Crohn's Disease

HigginsJ

Im wondering how you get by in relation to work? When you 1st got the disease were you off for long and how do you get by with relapses??

The_Conductor

HigginsJ wrote: »

Im wondering how you get by in relation to work? When you 1st got the disease were you off for long and how do you get by with relapses??

It really depends on the severity of the relapses- and how stressful your working environment is. Some people manage fairly normally with work (with the exception of being able to get to the bathroom as and when needed)- while others make deliberate career choices to try to make life as easy as possible for themselves.

For the first 5 or 6 years in my current job- I took no sick leave whatsoever (I did use my annual leave when I was physically incapable of getting into work- or when I needed hospitalisation- as happened on occasion). When you have a long term illness- you do tend to be hyper aware of it, and do your best to try to ensure you minimise your sick leave- often to the extent that you take far less sick leave than your erstwhile healthy colleagues.

I've been off work for varying lengths of time with illness- the longest was 2 months after some worse than normal surgery.

S.

LegacyUser

Hi all,
Have had another flare up but also just been diagnosed with a clot in my lung so on warfarin etc. At 23 its a bit odd....is this a side effect of crohn's does anybody know? Also was due to start infliximab but due to clot and also pneumonia following the clot, its been put off. My doctor says surgery is probably my only option now if infliximab doesnt work...but no one seems to be able to tell me details of the surgery at all. Recovery time, pain etc? Has anyone had a diseased part of their small bowel removed and could tell me a bit about it so I can make an informed decision?? Thanks!!

junito

im hearing good results about low dose naltrexone 4.5 for crohns anybody heard about this ?

The_Conductor

sheesy wrote: »

Hi all,
Have had another flare up but also just been diagnosed with a clot in my lung so on warfarin etc. At 23 its a bit odd....is this a side effect of crohn's does anybody know? Also was due to start infliximab but due to clot and also pneumonia following the clot, its been put off. My doctor says surgery is probably my only option now if infliximab doesnt work...but no one seems to be able to tell me details of the surgery at all. Recovery time, pain etc? Has anyone had a diseased part of their small bowel removed and could tell me a bit about it so I can make an informed decision?? Thanks!!

No idea- but I've blood clots here too. I'm on Warfarin and Inohep...... Speaking of which the Warfarin clinic in James Connolly starts in 45mins, so I had better get moving.......

HigginsJ

sheesy wrote: »

Hi all,
Have had another flare up but also just been diagnosed with a clot in my lung so on warfarin etc. At 23 its a bit odd....is this a side effect of crohn's does anybody know? Also was due to start infliximab but due to clot and also pneumonia following the clot, its been put off. My doctor says surgery is probably my only option now if infliximab doesnt work...but no one seems to be able to tell me details of the surgery at all. Recovery time, pain etc? Has anyone had a diseased part of their small bowel removed and could tell me a bit about it so I can make an informed decision?? Thanks!!

That doesnt sound like the most fun thing in the world. Hope you recover ok. How do the blood clots develop?

Had appointment with my specialist yesterday so having another colonoscopy on Sept 2nd and an MRI scan as soon as possible as she reckons there might be an absess. Depending on that they will either put me back on puri-nethol or else imuran (but she reckons i may react badly to that)

nerdysal

For any of you tweeters out there, follow the IBD for Long Term Illness Campaign tweets on www.twitter.com/ibdforltischeme

Hope everyone is keeping well!! We've now got 1,000 signatures on the petition. We're going to need a lot more to make an impact though.

Also, after the recent interview printed in the Sunday Business Post by Fiona Kelly (interviewing me) I was asked by my boss to speak at a Rotary Club lunch about Crohn's & LTI scheme. If this is the kind of thing that can happen after an article we need to get as much information out there through TV, Radio & Newspaper. So please guys, email your local newspapers & radios and also the nationals!!!

Thanks again!!

Sara

smithy1981

Hey all,

I had to come into hospital last monday night for the 4th time since may. They ended up operating on me wednesday and took some small intestine, some large intestine and my appendix out. I'm really hoping i get some relief from this because life have been fairly crap since i was diagnosed . I haven't suffered any diarrhoea yet but im worried i will after the surgery because i work as a taxi driver and from what ive read it can get pretty bad.

