Crohn's Disease

degrassinoel

I gave up being a stubborn git this morning at around 6am, after 2 days without much sleep, any food, and a day without being able to hold down even small amounts of water.

I'm shattered, completely and utterly but the doctor seen me first thing, and I've already drank a half pint of icy delicious water.. seriously water never tasted so good.

Ush1

Was doin' grand on the steroids there for a while then had a bit of a mental weekend.(fair amount of booze and awful food)

Terrible stools then Monday and yesterday. Hopefully will improve today, down to 20mg of prednisolone and will drop to 15mg for 5 days from tomorrow.

The_Conductor

I thought this was a joke when I read about it elsewhere- but apparently 'Soylent' is available (where I have no idea). Its a new dietary regimen which while they're not specifically aiming it at Crohn's- its suggested it would help us no end.

One of the hacks in The Register took only 'Soylent' for a week- and while he found himself longing for conventional food- his write-up of his experience is surprisingly positive, which can only be good news for us Chronies.

Link to their review here

If anyone has any idea where to get it- please let us know. Even more pertinently- would it be covered under DPS, I wonder.......

Ps- the reason I thought it had to be a joke- is the film, Soylent Green....... Google it, if you haven't seen it..........

Northern Monkey

Bondlike51 wrote: »

Hi all,totally empathise with all you guys,wouldn't wish what any of you is suffering through.but ye have been diagnosed.despite having numerous fissures,rectal bleeding,pain when defaecating and when not,aptheous ulcers in the mouth,osteoporosis,neuropathy,rashes,headaches,inflammation of large and small intestine,internal bleeding,blood in stool,cramping,bloating and gas,constipation,watery bloody diarrhoera,i'm still being told i dont have IBD but IBS which effectivley means i can do jack **** about any of it.I was recently hospitalised with an absecess on my back for a asecond time in two weeks,put on intravenous antibiotics which they told me was only cntrooling infection,even they suspected i had bowel disease and this was cause of infection.they couldn't do anything cos i had to see my gastroenterologist which i did 2 weeks later and after a struggle i managed to convince them i needed colonoscopy,so they decided to put me on public waiting lst eventhough i've been private for 7 years,so i told them to stuff it cos i was so annoyed .so if anyone knows any good crohns specialist, and not these arrogant totally self adulating specialists who think looking into someones insides and treating as they see such a mediocre diease thereafter is totally beneath them i'd like to hear about them.Thanks

Sorry you are having such a hard time. Where are you based? I go to Dr Niall Breslin at the beacon and find him really good.

Janedoe10

Re exhausted . I was having cap naps for 1-2 hours every evening after work . Hosp clinic when they took bloods were not over concerned with the results however when I got doc to do them my B12 was below normal 100 . I got 6 injections over 2 weeks and I defo see changes already . I do get tired but its manageable .
The brain " fog" is gone , I am not crashing every evening .
Annoying thing is when I was back in the clinic during the 2nd week the consultant still did not think my B12 levels have anything to do with the tiredness .. Christ u would hope they have the answers

Bondlike51

Well at least you're not anaemice,thats good.i'd keep an eye on bloods though regularly,any other symptoms?

The_Conductor

Aside from anaemia- you should get 'iron studies' done too.
God, I'm exhausted too.
To be honest with you- you really should be seeing a haematologist, as well as a gastrointestinal consultant........ Two totally different disciplines.

Turtwig

Hope everyone's keeping relatively well.

Personally finding the heat to be a curse. Fatigue and weakness was always bad but over the past two "heatwaves" in the past month it's been awful miserable. Kind of surreal feeling actually. I have to drink a lot and my throat while much better is still really tender so I'd rather not to be constantly pouring liquid down. Anyway, has anyone here any experience with travelling to another country and sourcing meds, particularly the biologics (Humira), while abroad for a little while. Holland is currently tempting me a little bit but I'm unsure about changing my entire system. I have an excellent support structure here and would severely miss my GP.:(

Stephen P

Jernal wrote: »

Hope everyone's keeping relatively well.

