Crohn's Disease

The_Conductor

** Mod- if this is not the right place for this thread- please feel free to move it **

Hey guys,

Three of us here who suffer from Crohn's Disease were thinking of organising a series of coffee afternoons- to sit down and exchange stories (and offer encouragement) to each other.

Location as yet undecided- but would be early evening (aka- I am NOT organising a pub crawl.....) and probably somewhere near Dublin City Centre- e.g. Food Emporium on Abbey Street for example.

I tried to get the ISCC to organise similar and presented them with Meeting Group details, but they are claiming they have insufficient resources to organise it, as they are a voluntary group, but might send someone along with literature- which would be nice.

It'll be nice to know there are more freaks like us around!

Take care,

Shane

Gordon

smccarrick wrote:

** Mod- if this is not the right place for this thread- please feel free to move it **

That sentence always makes me feel better

I'll copy this thread over to the events board. See http://www.boards.ie/vbulletin/showthread.php?t=221681

Feel free to use this PI thread to discuss Crohn's disease, personally I have no idea what it is.

Nevyn

what is crohn's Disease

It can also be known as Inflammatory Bowel Disease or IBD or Irratible bowel syndrome IBS.

My Dad suffers with it, and it can be quite literially a pain in the arse and lower gut.

The ISCC is unfortuantely staffed by mostly volunteers, but they do have a good range of information to help people adjust and live with Crohn's disease.

The support meeting sounds like a wonderful idea

HelterSkelter

I had ulcerative colitis (similar to Chron's) and had surgery because of it.

Did you need surgery?

The_Conductor

I've had surgery 4 times since 1993, the last time being last February.
I suffered from a bizarre range of misdiagnosis for about 10 years prior to being diagnosed by Parnell Keeling, the original being stomach ulcers at age 10.
I suffer regular relapses, am on cortisone at the moment, but want to try to get off it again- it has other side effects. Yes, its a pain, literally as well as figuratively. Both work and personal life can be a totally screwed up by it.

Thats a brief intro from me!

S.

The_Conductor

Thaed wrote:

what is crohn's Disease

It can also be known as Inflammatory Bowel Disease or IBD or Irratible bowel syndrome IBS.

The support meeting sounds like a wonderful idea

One of the reasons I thought it might be an idea to organise informal meetings, as opposed to structured meetings- is while its all well and good going to the structured meetings- they are very similar to going to lectures- you are presented with information from the podium- you have very little chance to chat and discuss things among yourself. As they tend to be in the evening- I'm normally exhausted (another Crohn's trait- total lack of energy) so I'm not exactly in the right frame of body or mind to try to make small talk.

Another benefit of a small group meeting up- is a better chance to compare notes with one another- maybe we might be able to pick up tips and pointers from each other that we may not otherwise think of, of our own accords.

I have had a few PMs on today, as a result of this thread, and would like to go ahead and see what we can arrange.

S.

HelterSkelter

Hi Lads,

check these links out, sounds like some positive news...

http://ibd.patientcommunity.com/features/weinstock.cfm

http://ibd.patientcommunity.com/features/weinstock_update1.cfm

http://news.bbc.co.uk/2/hi/health/3287733.stm

Some interesting quotes:
"The first six patients we treated received a single dose. We staggered the initial dosing for each of the patients - we wanted to watch them singly, over time. Nothing happened for a couple of weeks, and thereafter five of the six patients went into remission. And, by remission, I mean they felt symptom free. These remissions lasted two months to five months, after which the patient gradually relapsed. We then received permission to do some repeat dosing and the patients responded. Ultimately, we received permission to do some maintenance dosing on a regular basis, and we found that if we gave the agent once every three weeks we could sustain remission. A handful of patients have been maintained now out to a year and a half, and have done well."

"The first five of the six, went into complete remission - no diarrhea, no abdominal pain, no joint problems. These are people who were chronically ill for years. The one patient who did not go into remission got somewhat better. That same patient re-entered into the open label, maintenance phase, with twenty-five stools per day (all diarrhea), arthralgias, and a fistula. After three doses (within a couple of months) this patient was in complete remission, gained weight, had no signs of arthralgias, and is now running five miles a day."

They are now testing the treatment out on much larger groups of patients and it seems to be going very well.

Unfortunatly I am beyond help, I had my colon removed in 2002 due to Ulcerative Colitis.

DaBreno

Since I suffer from this crap myself for almost 2 years now, Id be interested in peoples opions on diet, how they manage a working day with it and where this **** comes from.
Im taking Asacolon to styme it and while it works most of the time, I still have regular bouts of it and have alreayd missed time off work this year with it.
Id like to hear from anyone who has had surgery how they found it coz it was one option mentioed to me.