I realise im not going through half of what some of the other posters here are, but its a bit of a shock for me as alot has happened since i was diagnosed in may, and i haven't a clue how this surgery will affect me. I haven't seen a consultant since before the op and i dont really know what the future holds for me. Has anyone that had a similar operation any advice?? Or know of some sites with good advice?

Thanks in advance

Jamie

HigginsJ

nerdysal wrote: »

For any of you tweeters out there, follow the IBD for Long Term Illness Campaign tweets on www.twitter.com/ibdforltischeme

Hope everyone is keeping well!! We've now got 1,000 signatures on the petition. We're going to need a lot more to make an impact though.

Also, after the recent interview printed in the Sunday Business Post by Fiona Kelly (interviewing me) I was asked by my boss to speak at a Rotary Club lunch about Crohn's & LTI scheme. If this is the kind of thing that can happen after an article we need to get as much information out there through TV, Radio & Newspaper. So please guys, email your local newspapers & radios and also the nationals!!!

Thanks again!!

Sara

Hi Sara,

Signed up for twitter and added support. Emailed local newspaper with details of campaign.

SusieBoozie

smithy1981 wrote: »

Hey all,

I had to come into hospital last monday night for the 4th time since may. They ended up operating on me wednesday and took some small intestine, some large intestine and my appendix out. I'm really hoping i get some relief from this because life have been fairly crap since i was diagnosed . I haven't suffered any diarrhoea yet but im worried i will after the surgery because i work as a taxi driver and from what ive read it can get pretty bad.

I realise im not going through half of what some of the other posters here are, but its a bit of a shock for me as alot has happened since i was diagnosed in may, and i haven't a clue how this surgery will affect me. I haven't seen a consultant since before the op and i dont really know what the future holds for me. Has anyone that had a similar operation any advice?? Or know of some sites with good advice?

Thanks in advance

Jamie

Hey,i have Crohns 14years now,i had that opp too about 10 years ago.i got a few years relief from it,then had my whole large bowel removed,then had to have an ileostomy.i have it now 4 months after the opp i ended up with septisis and abseces and in a coma.but i was a sever case,plus you havent had diarrhoea which is great.that was my problem for so many years.you will be fine :Dand if you do get diarrhoea you can get strong immodium which are great.theres a chat site called crohnszone,its brill they all have it and you can ask what ye like.if you have any questions at all just post me.take care;)

kildareash

Susie, your story sounds so similar to my boyfriend.
He has ileostomy now for just over a yr but most of that time was spent in hospital.

He's not really into these Internet forums, but has recently joined the IA website and finds it very useful.

SusieBoozie

sheesy wrote: »

Hi all,
Have had another flare up but also just been diagnosed with a clot in my lung so on warfarin etc. At 23 its a bit odd....is this a side effect of crohn's does anybody know? Also was due to start infliximab but due to clot and also pneumonia following the clot, its been put off. My doctor says surgery is probably my only option now if infliximab doesnt work...but no one seems to be able to tell me details of the surgery at all. Recovery time, pain etc? Has anyone had a diseased part of their small bowel removed and could tell me a bit about it so I can make an informed decision?? Thanks!!

Hey,ive been on infliximab twice,first time it worked for six months then id to get an opp,you will be sore but they have great pain killers to help,if the infliximad does not work you dont really have another option,thats the thing with crohns,there is another injection called Humira,i was on that for two years but evently had to get the opp n the end.the secong time i had infliximab, i had a bad reaction my heart rate shot up and i couldnt breath,scary! i have crohns 14 years now,horrible illness!but i lived with it,id no choice and now i recently had an Iloestomy,which im trying to come to terms with as im only 28.after that opp id alot of complications as it was a big one,but your opp should go smooth and you should recover very well. take care

HigginsJ

SusieBoozie wrote: »

Hey,ive been on infliximab twice,first time it worked for six months then id to get an opp,you will be sore but they have great pain killers to help,if the infliximad does not work you dont really have another option,thats the thing with crohns,there is another injection called Humira,i was on that for two years but evently had to get the opp n the end.the secong time i had infliximab, i had a bad reaction my heart rate shot up and i couldnt breath,scary! i have crohns 14 years now,horrible illness!but i lived with it,id no choice and now i recently had an Iloestomy,which im trying to come to terms with as im only 28.after that opp id alot of complications as it was a big one,but your opp should go smooth and you should recover very well. take care

God some of you have had very tough experiences. I have only been dealing with it for 6months and have found it very tough on occasions. Agree with you that its a horrible illness!!

