Crohn's Disease

Stephen P · 28-03-2007 5:29pm #1

Hi,

I suffer with Crohn's disease and was wondering who else on boards has experience with Crohn's?
I was diagnosed in 1997 when I was 16. Suffered very badly with pain and had numerous tests before it was finally diagnosed. Had an operation in 1998 to remove the infected part of the colon. I've been 100% since the operation. I had a Endoscopy examination about 3 weeks ago and tests came back clear. There's currently no trace of Crohn's in my body (Thank You God!), but there is a chance it could come back. I've been off my medication since August 2005 and have had no ill effects.
Is there any support group in the Dublin area for sufferer's of Crohn's?

funsize · 11-04-2007 6:41pm

Hi Stephen,

Just joined boards so only read your post now. Hope you've been clear of Crohn's since. Suffered myself in my youth. I didn't have the surgery, I was treated with steroids instead.
I can't say it has totally cleared up coz I get a bit of pain for a few days about once or twice a year, but nothing I can't handle.

To answer your question, try the Irish Society for Colitis & Crohn's Disease:

http://www.carmichaelcentre.ie/iscc/index.htm

fs

The_Conductor · 13-04-2007 3:12pm

Hi Stephen,

I suffer from Crohn's Disease too.
I was diagnosed around 1993, having been misdiagnosed for about 10 years previous to that. It can be totally debilitating, both from the lack of energy to do anything, and also from the severe pain, anaemia, inability to eat when obstructions occur, problems regulating bodily temperature, side-effects from longterm cortisone use and loads of other things. I had my first surgery in 1994, which resulted in multiple resections, removal of the illeum (most of it, not just the terminal illeum which is normally the first part which gets diseased) and numerous other bits and pieces. I have had surgery 4 times since then, and now control my disease with Imuran (at present I am on a higher than normal dose at 150mg- this differs though with each individual).

When you have the disease under control you can more or less live a fairly normal life (with a few exceptions, such as always being aware of where the nearest bathroom is, bringing spare underwear with you, being very conscious of what you are eating when you go out and generally being aware of what you can and cannot do- and working around those constraints).

The Irish society of Ulcerative Colitis and Crohn's Disease (mentioned in the above post) do hold a series of meetings around the country every year, which are well worth attending, but as far as I know there is no support group per se similar to those for people suffering from other diseases.

Crohn's Disease can be frustrating as hell, but when properly managed, you can learn to live with it and control it, instead of allowing it to control you.

The chronic nature of the disease is difficult to accept, and I do have relapses on occasion- some of which are more difficult to get back under control again (prednisolone plays a large part, as do a bewildering variety of pain killers and anti-inflamatories). Different people find that some foods may trigger a relapse- but food that I may be able to tolerate may be poison to you and vice versa (for example if I eat cornflakes or anything with maize in it I am immediately in trouble (ditto anything high in MSG, so thats most Chinese restraunts out for me)).

If you do find out any information about support groups I would be very interested in attending myself. Alternatively give me a yell by PM anytime and we can exchange horror stories

Hope you keep in good form,

Shane

stephen p wrote:

Hi,

I suffer with Crohn's disease and was wondering who else on boards has experience with Crohn's?
I was diagnosed in 1997 when I was 16. Suffered very badly with pain and had numerous tests before it was finally diagnosed. Had an operation in 1998 to remove the infected part of the colon. I've been 100% since the operation. I had a Endoscopy examination about 3 weeks ago and tests came back clear. There's currently no trace of Crohn's in my body (Thank You God!), but there is a chance it could come back. I've been off my medication since August 2005 and have had no ill effects.
Is there any support group in the Dublin area for sufferer's of Crohn's?

Stephen P · 15-04-2007 1:35pm

Thanks Shane for sharing your experience.

As I was so young when I was diagnosed/operated on I'm not too sure which part of the colon got diseased and what part was removed in the operation. Generally I don't pick and choose what I eat or drink. I'm not a big fan of spicy food like chilli/curry etc... so I'm not sure if those types of food would cause a flare up. I eat healthy food but occasionally have "fatty" food and it doesn't cause any pain. I'm not a big drinker so I don't have to watch what I drink and how much. When I do drink a lot and vomit, blood often comes up so that's something I have to be careful. I'm not sure if the blood is connected to the Crohn's it could be/probably is connected to drinking too much and vomitting too much.

I would be very interested in attending a meeting that the Irish Society of Ulcerative Colitis and Crohn's Disease hold mainly to learn about about the disease and also to meet other people in the same boat as myself. I'll let you know if I hear of anything.

Thanks again for your post and take care.

Stephen

funsize · 16-04-2007 8:13pm

Hi Shane,

Wow, sounds like the condition has affected you a lot more than me. I guess I've been very, very lucky.

I was diagnosed incorrectly too, which almost killed me. I was diagnosed with all sorts of nonsense, and on one occassion my GP sent me home by bus with a bottle of antibiotics, when I was in an acute state of distension, vomiting blood and bile and could barely stand. He finally admitted that he'd never heard of the condition, fortunately for the rest of the city, he retired soon after.

I spent two months in hospital, luckily for me they decided not to operate and pumped me full of prenisolone and salazopyrine. I has a few relapses and flare ups in the following years, and was readmitted four years later, but I've had no real problems to speak of in almost eight years.

To be honest, I ignore most of the advice given, have discontinued my medicine, and have not been to an out patients appointment in over five years. I find that a stress-free lifestyle keeps me free from flare ups, though I do avoid certain foods (bizarrely, coconut and peppers seem to affect me badly) and I make sure that I get a lot of rest, often spending a whole Saturday in bed (... nothing to do with the hangover, of course!!)

