Crohn's Disease

degrassinoel · 26-08-2014 8:29pm

I got pretty much the same treatment for mine, ended up so tired, sick, hungry and frustrated that by the time it was my turn to get the injection thing put into my arm i refused it and told them to go ahead without sedative. Wouldn't recommend, but glad i did as the Doctor could tell me as she was doing it what was going on.. again a bit disconcerting.

Anyway turns out my bowel is so scarred they can't start me on any treatments bar an operation to remove the affected part. So i refused.. again.

I've had loads of time to think about it, and it's not the first time it was suggested. I just dont see the point in removing that part of the bowel, going through months of rehab and wearing/using a C-Bag - (the problems that in itself can cause are scary) only for the disease to still be in my immune system and have a 50% chance of recurring back in the exact same place the first part was removed.

Maybe this belongs in the conspiracy theories forum, but they just seem to push for this operation all the time, they (beaumont) are a learning hospital and every Doctor in F.Murray's clinic always seems to want to see what my innards look like.

I say bollocks to it, if it comes to a choice of living with crohn's or having an operation and still living with crohn's, i choose living with it without the operation.
You can probably tell by my attitude that i haven't had a flare up in at least 3 months and you'd be right too. But as bad as it gets when i am, i'd still like to keep my bits and hold out for an actual cure. Remote and all as that may seem.
Sorry if i sound really pessimistic or pigheaded or indeed put anyone off getting a needed operation as my own crohn's isnt nearly as bad some people's. So yeah, i'm ranting but we all need to sometimes. I've found that literally nobody knows the pain you go through like someone who's experienced the exact same thing, people, doctors even can empathise but they dont truly know how cruel this disease can be.

Turtwig · 27-08-2014 2:19am

Feel for ya Noel. Surgery does give some people a new lease of life for a while. It's a really big decision.

I think the same kind of applies to us. We can empathise too but at best all we can do is approximate what it's like for others. Each individual experience is different.

The_Conductor · 27-08-2014 6:10am

I'd echo what Turtwig has said.
I ended up in surgery- without really having had the option to consider what it meant- when I was first diagnosed. They reckon I had active Crohn's for over 10 years at that stage, which is why the damage was so extensive. Had I had the opportunity to stop and think about it- I probably would have been terrified. However- I managed to sleep for the first time in years- where previously I had to curl up in a ball to try to minimise the pain- and often deliberately lie down on the floor at night- stretching myself against the outer wall of the house to try keep myself cool.

Surgery for me- I can honestly say- was life changing. I actually had a life for the first time ever.

Yes- the Crohn's recurred- and to an extent that I've set some records for the amount of surgery I've had- but the freedom from the constant pain- and the ability to eat again- actually gave me a life.

Don't dismiss it out of hand. Discuss it with your GI consultant- discuss your concerns- and see if he/she can allay them. Surgery can change your life startlingly for the better.

Turtwig · 28-08-2014 1:25am

http://www.thejournal.ie/councillors-water-charges-extra-bowel-conditions-1633516-Aug2014/?utm_source=shortlink

€4.33 per 1000 litres used is the figure I've seen quoted.
So, I decided to do the math for just our toilet visits.

Assuming 7 litres per flush. Each litres is worth €0.00433 so 7 times that for a flush: €.03.

Now assuming a good flare day that's about 10 flushes. (Really big underestimate I'm sure most would agree but it makes the math easy.)

That means that our condition would cost another 30 cent per day that estimate is on the really low end of the scale. I'd say some folk are looking at €1-€2 per day. (Go every half hour for eight hours would 16 flushes)

Over the course of a month that's €9 using my light example. Or somewhere between €9-€60. Some of us or fortunate that it never lasts a month, others are unfortunate enough that it's better to count by proportion of years or full years.

That's quite a hefty add-on.

The_Conductor · 28-08-2014 6:42am

Remember that you only have until the 1st of September to make a submission on the Water Charges.........

