Crohn's Disease

Oasis678

Hi Guys sorry if this is off topic but i had a flare up of crohns recently and now have a bad outbreak of spots/acne on my face. i often get occasional spots but these are very bad. i seem to remeber after a previous outbreak i broke out in spots as well. I think it may be due to taking the oral steroids. has anyone else experienced this problem. i seem to get spots re occurring in the same couple of places all the time.
i have been to gp several times over the years but they just give me an antibiotic which clears them up for a while but they always come back. I am reluctant to take another antibiotic as i dont want to irritate my insides again. Thanks for any help.its great to see that there is a group for this condition and thankks to everyone who contributed to this post. Its good to see im not the only one with health problems.

Razleavy

Oasis678 wrote: »

Hi Guys sorry if this is off topic but i had a flare up of crohns recently and now have a bad outbreak of spots/acne on my face. i often get occasional spots but these are very bad. i seem to remeber after a previous outbreak i broke out in spots as well. I think it may be due to taking the oral steroids. has anyone else experienced this problem. i seem to get spots re occurring in the same couple of places all the time.
i have been to gp several times over the years but they just give me an antibiotic which clears them up for a while but they always come back. I am reluctant to take another antibiotic as i dont want to irritate my insides again. Thanks for any help.its great to see that there is a group for this condition and thankks to everyone who contributed to this post. Its good to see im not the only one with health problems.

Have Ulcerative Colitis myself and the Prednisolone steriods have given me some pretty bad acne.

Dice Man

Hi everyone.
Last summer, I came down with consistent tummy trouble (change in bowel habits, loss of appetite, gasiness etc) and got sent away by the docor with Irritible Bowel and it kind of eased but never went away completely.
For the past month or so, I've had pain and blood when going to the toilet and my GP is ending me to a gastroenterologist. My dad actually has ulcertaive colitis so i guess there's a bit of family history.
I'm just wondering if my symptoms strike a chord with people from before they were diagnosed cause my GP isn't really telling me if its just a precaution thing or if there's a significant chance I have colitis or Crohn's disease or anything at all.

Northern Monkey

Dice Man wrote: »

Hi everyone.
Last summer, I came down with consistent tummy trouble (change in bowel habits, loss of appetite, gasiness etc) and got sent away by the docor with Irritible Bowel and it kind of eased but never went away completely.
For the past month or so, I've had pain and blood when going to the toilet and my GP is ending me to a gastroenterologist. My dad actually has ulcertaive colitis so i guess there's a bit of family history.
I'm just wondering if my symptoms strike a chord with people from before they were diagnosed cause my GP isn't really telling me if its just a precaution thing or if there's a significant chance I have colitis or Crohn's disease or anything at all.

I had all of the above symptoms before being diagnosed with crohn's. Both diseases can be hereditary, so there is a chance you may have one or the other.

I'm a year since being diagnosed (having had the symptoms for about two years before that) now and thankfully the medication and understanding what foods can trigger a flare up is working for me and I rarely have a severe flare up.

The nature of the disease is that everyone is different and what causes issue for one might well be fine for another, so the first thing I would do is start to keep a food diary to identify what foods cause issues for you (by doing this I found that I can eat salt and vinegar crisps but cheese and onion were a big no no:o)

scullen

Tks LucyBliss .. Am due back at specialist nxt week. had pretty awful christmas health wise. First time ever had to leave trolly full of groceries in supermarket and leave due to severe symptoms.. Started on mezavant 2 weeks ago so hopefully that will start to kick in now. Will keep you posted on infliximab if he decides to go with it..

Ladjacket

Hope everyone is well!

I was curious to know just how many Crohns patients have medical cards. I got one last year, after fighting and appealing for two months, but it runs out again in April.

I was just curious as to if people actually have medical cards, it is pretty disgraceful that we have a long term illness but are treated as if we just have a common cold or something - it is an illness for life yet the government refuse to put it on their list of long term illnesses for medical treatment.

The_Conductor

Ladjacket wrote: »

Hope everyone is well!

