Crohn's Disease

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.

Tony H · 20-09-2014 12:51pm

camroc76 wrote: »

My gastro guy has me taking both as a prep for a full scope every time....pico in the morning and Klean prep in the evening.

Delightful stuff !!

I have a colonoscopy next wednesday and I'm on the same one dose of picolax 4mp one at 6pm and 2 lts of kleanprep at 8pm :eek: , cant handle the klean prep at all its vile and makes me throw up , i think we might have the same gastro/sadist ,
I'm in a major flare up at the moment so I'm running on empty as is , hopefully I wont need the kleanprep after the pico .

patnor1011 · 20-09-2014 1:47pm

Hmmm. I am kind of spared of kleanprep and its wonders as I have bag and there is no point of taking it. My last 2 or 3 colonoscopy were without taking anything prior.

princess-lala · 21-09-2014 9:35am

RockLady wrote: »

a result of costochondritis,

I have this too

my gp thought I was having a heart attack the first time I went with it. Straight to a&e and ut was diagnosed a few hours later.

RockLady wrote: »

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.

I'm back with my dietician Wednesday week and this is probably what she's gonna try me on

The_Conductor · 21-09-2014 10:12am

patnor1011 wrote: »

Hmmm. I am kind of spared of kleanprep and its wonders as I have bag and there is no point of taking it. My last 2 or 3 colonoscopy were without taking anything prior.

I don't have a bag- but I've had so much surgery- that skipping my imodium the previous day (I take 8 a day) is the equivalent of kleenprep for me...........

princess-lala · 24-09-2014 6:25pm

fml!!

They're back to another few possible different diseases along with the auld crohns.

As if I didn't have enough shīte going on -pardon the pun

CathyMoran · 24-09-2014 7:25pm

princess-lala wrote: »

fml!!

They're back to another few possible different diseases along with the auld crohns.

As if I didn't have enough shīte going on -pardon the pun

I have seen that that people tend to have a few illneses together - my husband and I both have multiple illnesses.

OUTDOORLASS · 24-09-2014 9:49pm

Yep, I would agree with you Cathy.......

princess-lala · 24-09-2014 10:04pm

I have loads but christ its like a new one appearing monthly.

Im fooking sick of it

OUTDOORLASS · 24-09-2014 10:08pm

And, like, they are very real illness....It gets to a stage where sometimes, u say, I cant go to the Doctor again, will
he/she say to herself....what is it today......but these are very real problems....and not in your head.
I think, once you have some kind of disease that hits the immune system, and it turns on itself......it can hit
multible organs.....causing lots of problems.....

princess-lala · 25-09-2014 12:45pm

I'm starting to think I've no heart cause it seems to be the only organ not involved

Tony H · 25-09-2014 1:05pm

Well I had my colonoscopy yesterday and I'm in bed feeling sorry for myself all aches and pains , the prep went well , I took a split dose of picolax (did not take the kleenprep) and was all clean inside

, brought into the theatre , was given the anaesthetic and o2 , waited to drift off to happy land ,

@:mad: and was just told it wont be much longer and they continued ,
Is this normal , it happened to me before and I was given more sedation but this time I was just to tired and sick to stop them and had to endure ,
should I complain or just let it go ,
as it is im not too happy with my GI , until recently I have never had a bone density scan , I was sent for one by my new gp who is great and really proactive and after the scan I was told my bone density was very low and that i should have been sent for a scan years ago ,apparently the GI in CUH sends all his crohns/colitis patients for one every two years,

ok rant over

thanks for reading

Tony

patnor1011 · 30-09-2014 6:20pm

She need all the support she can get, I wonder if we can somehow join her:

http://www.independent.ie/irish-news/courts/crohns-disease-sufferer-asks-high-court-to-quash-governments-decision-to-set-up-irish-water-30627166.html