Two bodies to make your submission to- the Commission for Energy Regulation

http://www.cer.ie/document-detail/CER-Water-Charges-Plan-Consultation/979

And Irish Water:
WSSP@water.ie , by post to Water Services Strategic Plan, PO Box 860, South City Delivery Office, Cork City or by phone at 1890 278 278

Apparently they have received fewer than 100 submissions from the country as whole- if this affects you- you need to speak up..........

Deadwards.com · 28-08-2014 9:00am

Thanks for the info The_Conductor I think it would be great if all of us here on this forum were to send in a letter given the small number of submissions to date.

If anybody has good writing skills, perhaps a draft letter could be posted here to make easy for all of us to simply copy and paste into a letter to send off.

just a thought and hello everyone

princess-lala · 29-08-2014 10:56am

Its MRI day!! Bloody contrast is vile

Bring back the former healthy lala

The_Conductor · 29-08-2014 1:04pm

Lala- hope it all has gone well for you.

Turtwig · 29-08-2014 2:05pm

Hugs for lala,

Hope you're doing well and the contrast makes it worth it.

princess-lala · 29-08-2014 4:44pm

All done! Came out in a lovely rash after!

Dink123 · 01-09-2014 2:18pm

Hi guys, this is a fantastic thread, with real life stories, which makes it easier to understand. I am not a crohns / colitis patient, However, my daughter is. She was diagnosed just under 2 years ago with crohns and had very severe symtoms. Since then we she has been on a roundabout of medication e.g. Pentasa, Imuran, Steroids, Humira, Remicade and Simponi. In addition to this she had her tonsils removed during the summer to alleviate some of the pain she was getting in her mouth. We asked her specialist recently to conduct another colonoscopy as we felt it must be something else if all these meds aren't working. The second diagnosis came back as ulcerative colitis!!! Back to square one again.

My poor girl is trying to sit her leaving cert, but is having severe symtoms again and cant sit through a class of fifty mins without having to leave. Last week was her first week back and she had to come home early because her symtoms were so bad. My heart goes out to her!!! As she says at this stage "she is just sick of being sick"!!!

I am just wondering does anyone on her recommend a specialist anywhere in Ireland, just to get a second opinion. Our own specialist does 6 months on and another guy comes in and does the next 6 months and then vise versa. I feel at times that they haven't got a holistic picture as to whats really going on!!!

Sorry guys if Ive been going on so much. Im just heartbroken, knowing what she is going through and Im trying my best to support her as much as I can.

shalalala · 01-09-2014 2:51pm

Dink123 wrote: »

Hi guys, this is a fantastic thread, with real life stories, which makes it easier to understand. I am not a crohns / colitis patient, However, my daughter is. She was diagnosed just under 2 years ago with crohns and had very severe symtoms. Since then we she has been on a roundabout of medication e.g. Pentasa, Imuran, Steroids, Humira, Remicade and Simponi. In addition to this she had her tonsils removed during the summer to alleviate some of the pain she was getting in her mouth. We asked her specialist recently to conduct another colonoscopy as we felt it must be something else if all these meds aren't working. The second diagnosis came back as ulcerative colitis!!! Back to square one again.

My poor girl is trying to sit her leaving cert, but is having severe symtoms again and cant sit through a class of fifty mins without having to leave. Last week was her first week back and she had to come home early because her symtoms were so bad. My heart goes out to her!!! As she says at this stage "she is just sick of being sick"!!!

I am just wondering does anyone on her recommend a specialist anywhere in Ireland, just to get a second opinion. Our own specialist does 6 months on and another guy comes in and does the next 6 months and then vise versa. I feel at times that they haven't got a holistic picture as to whats really going on!!!

Sorry guys if Ive been going on so much. Im just heartbroken, knowing what she is going through and Im trying my best to support her as much as I can.

I am with Dr McCarthy in James'. They also do 6 month rotations for the registrars but you can request to see the consultant every time. The IBD nurse Una is also lovely and takes your calls or gets back to you regularly.

princess-lala · 01-09-2014 7:47pm

I go to Dr Kirca in mullingar. As a public patient. I've been under him since diagnosis in February. I actually see him every 6 weeks due to my problems with medication.

