[Crohns] Crohns Cures

Pataman

According to todays paper viagra has been shown to have beneficial effects on crohns sufferers. Now just to get the wife to believe it!(and take it)

DrIndy

would you please quote the reference to this?

It would be an interesting development if true.....

metrovelvet

What about UC? That too?

Pataman

It was in yesterdays evening herald and the metro. I will try to find the copy.

Vorsprung

It was in the Lancet last week

Chucky

The BBC article I just read didn't mention anything about UC unfortunately.

GuanYin

Well hypoxia and intestinal inflammation is well documented and there are actually two very prominent researchers in this area currently working in Ireland while another major researcher works in Harvard.

As such, the findings, were they true, wouldn't be of any surprise.

metrovelvet

So wait, if it cures Chrones can't it cure UC? They have the same cause don't they? Isnt the primary difference that one is in the large intestine and the other[chrones] is in the other digestive organs?

GuanYin

metrovelvet wrote:

Do you know where in Ireland? Is it Trinity?

Yes I do, I'm vaguely involved.

No it's not trinity.

Please don't argue with me. I actually suffer badly with one of these diseases and I'm not in the mood for our usual tete a tets.

No idea who you are actually, saw a comment you made elsewhere but no recollection of you, but I'll gladly put you on ignore if you like and then I won't be annoying you.

Chucky

Please do not argue with each other. The world is bad enough without further bad Karma.


UC and Crohn's are both IBDs and as such (Like Metrovelvet) I would have thought that a cure for Crohn's is also a cure for UC. However, I have not seen it mentioned for UC anywhere in text documenting the cure.


Actually, this might be of interest to sufferers of IBDs: I read in New Scientist last month that they might be able to replace colonoscopies with simple blood tests. Obviously the research is in the early stages.

metrovelvet

OT - one sec. :It has been brought to my attention that that my request to avoid an argument with psi was read as a slight against him. This was not my intention. I regret whatever harm to his personal dignity or feelings I may have caused by my remarks. I hope he will now feel free to respond on this thread. Thank you.

Back on topic:
UC and Chrons are bitch. But man does this mean we'll all walk around really horny? :eek:

GuanYin

metrovelvet wrote:

So wait, if it cures Chrones can't it cure UC? They have the same cause don't they? Isnt the primary difference that one is in the large intestine and the other[chrones] is in the other digestive organs?

The simple answer is, we're not quite sure.

Basically it was always thought that IBD (the umberella term for both crohns and UC) was down to an overactive immune system.

In this new model, the suggestion is that its a weak immune system that allows a build up of bacteria and cell debris at the mucosal surface (the intestinal lining) and gives us crohns. It is proposed that this weak immune response is down to poor oxygen supply to the GI tract in these conditions. As viagra increases blood supplies and blood carries oxygen, then then fuels the bodies immune response to act against the pathogens that cause of the inflammation, rather than stopping the inflammation (and effecting the immune response) itself.

The main differences between UC and Crohns is the location of the inflammation. UC is limited almost extensively to the colon (sometimes the lower ileum) where as Crohns can lead to inflammation anywhere in the GI tract. UC also always has associated lesions at the rectum.

Because noone knows the nuances of these differences, it is unknown if the "viagra treatment" carries through for both. For instance, the colon (associated with UC) has far thicker mucosal wall than the rest of the GI tract. There are also pH differences between the colon and ileum.

H. pylori is very much implicated in UC while evidence suggests that bacteria invading the intestinal wall leads to crohns (H. pylori don't invade the intestinal wall). So you see, depending on the actual mechanism and to what area viagra improves the immune response, there may be good reasons why this treatment may work on crohns and not UC.

Or it may just be that the trial was limited to Crohns patients.

There is good news though. An analogue of the viagra drug, named OPC-6535 has been successful in trial for treating UC patients. They believe it acts as an immuno supressant, inhibiting some white blood cell functions in immune responses. However, in light of the viagra study with crohns, this may prove to be the wrong mechanism.

Because the lack of oxygen supply to the intestine has been studied in hypoxia ( which is the term for poor oxygen supply) there may be interest in this branch of research in Ireland. The Taylor and McLoughlin laboratories in the Conway Institute UCD research hypoxia.

DrIndy

UC and crohns are fundamentally different disease, crohns being better understood than the former. There seems to be clear pathological mechanisms for the development of Crohns and as such there are new and exciting molecular medicine cures available and on the wings for crohns.

UC on the other hand is more poorly understood although it can be cured completely by surgery to remove the large bowel (extreme, but very effective and is used in intractable cases). Only one third of patients respond well to to normal immunosuppresive therapies used in crohns like infliximab. The disease process is more complex and there seems to be different pathways to activate and maintain the disease.

