[tbh]

Originally Posted by lizanne000

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.

[o1s1n]

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 ) 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 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]

Originally Posted by lizanne000

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]

Originally Posted by Wicknight

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]

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

[smccarrick]

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]

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]

Originally Posted by missmatty

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]

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]

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]

Originally Posted by lizanne000

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.

Originally Posted by lizanne000

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]

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!!!

[smccarrick]

Originally Posted by lizanne000

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]

Originally Posted by lizanne000

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]

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.