Personally finding the heat to be a curse. Fatigue and weakness was always bad but over the past two "heatwaves" in the past month it's been awful miserable. Kind of surreal feeling actually. I have to drink a lot and my throat while much better is still really tender so I'd rather not to be constantly pouring liquid down. Anyway, has anyone here any experience with travelling to another country and sourcing meds, particularly the biologics (Humira), while abroad for a little while. Holland is currently tempting me a little bit but I'm unsure about changing my entire system. I have an excellent support structure here and would severely miss my GP.:(

Hi. I got Imurel (Imuran) in Spain without prescription. Box of 50 50mg cost €9 compared to box of 30 here cost €17. I was a bit dubious at first and wasn't sure whether to buy them or not but after checking online Imurel is the brand name in Spain. Going back in September and will stock up again

Northern Monkey

Stephen P wrote: »

Hi. I got Imurel (Imuran) in Spain without prescription. Box of 50 50mg cost €9 compared to box of 30 here cost €17. I was a bit dubious at first and wasn't sure whether to buy them or not but after checking online Imurel is the brand name in Spain. Going back in September and will stock up again

You can get it up north for about £12 for 112 tablets, you just need to bring your Irish prescription.

Given the cost of it, I'd say humira would be a different kettle of fish. It's probably one of the few times the DPS works in our favour.

Robin132

Is anyone else having any issues getting questran? I cant seem to get it anywhere or a generic replacement, just wondering if anyone had found anywhere in the dublin/meath area that sells a generic version or anything?

Northern Monkey

Did anyone see the article in the independent this week?

http://www.independent.ie/irish-news/discovery-by-irish-scientists-raises-hopes-of-a-cure-for-bowel-disease-29455499.html


"A RESEARCH team at an [COLOR=#009900 !important]Irish[/COLOR] university has made a breakthrough discovery that could lead to the treatment of a disease that currently has no cure and affects millions of people all over the world.

The research team at NUI Maynooth, Co Kildare, has discovered the crucial role a protein called 'Pellino3' has in controlling unwanted inflammation in the intestine, and is therefore a step closer to protecting against the development of inflammatory bowel diseases such as Crohn's disease.
In people who suffer from Inflammatory Bowel Disease (IBD), the protein is broken down and rendered ineffective.

IBD is notoriously hard to diagnose and treat. However, the breakthrough findings could lead to a straightforward diagnosis of the disease in three to five years, and a possible treatment in a decade.

An estimated 15,000 people in Ireland suffer from IBD – a disorder that causes inflammation of the intestine, the symptoms of which are diarrhoea and abdominal pain. The two major types are Crohn's disease and ulcerative colitis.

The findings are the result of three years' work by the research team led by Professor Paul Moynagh, head of the Department of Biology and director of the Institute of Immunology at NUI Maynooth, with support from collaborators in Trinity College Dublin and University College Cork.

Prof Moynagh said the research represents a major advancement in our understanding of inflammatory diseases of the digestive system.
"Findings like this don't happen every day," he said. "Our aim at NUI Maynooth is to progress this research even further and we look forward to further advancements in the area of immunology."

SIGNIFICANT
However, he stressed the findings are just a step in the right direction and it will be a significant challenge, taking major investment and time, to get to an IBD cure.

NUI Maynooth president Philip Nolan said the findings by Prof Moynagh and his team have the potential to impact positively on many lives.
"Research is about finding answers and solutions to major challenges and difficulties we face."

The findings have been accepted and published in the 'Nature Immunology' journal."

The_Conductor

I posted a link to this separately- sorry should have copied it in here too.

I'll report post my own post- and ask one of the forum mods to merge it with this thread.

degrassinoel

Hey,

I've been putting it off for years and years, and after the last flare up cleared a few weeks ago i decided to talk to my GP about it, and he's put me on disability for the foreseeable future. Not sure what to think, relieved in one way and depressed in another.

Anyone else here on disability, is there anything i should know about it?