Cheers folks.

Gilgamesh

Dudes, I though IBD wouldn't be good talking to coffee and Cake?
Correct me if I'm wrong,

The_Conductor

Gilgamesh wrote:

Dudes, I though IBD wouldn't be good talking to coffee and Cake?
Correct me if I'm wrong,

Different foods seem to cause different problems for different people. There are a number of things in common. Personally- I survive on coffee a lot of the time. What I cannot under any circumstances eat is Sweetcorn, Maize or anything made with them- e.g. cornflakes and a lot of the breakfast cereals are poison to me.
A big no-no for me is also anything with MSG in it (Monosodium Glutamate). Some people have probs with spicy food- in my case it depends on how active the Crohn's is- sometimes I'm ok, sometimes I'm not.

Depending on how you are feeling, some foods may be fine a lot of the time, but total poison to you at other times. Thats my experience in any case.

S.

m4cker

You poor bastid no msg. oh its so lovelly and tingly hmmmmmmm.

The_Conductor

Ps- one thing I have noticed, is that a lot of Crohn's people tend to ingest a lot of highly refined sugar (especially those of us with absorption difficulties). In that regard- hot sweet drinks would feature prominently.

I have problems with alcohol- my digestive system is incapable of handling boozing at all, where some people get hang-overs, I can take weeks to recover. Spirits tend to be different though- for some strange reason. I like a nice whiskey- and also hot whiskeys, and they don't seem to cause me the same degree of difficulty. A lot of the time I do end up drinking coke or orange juice when I'm out- so I do end up feeling a bit out of place, but it means there is not a problem for everyone else with a designated driver- and not a problem for me with a relapse the following day.

Re: coffee and cake- I'm open to suggestions. If this does not sound like a good idea for some people- its not a problem. One of the reasons I suggested the Food Emporium on Abbey Street- is precisely because of the wide range of very different foods that are available there (should be something to cater for everyone).

S.

Gilgamesh

aahh okya, just read that a low fat diet was recommended as a lot of stuff can worsen the condition.
thanks for the reply though

The_Conductor

m4cker wrote:

You poor bastid no msg. oh its so lovelly and tingly hmmmmmmm.

The very thought of it is making me queasy......

Think of all the things with MSG - Tayto crisps, soups (virtually anything in a packet), most savoury foods, Chinese foods....... I guess you always long for the things you cannot have!

S.

The_Conductor

Gilgamesh wrote:

aahh okya, just read that a low fat diet was recommended as a lot of stuff can worsen the condition.
thanks for the reply though

Low fat, high protein - low fibre, high carbohydrate

I think the fat may be a problem with absorption and acids- maybe someone who has a little more knowledge might like to give a little more info.

I have an appointment with the Dietician in St. Vincents in 2 weeks time- so should hopefully have a better idea of things from a foodie perspective then.

Surgery 4 times, on cortisone most of the time and I've never gotten to meet a dietician........ says something for the state of the Health Service here.......

Gilgamesh

is very weird with the diatician indeed, I don't have Crohn's but am Insulin independant Diabetic, and the first thing they did was send me to the diatician before I even saw the docs.
Surgery really sucks bigtime, and I guess it was with full anesthetics each time aswell.
wish you all the best for the future

DaBreno

smccarrick wrote:

Think of all the things with MSG - Tayto crisps, soups (virtually anything in a packet), most savoury foods, Chinese foods....... I guess you always long for the things you cannot have!

S.

Ouch! Sorry to hear that. I find it varies wildly. Chinese, Mild Curries and the like dont bother me. But then Tangerine Oranges and Red apples kill me! Even when Im laid out by a bad dose, I cant eat most things yet a Pizza from Apache is grand. Weird.

Alcohol on the other hand is a killer. Still stupid enough to have a drink the odd time mind, but the Hangovers are Epic - a few pints and I wake up in the morning needing to throw up followed by sitting on the bog crapping Blood. This can go on for hours, and I continue to retch even though there is nothing left to bring up. So the big sessions are no more and Ive had to switch to wussy bottles and even then drink only a few. Spirits are a big no-no. Sob!

dudara

My first cousin suffers from Crohn's and like some of you, it took ages for him to be diagnosed. I think he keeps it under control at the moment with steroids, but he's already had surgery. My aunt is worried at the moment, as he's having a bit of a relapse right now. I also suffer quite a bit from an irritable bowel, so I have some experience of how *****y this can be.

There's a centre in UCC, the alimentary pharmacutical centre (APC) whic conduct research into the use of probotics in controlling such things as Crohn's.