I wish you, Stephen, and all other sufferers, could get off as lightly as me.

Keep this thread going, it's nice to have someone to share experiences with.

FS

lizanne000 · 09-08-2007 2:07pm

Hi Lads,
I am also a crohn's disease suffer, who is going through hell at this moment in time!! i am so ill and nothing is really getting done about it!!! I was diagnosed in Jan 2002 and was prescribed Pentasa, which i have been taken, now i have to admitt i don't always take, as i feel that they really are not doing anything for me! I have been given course of Steroids as well. But my biggest complaint is, i suffer with a really severe pain in my hip and all down my right leg with it. I have complained about this since day one and i have only recently had a Dexa scan done to be done, i am borderline osterperosis in my left hip, the one that does not affect me at all?????? i have had X-Ray's done and nothing has come back??? If anyone else suffers with this could you please please please help me and reply to this, I do find this pain to be more so when i have a flare up and get stressed, but being upset and depressed about my health is not helping at the moment, Last night i saw every minute tick over on the clock, i got no sleep! Dossed and turned the whole night! I have taken so many pain killers that i have become immune to them! this is not good and i really need help and info if anyone else suffers this!!!

Looking forward to your replies

Liz

The_Conductor · 09-08-2007 3:24pm

Hi Liz,

I was on Pentasa for a few years, but found it totally useless. My consultant in St. Vincents decided to try me on immune suppressants, I'm now taking Imuran, and have found it to be far better. I still do have the odd relapse, like I'm having at the moment, but they are far more infrequent and less severe.

I too, suffer from borderline osterperosis (in my back rather than legs) and possibly beginnings of rheumatoid artritis in my wrists (not good for someone who is only 33.......) I was prescribed Ideos- which is Calcium with Vitamin K, to try to help this. In aditition, as I'm off work with the Crohn's attack at the moment- I was over with my GP on Wednesday who noticed I was limping badly and sent me to James Connolly for a scan on my left leg as a precaution. It showed up blood clots- just what I need like a hole in the head....... So- I can Warfarin to my list of medications for the immediate future........

I can't really offer you any advice, other than keep your head up, the cortisone will kick in after a few days- and when it does, try to take things easy. Its very easy to try to do everything you missed in the past few days, once the steroids kick in- avoid this though- its not wrecking yourself over.

Re: Pentasa- do have a word with your consultant, I think that they are getting a little more adventurous with their treatments these days. I know the side effects of the very strong immune suppresants can outway their benefits in some people's eyes, but personally- having a couple of hassle free months every year for the past 3 years has far outweighted the cost in my eyes. You do need to get bloods done regularly- as your white cell count can tumble- and also you have to be very careful about getting flu jabs and keeping away from people with viruses or infections- as you simply would not be able to fight them off (the bugs that is

)

Do make an early appointment with your consultant- it sounds as though a change of medication may be helpful to you. Keep your head up.

lizanne000 · 09-08-2007 4:31pm

Hi Thank you for your reply!
Is your consultant in Vincents private or public??? And what is his or her name???
I am in Tallaght Hosp at the moment!!! I was on Imuran before and got taken off them for some reason that I am not sure of!!! I have been prescribed Ideos as well, do you find them good??? Were you in pain before they found that??

Blood clots do not sound good!! I can not straighten my body at the moment and can not put my right foot to the ground as it is putting pressure on my hip and lower back!! I also have 2 lumps on my left ankle and 2 lumps on my right ankle?? Ever experience them??? I have had an X-Ray on them but nothing came up.

Cortisone? I was never on this or do I know anything about this? Plus I have no steroids to take at the moment! I am going back to my consultant on the 12.9.07 which feels a lifetime away to me.
I wont get one any earlier because I have tried that many times before and told no, they have nothing!!!

I am at the end of the road with it at the moment, I feel worn out and so shattered with worry about myself!!!

The_Conductor · 09-08-2007 4:58pm

Liz- if you're in the middle of an attack- go to your GP and get a prescription for steroids- you need them. There is no point in trying to hang on until mid September to see your consultant- or better still- give your consultant a call, they are normally very good with emergency appointments if you are in the middle of an attack.

I know very well what its like to be awake all night- willing day to break, so that you're not there in the dark, but not having the energy to do anything...... Don't imagine that you have to keep doing this- go to your doc!!!

My consultant is in St. Vincents Private- its Prof. Dermot O'Donoghue. I can't recommend him highly enough. I have been around the place though- Parnell Keeling and a lot of other consultants over the years, before I had the good fortune to be referred to Prof. O'Donoghue.

I wasn't in pain from back per se- when I was diagnosed with osteoporosis. I have been taking steroids on and off for about 15 years at this stage- it was a routine scan (well routine, but the first one I had ever had.....) that showed up the massive reduction in bone density (the same as your Dexa scan). I had problems with broken bones prior to that (including nasty spiral fractures). Luckily I heal quickly.

Cortisone is just the type of steroids I take- instead of taking the generic steroids that you tend to get prescribed, if you suffer from Crohn's its far better to take "Enteric Coated Prednisolone" which is far easier to absorb in the upper digestive tract (most people with Crohn's have big problems absorbing anything much further down). Its also doesn't tend to tear the lining out of your stomach, which can be a problem with some of the other steroids.