I was curious to know just how many Crohns patients have medical cards. I got one last year, after fighting and appealing for two months, but it runs out again in April.

I was just curious as to if people actually have medical cards, it is pretty disgraceful that we have a long term illness but are treated as if we just have a common cold or something - it is an illness for life yet the government refuse to put it on their list of long term illnesses for medical treatment.

+1
We have absolutely no recognition of the life long nature of our conditions- nor assistance towards managing it.

Ladjacket

it is just pretty ridiculous and seems to me that only in Ireland, can an illness with no cure, not be regarded as long term.

How do the rest of you guys cope? I am in a minimum wage job, rent to pay every week, food, bills, tax deductions from wages, and if i did not have my medical card (which was got after a long struggle), i would be shelling out over fifty quid every month for Imuran tablets.

I do realise that even if these tablets were double that price, they are still needed but come on, we are an absolute joke of a nation who treats our weak and vulnerable as if they are already dead.

Janedoe10

I have no medical card and have indeterminate colitis / they don't know crohns or UC . Had it before my take down surgery . That was only given because I was having surgery and ye know getting public health nurse for dressings at home needed for few months .. Now pay 70€ a month on tabs 6MP . Doc extra every 2 months for bloods . Joke really but it's norm now with HSE . I know a MS sufferer has had to wait 2 months now for card to be reviewed ...

Ladjacket

i had a check up with consultant yesterday, all went really well. blood tests for the last six months have been perfect with only once showing a slight inflammation having had a small flare up two months back.

the fistula that i had has completely healed and my weight is in perfect condition, its been what it was since before i was diagnosed.

Absolutely delighted, another check up scheduled for six months time, cant wait!

ha!

Janedoe10

That's great lad jacket. Take care

x3wiggles

My boyfriend has it and has had severe problems with it in the past. He's currently on long term medication and after bouts of bad symptoms, he seems to be recovering.
He's not out drinking as often as he used to and he's gained weight to the point where he's in proportion and no longer malnourished. He seems to be doing just fine. And long may that be the case.

Janedoe10

May I ask what long term medication is he on ?. I was put on 6MP/ mercaptopurine which really meant nothing until I checked up the tabs and they were basically a chemo tablet For treating cancer .. . I never thought I would be on those because of crohns . The tabs are fine though u get used to them tiredness bad enough though . Off few weeks now cause of swollen ankles .. The joys of no tabs in the morning .. LOL

MOSSAD

Diagnosed 2003, ill for 18 months, since then nothing. Don't know how you guys cope with it. Just the scent of toast in the morning was enough to send me running to the jax! Got pulled over by Garda on Sth Gt Georges St because I needed to suddenly use the toilet; I knew where the closest one was so I just cut across all the traffic and turned right onto Dame St. Fair play to him when I explained the problem he turned on the blue light and led me to where I wanted to go-even kept an eye on the double parked car till I was came back! Things evened out and not a flareup since back then.
I salute all of you guys-I thought I had had it bad until I went thru these posts.

creedp

Ladjacket wrote: »

Hope everyone is well!

I was curious to know just how many Crohns patients have medical cards. I got one last year, after fighting and appealing for two months, but it runs out again in April.

I was just curious as to if people actually have medical cards, it is pretty disgraceful that we have a long term illness but are treated as if we just have a common cold or something - it is an illness for life yet the government refuse to put it on their list of long term illnesses for medical treatment.

My understanding is that unless you can claim to have almost no income or on social welfare you wont get a med card for a specific medical condition - except of course you have influence. I find it extraordinary that some conditions (eg diabetes and Im not being derogratory to diabetics) get free medication and now the Govt is proposing to also give same condition free GP cards while crohns/UC is not in any way supported - basically you pick up full tag for drugs and GP. Why is one category of illnesss treated as inferior to another. Oh sorry I forgot for awhile there - this is Ireland the land of the two tier health system ..

creedp

x3wiggles wrote: »

My boyfriend has it and has had severe problems with it in the past. He's currently on long term medication and after bouts of bad symptoms, he seems to be recovering.
He's not out drinking as often as he used to and he's gained weight to the point where he's in proportion and no longer malnourished. He seems to be doing just fine. And long may that be the case.