The_Conductor

DaBreno wrote:

Even when Im laid out by a bad dose, I cant eat most things yet a Pizza from Apache is grand. Weird.

I know what you mean- when I'm feeling awful, about the only food I can consistently eat is a chicken sandwich from O'Briens.....

I went through the stage of trying to decide whether it was worth going out boozing and feeling terrible for so long afterwards, and decided it just wasn't worth it. Unlike you- I do get away with a couple of whiskies though- providing they're only on rare occasions when I'm in good form. It is nice.

As I've had so much of my intestines removed, I have to take a bewildering mix of things to try to slow down my digestive system- was taking 6 Imodium every morning for a long time- but have a few other concoctions now to supplement it- such as Codeine Phosphate tablets. As they are a morphine derivative, they can become addictive, so they are far from ideal too.....

Tried to get on one of the clinical trials in the APC in Cork previously- but a combination of my location and other factors just didn't help. It will be interesting to see the outcome of their research.

Was looking at research on Johnnes Disease (in sheep I think) which is basically the same as Crohn's. There are a number of studies ongoing on it at the moment. Incidentally its a notifiable disease to the Department of Agriculture- as they are unsure how it occurs they are worried that it will spread through flocks of sheep- even though there is nil proof of this happening. Makes you wonder about Crohn's.....

I delibertly glossed over a lot of the less savoury aspects of Crohn's such as all the bleeding etc- as I didn't want to scare people on the thread. Anyone who is afflicted with Crohn's knows only too well a lot of the problems associated with this.

Another problem I have, is I seem to be exhausted the whole time? Even when I am in good form- I just don't have the energy to do things for long periods of time. Also- concentration- my mind seems to wander- as though I want to go to sleep......

I don't know!

Nevyn

smccarrick wrote:

Another problem I have, is I seem to be exhausted the whole time? Even when I am in good form- I just don't have the energy to do things for long periods of time. Also- concentration- my mind seems to wander- as though I want to go to sleep......

I don't know!

Wel it si helpfull to hear about how it can effect you systems engery and here we tought that Dad had become all old and grumpy early before he even hit sixty. IT can be a big strain on family and friends until they figure out that really is all you are capible off and your not just putting them off.

The_Conductor

Thaed wrote:

Wel it si helpfull to hear about how it can effect you systems engery and here we tought that Dad had become all old and grumpy early before he even hit sixty. IT can be a big strain on family and friends until they figure out that really is all you are capible off and your not just putting them off.

It can be difficult- as you have limitations that are a lot less than either you would like them to be, or other people would normally expect them to be. Also you do have good spells- but as much as one night bad sleep can set you back for weeks. Its not easy- if it was constantly the same- people might recognise that you are capable of X- but when you have a flareup things get so much worse. As its not an apparent disease- often in my case I could be in work with a temperature of 101-103, feeling dizzy, trying to make sense of figures with my boss barking orders at me- and just not even have the energy to reply to her. I've ended up sitting at my desk at 7PM some evenings- trying to get the energy to walk down to the carpark to get to the car, and then drive home with all the windows open so the gale through the car will keep me awake...... I'm only 30- often I feel like I'm 70......

As Crohn's isn't an obvious illness- people do not tend to make allowances for you. Even harder- often you don't accept that you yourself have limitations- things that are so simple for everyone else, you just don't have the energy to do. It can be so frustrating.....

DaBreno

smccarrick wrote:

Another problem I have, is I seem to be exhausted the whole time? Even when I am in good form- I just don't have the energy to do things for long periods of time. Also- concentration- my mind seems to wander- as though I want to go to sleep......

I find at the start of an attack, Im completley whacked and dont know why. Its when I start seeing a lot of blood I know whats happening. Being exhausted is complete crap. Its like being in the middle of a week long hangover. There are days I just cant get out of the sack and have to phone in late to work before Im even out of bed!

I dont think other people completley grasp this part of it. Its often misinterpreted as lack of interest in them. Its a nightmare when the folks call and all I can say is "thats grand" and the like. It can be extremley hard to concentrate on work also. The days drag on forever and I get nothing done.

Im actually going into Hospital again this week to have it looked at. Its been at me quite frequently since August so the Doc wants another camera job(yikes!) to see if it has spread. Will be back on Friday and will let ye know. (Im on a liquid diet today and tomorrow and its a pain in the nuts )

In the meantime, Elan are banging away on a permanent treatment which according to their website seems to be nearing completion and is undergoing trials. Fingers crossed.