LegacyUser

SusieBoozie wrote: »

Hey,ive been on infliximab twice,first time it worked for six months then id to get an opp,you will be sore but they have great pain killers to help,if the infliximad does not work you dont really have another option,thats the thing with crohns,there is another injection called Humira,i was on that for two years but evently had to get the opp n the end.the secong time i had infliximab, i had a bad reaction my heart rate shot up and i couldnt breath,scary! i have crohns 14 years now,horrible illness!but i lived with it,id no choice and now i recently had an Iloestomy,which im trying to come to terms with as im only 28.after that opp id alot of complications as it was a big one,but your opp should go smooth and you should recover very well. take care

Thats really helpfull thanks a million. Cant seem to get a straight answer from doctors about the operation! I was on humira for over a year but just didnt work. Hoping infliximab will work for a while at least as im due to start a masters in september. Hoping I dont have a reaction to it like that, already having chest pains from a pulmonary embolism!!:)

pinkyc

hey guys, i've on this thread before so some of ye might have read that, but just quickly ill explain im 18 and i have crohns the last 6 years. but for the last few months (maybe 4) i have had like really big lumps on my legs, they look like infected bites and some days they look black and blue and others red raw they can also get very sore and hard to walk with also my ankles and legs are so swollen too. i've been to my specialist about it and he said it was because my crohns wasnt under control but didnt give me anything he just said it would clear up itself, so i'm just wondering has this ever happened to anyone before? and how long before it all cleared up?

thanks

Hey guys. Just wondering how people generally end up being diagnosed with Crohns, and how long it took you to get a diagnosis?

smithy1981

Aarav Big Spoon wrote: »

Hey guys. Just wondering how people generally end up being diagnosed with Crohns, and how long it took you to get a diagnosis?

I was only diagnosed in may so i wouldnt know as much as others on this thread

I had bad pain in my abdomen which they thought was my appendix. I went to have surgery to take it out a month later and when they looked inside they seen that my appendix was fine and my intestine was bad from chrohn's.

I think they generally check with a Colonoscopy or Barium dye test tho.

degrassinoel

took 2 years of tests to find out it was crohn's for me..

countless bloods, barium, colonoscopy, endoscopy, ultrasound, even a shot in the big white donut (MRI?)

absolute nightmare getting that diagnosis, and tbh not much better since then either.
The colonoscopy was the last one they tried, took biopsies and figured it out from there.
In the beginning they thought it was my appendix too, but that doesnt mean its the same problem we all have as there's a million things that can look sound and feel like crohns disease. After those 2 years of uncertainty and worried sick about what it was along with being sick it was a relief to find out..even if there's feck all i can do about it lol

Stephen P

It took them ages to diagnose me, well over a year anyway. Loads of different tests colonoscopy etc. Waiting for them to diagnose it was very stressful and frustrating, which didn't help the matter.

The_Conductor

11 years in my case- I was sent to a psychiatrist who tried to tell me it was all psychosomatic- and was on a drip in ICU, 6 stone in weight, as I couldn't even drink water- before I was diagnosed....... I genuinely had given up the will to live- anything that would release me from so called 'living'- and the never ending pain.

HigginsJ

Have 2nd colonoscopy in 5 months tomorrow. Prep day today fun. Movi-Prep is easier to take than Kleen-Prep.

The Verve were probably on about Crohns disease when they sang "Now the drugs dont work they just make you worse"

HigginsJ

Found large blockage/inflamation in the joining between large/small bowl in the colonoscopy. Have CT scan next thursday. Doctor is inbetween deciding to operate or go on a course of infliximab or humira.