Im curious about this for my own reasons .. I was diagnosed wiht UC last month after gong through a pretty horrible few months with all the full blown classic symptoms. One thing I have noticed that along with the stomach/bowel issues I have had terrible muscle/joint pain particularly in left shoulder/hip as well as across upper back. I also think the muscles on this side are slightly wasted looking although I don't know if that is more in my head. Was wondering if anyone with UC experiences these symptoms or it is the case that I have some other condition which has yet to be unearthed.

The_Conductor

Ladjacket- how exactly did you get a medical card?
I've so much internal bleeding that I need a veinifer drip once a week- yet I don't qualify......

It would help me immensely if I had a GP card- some months I skip getting medication because the 140 is just a bridge too far......

If you could detail what you did- the hurdles you encountered and how you dealt with them- it would be very helpful to me and doubtless many others using this thread.

Rachelle

Hi everyone!

Just thought I would share my experience of getting the GP card.
I was diagnosed with Crohns 4 years ago now and originally was being treated privately. I now attend Tallaght Hosp (not for long though,I'm getting out as in my opinion its turned into a total hell hole).

I applied for a medical card 2years ago and submitted my whole lifes outgoings to them! Tons of gp receipts, nurse visit receipts, health insurance docs, prescriptions fees, physio fees, details of all my outgoings etc. My outgoings were larger than my income but i was still refused.

To say I hounded them after that is an understatement. I was struggling to manage financially as i was on weekly visits to the gp for best part of a year. My gp didn't offer a discount so i was paying full whack of 50euros each week. So i appealed and was declined. I then decided to hound my local tds and eventually with the help of local counsellor I got my gp card. It took a year of screaming and shouting and generally being an all round nuisance to people in the HSE. I didn't enjoy it but in the end I got what I needed. Many a lunch hour and weekend was spent banging my head against a brick wall but i got there eventually.

I have my card one year now and this December I got the good news it was renewed until June 2013.
Crohns is a debilitating illness and its an extremely expensive disease to have. I cannot understand why we are not entitled to some sort of assistance if we need it; I somehow managed to remain in full-time employment throughout my illness and am extremely great-full to all my employers throughout my illness. But sometimes we all need a little bit of help and the GP card has made my life a bit less worrisome.

My advise to everyone on here is to keep hounding, hounding and hounding the HSE. If you get nowhere hound your local tds and counsellors.

Janedoe10

Thank u for sharing . That was for the GP card . I got mine first time after leaving hosp took 2 months . This was after me getting septiciemia after a leak from first op ruptured colon . It was got only because I had an open wound which was huge after been let out of hosp prob way too soon and the hosp did not want to be blamed for an infection by going into hosp every day . The nurses were great but it meant so much for public nurse coming every day for dressings .. Because reversal did not happen for few years the medical card lapsed in between . Would not get it reviewed .. Then few months before date of next OP . One and 2 TD,s were contacted . And as u said I had to moan to get it ... I felt like such a begger . Op now over a year ago . Card has ended again . I have not pushed for it as hard this time but if things change or I have to go into dic and hospital this may Changsha . I am in a good place now thank god ...

Eurodsl

I would advise anyone with Crohn's Disease to buy and read the book.
"Live free or die" by Shona Banda. Or go to youtube and search for videos of "Shona Banda" I wish good health to all.
Also:http://www.news-medical.net/news/20091217/Cannabis-for-Ulcerative-Colitis-and-Crohns-Disease-treatment.aspx
http://news.bbc.co.uk/2/hi/health/4728605.stm
Google "Crohn's Disease Cannabis" I hope this helps someone.

Richard Dower

Hey guys, after an 18 month remission...tis back
Last flareup was easy but this one is more serious, fistula...small bowl involved, i was lucky that it was caught before it penetrated the skin and an opening formed, no pus or collection or abcess thank god.