If you're not able to get an appointment to see your consultant sooner- at very least get your GP to prescribe cortisone for you as a stop gap measure- I'd go insane if I had to wait a month to see my consultant while in the middle of an attack...... Please please go to your GP!!!

CathyMoran · 09-08-2007 5:02pm

smccarrick wrote:

My consultant is in St. Vincents Private- its Prof. Dermot O'Donoghue. I can't recommend him highly enough. I have been around the place though- Parnell Keeling and a lot of other consultants over the years, before I had the good fortune to be referred to Prof. O'Donoghue.

Just to second what Shane said about O'Donoghue, he was the person who diagnosed me with oesophageal cancer when no one else would listen to me, I owe my life to him.

lizanne000 · 09-08-2007 5:22pm

Thanks for your help, you have cheered me up somewhat,
I have spoken to my GP and i was crying on the phone to her the other day saying i feel awful and what can we do and she said, Elizabeth i have 4 other calls to make, what is it you want???? ooh i lost it with her, My mam called her this morning asking for a prescription to be left out for me and she never did it, and today they are on a half day so another night of staring at the beautiful walls of my room! i reckon my partner is going to end up sleeping in the shed hehe!!!

I have to say i think i need a second opinion on this!!!! so i might get in touch with vincents!! and organise a new GP

CathyMoran · 09-08-2007 5:28pm

There is never any harm in getting a second opinion from another GP, I was laughed at when I said to my then GP that I had oesophageal cancer. The doctor in St. Vincent's is brilliant, I am just not sure if he is taking new patients but there is no harm in trying. I hope that you get better soon.

The_Conductor · 09-08-2007 7:07pm

Liz- seriously pester the living hell out of the GP and get the prescription out of her. Its no fun being awake the whole time in pain- when all it takes is a simple couple of tablets to aleviate the sympthoms. Its ridiculous to be honest. I think your GP is not being fair to you at all. Shane

lizanne000 · 10-08-2007 10:22am

hi Shane and Cathy,
I had a good sleep last night and do feel better from it, and i am going to my doc with my mam and dad on Monday evening, i know i need to fight this on my own but i can't i get too upset and that causing stress, so my mam and dad are going to go and have a heart to heart with doc, i took pain killers this mornig and they seem to be doing the job, a bit but not taking away the discomfort.

The_Conductor · 10-08-2007 10:53am

Hi Liz-

Glad to hear it.
The big over the weekend is to make sure you don't get dehydrated- so make sure that you sip lots of water/sugar tea constantly. Sip it though- don't try to drink it too quickly.

The painkillers do help- but they are only masking the sympthoms, not aleviating them.

Best wishes,

Shane

tbh · 10-08-2007 11:04am

lizanne000 wrote:

Thanks for your help, you have cheered me up somewhat,
I have spoken to my GP and i was crying on the phone to her the other day saying i feel awful and what can we do and she said, i have 4 other calls to make, what is it you want????

That's a disgrace. No matter how busy your GP is, there's no excuse for that. :mad:

o1s1n · 10-08-2007 11:15am

Hi Lizanne. Sorry to hear you're going through so much trouble at the moment. There's a Crohn's support group in Dublin. They have meet ups. I went along to a couple a while back. Very informative.

I was diagnosed with Crohn's myself a couple of years ago. Took them a while to diagnose it too. At one point I was an hour away from having my appendix removed!

Was on a ridiculously large daily cocktail of medication. (Pentasa, Immuran, steroids), but none of them helped whatsoever. I really have never experienced pain like that in my life. On a very regular basis too. Over a year I stayed over in hospital about 4 or 5 different times. Probably a month in total. Couldn't eat at all. Ended up just drinking ensure plus and on a drip. Weight dropped off me.

Finally moved over from Michaels in Dun Loaghaire to Vincents as they just couldn't seem to help.

I'm now under O'Donoghue myself. (was only in with him last week actually). He's absolutely brilliant. He put me forward for surgery as soon as he saw me. I had a foot of my large bowel removed last September. (turns out my intestines had inflamed so much that a huge abscess had formed and was blocking them almost totally)
Was out of hospital after a week and a half. Almost a year later now and I've been perfectly fine since. Not one single twinge of pain whatsoever. Can eat anything. Put all the weight back on (and some extra too :eek:) I actually feel like there's nothing wrong with me. I had gotten so used to chronic pain that I'd actually forgotten what it was like to feel well. The novelty still hasn't worn off

Sorry, didn't mean to go into my life story there :eek: Just wanted to let you know that it does get better. Don't give up hope! If they can sort out my Crohn's the way they did, then they should be able to help anyone.

Zombrex · 10-08-2007 11:16am

lizanne000 wrote:

hi Shane and Cathy,
I had a good sleep last night and do feel better from it, and i am going to my doc with my mam and dad on Monday evening, i know i need to fight this on my own but i can't i get too upset and that causing stress, so my mam and dad are going to go and have a heart to heart with doc, i took pain killers this mornig and they seem to be doing the job, a bit but not taking away the discomfort.

Hi Lizanne

I suffer from Crohn's. The worst bit is very bad pain in my hips that I used to get about once a month that would last for a week or more.

I'm not sure if your doctor has told you but you should avoid any Non-Steroidal Anti-Inflammatory (NSAI) pain killers if you are taking them, like Asprin or Aulin. (if your GP knows you have Crohn's you probably aren't)

These NSAI drugs make Crohn's worse, but are often prescribed for Crohn's diesase like symptons by GPs who don't realise you have Crohn's. I was given Aulin from my GP and was taking it for about a year when ever my hip problem flared up, until they figured out I had Crohn's and told me not to take it any more.