Doylo25

This is my first time to post on boards but found this thread interesting as I am also a sufferer. I am 25 now of which went through all test at age of 17 bloods,camera up/down,x-rays,more bloods,ct scans nearly everything a hospital has to offer until the beromeal(thick horrible past) of which diagnosed chrons after months of tests, no energy, weight gone from 10:08-08:08 within 4 months. Also trying to sit my leaving cert I went under the knife for first time got partial amount of large bowel, small intestine and appendix removed, 2 weeks after opp to my horror it wasn't over when nurse removing staples last 1 I could see getting pulled higher than the others then boom the scar burst open in the corner only bout an 1/8 of way wit puss.. After spending 3 months on my back with scare wide open at this stage getting packings of iodine marla as I call it sore stuff everyday with endless dressings it closed it opened etc(1 time I thought I was lucky when it closed until went to docs for dry dressing he took a Stanley blade to side of scare as there was a build up behind). Then back into hospital got a drip once a week for 3 weeks still to no use then as painful and as raw as scar was they tried sticking a tube in scar to poor liquid in from outside to see the problem off which ended up being a fistula so back under the knife to remove it. Finally fixed sat leaving after missing 6 months of last year and passed all(not great points but passed all). Was prescribed imuran of which at 17, young and nieve took when wanted etc lived good spent 7and8 months working in canarys when was 18&19. Up until the age of 24 was gud then went back downhill weight loss etc. until April of this year 2013 had severe pains in bowel area like wind/cramps(suffered a lot wit air/wind cramps) so took pain killer went to bed an hour later woke up took another pain killer this time only a half an hour past so this time rang ambulance late on a Sunday night was brought to loughlinstown of which I knew they couldn't do anything for me so there only 10 mins tops and had to be rushed on into Vincents were with new technology of a portable chest x-ray they could see liquid round the diaphram so they said within a half an hour I had to be operated on or within 2-4 hours my insides would be gone/poisoned and I'd be dead so in teathre for 3rd time this time when woke in icu wasn't the same as before(more tubes coming out of me everywere) I looked to my dad and said thank god that's over however he said its only beginning as when I was under knife they weighed me in to a record low(for me) of 6:2. I couldn't handle the whole opp in one go so had to remove part of small intestines that had blown a hole in itself and clipped both sides together till next day when had to go through it all over again in totall this time they took 3ft3inc out off me 2 weeks later(a lot of Xanax) had stitching removed to a good result since April to now(oct) I have gone from 6:2-9:4 this weight has being achived by fresubin,fortisip and enshake drinks along with a lot more food than ever before. My medication now for the chrones has changed from imuran to what my doctor said was the strongest and last drug that can be tried (from market at moment) of which Is a humera injection. As said this is my first time to speak out as I always felt that all foods are different reactions to different sufferers so never wanted to or tried joining groups. But eh maybe my little bit can help some other poor unfortunate sufferer and remember when your clear never fear it ain't far away my point is dont think cause there's no flare up it ain't there as I did, my mistake and self heartiness led me to loss off more bowel/intestine and nearly death..and please now that I'm registering it abit better I would be glad off advice.. Best wishes all and remember as I always do there's worse out there.. Ger

Turtwig

Bumpidy bump,
Hope everyone is keeping as well as they possibly can.

Has anyone got any experience of neuropathy sides of this disease? Lately my legs have decided to behave like autonomous beings. Fidgeting, pins and needles, numbness, pains, severe pain, bit of cramp, no pain. Getting tingling headaches and neck pain (having a sensitive throat doesn't help with that!) at times too. Gonna see my GP first thing in the morning as the head and legs have been progressively getting worse. Odds on getting sleep tonight are nil.

This happened before two very serious flare ups so I'm a little tetchy right now.:( However, on a slightly positive note those flare were also accompanied with a loss of appetite. That, I still haven't lost. Well, it's non existent with years but relative to my standards I haven't lost it!

Perhaps on the lighter side I'm more pissed off with a potential flare-up now because if it happens there's a good possibility I'll miss the Ireland game. :cool:

cambronne

Jernal wrote: »

Bumpidy bump,
Hope everyone is keeping as well as they possibly can.

Has anyone got any experience of neuropathy sides of this disease? Lately my legs have decided to behave like autonomous beings. Fidgeting, pins and needles, numbness, pains, severe pain, bit of cramp, no pain. Getting tingling headaches and neck pain (having a sensitive throat doesn't help with that!) at times too. Gonna see my GP first thing in the morning as the head and legs have been progressively getting worse. Odds on getting sleep tonight are nil.

This happened before two very serious flare ups so I'm a little tetchy right now.:( However, on a slightly positive note those flare were also accompanied with a loss of appetite. That, I still haven't lost. Well, it's non existent with years but relative to my standards I haven't lost it!

Perhaps on the lighter side I'm more pissed off with a potential flare-up now because if it happens there's a good possibility I'll miss the Ireland game. :cool:

I'm no doctor but I suggest you take some folic acid for a week or two and see how these symptoms react.

The_Conductor

I get similar sympthoms- and also ridiculously poor circulation (even lying down at night can give me dead arms and dead legs). I asked about it before- and was told its not unusual- very disconcerting though. You do need to ask your GP though- and get follow up if necessary.