Humira seems to be working, initial 160mg dose and a second of 80mg...inflamation and blood markers are normal. Was in hospital for 15 days, out five days and back in for six

My new issue is partial obstruction, due to scarring/inflamation....the more pressing issue is there is an ongoing debate with the gastro medics and surgeons as to wether i need surgery or not.

The opinion seems to differ with each doctor, they are holding a case conference tomorrow and pow wow and give a final opinion. I refused surgery and sorta forced them to discharge me, i'm in limbo right now as i don't want surgery but know it's a strong possibility it'll have to happen

I smoke, i was bombarded with doctors telling me to stop, as i'm sure some of you can relate i have actually begun to smoke more....and you'll be aware this is stress related.

I have the Champix but not even started it, i'm on a heavy dose of suppresants, Humira/Imuran....my consultant says IV Remicade is next...then surgery.

I feel OK, i'm eating grand and no major pain, the odd twinge and the normal constant trip to the toilet, i'm just greatful my consultant recognises that steroids while very effective just send me mental.

The psychological side effects really hit me hard, so i'm glad not to be taking the steroids this time. I feel like i'm in limbo, waiting for the other shoe to drop....namely more admissions and ultimately under the knife

I'm 39, multiple surgeries already, it's not a badge of honour....if anything i feel like i'll cope less or be more fecked up post-op this time.....old age and just worn out

Only someone who's been through this can fully understand, which is why i have great respect for this forum and it's contributers

The_Conductor

Best of good luck Richard, with whichever course of action they decide to take. The scarring issue causing blockages- seems to be getting more frequent with lots of us it seems. Hope you're feeling better on the Humira.

Janedoe10

Hi Richard . Hope u are feeling ok . It is good that humeira is controlling it some what . can I ask did u have a reversal already and that is what is causing flare up now ... ? If u are to have surgery u will need to get off cigs for minimum 2 weeks . U don't need me to remind u about the cigs . According to hospital I have given them up 2 years ago .

Richard Dower

Janedoe10 wrote: »

Hi Richard . Hope u are feeling ok . It is good that humeira is controlling it some what . can I ask did u have a reversal already and that is what is causing flare up now ... ? If u are to have surgery u will need to get off cigs for minimum 2 weeks . U don't need me to remind u about the cigs . According to hospital I have given them up 2 years ago .

No reversal or colostomy/ileostomy (yet) thank god....yeah the docs really banged on at me hard this time round, drove me mad. I know i need to give them up, but my brain isin't in the right place.

But you're right about pre-op non smoking, i'd certainly give them up to give my lungs a chance for the op.

Janedoe10

Hi Richard . There is a good few medical docs about giving up smoking prior to any surgery . Found one which may be of interest http://anesthesiologyinfo.com/articles/12012003.php

It's good that it has not reached the stage of surgery yet . Although it can be daunting when it is propositioned . It may also give u a better quality of life . In some instances it could be a temporary situation . Look up the info when you have time on ileostomy association and there is also the crohns and colitis association . Both are UK based but they have meetings in Ireland too .

I do think Stress is a big big trigger in our illnesses . Try and take up some thing that can control that .

The irony is that can be impossible to watch if u are already anxious because of the stupid symptoms

Ladjacket

smccarrick wrote: »

Ladjacket- how exactly did you get a medical card?
I've so much internal bleeding that I need a veinifer drip once a week- yet I don't qualify......

It would help me immensely if I had a GP card- some months I skip getting medication because the 140 is just a bridge too far......

If you could detail what you did- the hurdles you encountered and how you dealt with them- it would be very helpful to me and doubtless many others using this thread.

Sorry for the delay in getting back on this, basically I was refused initially, as apparently I earned too much money. The fact that I had no outgoings that could be seen on paper (the fact that I paid my parents money each week as a contribution to bills food etc. did not count. Unless I could provide petrol receipts that would also not count, as I got a lift to work and contributed to the lady's petrol expenses, according to the guy in the office who decided if I should get a medical card, this was money that was not being accounted for so could not be used in making a decision.