Heparin has been discovered as treatment for certain UC patients.

If it is possible to develop a grand unifying treatment for UC and crohns disease is uncertain until all the diseases and the nuances are fully understood is not known at this time although medicine has come along in leaps and bounds in recent years and there will probably be much more available in 10 years time than there is now.

metrovelvet

Well I cant speak for other UC sufferes but I know for me its immune related as when Im out of remission I also have anaphylactic reactions to fructose in addition to sever UC symptoms. I'd be very interested to hear more about PH balance and the colon.

That there are auto immune illnesses in my family I'm inclined to think that this is definitely immune related.

While the walls of the small and large intestines are different, if they can get a drug like colazol to work on the membranes [which is how my GI explained colazol to me]then perhaps they can do that with that viagra derivative psi mentioned?

Also can anyone explain the nicotine phenomenon as it relates to UC? Does it do the same for Crohns?

metrovelvet

I found this article which focuses more on the immune response:

http://www.slate.com/id/2137093/?nav=fo

OK, it's gross: I don't know why I'm attracted to the icky (I'm also not sure I want to know). I found pee in the River Po pretty interesting and was quite taken with the dangers of eating camel liver sashimi. I am fascinated by the charms of head lice and have a scholarly interest in the unfortunate side effects of a weight-loss pill. Today I am hot on the trail of a new treatment for inflammatory bowel disease that definitely meets my standard for grossness.

The disease: IBD is the general heading for two severe and serious disorders that cause inflammation of the intestines: Crohn's disease and ulcerative colitis. Both cause pain and diarrhea as well as weight loss and, in children, poor growth. In the long term, patients with ulcerative colitis are at substantial risk for colon cancer.

How it works: The mechanism that leads to IBD is not well understood. But it has long been suspected that IBD damages the bowel wall as a result of an aberrant and overactive immune response—one in which activated immune cells release toxic materials that hurt nearby cells. The same kind of "autoimmune" damage is most likely the underlying cause of other diseases in which cells of the immune system destroy normal tissue cells—multiple sclerosis, for instance, and Type 1 diabetes. The cells responsible for this kind of damage are called Th1 cells.

The diseases we typically think of as "allergic" diseases, by contrast—asthma, for instance, or food allergies, or eczema—are activated by materials released by a related immune cell, the Th2 cell. Fascinating to immunologists is our state of Th1-Th2 balance. If the Th1 cells are intentionally stimulated, then the Th2 cells become less active, and vice versa—activated Th2 cells tone down Th1 cells, which is exactly what helps relieve IBD.

The icky part: An audacious and creative scientist at the University of Iowa, Dr. Joel Weinstock, asked this question: What if the bowel of a patient with IBD was stimulated to increase the Th2 immune response and reduce the activity of the Th1 cells damaging the bowel wall? Hmmm—how to do it? Intestinal parasite worms cause the desired Th2 response, but infection with human parasitic worms causes lots and lots of trouble. Parasites, however, tend to be faithful to their species of origin, so what about the worms of a different species? Weinstock and his group decided to feed IBD sufferers a drink containing the eggs of the pig whipworm, a swine parasite known not to survive long in humans.

Results: In a test of seven patients, four of whom had Crohn's disease and three of whom who had ulcerative colitis, the whipworm-egg treatment resulted in the complete remission of symptoms for six. The seventh patient's condition was improved. This remarkable effect was better than would be expected from any combination of medications. But it was temporary. Patients needed repeat doses of the whipworm-egg drink every three weeks to maintain the improvement. Four patients who were given such repeat treatments continued to do well for the duration of the 28-week experiment.

Caveat: I suspect that the IBD story will turn out to be more complex than these preliminary results indicate. I hope so, because even if the results of this small study are replicated, drinking pig whipworm eggs will be a hard sell with my patients.

GuanYin

Interesting timing, I was over in UCD today where I met Billy Harnett from Strathclyde and he gave a short presentation on the parasitic nematode product ES-62 for treating human inflammatory diseases

HelterSkelter

metrovelvet, Dr. Joel Weinstock has completed more tests with a larger sample of patients since this article. I can't find the link now but there was complete remission in 50% of UC patients and 75% of Chron's patients. I would be more than willing to drink a cup of worms if it was the cure for UC!!

edit: here is a link
http://www.newscientist.com/article.ns?id=dn4852

Regular doses of worms really do rid people of inflammatory bowel disease. The first trials of the treatment have been a success, and a drinkable concoction containing thousands of pig whipworm eggs could soon be launched in Europe.

At the moment the concoction cannot be stored for long, so doctors or hospitals would have to prepare fresh batches of the eggs for their patients. But a new German company called BioCure, whose sister company BioMonde sells leeches and maggots for treating wounds, hopes it will soon solve the storage problem.

