! Theres lots to tell thou as Ive been through quite a lot with many flareups! Anything you want to ask just fire away

The_Conductor

Unregistered wrote: »

Sure no problem! Theres lots to tell thou as Ive been through quite a lot with many flareups! Anything you want to ask just fire away

Could you detail how you had Crohn's accepted for a medical card- or under the LTI scheme? Obviously its a lifelong illness, and by rights should be included under the LTI scheme- but it isn't. I'd love to know what you did, who you spoke to, what hurdles they made you jump through- until such time as you were given a medical card for your Crohns. Is it a medical card or the LTI card?

Thanks,

Shane

LegacyUser

smccarrick wrote: »

Could you detail how you had Crohn's accepted for a medical card- or under the LTI scheme? Obviously its a lifelong illness, and by rights should be included under the LTI scheme- but it isn't. I'd love to know what you did, who you spoke to, what hurdles they made you jump through- until such time as you were given a medical card for your Crohns. Is it a medical card or the LTI card?

Thanks,

Shane

Hi Shane

My medical card expired in December so I went through the process for renewal firstly, where they refused a new card. I then contacted my local councellor and with his help I sent an application to the Appeals office - with a letter from my local doctor, HR in work, a list of all my outgoings etc... This was again refused but a GP visit card was issued. Again my councellor fought on my behalf, whilst I was admitted with a flare! Circumstances then changed with work due to the recession and because I was admitted for surgery and going to be out of work for a while, I was then granted one for a period of 6 months. This in total took 5 months of uncessary stress which I will again have to go through in October. Something will have to change but where to start is the problem....

The_Conductor

So its a full medical card- and not the LTI card. Do you know if the reason it was initially turned down- the fact that you were working- or were there other reasons used (as the medical card is means based).

We really need to start campaigning properly to get Crohn's Disease added to the LTI scheme (aside from the monthly scheme- EUR100 a month + all the costs of GPs, consultants and procedures + medical insurance is a tremendous strain on someone's finances.

A big problem I found- is I am unable to get protection on my mortgage (I've been trying for years). My policy kicks in, if I die, there is no illness benefit component associated with it. Similarly- I cannot take out insurance on my credit card or term loans- I'm considered to be an uninsurable risk...... :mad:

LegacyUser

smccarrick wrote: »

So its a full medical card- and not the LTI card. Do you know if the reason it was initially turned down- the fact that you were working- or were there other reasons used (as the medical card is means based).

We really need to start campaigning properly to get Crohn's Disease added to the LTI scheme (aside from the monthly scheme- EUR100 a month + all the costs of GPs, consultants and procedures + medical insurance is a tremendous strain on someone's finances.

A big problem I found- is I am unable to get protection on my mortgage (I've been trying for years). My policy kicks in, if I die, there is no illness benefit component associated with it. Similarly- I cannot take out insurance on my credit card or term loans- I'm considered to be an uninsurable risk...... :mad:

Yip its only a medical card I got They turned me down coz they said my earnings were too much and I have no rent/mortgage - ridiculous! I have VHI insurance thank god thou Other wise I could never afford the hospital trips Id be willing to help anyone who wants to start campaigning to get it on the LTI list. I know another girl in Kerry who is the same as us so thats another recruit! Disaster about the mortgage - I never knew that at all Its all ahead of me so .... How are you feeling these days?

Y

The_Conductor

Unregistered wrote: »

Yip its only a medical card I got They turned me down coz they said my earnings were too much and I have no rent/mortgage - ridiculous! I have VHI insurance thank god thou Other wise I could never afford the hospital trips Id be willing to help anyone who wants to start campaigning to get it on the LTI list. I know another girl in Kerry who is the same as us so thats another recruit! Disaster about the mortgage - I never knew that at all Its all ahead of me so .... How are you feeling these days?

Y

I can relate- but for the fact that I have kept up my VHI cover- I'd be in deep deep trouble. Even that is increasing significantly in price the whole time- because I'm seen as a young person- so I get to pay the subsidy for elderly members- without any factoring of my own health or means being taken into account. If the public health system worked- those with long term illnesses, those seriously ill or the aged, would not feel they had to rely on private health insurance for basic health care......

I can't access Facebook here- but there is a Facebook group for young people with Crohn's and UC- who are very proactive in trying to fight for having Crohn's added to the LTI scheme. The reason its not on it- is because people with Crohn's don't tend to have the energy to invest in lobbying politicians/the HSE etc- in the way other groups do. It really is a case of whoever is loudest and makes the most noise- gets heard........

ncmc

I reckon I had the best surgeon with Mr McCourt and I have great trust in my doctors at CUH as well

I'm glad you had a good experience with Mr McCourt, he is due to do my husbands resection on Friday week (please God it will go ahead this time.) He seemed really nice and helpful to my husband, spent a good deal of time talking to him and explaining the surgery, which is a change from some of the 'old school' surgeons.

My husband has also been down the route of talking to councillers and TD's trying to get a medical card and has also been on to Mary Harney with regards to getting it recognised as a LTI, he got nowhere. And whatever chance there was of suceeding when the money was there, I would think there is zero chance now that the coffers are bare. It really annoys me when you see some of the people who get a medical card - no questions asked - it seems people who work hard and pay taxes despite having a debilitating decease get punished. I have to laugh when we get the old PFO letter saying that we earn too much, as Shane says, by the time you pay your doctor, the chemist and VHI, there isn't much left over. Just another example of how FF have screwed over the average working person. *Sorry, didn't mean to get political*:o

LegacyUser

ncmc wrote: »

I'm glad you had a good experience with Mr McCourt, he is due to do my husbands resection on Friday week (please God it will go ahead this time.) He seemed really nice and helpful to my husband, spent a good deal of time talking to him and explaining the surgery, which is a change from some of the 'old school' surgeons.

My husband has also been down the route of talking to councillers and TD's trying to get a medical card and has also been on to Mary Harney with regards to getting it recognised as a LTI, he got nowhere. And whatever chance there was of suceeding when the money was there, I would think there is zero chance now that the coffers are bare. It really annoys me when you see some of the people who get a medical card - no questions asked - it seems people who work hard and pay taxes despite having a debilitating decease get punished. I have to laugh when we get the old PFO letter saying that we earn too much, as Shane says, by the time you pay your doctor, the chemist and VHI, there isn't much left over. Just another example of how FF have screwed over the average working person. *Sorry, didn't mean to get political*:o

Oh he's so nice All his team is fantastic! He even rang my Mam after the surgery to let her know I was fine

I was thinking that its a losing battle trying to get it Know one seems to want to listen What ever chance we had before, they will use the recession as an excuse now!

Is this your husbands first surgery?

ncmc

Unregistered wrote: »

Oh he's so nice All his team is fantastic! He even rang my Mam after the surgery to let her know I was fine

I was thinking that its a losing battle trying to get it Know one seems to want to listen What ever chance we had before, they will use the recession as an excuse now!

Is this your husbands first surgery?

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!