I thought IBS and Crohn's Disease were 2 different things, Crohn's being much more serious? 2 doctors have said I likely have IBS but neither seemed that bothered, they just said to watch what I eat and take these tablets if I get bloating etc. My usual symptons are stomach area pains, bloating, diarrhea etc. I'm usually fine, but certain things like coffee, Chinese food, McDonalds set me off. It used to be loads worse, I used to get awful pains and bloating after EVERYTHING, thats why I went to the Dr.
I always feel tired, depressed and sluggish but I dunno if thats connected.

The_Conductor

Vivian White Fig wrote:

I thought IBS and Crohn's Disease were 2 different things, Crohn's being much more serious? 2 doctors have said I likely have IBS but neither seemed that bothered, they just said to watch what I eat and take these tablets if I get bloating etc. My usual symptons are stomach area pains, bloating, diarrhea etc. I'm usually fine, but certain things like coffee, Chinese food, McDonalds set me off. It used to be loads worse, I used to get awful pains and bloating after EVERYTHING, thats why I went to the Dr.
I always feel tired, depressed and sluggish but I dunno if thats connected.

Yes, sort of....
Iritable Bowel Syndrome is different from Crohn's in that diseases covered under the IBS umbrella do not tend to cause inflamation of the internal organs. Thus IBS would include a number of disease including the misnamed- mucous colitis, spastic colon, spastic bowel, and functional bowel disease (all of which are really the one).

Colitis - is an inflamation of the large intestine. Crohn's Disease tends to (initially at least) affect parts of the small intestine (most often the illeum being the starting point - but can migrate literally anywhere in the digestive tract).

IBS - is what is known as a "functional disorder" - that is tends to be no sign of disease when the colon is examined (as opposed to Colitis or Crohn's where disease is obvious). Unlike Crohn's in particular - IBS does not cause permanent harm to the intestines and does not lead to intestinal bleeding of the bowel or to secondary serious diseases such as cancer.

In practice IBS sufferers tend to be able to control their conditions through diet - but would often be prescribed fibre supplements (a course of action that would send a Crohn's sufferer into hospital quicker than clicking your heels together twice).

In that they effect the same part of the body- namely the digestive tract, they are similar, but Crohn's (and Colitis to a lesser extent), through inflamation, fistulas, scarring, prolonged blood loss, secondary diseases (such as cancer) etc- do tend to be more serious.

Then again - Crohn's occasionally spontaneously vanishes in some people- and never recurs- so there is no quick and ready rule.

The pronounced manner in which IBS affects patients, can be very similar to the sympthoms afflicting Crohn's/Colitis patients - Crampy pains, Gassiness, Bloating, Massive changes in toiletry habits. Crohn's or Colitis sufferers would tend to also have (possibly) some (or all) bleeding, fever, weight loss and persistent severe pain- which would NOT be present in IBS.

Some surveys claim as high as 20% of the population of the first world suffers from some form of IBS, with greater than 10% of GP visits currently diagnosising IBS (mostly mild).

Lots of interesting info on the NACC website (in relation to Colitis and Crohn's....)

http://www.nacc.org.uk/content/home.asp

While not belittling IBS in any manner, you should note that there is a distinct difference between IBS and IBD - (Syndrome and Disease), Crohn's and Colitis would be classified as diseases.

Hope this helps,

S.

The_Conductor

http://crohns.meetup.com/64/

Provisional schedule- meetup first Wednesday of every month, Food Emporium, Abbey Street @7PM.

Its the Jervis stop on the Luas btw.

If you register on the above website you will be sent reminder e-mails, and if there is a change in location or schedule it will be e-mailed to you. There is also a bulletin board on the site where you can post a brief introduction to yourself (if you like). Its free to join the website- there are no charges involved.....

3 members so far - hopefully a few more from here will join.

Shane

DaBreno

DaBreno wrote:

Im actually going into Hospital again this week to have it looked at.

Since Im sure ye were all just dying to know, I got on grand. Hasnt spread but the tummy is inflamed. He may have to put me down. Its for the best.

The_Conductor

Thats good to hear.
More cortisone I guess for the inflamation?

Great to hear your good news!

DaBreno

Cheers for that Sir!. No mention on drugs yet.

Gordon

Did you guys all have to have a barium meal? Isn't that just the most disgusting thing you've ever drunk?!

The_Conductor

Over the past 10 years, I would imagine I've had 7 or 8 barium meals.....
There is another test that they use as well now- called something like enhanced nuclear resonancing- where you have to drink 2-3litres of metalic orange juice (and tastes like lead, there is no other description for it), and then be injected with tracer dyes so they can view the blood flow around your organs.
Thats even worse than the barium.......