My consultant in Vincents (a Prof. Hegarty) has placed me on Imuran, but I found myself that taking Omega 3 tablets when I feel my hip problem coming on does wonders for stopping the inflammation coming on.

I take two Omega 3 tablets every day all the time (one in the morning, one at night) and if I feel an episode coming on I take 4 a day. Before, even on Imuran I was still getting the hip problem every few months. But since I started taking Omega 3 tablets I have never had the hip problem develop beyond mild twinge (before I would be bed ridden for a week).

I know the Crohn's disease is still there of course, but the Omega 3 seems to have a dramatic effect on stopping it inflaming my joints.

I don't know if it will work for everyone but it has totally turned my disease around and I cannot recommend it enough.

I also take Aloe Vera in liquid form which seems to help with stomach problems such as diarrhea and cramps.

So I would strongly recommend anyone with Crohn's disease starts taking Omega 3 (as well as Aloe Vera). It really has done wonders for me.

funsize · 10-08-2007 1:15pm

Wicknight wrote:

I'm not sure if your doctor has told you but you should avoid any Non-Steroidal Anti-Inflammatory (NSAI) pain killers if you are taking them, like Asprin or Aulin. (if your GP knows you have Crohn's you probably aren't)

These NSAI drugs make Crohn's worse, but are often prescribed for Crohn's diesase like symptons by GPs who don't realise you have Crohn's. I was given Aulin from my GP and was taking it for about a year when ever my hip problem flared up, until they figured out I had Crohn's and told me not to take it any more.

It really is shocking how ill-informed our doctors are about Crohn's. I've had Crohn's for nearly 20 years (although a very mild case) but nobody ever - EVER - told me to stay away from NSAIs. Once, my consultant actually recommended that aspirin might help to reduce the inflammation in my bowels.

I can't state this strongly enough - DO NOT take aspirin. I made the mistake of taking aspirin (I think it was Asprin Extra) with my usual prednisolone during a flare up and I gave myself a gastric ulcer. Last thing I needed was a gastric ulcer!!

I hear that Panadol is easier on the stomach, but check with your GP (who should know your full medical history and the other drugs you are on) and maybe even double-check with your consultant.

As Shane said earlier - don't substitute pain killers for steroids. Pain killers only mask the pain, steroids will actually help reduce the flare-up and allow your body to get back to normal.

Hope you're feeling better soon - you can beat this with the right treatment and a few lifestyle changes.

lizanne000 · 10-08-2007 3:04pm

Hi,
I am so annoyed and amazed by the above comments i have been given DICLAC (NSAI) to get for the last 3 months i have been extremely sick, vomiting severe diarrhea, no appetiete, so down and depressed and no engery to move out of bed, I really thought I was going mad, and this was the end of it I am a gonner, just to find out my GP has given me a tablet to take away the pain in my hip by making my life a lot worse!!! I really do not understand how they get away with this, this is our lives they are messing with. I work in the motor industry and really feel that if I was looking after a customer's broken car the way they are with my health I would not be very successful in my job!!!!

I am so upset that I had to log on to a website to find out what is wrong with me. But I am delighted that you guys could all help me and I am amazed with the feed back from this, it is also great to speak to people who know how you feel, cos sometimes I wish I could explain to someone how I feel but its so difficult, I do say to my boyfriend I wish I could give you the pain for 5mins just so you know what I am living with.

It is also interesting to know that getting the surgery done, really helps 01S1N are you still on medication after having the surgery or complete free from it all?

But I really appreciate your help and advice!!!

I am going to the chemist on the way home to get a big jar of OMEGA 3 and ALOE VERA

The_Conductor · 10-08-2007 3:18pm

Hi Liz,

The surgery removes that portion of the intestinal tract that is causing you the immediate problem, but it does not cure or solve the Crohn's problem (unlike Ulcerative Colitis- where if they have surgery they are cured). You are very likely to have a recurrence of Crohn's after the surgery- in general it tends to recur where the resection occurred. The time it takes for this to happen varies wildly- it can be months, years or perhaps never. I've had surgery 4 times for my Crohn's so far (and am in the middle of yet another flareup- so I am perhaps not exactly a happy camper.....

Re: GPs- for the most part they are astoundingly ill informed about Crohn's disease, its sympthoms and how it affects the lives of people. I was misdiagnosed for over 10 years- towards the end a certain GP tried to tell me it was entirely psychsomathic and that I needed psychiatric help that I was delibertly starving myself (at that stage I was 6 stone- now I'm a rather heftier 13.5 stone!).

Unfortunately- unlike people who suffer from other chronic diseases and illnesses- Crohn's sufferers do tend to be misdiagnosed for a lot longer than other patients, given the wrong treatments even when correctly diagnosed, have trouble with work and social commitments, generally get put through the mill and have to fend for ourselves a lot more than most.

Your GP probably didn't know any better when she prescribed the NSAIs to you- but if she is not willing to lookup what your condition is and how to treat it- well, she shouldn't be your GP any longer.

There are some really really good people out there- like Hegarty and O'Donoghue in St. Vincents- but they are snowed under, precisely because of how good they are.

Hang on in there,

Shane

missmatty · 10-08-2007 3:19pm

Can I second that about the Aloe Vera, it's very good.

Lizanne, if your GP doesn't sort you out on Monday (good luck btw) get a second opinion and referral onwards. Only for my mum got a second and third opinion in 2003 about a breast lump she would be dead today. As it is, she's dealing with re-occurrances.