I wish I could get a new body

shalalala

Jernal wrote: »

Bumpidy bump,
Hope everyone is keeping as well as they possibly can.

Has anyone got any experience of neuropathy sides of this disease? Lately my legs have decided to behave like autonomous beings. Fidgeting, pins and needles, numbness, pains, severe pain, bit of cramp, no pain. Getting tingling headaches and neck pain (having a sensitive throat doesn't help with that!) at times too. Gonna see my GP first thing in the morning as the head and legs have been progressively getting worse. Odds on getting sleep tonight are nil.

This happened before two very serious flare ups so I'm a little tetchy right now.:( However, on a slightly positive note those flare were also accompanied with a loss of appetite. That, I still haven't lost. Well, it's non existent with years but relative to my standards I haven't lost it!

Perhaps on the lighter side I'm more pissed off with a potential flare-up now because if it happens there's a good possibility I'll miss the Ireland game. :cool:

I have suffered with pains in my legs like trapped nerves for years now. It has been at the stage that I have not been able to walk for a month or more. I was only diagnosed with Crohn's yesterday and even though it is upsetting, part of me is glad to finally have a reason for the pain and tie constant tiredness.

Janedoe10

shalalala wrote: »

I have suffered with pains in my legs like trapped nerves for years now. It has been at the stage that I have not been able to walk for a month or more. I was only diagnosed with Crohn's yesterday and even though it is upsetting, part of me is glad to finally have a reason for the pain and tie constant tiredness.

Hello there . Good that u finally got a diagnosis that can be half the battle of crohns .
Now decide if u want to to establish a relationship with your GP and or if u want a referral for consultant .
I find when I know about the tiredness I know when it's coming on and I learn to slow down get sleep otherwise I crash . Do u still having probs walking ?

Turtwig

The_Conductor wrote: »

I get similar sympthoms- and also ridiculously poor circulation (even lying down at night can give me dead arms and dead legs). I asked about it before- and was told its not unusual- very disconcerting though. You do need to ask your GP though- and get follow up if necessary.

I wish I could get a new body

Ditto on the body.

My GP sent me straight to A&E Was given blood tests for DVT and other stuff. T couldn't find anything serious or urgent. I was a bit frustrated though that they were basically pigeonholing all pains and symptoms into crohns and a (practically benign) heart condition I have. I wish there was a way to go into hospital every now and again and have your conditions blind to the examining doctor. Maybe it's me but I feel that too often in hospital anyway they chalk any discomfort down to your condition when there's little certainty of that. It was like, we have no clue why you have these symptoms, but you have a condition so it must be that.
(And if that doesn't fit then it may be a side effect to your medication.)
Anyway, my GP is off on holidays this week so when he gets back I'll discuss options on how to proceed. Will be seeing my consultant again in March so will hopefully have some plan towards a resolution by then.

As things stand chest feels like it's going to explode at any time with the heat but apparently that's ok.

shalalala wrote: »

I have suffered with pains in my legs like trapped nerves for years now. It has been at the stage that I have not been able to walk for a month or more. I was only diagnosed with Crohn's yesterday and even though it is upsetting, part of me is glad to finally have a reason for the pain and tie constant tiredness.

In an awful way it's actually great that you have got a diagnosis. At least now you know and can start putting plans in place how to manage your condition as best as possible. Hopefully you're not in too much discomfort. If you are this thread is always here for venting and stuff. In a really strange way, the fatigue is probably the worst symptom of the disease. Certainly socially anyway as I find it's the one people have little understanding or empathy towards. Maybe it's just my experience but it really does feel like I'm frustrating people at times when I'm actually going beyond board to exert myself as best as possible. People have little appreciation or understanding for how tired you can be and how that fatigue can spike all of a sudden.

Janedoe10 wrote: »

Hello there . Good that u finally got a diagnosis that can be half the battle of crohns .
Now decide if u want to to establish a relationship with your GP and or if u want a referral for consultant .
I find when I know about the tiredness I know when it's coming on and I learn to slow down get sleep otherwise I crash . Do u still having probs walking ?