One positive thing about us having the barium meals (and believe you me, its scraping the bottom of the barrel to call it a positive thing)- is Crohn's sufferers often have what is commonly known as a "leaky bowel"- that is things fly through us. So- where a lot of people may have to wait hours after drinking the barium milkshake (they thought I was being a comedian when I asked for a specific flavour last time)- in our case its normal to be able to follow the barium through our systems in no time flat.

Don't like barium, no, but there are far worse things out there.....

case n basket

I have Crohn's disease, but fortunately it's been inactive for a good few years now. IIRC I was diagnosed with it when I was 10 and it was pretty bad for a few years. Hospital time, steroids, immuno-suppressants, fortisip (puke!) and so on. Stopped most of all that malarkey by the time i was about 16 with the exception of the fortisips which I attempted to drink for a few years after. /almost/ developed a taste for them in the end

I'm just happy I don't have a bad case of it now; makes me appreciate being (reasonably) healthy!

DaBreno

Gordon wrote:

Did you guys all have to have a barium meal? Isn't that just the most disgusting thing you've ever drunk?!

Isnt that the gear that tastes like Aniseed? I didnt mind it too much.(True for what Smcarrick says, it doesnt stay in to long. ) The machine was worse, had a feeling I was about to be crushed. Had it done in the Bon Secours by a smashing Nurse. So that eased the experience!

The_Conductor

http://news.bbc.co.uk/1/hi/wales/4251927.stm

BBC News wrote:

Drug trial targets bowel cancer

Different ways of treating bowel cancer will be assessed
A new drug to help give people with bowel cancer a better quality of life is being trialled at a south Wales hospital.
More than 16,000 people in the UK are killed by bowel cancer each year.

Around 2,500 people have volunteered to test the drug Cetuximab, which will be used alongside chemotherapy.

The research, based at Cardiff's Velindre Hospital, will give doctors important information on how to treat people with the disease.

The tests are being led by Professor Tim Maughan, the director of Wales Cancer Trials.

He said: "Cetuximab targets the cancer and appears to make standard chemotherapy much more effective.

"We want to find out if it can help patients to live longer and have a better quality of life."

Our main priority is to ensure that patients taking part in the trial receive the highest standard of support and care

Professor Maughan also said chemotherapy itself was being examined, with the aim of finding ways to make it less "arduous and tiring" for patients.

"We hope to discover that using chemotherapy intermittently will be as effective as the current continual treatment, meaning patients would be able to have a break from the treatment for recovery and holidays."

The trial is designed for people who have metastatic colorectal cancer, which means it is bowel cancer which has spread to somewhere else in the body.

During the trials, researchers will be carrying out a range of tests on people's blood and tumour samples.

The trial is being based at Velindre Hospital.

Professor Maughan said they then hoped "to see whether we can predict which patients will respond best to the treatment, and who might do better with an alternative approach".

"Our main priority is to ensure that patients taking part in the trial receive the highest standard of support and care," he added.

The research is being funded by the Medical Research Council (MRC) and Cancer Research UK, with an educational grant from the pharmaceutical company, Merck KGaA.

Any patients who are interested in taking part in the trial should speak to the doctor treating them to see if they are eligible.

The_Conductor

From the daily Med Cabs

http://www.medwire.md/News_single.aspx?newstype=42&date=20050211&story_id=32577 wrote:

Inflamm Bowel Dis 2005; 11: 154-163

Study findings reveal that an individual's diet may play a role in the development of inflammatory bowel disease (IBD), with individuals who consume a lot of sugary and fatty foods more likely to develop the conditions ulcerative colitis (UC) and Crohn's disease (CD).

To evaluate the role of diet in the development of IBD, Dr Naomasa Sakamoto, from Hyogo College of Medicine in Japan, and colleagues conducted a hospital-based study in a Japanese population.

Included in the study were 111 patients with UC and 128 with CD, as well as a comparison group of 219 individuals who were of similar age but did not have IBD. All participants responded to a questionnaire about the types of food they ate and how often they ate them, which was used by the investigators to estimate each individual's intake of various food groups and nutrients.

The results, published in the journal Inflammatory Bowel Diseases, showed that individuals who consumed the most sweets were 2.86 times as likely as those who consumed the least to develop UC. Similarly, the risk of developing CD was 2.12-times higher for those who ate the most sugars and sweeteners, increased 2.83 times for individuals with the highest consumption of fats and oils, and 2.41-times higher for participants with the highest intake of fish and shellfish.