Also the IBD nurse Zena is amazing, if she doesn't answer her phone she will ring you back within the hour.

Turtwig · 04-09-2014 5:59pm

Having one of those days where I'd just love to get a knife and cut out a portion of the intestine.

Probably a good thing I don't know how to do actual surgery.:o

princess-lala · 04-09-2014 8:08pm

Turtwig wrote: »

Having one of those days where I'd just love to get a knife and cut out a portion of the intestine. Probably a good thing I don't know how to do actual surgery.:o

Oooh me too

RockLady · 07-09-2014 2:06pm

Hi all,

Been reading this thread for a while now and wow, some of you have really been through the medical mill. This post may be long or short depending on mods (feel free to snip as appropriate) and I'm not sure if youse can help but maybe you can at least point me in the right direction. I'll try not to blah blah blah too much.

I'm 35. I was first treated for depression at 19 and after a particularly bad bout 5 years ago, I'm on long-term medication for it. Since the age of 17, I've had abdominal cramps and pain, bloating and diarrhoea/occasional constipation. It was never significantly horrific enough to have me off work or anything, more tiring and bothersome. After Christmas 2013 the pain became significantly worse, sort of vice-like, along with diarrhoea a few times a day. In February the night sweats started, every night. I went to my GP in March, he didn't seem that worried, said it was IBS and prescribed Colofac. He did not perform blood tests or take stool samples (for the record, my stool has no blood that I can see but lots of mucus). Not sure if it was coincidence or if the Colofac actually worked but 5 days after I started taking them the pain finally broke and stopped. The nightly night sweats stopped in April but still happened a couple of nights a week (and still do up to the present), by this stage I'd started getting aches in my lower back, shoulders, hips and wrists. The abdominal pain started coming back in early May along with the appearance of swellings under each of my breasts, which are tender more than painful and one has a moving lump in it. So I went back to my GP with my list of random weirdness and after a minor meltdown in his office (by me obviously

), he prescribed Spasmonal which helped a little initially and then didn't. He referred me to a consultant and after some to-ing and fro-ing - including a visit to A & E in late May when the pain got really bad and the doctor on duty said the pain in my back was because "the blood wasn't getting between the vertebrae" and I should stretch more, as well as complete loss of appetite last month when I lost about half a stone - I had a colonoscopy on Friday. The doctor who performed it said there was nothing to see especially as my bloods were fine, diagnosed IBS and bounced me straight back to my GP.

What's my point? Well, along with other horribleness including IBS and underactive thyroid we do have Crohn's disease in the family. The consultant said I was a little old to be diagnosed with Crohn's but my first cousin was only diagnosed in May and is 34 and had similar symptoms to me. I'm really freaked out by these swelling under my breasts and the night sweats and the joint pains, which no doctor seems to be!! I swear someone said to me that the sweats could have been because it was summer and very warm at night. I still have all these aches and pains and sweats and lumps and tiredness, what I don't have is a clue as to what to do next. All and any advice would be appreciated. Apologies for the essay and thanks for reading.

RL

PS: that Movi Prep stuff is rotten!!!

The_Conductor · 07-09-2014 3:04pm

Rocklady- if you haven't already been to a gastrointestinal consultant- make an appointment to see one. As for your other symptoms- keep at your GP- and hopefully he/she will keep going until they come up with something.

As for blood and stool samples- neither can definitively diagnose Crohn's Disease- certain results may suggest it- but they can just as likely be explained by other factors- the lack of having them done doesn't really mean much.

If your colonoscopy was clear- that means there was no trace of disease in that part of the gastrointestinal tract that the scope was able to see. That is the extent of what they are saying- nothing more, nothing less.

Unfortunately- it is the case that you are going to have to keep at your GP who will treat your symptoms as they occur- and hopefully at some stage down the road there is the pertinent investigations done, to determine what is causing the symptoms.

RockLady · 07-09-2014 3:22pm

The_Conductor wrote: »

Rocklady- if you haven't already been to a gastrointestinal consultant- make an appointment to see one. As for your other symptoms- keep at your GP- and hopefully he/she will keep going until they come up with something.