Also my heart goes out to all of you dealing with Crohn's. My mum's dad died in 2002 of complications after dealing with it for 10 years, I remember well all the problems and frustrations and pain involved. I have ibs so i have a very small idea of how hard it it. Best wishes and hugs

CathyMoran · 10-08-2007 3:26pm

missmatty wrote:

Lizanne, if your GP doesn't sort you out on Monday (good luck btw) get a second opinion and referral onwards. Only for my mum got a second and third opinion in 2003 about a breast lump she would be dead today. As it is, she's dealing with re-occurrances.

I will second about getting a second opinion. I would be dead now had I not insisted that my doctor refer me to O'Donoghue about my oesophageal cancer.

I also had severe symptoms of vomiting and nausea when I was diagnosed, my husband having crohns was the only person who could understand me, my heart goes out to all crohns sufferers.

00sully · 10-08-2007 3:40pm

forget GP's they no nada about this area. You need to see a specialist and have the proper procedures carried out - bloods, colonoscopy (extremely unpleasant but necessary)

I've had chrons for 7 years now, every year in hospital on massive amount of steroid drips. once I was in for 2 months solid.

I really feel your pain, the only thing that helped me after the first 5 years was imuran, since then i've had only very mild flair ups and no hospitalisations.

May try that OMEGA stuff (altho the AMOUNT of natural supplements i have tried is ridiculous - with some making it markedly worse) - got some osteo goin on too from all the damn steroids

anywho, it is liveable if you can get a handle on it for any length of time...I think once you do, the longer you go then the longer you will keep going cuz you eventually kind of forget about it if you can keep stress free

(errr if that makes any sense!)

lizanne000 · 10-08-2007 3:59pm

Can I ask all of you a question?
When your GP gets results or letters from your Consultant, do they let you know about it if it is of any interest to your health??

Also when you are in remission how do you feel?

One last question,
What medication are you on and how much of it???

Zombrex · 10-08-2007 4:24pm

lizanne000 wrote:

Hi,
I am so annoyed and amazed by the above comments i have been given DICLAC (NSAI) to get for the last 3 months i have been extremely sick, vomiting severe diarrhea, no appetiete, so down and depressed and no engery to move out of bed

I've no idea why your GP thought to put you on Diciofenac, since it is well known that Crohn's is a contraindication to it (increase harmful effects)

Are you seeing a specialists? If not you should be, and you need to be asking him what you should be taking.

lizanne000 wrote:

It is also interesting to know that getting the surgery done, really helps 01S1N are you still on medication after having the surgery or complete free from it all?

Talk to your consultant about it. You might find that once you are off the NSAI and given the Omega 3/Aloe Vera a try, along with the Imuran, your Crohn's is not nearly as bad. Or the consultant might suggest surgery as the best option.

Also there is some thinking that Crohn's is a form of allergic reaction (this is just one theory), as often cutting out something like milk or wheat in your diet can greatly help. Experiment with cutting out food that is known to cause some people trouble.

lizanne000 · 10-08-2007 5:13pm

yea my friend has suggested what i do is keep a food diary and how i feel after it!!! i will do that over the weekend!!!
I have a party to go to to tomorrow night and i really wish i could enjoy it but i know i will be sitting there going oh no thanks no i wont have that, ill just have water, hehe, so boring!!!

The_Conductor · 10-08-2007 6:15pm

lizanne000 wrote:

yea my friend has suggested what i do is keep a food diary and how i feel after it!!! i will do that over the weekend!!!
I have a party to go to to tomorrow night and i really wish i could enjoy it but i know i will be sitting there going oh no thanks no i wont have that, ill just have water, hehe, so boring!!!

Bring a bottle of Ribena or something to flavour the water. Also- try not to stay out too late (I know easier said than done), but rest, and lots of it, helps enormously.

When my GP gets results of tests, or a letter from the consultant- my GPs secretary will always ring me immediately and let me know what the results/contents of letter are, and what the meaning of it is. I think this is very decent and reasonable of my GP.

When I'm in remission- I actually sleep at night, and do not wander around work during the day with a low grade temperature the whole time. I loose a bit of weight- as you do have water retention when you're on cortisone. But in general, I have a lot more energy and the thought of doing things- little things, doesn't fill me with a sense of dread.

Re: what medication am I on- I should point out first of all, that Crohn's isn't my only complaint at the moment, so this will not be applicable to you...... but here goes:

Imuran 300Mg (once in the morning)
Neoclarityn 30Mg x twice daily
Immodium 2 tablets as required
Deltacortil (currently on 30Mg on a reducing scale)
Ideos (supposed to be taking 4 a day- I'm not that good at taking it though)
Panadol (to lower temperature, and for pain relief)
Brufen (Ibuprofen) 600Mg x 3 times daily
Neocytamen (by injection once every 2 weeks)
Buscopan (2 before meals)
Stematil (1 every hour before meals)

When I finish my dose of deltacortil- I will go back onto a daily 9Mg of Budenofalk, which is specially for Crohn's sufferers.

From next week onwards I'll also be on something for dissolving blood clots too

You should see the little bag of medication that I bring around with me!

o1s1n · 11-08-2007 8:19am

lizanne000 wrote:

Hi,

It is also interesting to know that getting the surgery done, really helps 01S1N are you still on medication after having the surgery or complete free from it all?

But I really appreciate your help and advice!!!

Since the surgery I've been completely free of all medication. I had an appointment two weeks ago in which a new doctor told me I should probably be on some. I went in again last week and they reckon the meds would do me more harm than good. Especially as I'm feeling 100% fine. So I'm still staying off. (yay!)