One thing I cannot emphasise enough is having a good a rapport with your GP and consultant. They're a significant chunk of your support structure and they're the ones that will ultimately be the responsible for guiding medical decisions and investigations. If they're not on song with you then it can get rather intimidating. Doctors are generally great but like mechanics your mileage may vary. Very often, especially when admitted on weekends, I get the sense that some doctors have a very poor overall awareness and understanding of the condition. That might be just biased hindsight because right now I'm a little frustrated.

mano bano

I have Crohn's Disease since 2000 at the moment I have a temp ileostomy I have being on different meds and none seem to work. At 1st I dreaded getting ileostomy but the freedom I have had with it is something I having had since my younger years when I was Crohn's free

Ush1

Anybody else experience joint pain on Imuran?

I've just started getting sore knuckles, especially in the morning. Also my lower back is sore(this could be more muscular pain though).

The_Conductor

Ush1 wrote: »

Anybody else experience joint pain on Imuran?

I've just started getting sore knuckles, especially in the morning. Also my lower back is sore(this could be more muscular pain though).

I'm off Imuran now- because my white cell count fell off a cliff.
While on it- even more so than sore knuckles- were fingers and ankles.

As Crohn's sufferers we are also apparently prone to arthritis- so do talk to your consultant- there could well be treatments they can advise that might lessen/alleviate some of the symptoms.

Northern Monkey

I've had lower back pain before that my consultant said was more than likely related to my crohns. He thought it was inflammation causing it.

Turtwig

Ush1 wrote: »

Anybody else experience joint pain on Imuran?

I've just started getting sore knuckles, especially in the morning. Also my lower back is sore(this could be more muscular pain though).

Before any treatment I used to have incredible joint pains. My ankles and knees in particular felt incredibly hot and stingy at times. It was horrendous at times for mobility. Like NM I had also lower back pain and this was due to the spasms and inflammation in the various parts of the abdomen. Now, that's just my experience though, it could well be that immuran has knocked something out of whack for you you need to talk with you GP and consultant. I'm sure they'll tell you that what you're experiencing isn't uncommon with crohns but just because of that they'll still need to assess the medication you're on.

Anybody here with upper GI experience of symptoms? It constantly feels like I have what I imagine would be a heart attack and when I lie down things become much much worse. Lying on the left side feels impossible and right side poses its own problems too - but not as severe. I need to keep the neck and chest raised and in past weeks the angle of raise required has just got worse and worse. I like to think I have a high threshold for pain and nausea but lately I've been getting sensations of partially choking and I have absolutely little threshold for those. Anybody figured out any way to lie or relax that minimises these?

New body please.

shalalala

So fricking frustrated. I still have the leg and back pain and then the imuran has made my joints sore. I tried to call my case nurse but to no avail as of yet. The one side effect of Crohns that I have had has been the leg and back pain and the fatigue so it is so frustrating that the pills that I have to take are giving me the pains worse.

Does anyone have any advice on getting the medical card people pull the finger out and help me out with the price of the meds?

Janedoe10

Epson salts have helped me with back pain and hot baths . I was going thru 2 baths per 1kg of epson salts but I have cut down in the last month .
As for meds and HSE helping out ? I honestly don't know the answer to that .

Turtwig

shalalala wrote: »

So fricking frustrated. I still have the leg and back pain and then the imuran has made my joints sore. I tried to call my case nurse but to no avail as of yet. The one side effect of Crohns that I have had has been the leg and back pain and the fatigue so it is so frustrating that the pills that I have to take are giving me the pains worse.

Does anyone have any advice on getting the medical card people pull the finger out and help me out with the price of the meds?

Try to be as nice on yourself as possible.

Medical card is likely going to fatigue you. Assuming you're on SW then it's relativity easier. Fill up application form, show you're means qualified and show proof of illness. Then appeal until you get it.

Discretionary one will probably be the equivalent of a life sucking vampire. Pretty much kick up a fuss about it seems to be the way things work here. There was an international IBD day last year and it barely made the media here. There's little awareness in many aspects of society of the debilitating nature of the condition for some. It's just primarily seen as bouts of the runs. Get your GP and consultant to write you a letter. Write your own personal experiences letter, show the receipts, and fill out the forms. I think one person on this thread even got their TDs involved.

Either way, that's pretty much it fight for help and hope it actually happens.

In terms of cost, depending on where you live, it may be cheaper for you to commute to a pharmacy in NI and get your prescription there. Getting meds by mail order from NI or indeed any other country is illegal.

Northern Monkey

Before I was maxing out the DPS, imuran was costing me just over £12 a month for 200mg per day (so 112 50mg tablets) in the north versus €50ish in the south. If you are planning on doing this and don't travel there frequently phone ahead to make sure the chemist has enough in stock to fulfil a few months supply.