Crohn's Disease

waterford1988

Hi guys, its beena while since I posted here. I have been in complete remission for most of the last year. I have chrons the last 7 years and this has been the longest I have went without a flare up. I also suffered from arthritis and bouts of depression due to my illness. Now thanks to remicade I am completely healthy.
Now that I am healthy, I want to help others, even if someone just needs someone to talk to. I know myself how dark the days seem when suffering a flare up. Now if anyone needs someone to talk to or wants to ask a few questions about diet ect please send me a private message. Hang in there people!:)

geor

geor

this is the second or third post of yours that i have had to edit

it is dangerous to go touting faith based therapy for everyone

Colmm23

Hey Guys,

Just hoping for a quick G up folks and some advice. After 12 months of hassle free life I am now lying in a bed in hospital since last saturday after waking up with a crippling pain. Any way it seems I've developed an abcess on the large intestine combined with a lot of inflamation. The abcess is been drained at the moment and the infection is been battered by the antibiotics, but I'm been told that I will most likely need surgery to remove that part of the infected bowel.
Why does it always seem to happen at times you need to at near full health. I've just entered a race for promotion in work and now the other person is about to grab a 3 week headstart:(

Bonnie09

Aww Geor that is great news Delighted for ye! Hope all goes well for your wife
Waterford 1988 - Its great that you are still in remision! Long may it last for you
In realtion to anyone who has had surgery in the past, does anyone get a dull ache where the stiches are? I seem to have this pain the last 2 weeks and I dont know what it is. If it doesnt settle by next week, I'll have to ring the consultant. Im not too sure If I have done something to aggrivate it or if it could be something more sinister.....

geor

:)Thanks Bonnie09!!

Colmm23 - your health is so much more important than any job or promotion! I know it sucks, but if you lookmat it positively your disease will give you greater appreciation of the more important things in life, like firends, family, fun and sunshine!

I was a director in a large bank and changed jobs to a less stressful role and big pay cut last year. The hours are less and i have more time and less stress to do the things I really enjoy...it is all about quality of life.

I would read Jini Patels - listen to your gut for some ways of avoiding surgery, you can also buy suppositories from her store which may help the abcess heal - I have her details on eat-right.ie

best of luck and stay positive!!

The_Conductor

Colmm23 wrote: »

Hey Guys,

Just hoping for a quick G up folks and some advice. After 12 months of hassle free life I am now lying in a bed in hospital since last saturday after waking up with a crippling pain. Any way it seems I've developed an abcess on the large intestine combined with a lot of inflamation. The abcess is been drained at the moment and the infection is been battered by the antibiotics, but I'm been told that I will most likely need surgery to remove that part of the infected bowel.
Why does it always seem to happen at times you need to at near full health. I've just entered a race for promotion in work and now the other person is about to grab a 3 week headstart:(

Sorry to hear that Colm- it really is the case that stress is a massive factor in Crohn's Disease. You can feel ontop of the world- but that one little thing that is causing you stress can be the killer. It really is the case that you have to sitdown and redesign your life so you have as fulfilling, yet stress free a time as possible. From my own personal experiences, I firmly believe that stress is at least as big a factor as diet or medication in the management of Crohn's Disease- and even things which most other people would consider fairly innocuous, can take on a whole new meaning.

Get better soon- and make sure you quiz the gastrointestinal team as to the full extent of your options while you're there- its a hell of a lot easier to tie them down when they're not at the end of a phone call!

Best wishes

Shane

tbh

geor wrote: »

:)Thanks Bonnie09!!

Colmm23 - your health is so much more important than any job or promotion! I know it sucks, but if you lookmat it positively your disease will give you greater appreciation of the more important things in life, like firends, family, fun and sunshine!

I was a director in a large bank and changed jobs to a less stressful role and big pay cut last year. The hours are less and i have more time and less stress to do the things I really enjoy...it is all about quality of life.

I would read Jini Patels - listen to your gut for some ways of avoiding surgery, you can also buy suppositories from her store which may help the abcess heal - I have her details on eat-right.ie

best of luck and stay positive!!

Geor, we've given you a few mentions of your website now, please don't link it again.

Also, everybody should be aware that you need to discuss diets, treatments and medications with your doctor before trying them.

thanks all.