When Dr Sakamoto and team analysed the results in terms of specific nutrients, they found that high vitamin C intake significantly reduced the likelihood of developing UC. Conversely, participants were significantly more likely to develop CD if they had a high total fat intake and/or high consumption of specific types of fat called monounsaturated, polyunsaturated, n-3 and n-6 fatty acids.

The investigators therefore conclude that their findings "suggest the importance of dietary factors for IBD prevention."

Gordon

I took it 20 years ago so they may have developed it slightly now.

It's like chalky slightly powdery and REALLY thick thick creamy/milky texture. Tastes added are strawberry concrete flavour and some other fruity flavour that actually tastes like molten cardboard. X-ray-ted material.

The_Conductor

Gordon wrote:

I took it 20 years ago so they may have developed it slightly now.

It's like chalky slightly powdery and REALLY thick thick creamy/milky texture. Tastes added are strawberry concrete flavour and some other fruity flavour that actually tastes like molten cardboard. X-ray-ted material.

Take my word for it- its not been developed in the least......
Its still the exact same ghastly stuff.....

The_Conductor

From: Science 2005; 307: 734–738

http://www.medwire.md/News_single.aspx?newstype=20&date=20050209&story_id=32443 wrote:

A proinflammatory cytokine activated by colon bacteria plays a key role in triggering experimental colitis in mice, raising hopes of a new therapeutic target for Crohn's disease (CD), US researchers report.

Writing in the journal Science, the investigators reveal how mutations in the gene encoding Nod2 are associated with a marked potentiation of nuclear factor (NF)-κB and more efficient secretion of interleukin(IL)-1β in response to a bacterial-derived peptide.

"Now that we've identified IL-1β as an important target for Crohn's disease therapy, we hope that a better, more effective IL-1β-inhibiting drug can be developed for testing in these patients," says Michael Karin, the study's lead author and professor of pharmacology at the University of California at San Diego.

Recently, mutations in Nod2, an intracellular sensor of bacteria-derived muramyl dipeptide, were found to increase susceptibility to Crohn's disease up to 40 times. In the present study, Karin's team sought to elucidate the pathophysiological function of the NOD2 protein.

They developed mice with mutant Nod2 and then introduced bacteria into the wall of the intestines. One-third of the mutant mice developed fatal colonic inflammation, while the surviving animals exhibited large colic lesions and severe weight loss.

Mutant animals showed elevated NF-κB and more efficient processing and secretion of the cytokine IL-1β, the authors report.

They conclude: "These effects are linked to increased susceptibility to bacterial-induced intestinal inflammation and identify Nod2 as a positive regulator of NF-κB activation and IL-1β secretion."

The_Conductor

Times, they are a-changing!

Gut 2005; 54: 369-373

Wireless capsule endoscopy (WCE), in which a pill containing a tiny camera is swallowed by a patient and sends back pictures from inside the patient's digestive tract, is a extremely effective method of identifying Crohn's disease in the small intestine, results of a German study confirm.

Writing in the journal Gut, the research team, led by Dr Winfried Voderholzer from Humboldt University in Berlin, explains that, "until now, radiological methods [x-rays] have been the gold standard for investigating the small intestine, with computed tomography (CT) enteroclysis recommended for Crohn's disease."

However, they add that the development of WCE "offers endoscopic access to the small bowel and may therefore change diagnostic and therapeutic strategies in small bowel diseases".

To test the effectiveness of WCE for identifying diseases in the small intestine, the team studied 41 patients with Crohn's disease who underwent CT enteroclysis before WCE was carried out.

The researchers found that using CT scans they were able to identify small lesions in the wall of the small intestine indicating Crohn's disease involvement in 12 patients. However, using WCE, they were able to identify 25 patients with such lesions.

Therapy was changed due to WCE findings in 10 patients and their symptoms subsequently improved.

The researchers conclude: "Our data show that WCE can be a useful tool in detecting small bowel lesions in patients with Crohn's disease as well as explaining clinical symptoms and improving the selection of therapeutic approaches.

"This may have significant therapeutic impact."

The_Conductor

Gastroenterology 2005; 128: 260–269

Two specific sets of genetic mutations work together to increase the risk of Crohn's disease (CD) and ileal diseases among patients with such conditions, but they do not contribute to the risk of ulcerative colitis (UC), Canadian researchers have discovered.

Previous research by the same team revealed that a two-allele haplotype (SLC22A-TC) was associated with an increased risk of developing CD. In the current study, they examined the contribution of this haplotype, alone and in combination with CARD15 variants, to CD phenotypes and to the development of UC.

In all, 507 patients with CD, 216 with UC, and 352 ethnically matched controls were genotyped for both alleles involved in the SLC22A-TC haplotype, as well as the major CD-associated CARD15 genetic variants.