As for blood and stool samples- neither can definitively diagnose Crohn's Disease- certain results may suggest it- but they can just as likely be explained by other factors- the lack of having them done doesn't really mean much.

If your colonoscopy was clear- that means there was no trace of disease in that part of the gastrointestinal tract that the scope was able to see. That is the extent of what they are saying- nothing more, nothing less.

Unfortunately- it is the case that you are going to have to keep at your GP who will treat your symptoms as they occur- and hopefully at some stage down the road there is the pertinent investigations done, to determine what is causing the symptoms.

Hi Conductor, thanks for the quick reply!

The consultant mentioned above was gastrointestinal, sorry, I should have said that.

Apologies for the moanyness, if that's how it comes across, I haven't had it anywhere near as bad as some people on here. But I just feel so dismissed. I was sure a colonoscopy would show SOMETHING at least, and when it didn't they said it was IBS and didn't want to know any more. IBS runs in my family and it is nothing to be made light of, but I always thought it was the last conclusion arrived at once tests have been done for everything else.

I work part-time in an animal rescue and training facility. We always say to people that no one knows their dog better than you: if you think there's something wrong with your dog you should get it checked out and keep pushing. The same applies to one's body. But I'm really tired and I have days where I feel 90 years old. I'm only 35 - I don't like spending my time existing instead of living.

The_Conductor · 07-09-2014 3:29pm

I know exactly what you're saying- there are days where I lean against a wall in the bathroom in work, and close my eyes, just to get a rest.

As I said- a colonoscopy is limited to what it can actually see- and just because it didn't find anything- does not necessarily mean nothing is wrong.

If you keep going back to your GP with your symptoms- he/she will have to at very least treat your symptoms (which is as good as it gets for most of us with Crohn's).

Don't be afraid to moan- don't even think of it- most of us here know what you're going through and can empathise.

Turtwig · 07-09-2014 3:50pm

Hi Rocklady,

To use the clichéd expression crohn's is a relapse remission disease. There may indeed be times where there's no active inflammation in you - blood tests, biopsies they all show up clear. Crohn's forming in the late 30s is very rare but it does happen, but more to the point if you were having symptoms of crohn's when you were younger then your age now for diagnosis is irrelevant if you simply weren't diagnosed when it was active. In other words, the symptoms aren't new so your age for diagnosis seems rather a moot point.

Regarding clear colonoscopies. I get those a lot. Inflammation occurs higher up in the gastro-intestinal tract. Do you know if you had a full GI investigation i.e from mouth to anus? Or more pertinently if there was any cause for such an investigation.

IBS can be chronic and debilitating for some too. So it's possible that's exactly what you have.

I'd Badger your GP, or possibly, if affordable, seek a second opinion. Make a huge list of your medical history/experiences including family history of diseases, print it out and show it to them. Keep in mind, they may be spot on in their assessments. Some people just have more frustrating bodies than others. It's why growing up sucks!:(

Either way, hope you get some answers and relief soon,
Best of luck,

RockLady · 07-09-2014 5:25pm

Hi folks,

Thanks for the advice, much appreciated. Good to know you guys are here! A friend of mine made the point to me that Crohn's disease, UC and the like have been featured in more articles of late, you know, this celebrity has UC, that well-known person has Crohn's, etc. Doctors may be already tired of seeing people who think they may have it?

I made that full list of family history and personal symptoms for my GP the last time I saw him, in May, he barely listened. Did the same with the GI consultant appointment though it was actually the registrar or SHO I saw, not sure which yer man was. The registrar/SHO barely glanced at what I'd written, I even brought OH with me too so that I didn't forget anything. I've kept food diaries, I can't find any one thing that disagrees with me. I went gluten free for two months, no results there either. OH didn't enjoy that last period...