I have however been given a prescription for a vitamin b12 shot every two months. If that's all I have to get/take for the forseeable future I'll be over the moon.

I'm not promoting surgery by the way! Before hand I was extremely against it. Had to be dragged by the hair into the hospital kicking and screaming. It worked so well for me as the major problem I was having was the abscess obstructing my intestines. Pretty soon it would have blocked them up completely. So It had to be done.

It may still come back though. Actually chances are it definitely will. If it gets as bad as it did before, I'll have no problems with going straight into the hospital to have it removed again. (As long as we're talking about 8-10 year intervals or so here..I don't want to be running out of intestines)

MacXP_Irl · 11-08-2007 9:34pm

Hey all I'm a Crohns sufferer too, I've only had the one flare up but because of misdiagnosis for the bones of 6 months I wound up in hospital and had surgery to have my cecum, appendix and part of my ilium removed. Its a really long story so I'll just paste this off my bebo page if you dont mind...

I was diagnosed with Crohn's Disease in January of this year after 8 or 9 months of pain, weight loss and misdiagnosis, It's the reason that I've disappeared off the face of the earth for the past 6 months or so in case people were wondering.
AS I alluded to above, this all came to a head in January when I was admitted to hospital in pain and put on a high dose of steroids amongst other wonderful concoctions. It turns out that I had a stricture in my small intestine and it was heavily inflamed. I was sent on my merry way after a fortnight of observation and told that I was making progress.
A few weeks later I went back to A&E in even more pain, resting heart rate of 125bpm, I was readmitted to hospital. The pain got worse & worse & worse some more, I've never experienced anything like it, & me being the stubborn person I am refused to black out! I was rushed up to theatre for emergency surgery in the middle of the night.
When I work up I had all sorts of tubes, drains and lines coming in and out of me. I was fed through a central line in my neck for quite a while, Louise, Brian & Lisa saw it, they'll tell you it was pretty disgusting. I was doped up on morphine in the high dependency unit for a few blurry days. I had part of my small intestine, ilium & appendix removed in 1 swoop.
Post opp recovery was (still is) difficult, very sore, and full of complications. When they tried putting me back on solid foods my body completely rejected it. I had to have a nasal gastric tube put down for a few days to remove the contents of my stomach. Then my wound opened when the staples removed & all sorts of goo came out, giant 2nd bellybutton anyone?. That was rushed to the lab to make sure it wasn't MRSA, turns out it was e.coli from my own gut. The wound was left open for a few days & packed with antiseptic & gauze until it dried up. Then it was off to theatre under local anaesthetic to have that closed up, freaking weird experience being sewn up having a chat with the surgeon. At this point I was anaemic so had to have a few units of blood pumped in. Then to top that off I developed strange pains in my lungs, it was a toss up between a blood clot and an infection. Off for more tests, the CT revealed infection so not so bad, lesser of 2 evils.
So a month and 2 days after being admitted for the 2nd time I was discharged. I've got to get my wound dressed daily and I'm still taking a bucket load of drugs and supplements, minor inconveniences in the grand scheme of things. Its only been 2 weeks but I think I'm doing much better, I've managed to put on 3 1/2 pounds (almost 9st now woohoo), now I just hope that this doesn't recur any time soon!

since then I'm up to over 10.5 stone, I get vitamin b12 shots every 3 months and take questran 4 times a day. I was on pentasa but I had to stop because it gave me incredible insomnia (I'm one of the lucky 1% that happens to). I'm also off dietary suppliments. I'm back for more tests mid September, fingers crossed for the all clear. I've found that I can eat almost anything so far though red meat, especially minced beef causes incredible gas hehe. Thangs arent 100% but I dont know if thats from the surgery all those months ago or Crohns creeping back!

Thanks for listening. Oh if any one is from the mid west I cant recommend Doctor Skelly in the Limerick regional hospital highly enough, great gastro, straight to the point though. If you wind up having surgery Dr Waldron and his team are great too. Also Ward 1c is the place to be, recently refurbished.

lizanne000 · 13-08-2007 11:42am

Hello everyone,
Happy Monday! Well I didn’t have a good weekend at all? Have not eaten something proper since Thursday,
I can not keep anything down, everything I eat is just causing too much pain and I need to get it back up.
I did steroids, Entocort??? Taking them since Saturday lunch time, luckily I had them in the Medication press,
I am in great form once I don’t eat!!! I am ringing my doc today to get a earlies appointment with my consultant, as the last time I was in the Hosp, I had a Small Bowel Follow through done and I was told I have strictures in my bowel and I need to find out how we get passed that, as it must be what the problem with not being able to eat!!! Has anyone had this before??? And how was it dealt with???

I am going to give my consultant another go but I do not get sorted this time I am going elsewhere!!!

@ WICKNIGHT, I got the Omega 3 it has really helped with the hip pain, there is a slight pain but nothing major and I can walk!! Its great! Still to find the Aloe Vera liquid, but I will get it once I find it, thanks for the advice, you’re a life saver!!!

MacXP_Irl · 13-08-2007 12:13pm

sounds amazingly familiar, I wound up at 8.5 stone at my worst.
Small bowel follow through, mmm barium! I'd one of those done in the "early days" and it turned up a stricture too. Thats just a narrowing of the intestine due to the disease. There are a few scenarios as far as I can see.
1) the stricture is recent caused by a Crohns flare and inflamation of the tissue; in which case they'll tackle it medically and hope the inflamation and the swelling goes down.
2) the stricture is old; the tissue is scarred and inelastic so depending on location they can try to use an angioplastie balloon to stretch it or they will remove the section of it surgically.
Depending on the strictures location you could have an ostomie bag for a while to allow things to heal. In my case they took out the nasty bit and plumbed me back up in the one procedure.