The_Conductor

Department of Health announce National Colon Cancer screening programme to be rolled out nationally from 2012, initially targetting at risk groups.

I'll post the press release as soon as its forwarded.

Very good news for Crohn's Disease sufferers.

lip

Hi everyone.Been a while since i've been on.Colm,think you should try and concentrate on getting better.Know its hard when your'e ambitious and want to move up the ladder,but theres nothing you can do while your'e in hospital anyway,and stressing about it will only make things worse.Hope you feel better soon and get sorted.
Well,I'm still waiting on a bed for op.Been ringing hospital every day for 2 weeks and can't get an answer from anyone.Surgeons secretary is telling me its admissions I should be talking to,admissions say its surgeon as he hasn't given another date.Can't get through to anyone from surgeons team.Did leave my name and number with someone who answered registrars bleep,but have heard nothing since.Any suggestions on how I can get in contact with someone?Feel very out in the cold now and forgotten about.

Kevster

smccarrick wrote: »

Department of Health announce National Colon Cancer screening programme to be rolled out nationally from 2012, initially targetting at risk groups.

I'll post the press release as soon as its forwarded.

Very good news for Crohn's Disease sufferers.

Do'nt forget us Ulcerative Colitis sufferers. Although I'm in the UK now, I agreed with my gastroenterologist before I emigrated that I'd stay in touch with her and go back home for check-ups.

Kevin

The_Conductor

Kevster wrote: »

Do'nt forget us Ulcerative Colitis sufferers. Although I'm in the UK now, I agreed with my gastroenterologist before I emigrated that I'd stay in touch with her and go back home for check-ups.

Kevin

I was talking to someone in the HSE on Friday evening- apparently there are no plans to prioritise testing for those with pre-existing conditions that may make them more susceptible to Colon cancer etc- prioritisation is to be purely on age grounds. Most people who get colon cancer are older (over 70) so they get scanned first- then it gets rolled out to the over 60s- and there are no plans at present to scan the under 60s at all.......

Its a right disaster for IBD sufferers.

diskodolly

hi there am new to this tread, have crohns 16 years am 33 and have been well for the pass 4 and a half years, untill i was put on an anti biotic for a sinus infection which seamed to kick off a flare up that was in the pipe line. i have been on and off steroids now for about 4 week's.
last thurs nite i had to attend a AanE department dont know if im aloud mention names here ??? where i had to wait 4 hours before i passed out on the toilet floor then came 2 vomiting and unable to stand up with the pain my friend who went out with me went to get help from the triage nurse but he just told her they were very busy and i would just have to wait my turn, i am a patient of this hospital and just dont know what i should do my friend took me out of the hospital and took me to another one where they promptly gave me anti emetics and a painkiller but only kept me there for 3 hours as i was not a patient attending there, i am a health care professional myself and dont know should i just accept this ill treatment as this is just our health system or is there anything i can do.
i am seeing my consultant on wed in the hospital that would not help me when i passed out, and need advise,
i would never treat a patient in my care in this way and because of my illness and experiences i treat any patient i care for with the upmost care respect and dignity that i can manage,,


just feel so scared about i will do if it happens again, thankfully i have the most amazing GP and she is looking after me well untill i see my doc on wed, thanks in advance for any advice you could give i am very gratefull

The_Conductor

Hi diskodolly- unfortunately what you're describing is pretty parr for the course. A&E is a nightmare- I spent 16 hours there myself on Thursday night/Friday morning- the only reason I was eventually seen is they panicked when the blood test results that the triage nurse did came back.

What I've found personally helpful is using the VHI and other Swiftcare clinics- where they guarantee to see you within a set period of time (normally an hour). Be careful with your choice though- as some places like the Hermitage for example- don't have any time guarantees- and could have you waiting even longer than a regular A&E.

What I've also found helpful is phoning my GP in advance and getting a brief note from my GP for the Triage nurse- with a very brief history, before turning up at A&E. You're no longer assessed as walking wounded- and for good measure- if you have a GP referral letter you don't have to pay the EUR100 A&E charge (when you're in agony its the least of your worries though).

Really sorry to hear things are bad at the moment.