I definitely have not had a full GI investigation, of late anyway. When I first developed the abdominal pain and what-have-you at 17, I had an endoscopy 2 years later (waiting that long was a common feature then too) and the doctor said to me that I had gastritis. His advice at the time was "find the foods that irritate you, lose some weight, and learn to live with it".

princess-lala · 08-09-2014 2:40pm

I have had IBS for donkeys years, its one helluva pain in the arse - pardon the pun

Its only this year that my pain has gotten worse, to the point I cant work. After three admittances to hospital I got a definite diagnosis of chrons. There was a lot of is it or isn't it before then.

Out of the 4 colonoscopy's this year, one was clear but my consultant didn't do it himself so repeated it the following day himself and found inflammation.

I found Coloflac good for the spasms I had in April but absolutely useless now. I also have fibromyalgia, alot of studies show people with fibro have an intolerance to wheat and gluten so I cut that out with the help of my dietician and found the results amazing.

Now I'm too much of a pig to keep it up - only cos I'm having very little pain now!

RockLady · 11-09-2014 9:57am

princess-lala wrote: »

I have had IBS for donkeys years, its one helluva pain in the arse - pardon the pun

Its only this year that my pain has gotten worse, to the point I cant work. After three admittances to hospital I got a definite diagnosis of chrons. There was a lot of is it or isn't it before then.

Out of the 4 colonoscopy's this year, one was clear but my consultant didn't do it himself so repeated it the following day himself and found inflammation.

I found Coloflac good for the spasms I had in April but absolutely useless now. I also have fibromyalgia, alot of studies show people with fibro have an intolerance to wheat and gluten so I cut that out with the help of my dietician and found the results amazing.

Now I'm too much of a pig to keep it up - only cos I'm having very little pain now!

Mmmm food

Though I'm so bloated at the moment. I've totally gone off my food yet seem to be expanding. Not sure how that works.

Would you guys be able to advise on how long biopsies usually take to come back - if there's even an average - and how you get them: does the consultant tell you, does your GP get them, etc. I don't know how it all works. My experience with GPs, up to this year anyway, was limited to repeat pill prescriptions and consultant-wise I went to a psychiatrist a few times for treatment for my depression, but that's about it...

Northern Monkey · 11-09-2014 6:00pm

RockLady wrote: »

Mmmm food Though I'm so bloated at the moment. I've totally gone off my food yet seem to be expanding. Not sure how that works.

Would you guys be able to advise on how long biopsies usually take to come back - if there's even an average - and how you get them: does the consultant tell you, does your GP get them, etc. I don't know how it all works. My experience with GPs, up to this year anyway, was limited to repeat pill prescriptions and consultant-wise I went to a psychiatrist a few times for treatment for my depression, but that's about it...

I've only had it done once and got it done the week before Christmas (so they may have taken longer as a result) I got the results about 4 weeks later and had to go back to the consultant for them, although the appointment also involved a general discussion about my colonoscopy.

I remember bricking it at the time as the consultant told me they would be in touch in about a month to arrange an appointment and then I got an appointment card posted out within 2 days!

patnor1011 · 16-09-2014 3:52pm

I was diagnosed with Crohn's at my 36 birthday.

Not a present you wish for. Some may remember my posts from 4,5 years ago. I did not posted much as I am in quiet phase thank god for that. The only thing changed that my temporary illeostomy (I was told I get it for few months) was declared permanent and I was told that I will be better off living with a bag. Reversal may trigger all my previous problems back so I decided that I am not going to risk that, at least not soon. My skin under bag is somehow damaged, no wonder after such a time and I went from one bag in 3 days to having a new one every day. Life with bag is not what I imagined, and do have its own set of challenges but it is survivable. Plenty of other people suffer more.

I was only thinking about one thing and that is main reason why I am back here today. I learned that there is being list prepared by Minister for Irish water with specific medical conditions which will get some relief from upcoming water charges. I cant imagine better candidate than Crohn's and similar conditions. I still remember well when I considered a good day when I had to run to toilet only about 30 times while 50-60 was a norm. It may sound funny but considering amount of water used in toilet I would expect we will get on that list. Even now I go quite often as ileostomy is not too big and I rather have it emptied as much as possible.
What are your thoughts about this issue?