HowPedantic · 02-10-2014 2:23am

Hi everyone, just thought I would throw in my diagnosis story to the pile,
Around the winter of 2012, I started getting bad pains in my knees, which we had just assumed was damage I had done due to sport, and as it wasn't constant or anything, we let it go and forgot all about it. Then, last summer, which was 2013 it came back again, and I went for blood tests as my GP thought that it might be arthritis, blood tests came back negative. In the September of 2013 I started to get really bad mouth ulcers, and tonsillitis that occurred every three weeks or so for months at a time, I was extremely tired and seemed to just lose interest in everything. Over Christmas 2013, I started having loose bowel movements with lovely mucus, which then transitioned to bloody diahoerra from about February 2014, kept going for blood tests with the GP which kept coming back all clear, and then in May 2014, I finally fessed up about my bowel movements, and my GP had said "Crohn's" straight away! She referred me to the hospital for an appointment, but I started to get really bad, I lost nearly three stone, was going to the bathroom up to every twenty minutes - day and night, I was so tired and couldn't move, so my mam brought me to A&E in July, and I was admitted for a week, they did a colonoscopy and diagnosed me with Ulcerative Colitis "which may be Crohn's" and discharged me on Prednisolone and Pentasa, after three weeks I still hadn't improved and we went back to see the consultant, who changed my medication from Pentasa to something else, I don't really remember! Over that next week, it's kind of hazy, I was in so much constant pain, I couldn't sleep, I couldn't even go to the bathroom, my mam had to carry me because I was so weak and I was getting such muscle cramps in my legs that I couldn't even bend my legs to sit on the toilet! One morning, mam had enough so she brought me back to A&E and as soon as they took my blood pressure, I was hooked up to a ECG and had chest X-Rays done as my heart was basically giving up. My haemoglobin was so low that I needed a blood transition, (needed one - didn't get one). After a couple of hours, it calmed down once I got the IV steroids, and they started looking for other treatment. At that time, they sent me to Beaumont to see Prof. Patchett (anyone seeing him too?) and he prescribed me to start Infliximab! I've had two infusions already and I'm doing much better!

That's my long winded story - apologies!!

camroc76 · 06-10-2014 1:22pm

Tony H wrote: »

I have a colonoscopy next wednesday and I'm on the same one dose of picolax 4mp one at 6pm and 2 lts of kleanprep at 8pm :eek: , cant handle the klean prep at all its vile and makes me throw up , i think we might have the same gastro/sadist ,
I'm in a major flare up at the moment so I'm running on empty as is , hopefully I wont need the kleanprep after the pico .

Perhaps Tony !!!..Nothing to "Crowe" about

On another front, I was diagnosed with "Carcinoma Insitu" of the colon and rectum and therefore am having an ileostomy next month....bit of shocker:eek: but nothing I can do about it now..acceptance is the key now i guess !.

Meeting the stoma nurse on Thursday next and then we await the big day:eek::)

Gael23 · 06-10-2014 9:46pm

http://www.independent.ie/irish-news/courts/crohns-disease-sufferer-asks-high-court-to-quash-governments-decision-to-set-up-irish-water-30627166.html

Might be of interest to some people here.

OUTDOORLASS · 10-10-2014 3:53pm

Took my shot of Humira last night. Noooo energy today....and major case of the munchies....All I.m doing is going
from press to fridge trying to get energy from something. Just as well I have circuit training tonight. I might work off
some of the calories I have eaten....Happy W.end to all....

The_Conductor · 10-10-2014 6:51pm

I'm the same on cortisone- eating rings around me here........
Its almost funny how we go hunting out food when we're on meds........

OUTDOORLASS · 10-10-2014 7:32pm

Mmmmmm..Mr Conductor....if you are on cortisone that means things are not good in your camp. Hope you get on top of it soon.....

The_Conductor · 10-10-2014 7:51pm

OUTDOORLASS wrote: »

Mmmmmm..Mr Conductor....if you are on cortisone that means things are not good in your camp. Hope you get on top of it soon.....

Thanks- doing my best here.

Northern Monkey · 11-10-2014 8:28am

OUTDOORLASS wrote: »

Took my shot of Humira last night. Noooo energy today....and major case of the munchies....All I.m doing is going
from press to fridge trying to get energy from something. Just as well I have circuit training tonight. I might work off
some of the calories I have eaten....Happy W.end to all....

When I first started on humira I had to spend the whole of the next day on the sofa it wiped me out so badly. Thankfully that died off after about 2 months use.

OUTDOORLASS · 11-10-2014 9:41am

Morning...I.m on it with about 2 years, and I find the following day after a shot to be fairly tough, energy wise.
My GP.s daughter is on it for something else, and she has said to me that she can tell when the daughter has taken it, because of the look of the grey look on her face. I am gone back to circuit training trying to make a bit of energy.
The experts say you have to use energy to make energy, so I.m trying to make a bit more for myself !!!!!

patnor1011 · 13-10-2014 7:32am

Humira. What to say. I was on it for about a year and few months. What I can say for sure, I got some side effects and cant get rid of it even that it is about 2 years since I stopped Humira shots. It is like some not painful wounds on my head, like crust and when I scratch it it just come off along with a lot of hair. At some point in taking it I had a bald spots on few places on my head. Hair started grow there again but spots are still there, some days bigger some days smaller. Also a lot of tiny tiny particles of skin or I believe it is like dandruff is coming off my hair no matter how many times I wash them, tried many different shampoo even expensive organic ones but nothing seems to work.

One more thing, I had to have my wife to shoot me with Humira, I simply could not do it myself. At one point I was getting 4 injections at once. If I remember correctly it was 4/4/2/2 and then 1 every 2 weeks.