Those who have had op or infliximab or humira; which did you find best?

pinkyc

higginsj i've been having the infliximab for the last 4 or 5 years, it helps me wonders really =], i get it every 6 weeks and it will help me feel well and led a completely normal life for 3 or 4 weeks of that 6 but its totally worth it =]! the only bother is its very time consuming, going into hospital for it every time, its meant to take 4 hours but it takes far longer because of blood tests etc. but i would recommend you trying this before the op as i was very sick before i started the infliximab and the op was on the cards for me but thank god the infliximab worked wonders =].

best of luck

HigginsJ

pinkyc wrote: »

higginsj i've been having the infliximab for the last 4 or 5 years, it helps me wonders really =], i get it every 6 weeks and it will help me feel well and led a completely normal life for 3 or 4 weeks of that 6 but its totally worth it =]! the only bother is its very time consuming, going into hospital for it every time, its meant to take 4 hours but it takes far longer because of blood tests etc. but i would recommend you trying this before the op as i was very sick before i started the infliximab and the op was on the cards for me but thank god the infliximab worked wonders =].

best of luck

Thanks for the advice. Anything that works would be great at this stage!!

Berty

Quick update regarding my OH.

She is about to be discharged from hospital after having part of her bowel and 50cm of her small intestine removed following severe inflammation caused by Chrons disease.

This was discovered, not by her Chrons Consultant, but by a surgeon after she admitted herself to hospital with incredible pain(building up over the months).

The concensus was that the Colonoscopy only looks at the inside of the bowel whereas the inflamation on the small intestine was on the exterior of the intestines and the colonoscopy would never pick up on it.

The bowel was removed because that is where the chrons disease was infecting causing ulceration.

The 50cm was removed because she had large inflamation(bigger than a tennis ball) a knock on effect of the Chrons Disease nearby.

It was discovered during a CT scan on the 16th August only after she admitted herself to the Regional Hospital in Limerick.

Her uncle has his bowel removed the day before and the other girl in the ward had 40cm removed the same day.

She was using Humira injections, which I was injecting her with myself. (trained by nurse). Her sister also has Chrons and is on Humira as well.

My OH is 31yrs old. Her time was NOW to have it done. She is glad it is over with for now.

She has a stoma bag but is recovering rather well and should have the reversal done in 2-3 months.

I wish anybody best of luck who is worrying about this disease. For some it is manageable. For some it is time to have the operation done.

She is leaving tomorrow but not coming home yet. Her mother is a retired nurses aid and her sister in law is a carer so she will move in with her mother for another 2-3 weeks before I get her home to me which will be 1.5 months out of the house.

CarrickMcJoe

Good to hear your OH has the chance to reverse the bag. That time away will do her good to adjust as she will have bad days too, I was there but my stoma is now a permanent fixture since 1996.

Wish her all the best and get well soon......

pinkyc

could someone explain to me what the humira injection is? what it does? and where you inject it? as this is where im going next instead of the infliximab. I went to my specialist and it wasnt explained to me i was just told that we'll try it and that the nurse will train me. but im very confused.

thanks guys

Berty

pinkyc wrote: »

could someone explain to me what the humira injection is? what it does? and where you inject it? as this is where im going next instead of the infliximab. I went to my specialist and it wasnt explained to me i was just told that we'll try it and that the nurse will train me. but im very confused.

thanks guys

I dont know what infliximad is so I will just refer to Humira.

It can come in the form of a pen or a syringe. Some people are prone to either or. My OH was happy with the syring because I was performing the injection myself, then she became partial to the pen. Her sister is partial to the pen and will refuse the syringe if the chemist hands it over.

The pen is basically something you hold to your skin and press down and "bobs your uncle".

My OH used to inject into her abdomen but not always in the same place. Sometimes she would have to alternate from one side to the other.

pinkyc

thanks Berty, sounds scary but it must be done!
hope all is well xD

LucyBliss

Berty, best of luck to your OH. I think what hit me most of all after my surgery was that the horrible pain and unsettled feeling I'd been carrying around in my innards for so long was all gone. Okay my abdomen was all bandaged and didn't feel like it belonged to me at all for a while, but being free of pain made me so happy and I hope it's a similar situation for her.

I have a permanent illeostomy and I can honestly say it's changed my life for the better. It may seem odd but it's very liberating to be able to take my guide unit on a long hike without the exercise making me need the toilet in the middle of nowhere. Now a nice cup of tea before setting out and it's as quiet as anything and to be honest, considering how bad the pain and incontinence was before, having to empty the bag in odd places is no problem whatsoever.

Not everyone feels the same way of course, but it can be the start of something good.