Turtwig · 16-09-2014 3:58pm

I wouldn't hold my breath. When it comes to state supports we're not really recognised as having a lifelong illness. In fact, we're barely recognised at all.

My pessimistic expectation is that those on the LTI scheme will get water allowances. Those not on it won't get them.

patnor1011 · 16-09-2014 4:05pm

Oh well, I see now, I am reading back this thread and see.
Well, some other european countries are little bit better in treating their people with this type of illness

I know at least one where crohn or illeostomy are considered as 50% invalidity and people get appropriate entitlements. And that is actually one of the poor countries.

Gael23 · 19-09-2014 8:42pm

Saw something in the news during the week that water charges for people with certain medical conditions will be capped. I imagine people with crohns will have to be included in this

The_Conductor · 20-09-2014 8:55am

ryanf1 wrote: »

Saw something in the news during the week that water charges for people with certain medical conditions will be capped. I imagine people with crohns will have to be included in this

Initially- people will have to self declare medical conditions- there is no defined list of medical conditions. The rumours are that in 2017- when water charging really goes live (aka when the government subsidy is stopped)- that there will be a definitive list of conditions covered. Some pundits are suggesting we simply copy and paste the UK list of conditions- which does include Crohn's Disease- however, thats pure speculation.

The full annual bill- when it comes in- will average between 500-600 a year- and for someone with Crohn's (like myself) the bill would be capped at the unmetered rate- that is- if there are 4 people in the property (say 2 adults and 2 children)- the capped rate- is the rate as though there is no meter installed.

The government subsidy (for all households) will be worth over 500m in the next year- this is to be tappered and eliminated over the coming years- and it will be up to Irish Water to be a fully commercial state body at that stage. Of particular concern- is an investment programme they are proposing- costing north of 23 billion- which presumably they assume us consumers will pony up for..........

RockLady · 20-09-2014 12:29pm

Turtwig wrote: »

Hi Rocklady,

To use the clichéd expression crohn's is a relapse remission disease. There may indeed be times where there's no active inflammation in you - blood tests, biopsies they all show up clear. Crohn's forming in the late 30s is very rare but it does happen, but more to the point if you were having symptoms of crohn's when you were younger then your age now for diagnosis is irrelevant if you simply weren't diagnosed when it was active. In other words, the symptoms aren't new so your age for diagnosis seems rather a moot point.

Regarding clear colonoscopies. I get those a lot. Inflammation occurs higher up in the gastro-intestinal tract. Do you know if you had a full GI investigation i.e from mouth to anus? Or more pertinently if there was any cause for such an investigation.

IBS can be chronic and debilitating for some too. So it's possible that's exactly what you have.

I'd Badger your GP, or possibly, if affordable, seek a second opinion. Make a huge list of your medical history/experiences including family history of diseases, print it out and show it to them. Keep in mind, they may be spot on in their assessments. Some people just have more frustrating bodies than others. It's why growing up sucks!:(

Either way, hope you get some answers and relief soon,
Best of luck,

Hi all,

Took Turtwig's advice and decided instead of going back to my usual GP, I'd go get myself a second opinion from someone else. I had my full list of family history and symptoms with the intention of being clear and coherent and calm. I didn't quite end up that way as I started sniffling almost as soon as I got in the door! Luckily, new GP was very nice despite the onslaught of information, listened to everything, went through the family history notes and explained what he thought might fit and what didn't. He ordered a copy of the blood tests done by the Mater to see what they'd done as he wants to do particular ones but wanted to make sure the hospital hadn't done them already, and sent me a copy too. He thinks the swellings on my chest are as a result of costochondritis, apparently it's inflammation in the joints between cartilages that join the ribs to the breastbone. Jaysus.He's ordering an ultrasound to check out the state of my gallbladder etc. and writing to the consultant to request that he do some upper GI tests.

When talking about IBS, he mentioned diet and even brought up FODMAPs. From what I've heard, a lot of doctors go "wha'?" when you ask about that!

RL.

Crohn's Disease

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