If you have any questions let me know.

lizanne000 · 13-08-2007 12:44pm

Sounds scary, wow i hope its not that bad!!!
I am really sick of it though, just had a slice of toast and i am in bits again!!!

What foods do people find affect them???

MacXP_Irl · 13-08-2007 1:43pm

yeah it can be scary, but dont worry about it too much, its out of your hands at this point. Just keep asking the doctors questions!

how long have you been in pain? Weeks, months?

As for food, everyone is different. Post surgery I really only have problems with minced meats, so spag bol, lasagne, burgers & stuff can be difficult.

lizanne000 · 13-08-2007 2:05pm

I have been on well for a long time now, but the severe pain and not being able to eat properly about a month and a half!!
So tired of it and really wish I would get it sorted.

I find veg. Fruit and mushrooms are a big massive no no!!! Spicy food, but at the moment I can not eat anything, that is not affecting me. I just had a chicken cuppa soup now and the pain is already getting bad!!!

Ooh and Mints and fizzy drinks I can not drink either!!!

lizanne000 · 13-08-2007 5:24pm

Finally something is happening.............. I have an appointment with Prof. O'Donoghue in the Mater Private on the 25.09.07, Thank God!! i will just sit by and wait for this now and chase everywhere for my files and results of tests!!

Just thought i would let you all know!!!

o1s1n · 13-08-2007 5:33pm

lizanne000 wrote:

Finally something is happening.............. I have an appointment with Prof. O'Donoghue in the Mater Private on the 25.09.07, Thank God!! i will just sit by and wait for this now and chase everywhere for my files and results of tests!!

Just thought i would let you all know!!!

Good luck!

CathyMoran · 13-08-2007 6:13pm

That is great news, he is a brilliant man.

The_Conductor · 13-08-2007 6:17pm

lizanne000 wrote:

Finally something is happening.............. I have an appointment with Prof. O'Donoghue in the Mater Private on the 25.09.07, Thank God!! i will just sit by and wait for this now and chase everywhere for my files and results of tests!!

Just thought i would let you all know!!!

Well done Liz,

Prof. O'Donoghue is absolutely brilliant- you will be well taken care of.
Sorry to hear that your weekend didn't go very well- make sure that you drink plenty of fluids. It might be an idea to take some food supplements (I know some of them taste ghastly, but they are good for you......) Fortisip have nice new fruit juices that taste pretty good (and you can get them on the E85 a month scheme).

Hang on in there,

Shane

lizanne000 · 14-08-2007 8:55am

Thanks everyone, I got to have my dinner last night, was not a big dinner but it was something, Hopefully things are starting to pick up, only thing is as i have not been eating i have no energy at all, i am in work now but think ill be asleep in a few mins!!! zzzzzzzzzzzzzzzzz

Thanks again for your help, it really has helped and its great to speak to people that understand!!!

MacXP_Irl · 16-08-2007 11:47am

good luck Liz, you might want to consider something like Ensure Plus HP drinks (ask your doctor) form the chemist to keep you ticking over until they decide on a treatment. Strawberry, bananna, vanilla arent so bad.

The_Conductor · 16-08-2007 12:13pm

MacXP_Irl wrote:

good luck Liz, you might want to consider something like Ensure Plus HP drinks (ask your doctor) form the chemist to keep you ticking over until they decide on a treatment. Strawberry, bananna, vanilla arent so bad.

There is also the Fortisip fortified fruit juices- the applejuice one is quite tasty, if slightly viscous..... Do get a prescription from your GP for these- then you can pick them up on the 85 Euro a month thingy.

You know I think that we should start some sort of a petition to get Crohn's medications included on the longterm illness scheme- the 85 a month is expensive, especially when you don't have much in the way of a disposable income.......

MacXP_Irl · 16-08-2007 3:28pm

I know, I was shocked when I was diagnosed and then found out it wasnt. Thankfully I had the drugs payment scheme card because otherwise that first months bill of medication would have crippled me!

o1s1n · 17-08-2007 1:11am

smccarrick wrote:

You know I think that we should start some sort of a petition to get Crohn's medications included on the longterm illness scheme- the 85 a month is expensive, especially when you don't have much in the way of a disposable income.......

I heard somewhere (Cant quite remember where) that there has been some talk of this happening.

I really dont understand why it wouldnt be part of the scheme. I mean it is a long term illness, pretty severe for some. Wheres the problem?

The_Conductor · 17-08-2007 7:08am

o1s1n wrote:

I heard somewhere (Cant quite remember where) that there has been some talk of this happening.

I really dont understand why it wouldnt be part of the scheme. I mean it is a long term illness, pretty severe for some. Wheres the problem?

The problem is finances- and the simple fact that unlike the other long term illnesses- Crohn's Disease doesn't have a good group of people lobbying on our behalf (unlike Diabetes and other serious conditions). Certainly there are helpful groups- but they tend to be groups of sufferers, who by the nature of their conditions, don't tend to have a lot of spare energy to divert elsewhere..... It really by all rights should be in the long term illness scheme of course though......

MacXP_Irl · 17-08-2007 12:34pm

what about the http://www.iscc.ie/ they had a talk about Crohns & UC down in Limerick last year I think, informative.

who would we lobby about getting it on the list though, any one have any media/political connections?