The results, published in the journal Gastroenterology, reveal that the SLC22A-TC haplotype was strongly linked to CD in non-Jewish participants. Furthermore, the presence of SLC22A-TC homozygosity and one or more of the CARD15 variants resulted in a 7.5-fold increased risk of CD and a 4.5-fold increased risk of ileal disease.

There was no association between the SLC22A-TC haplotype and UC in either the overall cohort or in any of the subgroups divided according to the CARD15 genotypes, reports Katherine Siminovitch, from the University of Toronto in Ontario and colleagues.

They write: "The molecular events coupling the... polymorphisms to CD remain unclear. The organic cation transporters encoded by these genes play key roles in transporting a wide range of cationic compounds, including endogenous metabolic products and a variety of exogenous compounds, some of which may have toxic properties.

"It is therefore possible that altered transporter function enhances uptake of potentially toxic compounds (derived, for example, from enteric bacterial activity) that may evoke intestinal epithelial cell injury and a consequent inflammatory reaction."

DaBreno

Shame about Elan eh? Their MS drug killed someone in a trial and badly infected another so they have pulled the drug out of trial(Hard to believe this is only a Voluntary decision. They werent required to). Billions wiped off the share price as a result. Hope this doesnt impact on their Crohns research although you'd imagine since another false start could destroy all confidence in Elan, they will go over it with a fine comb.
*Which i suppose it not a bad thing.

The_Conductor

DaBreno wrote:

Shame about Elan eh? Their MS drug killed someone in a trial and badly infected another so they have pulled the drug out of trial(Hard to believe this is only a Voluntary decision. They werent required to). Billions wiped off the share price as a result. Hope this doesnt impact on their Crohns research although you'd imagine since another false start could destroy all confidence in Elan, they will go over it with a fine comb.
*Which i suppose it not a bad thing.

The drug in question Tysabri (Natalizumab) while an Elan product, it was used as a combination drug with Biogen's Avonex in the trials in question.

The cause of death in the two individuals undergoing the trials is cited as a rare and often fatal central nervous system disease called progressive multifocal leukoencephalopathy, or PML.

Tysabri is (still) approved for relapsing-remitting MS, the most common form of the disease at the time of diagnosis. It is characterized by acute symptoms or a worsening of neurological functions that can occur intermittently. These symptoms can weaken or disappear for months or years between relapses.

With regards the clinical trial in Ireland for Tysabri as an alternate treatment for active Crohn's Disease- Elan released the following statement in December-

"Available data regarding the safety and efficacy of natalizumab in Crohn's disease are limited to one short-term trial.[5] In this trial, the group given two infusions of 6 mg natalizumab did not have a significantly higher rate of clinical remission (the prospectively defined primary efficacy endpoint) than the placebo group at week 6. There are no additional published safety, efficacy, or outcomes data available to support the use of natalizumab in the treatment of Crohn's disease."

TYSABRI works by inhibiting adhesion molecules on the surface of immune cells, and by preventing immune cells from migrating from the bloodstream where they can cause inflammation and potentially damage nerve fibers and their insulation. Along with MS and Crohn's applications, it is also directed against Rheumatoid Arthritis.

There is another trial which continues to be ongoing- that is Rebif, a subcutaneous injection of 44mcg 3 times a week. Results are unavailable at present.

Have to have a check on the APC (Alimentary Pharmabiotic Centre) down at UCC and see whether their tests are progressing.

The_Conductor

Gut 2005; 54: 357–363

In addition to the known risk factor of family history and protective effect of appendicectomy, there is a range of environmental factors that have an impact on the risk of both Crohn's disease (CD) and ulcerative colitis (UC), say French researchers.

Certain environmental exposures in early life have been implicated in the development of inflammatory bowel disease (IBD), the team writes in the journal Gut.

To investigate further, they examined a total of 222 incidences of CD and 60 cases of UC that were diagnosed before 17 years of age between 1988 and 1997. Each of the patients was matched with a control individual by gender, age, and geographical location.

The participants completed a questionnaire that contained 140 variables, covering familial history of IBD, events during the perinatal period, infant and childhood diet, vaccinations and childhood diseases, household amenities, and the family's socioeconomic status.

Analysis revealed that a family history of IBD (odds ratio [OR]=4.3), breast feeding (OR=2.1), bacille Calmette-Guerin (BCG) vaccination (OR=3.6), and a history of eczema (OR=2.1) were all significant risk factors for developing CD, while the regular drinking of tap water (OR=0.56) was a protective factor.