S.

diskodolly

hi s had written a reply to you but i had timed out and then my whole msg had disappeared so ill thankfully give you the edited version,
i did bring a letter with me from the doc on call that my friend caled out to house he would not give me anything for pain and just thought i was a drug addict looking for a hit untill i asked him to examine my stomach and he saw my scar. but still wouldnt give me anything saying he doesnt carry painkillers with him,, my GP said this is a load of s**t !!!!!!!!

as far as i know VHI wont treat someone with abdo pain that what it says on there web site anyway or id def go there, the beacon have an A an E but its only open till 6pm and theses thing always seam to happen at night.

sorry to hear you were unwell yourself during the week !! and thank you for replying to me. hopefully when i see my doc on wed i will get some answers.

kildareash

OMG, what a start to the New Year for ye. I really do hope things improve for everyone.

Lip, I can't believe you can't get a bed. How sick do you have to be to get treated in this country? I hope you are on some kind of nutritional support, as I really think this would have made a difference for OH before his op.

Colm, I really hope the abscess drains quickly and you are back fighting for your promotion soon. Is there anyway you cld use your time off to plan your strategy to get promoted?

I know for my OH it was slightly different as he had only been released from hospital the week previously.
But in the early hours of NYE he spiked a temp, so we rang the team.
They said be best to come in and have a set of bloods run. We were concerned about having to wait all day in A&E...considering weather, time of year etc, we knew it would be busy. But Reg said to get nurse to contact team when we arrived.
He was seen by triage nurse straight away and by a doc from his team within an hour.
Getting a bed was a different story!
Turned out to be an abscess, he had it drained the following evening and came home last Tuesday. Hopefully he'll stay longer than a week this time...

They have finally started him on imuran and have kept him on flaygl, and he will see gastro consultant again in two weeks time. Surgeon still thinks its colitis, but gastro guy thinks its chrons.
Once he builds up a bit of strength they will examine him further in the hope of giving him a definitive answer.

lip

Hi everyone.
God Discodolly,thats a disgrace,but unfortunately not surprising.I was told by a nurse last August in A&E that because I had been in pain for a year and it wasn't life threatening there was nothing they could do.I asked her if I came in with a broken arm,which obviously isn't life threatening,would they not try and fix it.I insisted on seeing a doctor.He came 2 mins later and said he was going to admit me but because it was the weekend I would only be there for pain management.So I decided to go home and returned on the following Monday and was admitted then.While in I ended up making a complaint to patient care re consultant on advise of the ward sister as nothing was being done,sure enough I seen the consultant that evening after 4 days of waiting.
Kildareash,glad to hear OH got home for Christmas,but sorry to hear he ended up back in.Hopefully the Imuran will kick in soon for him.I was on Flagyll for a few weeks to try and close fistula but it caused awful numbness and pins and needles in my hands.I've been on and off Imuran for years and catch everything going,so he'll have to be careful.I got mumps 2 weeks ago,luckily I had my MMR so only got mild dose and kids had theirs so didn't get it off me.
Finally spoke to registrar this morning.He was surprised to hear admissions wanted a new date from surgeon,as I'm still on their list.Should hear something by friday.Feel like giving DH a sharp knife and a diagram lol.

diskodolly

they could have put me in a wheel chair in the toilet and given me something to stop the vomiting and pain and i would have been happy, i dont take painkillers for my crohns as they just make me vomit. steroids are the only thing to help with pain even though i was on 15 mg reducing when this happened.
the only thing i find helps stop the trots is a cap full of aloe vera but to much bungs me up.

its great to be able to chat to people in the same boat,

Colmm23

Christ of almighty disko, thats just downright disgraceful, it makes my visit to A&E on sat morn a stroll in the park. They had me in a bed in 10 mins although I was slumped across two chairs for 5 of them.
Thanks for all the wishes folks.
I'm just waiting for a repeat CT scan now to determine how progress is, I presume the fact that the abcess drain seems dry and I feel as well as I did before I came in means its pretty good.
I swear we must all have the patience of Jobe to put up with all this waiting around eh.;)

LucyBliss

It always boggles my mind how when your main symptom is drastic pain, the attitude from professionals can be 'oh well, can't you just put up with it?' Particularly as we do put up with pain that would have most people overdosing on pain meds so it must be pretty damn excruciating for us to want to do something about it!
For what it's worth, I'm so sorry for everyone dealing with symptoms right now, not to mention the chaotic hospital system.