The_Conductor · 17-08-2007 6:06pm

MacXP_Irl wrote:

what about the http://www.iscc.ie/ they had a talk about Crohns & UC down in Limerick last year I think, informative.

who would we lobby about getting it on the list though, any one have any media/political connections?

I'm not allowed to make representations to politicians unfortunately

smoochie · 24-08-2007 9:50pm

Hi All

I too have had Crohns disease since I was about 17. I was only diagnosed properly (after years of pain and suffering) when I was 25. At that stage things had gotton so bad that I had a stricture (narrowing of the bowel) and everytime I ate I would be buckled in pain. I ended up not eating at all as it was easier. Eventually I was diagnosed by the Gastro Team in St Vincents Hospital, Mr Mulcahy and Prof Donoghue were exceptional. They really listened and within a short few weeks I was feeking a little better through Steroid use. In my case unfortunately I had to have a right Hemicolectomy-part of the small bowel removed. It was the best decision I made. I had 6-7 years of being nearly symptom free. However you are never fully free from this illness and to my upset I am now starting treatment all over again as I have quite a serious flare up going on since I had my son in January. I dont know why this has happened now. Its the worst time for me as I have had joint pain and muscle weaknesss so have had big problems in looking after my son, cant lift him etc sometimes. I am looking into getting some home help. The other issue is that I am due back to work in 4 weeks and I dont think Ill be able for it. Treatment-wise I have been given Imuran, I was only on it 3 weeks and I ended up in hospital with a very serious infection. My liver function tests also have been highly abnormal as well as other blood tests. I have been taken off Imuran and now put on Pentasa. To make things worse, the acting doctor tells me today that he 'doubts it will work', and that I will probably have to go in the iv of INFLEXIMAB. I am willing to undergo any treatment to get well again, but am heartbroken that all this is back again. All I want is a normal everyday life where I can give my Son the attention he needs and deserves. Just wanted to let ye know that there are lots of people out there just like us. Here's hoping that research finds a cure for this curse of an illness! Good luck to all of you, Ill keep in touch if any of you have any questions or need any advice at all.
Take Care

Handrick · 26-08-2007 3:00pm

Hey all,

Got diagnosed with Crohns back in May after being misdiagnosed for a few months which really messed me up.. was on Prednisonale which I am coming off now, though the docs did not want me to...(that drug really messed my head up along with various other side affects)... also on Pentasa which I hope to get off soon to... much to my docs annoyance...lol...:p

Have been trying to deal with this with diet instead of drugs and with some success... of course doctors say there is no connection between diet and something wrong with your digestive system.... ehhh...right!:mad:

personally I don't think doctors have a clue what they are doing.. just the usual "here's some drugs for a quick fix"... which sometimes you need as you end up in such a bad way from the incompetent medical profession.:eek:

here are some interesting articles...

http://www.medicalnewstoday.com/articles/76578.php

http://www.news.cornell.edu/stories/Aug07/crohnsRN.kr.html

also check out this site www.scdiet.org

Best of luck to you all... hope we can all get pain free for good!!

Andrew:D

MacXP_Irl · 26-08-2007 9:10pm

I was initiall on Pred before, it gave me terrible moodswings. The secont time I was on it I broke out in acne. I was on pentasa for a good few months too, but that gave me insomnia! I usually get every sideeffect a drug has. For anyone new to the disease they might want to check out here:
http://hx.o3world.com/index.cfm?selectedVideo=12

@smoochie, there is a new drug on the market called humira which operates on a similar principle to infliximab but its made with human rather than mouse protein. Its also home injectable as far as I know. It might be worth asking your gastro about.

inchydoney · 10-09-2007 1:51pm

hi.have not posted in a while. may i suugest people have a look at http://www.breakingtheviciouscycle.info/index.htm. i have researched this disease for the last 4 years and tried absolutely everything. i have ulcerative colitis.the theory is that you do not put in foods that require further digestion and put work on your body - .i.e complex carbs that need to be broken down but cant be. anyway i started it 2 months ago and was the best i ever have been with minimal meds.unfortunately i have flared again afetr some alcohol and other minor slip ups but i am now trying to get back on track.if this doesnt work for me i will get the surgery - have been dead against it but that is all that is left for me now. alll meds traied - off steroids since junes.oftern you may think the uc or chrons is giving you muscle / joint problem but many of these drugs have these side effects.

St Vincents are great. Mulcahy and O DOnoghue and the nurses in particular. all doctors will say diet has nothing to do with it - but you know your body best.food may not cause it but changing it so that it does not further irritate your gut is worth doing.the doctors want you to get well and have been very supportive of me trying all these alternatives - and i mean i have tried everything - even helminth therapy from germany.if i had known about this diet i would have avoided alot of meds since then - but then again i dont think people will try it until they run out of options. it is hard - you have to be very disciplined.when one is ina flare it is very difficult to keep things in. i find the chhickn soup with vegatable juices added is best - so far so good anyway. you have to prepare your food.

defintely avoid sugar, bread, pasta, starches eg in potatoes and parsnip.milk.keep to meet and vergatiables- old style eating. it si hard but once your gut settles, you get used to it. its how our grandparents ate and the diet is very nutricious.
Anyway best of luck with it - drop me a line if anyone needs to know where to source things.

i too think it should be covered under lon term illness. i even wrote to seanmus brenna td before the election and he was lookng into it. too late now - they are back in poser

bets of luck to everyone and to your partners - it aint easy being them either
inchydoney

Crohn's Disease

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