For UC, significant risk factors were a family history of IBD (OR=12.5), disease during pregnancy (OR=8.9), and bedroom sharing (OR=7.1), while appendicectomy was protective against the condition (OR=0.06).

"In conclusion, this study confirms the strong risk of IBD associated with familial disease and the protective effect for later occurrence of UC of appendicectomy in childhood," writes J-F Colombel, from Claude Huriez Hospital in Lille, and colleagues.

They add: "It shows, for the first time, an association between IBD and environmental factors such as drinking water, BCG, and breast feeding."

DaBreno

Another setback for Tysabri - from the Indo

SHARES in Elan dived again yesterday after US regulators said they are reviewing another suspected case of a deadly brain disease in a patient taking the multiple sclerosis drug Tysabri.

The US Food and Drug Administration (FDA) confirmed it was evaluating a possible fourth case of the rare brain infection PML in a patient who had taken Tysabri.

Shares in Elan finished down 13pc in Dublin, while shares of its marketing partner for the drug Biogen, also fell.

A spokeswoman for the FDA said: "There is a case with possible symptoms. The case is being reviewed."

Biogen, with which Elan developed the treatment, told the FDA a fourth patient may have contracted progressive multifocal leukoencepalopathy (PML).

A Biogen spokeswoman said: "The patient referenced in that story is alive."

She would not confirm whether the fourth patient was suspected to have PML, but said: "We are reviewing any and all suspected cases. It's an extensive evaluation. We hope to have findings by the end of the summer."

Biogen said two patients are confirmed to have died from PML.

A third patient with a confirmed case of PML remains alive.

PML is a rare disease in which a virus attacks the protective sheath over cells in the central nervous system.

Elan withdrew Tysabri in February after it emerged one patient had died from PML, and another was believed to have it.

A third case of the disease was identified in March.

Elan said it would not comment yesterday ahead of the safety evaluation process.

The possible new case is the third among MS patients who were taking a combination of Tysabri and Avonex, according to the FDA report.

Some doctors have speculated that the two drugs may together sufficiently weaken patients' immune systems to permit infections like PML.

The three confirmed PML patients had weakened immune systems, sparking hope that Tysabri could return to the market if it was not used in conjunction with Avonex, analysts said.

Last week, Elan chief executive Kelly Martin reiterated his confidence that Tysabri would return to the market.

At the company's annual meeting in Dublin he said the safety probe into Tysabri was on track to conclude by mid-to-late summer, after which discussions with the FDA could begin.

Elan stock has fallen 70pc since the suspension of Tysabri, and it had been pinning hopes of a return to profitability on the drug.

DaBreno

Looks like the drug is getting a release date.

http://www.unison.ie/business/irish/stories.php3?ca=80&si=1452335

ELAN Corp could receive regulatory approval for its Tysabri drug treatment for MS from the Food and Drugs Administration in the US before the end of 2005. If approved, this would allow the drug treatment back on pharmacy shelves in the US by June 2006, according to Davy Stockbrokers.

This follows the announcement on August 9 that no new cases of the fatal brain condition PML had been identified.

"The first segment of the safety evaluation on Multiple Sclerosis (MS) patients has been completed and no new cases of PML were identified. Crohn's/RA patient evaluations are on track to complete in September," Davy healthcare analyst Jack Gorman notes.

"Regulatory submissions should follow shortly thereafter, which accords with our view that a possible regulatory decision on Tysabri could be made around the end of 2005," he predicts.

Elan will be making regulatory submissions simultaneously to both the FDA in the US and the EMEA (European Medical Evaluation Authority) but the expectation among analysts is that the FDA will move fastest to approve or reject Tysabri.

Mr Gorman says Tysabri was a new molecular entity given a priority review by the FDA. This level of innovation remains relatively rare, he argues.

The launch and subsequent suspension of Tysabri has had two impacts on the MS market in the US, according to Mr Gorman.

"Firstly, Tysabri's launch raised awareness and penetration levels across the patient population, leading to a rise in underlying prescription volumes. Secondly, it raised the bar on pricing levels so revenue growth is accelerating," Mr Gorman says.

Elan remains a product-specific story notwithstanding a rising biotech sector. Davy's sum of the parts valuation for a successful launch of Tysabri implies a share price target of just over $13 a share based on peak revenues of $1.6bn.

Elan surged almost 40pc in Dublin at one stage on August 9 after it said that a safety evaluation of Tysabri had resulted in no new confirmed cases of PML.

Elan and its marketing partner for Tysabri, Biogen, said earlier this month that about 2,000 patients who took the suspended MS-fighting drug Tysabri in clinical trials have been screened for PML, but none showed signs of contracting the condition.