Myself, I celebrated 2 years of remission the weekend before last. I made chocolate cake. I don't drink and it's not really a celebration in my mind without cake. But I had to put up with nearly four years of misery to get there and there were times I thought I'd never get to the end of it, but I did. And I hope that the light at the end of the tunnel is there for you all too and that you get there quickly.

kildareash

LucyBliss wrote: »

Myself, I celebrated 2 years of remission the weekend before last.

Congrats LucyBliss,
Two years...that's great, wishing you many more years of remission too.

It's great to hear that there is light at the end of the tunnel.

diskodolly

congrats lucybliss,
thats brilliant, i was 4 and a half years in remission till now and i still dont think im back in full blown flare up till i have a few test done, after having so well for so long i refuse to accept it yet, my bloods are normal etc so hopefully it was the antibiotics i was on before xmas that flared it up/

my main problem is strictures so once there there is just manage them or remove them, i have a fab consultant in tallagh prof o moran he's so good,one time yeas ago a doctor was ordering all these horrible test for me and he just turned to him and said do you not think she's been through enough already and ordered an MRI for me instead which couldnt be read because i was so full of gas LOL



Hioefully have my app wed if not have one for next wed so will konw more then,, sorry for the rant

DD XX

diskodolly

my doc could not even get through to my team in tallagh so will have to wait till next wed hopefull ill be ok till then !!!

pinkyc

okay i noticed there hasn't been any recent comments on crohns disease which is a pity considering i think its a good idea that other suffers can talk about anything and another person will know what its like!
so chances are i wont get comments back but theres no harm on trying, hopefully someone will have something to say.

I'm now 18 years old but was dignosed when i was 12 (youngest to have been dignosed at the time so i was told anyway) i think however I've been suffering since i was about 8 as i was sick alot. Before i was dignosed i was extremely sick the usual syptoms like pains, sicky feeling, tiredness, no energy and ALOT of diarrhea. It took along time and a hole load of steriods to get it some what under control and today Im on Imuran 200mgs a day and a steriod drip every 6 weeks. It helps alot but certainly doesnt rid of it. I'm coping okay with right now (i keep telling myself that there is people way sicker) but when it comes to school its hard!!

i know ye all more or less know what im talking about, i'm delighted that i can talk to other suffers (my mom has it too but theres only so much i can say to her i dont want he worried over me)

hope to talk with ye soon,
oh i have some ideas too about getting suffers more connected.
peace
keep well

The_Conductor

pinkyc wrote: »

okay i noticed there hasn't been any recent comments on crohns disease which is a pity considering i think its a good idea that other suffers can talk about anything and another person will know what its like!
so chances are i wont get comments back but theres no harm on trying, hopefully someone will have something to say.

Sorry that the thread has been quiet- I guess its a combination of factors- including its a busy time of the year, and a lot of the more regular posters, myself included, are very under the weather at the moment.

pinkyc wrote: »

I'm now 18 years old but was dignosed when i was 12 (youngest to have been dignosed at the time so i was told anyway) i think however I've been suffering since i was about 8 as i was sick alot.

12 is young to be diagnosed. I guess at that sort of age they have a long and varied list of other possible ailments that they normally slowly meander through- before they start to think of the slightly more exotic things, like Crohns. I had my own first struggle with Crohn's- which almost killed me- aged 10. I was living abroad at the time- and while the sympthoms were classical Crohn's- they weren't recognised, and I was put on bed rest (for several months) allowed to take any fluid I could keep down- which wasn't much- and eventually almost 2 months later managed to get out of bed. I was another 10 years before I had an official diagnosis- and almost all of my large and small intestine removed.

pinkyc wrote: »

Before i was dignosed i was extremely sick the usual syptoms like pains, sicky feeling, tiredness, no energy and ALOT of diarrhea. It took along time and a hole load of steriods to get it some what under control and today Im on Imuran 200mgs a day and a steriod drip every 6 weeks. It helps alot but certainly doesnt rid of it. I'm coping okay with right now (i keep telling myself that there is people way sicker) but when it comes to school its hard!!

I understand fully how difficult school can be. Aside from the pain associated with Crohn's the constant state of exhaustion is something that you really cannot describe in words to anyone who hasn't gone through something similar. At the same time- on the few good days you have here and there- people think that you're fit and healthy- when deep down you know you're anything but.