The_Conductor · 13-10-2014 8:06am

Its not necessarily the Humira- you can get Crohn's externally and often it presents on the scalp like this. I had a very interesting discussion with my GI about it over a decade ago (he told me alopecia areata was an external manifestation of the Crohns). Mine died down over time- it recurred a few years later and died down again (eventually). Its not an issue at all for me now (and hopefully it stays that way!!!!).

Talk to your GI- its actually quite common in Crohns. If your GI is any good at all, they'll be well aware of it, and probably have some suggestions for you.

princess-lala · 13-10-2014 10:25am

Is it too much to ask for to have a normal body?? Fűck this stupid disease :mad:

The_Conductor · 13-10-2014 10:56am

princess-lala wrote: »

Is it too much to ask for to have a normal body?? Fűck this stupid disease :mad:

What I keep telling myself- is life isn't fair- and while I wish I could transplant my brain into the body of a fit and healthy person- I will not let this disease define or defeat me........ We have good days and we have bad days- and on the good days lets live life to the max- and on the bad days- lets look forward to our next good days........

Its very easy to just get depressed and fed-up over everything- its far harder to try and get on with things (especially when you're feeling like crap- and just want to curl up in a ball and wait for the pain to subside).

I know 'think happy thoughts' isn't exactly rocket science- and isn't the most helpful- but I genuinely think that the only way to live with Crohn's is to and not let it beat you- and to take joy and happiness in the little things.

Hugs.

princess-lala · 13-10-2014 11:29am

In fairness I shouldn't complain because I have more good days than bad but im up all night with the pain.

Three diseases all give pain! Feck it

Tomorrow is a new day

The_Conductor · 13-10-2014 11:39am

princess-lala wrote: »

In fairness I shouldn't complain because I have more good days than bad but im up all night with the pain.

Three diseases all give pain! Feck it

Tomorrow is a new day

It isn't fair- and when you're tired from being up all night- everything seems worse because you're knackered, ontop of everything else....... Hugs.

Marzipan85 · 13-10-2014 5:00pm

Have people here tried the GAPS or Specific carbohydrate diets? I've been reading up about them. I suffer from an anxiety disorder, so after one day of trying to not eat complex carbohydrates I was so stressed out I decided it wasn't worth it. I've heard these diets can almost be a cure for Crohn's. Is this true in anyone's experience Here? [I don't have Crohn's, but get sort of a feeling of inflammation when I eat processed breads and other starches]

The_Conductor · 13-10-2014 5:14pm

The thing is- what works for one person with Crohn's- won't necessarily work for another person. We have different trigger foods- and treatments- and what may be a miracle for one person may as well be a placebo for another.

Personally- through trial and error- I have found foods with maize (think cornflakes, various breads etc)- to be a massive issue for me. Similarly- some common food ingredients- like carrageen which is often used as a setting agent in yoghurt or icecream- is a killer for me.

By avoiding these 'trigger foods'- I can, by and large, have an unconstricted diet. However- if/when I'm having a flareup- I then have to really take a cull to my diet- during remission, I have a much more varied diet.

I investigated the SCD with the intent of following it- but there are too many foods included in it that are serious triggers for me- e.g. it says you can eat

Vegetables (except canned) - this is a load of bollox for someone with Crohns
Legumes - some are ok- some aren't
Unprocessed meats, poultry, fish, and eggs - nonsense for Crohns- red meat is a serious issue for many of us
Natural cheeses - can be a trigger food
Homemade yogurt fermented at least 24 hours - can be a trigger food
Most fruits and juices without additives - nope, not on your nelly.
Nuts, peanuts in the shell, natural peanut butter - nuts tend to be ok
Oils: olive, coconut, soybean, and corn - corn oil is a specific no-no for Crohns- so this could be dangerous for you
Weak tea and coffee - unless its a trigger food- it doesn't tend to be an issue
Unflavored gelatin - hmmm- flavoured jelly is fine too?
Mustard and vinegar - depends- if you're in a flareup, these could be lethal
Saccharin - probably the biggest no-no of all........

So- if you were to blindly follow the SCD diet- I'd be quite surprised if you didn't hospitalise yourself within a week or two.........

The_Conductor · 13-10-2014 5:22pm

Here's a link to one of the websites that is promoting the specific carbohydrate diet to Crohn's sufferers: http://www.webmd.com/digestive-disorders/features/specific-carbohydrate-diet-review

I would just like to reiterate- in my opinion its a heap of nonsense- and if I followed it- I know I'd be in hospital before the end of the week.

The best course of action in my opinion- is to get to know your trigger foods, and your body- and recognise when you're at risk of a flare-up (high stress situations etc)- and when you're in a risk period, curtail your diet and take appropriate precautions (including getting as much rest as possible- and trying to minimise your stress levels).

I'm sure some people probably think the SCD is a miracle- and indeed, it may be for them- but we are all different- and what works for one person, may kill another person...........

Crohn's Disease

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