Anyway, they declined it, in which case I wrote a letter back, cc'd in my local councillors, TD and about anyone I thought could help, and informed them of some facts as I saw it, and basically went on a rant mentioning banks, bail outs and what not!!

Seriously though, it was a long struggle but I went to meet my local TD then and broke it down to him about everything that happened to me, and asked for his help. My appeal was heard again and luckily was awarded a card.

I know I am one of the really lucky ones and feel terribly sorry for the loads of people on here who are out of pocket in addition to this terrible illness, but I would strongly suggest knocking on doors, picking up phones, writing emails.

Northern Monkey

Hope everyone is well!

Just wondering if any of you have had any experience with humira? I was back with my consultant today and he mentioned the possibility of putting me on it. To give you an idea of where I'm at currently... I've been on 150mg of imuran for a while now and to me it seemed to be doing the job (certainly in a much better place than where I was pre treatment), I haven't had any issue with bleeding in at least 6 months and my bowel movements have been in the most part controllable. I'm still having issues with cramps (probably 3 or 4 severe cases in the last 6 months and another 10 or so minor flair ups where you know something isn't quite right, but you are still able to get on with what you are doing). The consultant thinks putting me on humira will help with this and could put me into full remission, but has given me the choice of going with it or staying on imuram. He has made me aware of the potential side effects and risks, but I'm just wondering how everyone here who has been on it has found it.

Cheers

techie1981

Hi Folks

It was really good to come across this forum just now and to read all your stories.

After nearly 18 months of gp visits, hospital tests, hospital visits and being told over and over again I had IBS and was suffering from bad anxiety I was diagnosed with Crohn's. Its been a crap 18 months especially when visits to A&E for bad bleeding and ridiculous pain were becoming more frequent. I'm waiting now for a treatment plan from my gastro but have no real information on what the usual drugs are that the doctors tend to prescribe? They've mentioned something called Salazopyrin and also antibiotics? I also have Ankylosing Spondylitis but I've not been having any trouble with that, I was on Enbrel for nearly 3 years when the Ank Spond was at it's worst! Any info would be much appreciated

Cheers
Tom

Janedoe10

He Tom I guess why they mention Salazopyrin is because u have Ank Spond.. . As far as I know that drug is not an immuno suppressant . It is listed in Wikipedia as used in treatment of ulcerative colitis .. When they have diagnosed at least there will be a treatment plan now . it's just then to see which drug suits . A lot of them have their own side effects but it's something we have to take if it eases the symptoms u have had in the last yr. one thing if u don't have a medical card get down to chemist to get drug payment card . They will have the forms.

Corkblowin

Bit depressed at the mo. Had an ileostomy 12 years ago & was flying after it. Wasn't on any drugs for 8 years & got to the stage where I actually forgot I had a bag (led to some delicate conversations on the rare nights I somehow brought a woman home with me & was questioned about the scar! But that's another story!:) )

But around october I began getting cramps & pains again - went to outpatients for usual tests - found some thickening but nothing too serious - but pains kept getting worse & worse. Eventually I ended up in a&e where they discovered a 45mm abscess. A few nights stay & course of antibiotics & all was well. However they said an urgent test was needed to see if the fistula had tracked. I went in to them 4 weeks later for a check up & mentioned the test again - was beginning to feel pretty bad again.

A further 6 weeks later, in severe pain again to the extent I couldnt change the bag without crying & no sign of an appointment despite numerous calls, I eventually went to a private consultant who checked me out & found everything had advanced much further - to the extent that my stoma was now so compromised that it can't be saved. So on Monday I'm heading in to get the whole thing refashioned and the stoma relocated to the other side. So pissed off as i believe if I'd been looked after properly, or been more insistent when I was calling them, that this could have been avoided. Grrrrrr :mad: it's shocking that the only way to have the system treat you is to present yourself at a&e.

If anyone is unsure about something or feels that things aren't right, don't hesitate - straight to a&e or your consultant & don't let go until you're happy!!