200Mg is a high dose of Imuran- I was on similar up to a forthnight ago, when a random FBC showed my white cell count has plummetted. Make sure you get constant blood tests done!!!

Re: the steroid drip- I've been emergency hospitalised more times than I can remember for the steroid drip- it really is amazing. I wasn't aware that patients were prescribed continual drips- though I can well understand that it may very well be the lesser of two evils. Has your consultant discussed long term treatment plans with you (continual steroid drips is not normal- even if its all that allows many of us to lead semi-'normal' lives).

pinkyc wrote: »

i know ye all more or less know what im talking about, i'm delighted that i can talk to other suffers (my mom has it too but theres only so much i can say to her i dont want he worried over me)

Seriously- do talk to your Mum. You are lucky that she will recognise what you're going through. In most cases people simply do not have anyone who is capable of comprehending what we're talking about. I know she probably hates to know when you're in pain- any parent hates when their children are hurting, but she has probably experienced most of what you're going through- and is almost uniquely placed to help you.

pinkyc wrote: »

hope to talk with ye soon,
oh i have some ideas too about getting suffers more connected.
peace
keep well

The Irish Society for Crohn's and Colitis- has a rather active Facebook group, located here. They would probably be very interested to hear of any ideas you may have for getting sufferers more connected/organising meetups etc.

Herehttp://www.facebook.com/groups.php?id=729064545#/group.php?gid=106491930028

Best wishes,

Shane

Colmm23

Just found this interesting programme folks, it follows a guy with chrons as he talks to doctors in the uk that are researching treatment and possible cures.
I'm interested to see what other other people think.

http://www.communitychannel.org/content/view/1685

its half an hour long.

Regards
Colm

LucyBliss

smmcarrick, couldn't agree with you more about the fatigue that hits. I've noticed that I tend to get it bad around May and October. It has eased off somewhat over the past couple of years but when I'd be working, it would take everything I had to get through the day and I'd go to bed as soon as I got home and sleep almost to the following morning before getting up for work again. I'd eat during the day all right but I was just too tired for any big dinner when I came home from work. It was very annoying and dehabilitating. Of course, once it stopped I'd be eating all around me, probably making up for what I'd lost in nutrients.

pinkyc, I'd like to second the telling your mum suggestion. Yes, it can be hard for our parents to see us like this, especially as you were diagnosed at such a young age. I didn't tell my own mother a lot of my symptoms after I was diagnosed because I heard her say to someone how hard it was for her and how people would think she was a bad mother because I was so run down. My mother, bless her, is a good person but she does have her own mother's tendancy to make a situation all about her from time to time. So I didn't want to bother her. And then I got a bit older and I thought, the hell with this, crohns is happening to me and I need her support. I decided to tell her that and asked her not to turn this about her and really she was invaluable to me when I was in that big flare because I couldn't go out and do anything and she had to do her own work and get me whatever I needed as well. Plus, she didn't put any pressure on me after surgery to do anything I didn't feel up to because she wanted me to recover and recover well.
Of course, now I'm two years post op and she's continually plaguing me when I'm down town to get her things!! But it's great to be able to do it and help her for a change.

pinkyc

thanks guys, i will talk to my mom about it and i will tell her how i really do feel instead of sayin 'i'm okay' when im really not.


thank you so much for taking the time to read my post and for writing back, you no it really is great to talk to others, as i can tell my friends and theyll listen but they dont understand, now if i need to talk i no i have a community of people to talk to outside my mom


thanks so much guys =]
xx

gigawatt

to be honest if I'm so bad with pain that i cant sleep id go to the emergency dept. ive done it before after spending months in pain and misery going to the gp and being ignored. tell them you cant cope with the pain, theyll have to do somethng about it. and personally ive found pentasa taken consistenly and possibly in conjunction with enemas or salazine suppositories does help. imuran is great i was on it for a long time, but id stay on just pentasa if i could. a lot less side effects.

Richard Dower

Very similiar drugs in use....is there a new drugs about?, surely it's not all Imuran/Pentasa/Deltacortril??

Richard Dower

How many of you (honestly) have been affected psychologically by Crohn's?...as in repeated exposure to hospitals/medical stuff etc?