It plans to launch a product called TSO, short for Trichuris suis ova. Chief executive Detlev Goj says the company will apply for approval by the European Agency for the Evaluation of Medicinal Products as soon as the product is ready.

The pig whipworm was chosen as it does not survive very long in people. Patients would have to take TSO around twice a month. The human whipworm, which infects half a billion people, can occasionally cause problems such as anaemia.

The latest trials, carried out in the US, involved 100 people with ulcerative colitis and 100 with Crohn's disease, both incurable and potentially serious diseases collectively known as inflammatory bowel disease.
Remission rate

In many of the volunteers the symptoms of IBD,¬ such as abdominal pain, bleeding and diarrhoea, disappeared. The remission rate was 50 per cent for ulcerative colitis and 70 per cent for Crohn's, says gastroenterologist Joel Weinstock of the University of Iowa, who devised the treatment.

"A lot of researchers couldn't believe this treatment was effective, but people are always sceptical when confronted with new ideas," Weinstock says. He will announce the results in May at a conference in New Orleans, and full details will soon be published. "With our new impressive results, we can come out of the closet," he says.

The trials follow the success of a pilot study, revealed by New Scientist in 1999. Weinstock came up with the idea of using worms to treat IBD after noticing that the sharp rise in the disease over the past 50 years in western countries coincided with a fall in infections by parasites such as roundworms and human whipworms. IBD is still rare in developing countries where parasitic infections remain common.

Weinstock's theory is that our immune systems have evolved to cope with the presence of such parasites, and can become overactive without them.

inchydoney

i will be strating this TSO treatment shortly for u.c. after having tried all conventional medicines.i have been told i need surgery to get off my steroids after 2.5 years. the website for this treatment is www.ovamed.de. its very intersting.while i am hopefuly i relaise it may not be a success. it is worth a try.it is expensive - over 3k for 10 doses- and not reimbursable yet from health insurere because treatment is not fully approved yet.ill post my progress.

HelterSkelter

Hi inchydoney,

where is the treatment being administered? In Ireland or abroad?

Keep us updated.

chump

inchydoney wrote:

over 3k for 10 doses- and not reimbursable yet from health insurere because treatment is not fully approved yet.ill post my progress.

Sounds quite cheap tbh... Let us know how you get on

The_Conductor

Its most probably tax deductable- so make sure you fill out your Med 1 form.

Re: Crohn's disease- here in Ireland we are funding a number of research projects investigating this disease and its related complicated complications, in other mammals (most notably Johnes Disease of cattle- which curiously is a notifiable disease) Teagasc and the APB Centre are at the forefront of research in this area.

Its still thought the MAP (Mycobacterium avium subsp paratuberculosis) contamination is the principle cause of Johnes disease in cattle (with up to 50% of some herds showing signs of this contaminent).

In Crohn's disease MAP contamination does appear to be present- though it is thought that this is more as an association rather than as a causal agent (trials ongoing).

Through trial and error I have found that some foods seem likely to trigger reactions that can lead to Crohn's attacks in myself- such as foods that contain high levels of Monosodium Glutamate (MSG, or Ugami- the universal flavour enhancer beloved of Chinese restraunts, packet soups, sauces and crips and other savoury snacks.....) or curiously enough in my case Maize products and their derivatives (including corn flakes etc).

I'm on 250mg daily of Imuran at the moment- which does seem to be helping- which would to me tend to suggest that at least in my case that my Crohn's is the result of an over active immune system, rather than an underactive one.......

Thankfully- us humans do not (yet) have to put up with the same diagnosis as other mammals- which is "immediate slaughter on diagnosis or suspicion of infection".......

Ps- I really should stop reading all the research in mamals, its an occupational thing as well for me though- I work in the Department of Agriculture

inchydoney

Hi

The treatment is adminstered from Hamburg in germany. You have to get a GP letter prescribing it to you and stating that they will monitor you while on it. You may have difficulty trying to get your GP to so this seeing as it is not an approved drug yet. All you can do is go along with all the information to them. I was in St Vincents on Friday and they had never heard of the treatment. They have promised to read up on it.I was pretty surprsied. Anyway they told me to go ahead (i had alrady started) and try it and come back to them in 6 weeks and decide if i want the op then or not. so that should give me enough time to give the worms a chance to work.

I took my first dose on friday 11th Aug. SO I am heading into my second week now and will take my second dose this Friday. I started with 2500 ova. The first week was pretty bad - i got worse.I am up regularly at night (6 times) and then the morning time is very bad. It does state that with the treatment you normally do get worse first. My weekend has been ok and right now on sunday night i feel pretty good.I hope this week is better but i believe you can be bad for a couple of weeks before things start to improve if they do at all. I have also changed my diet and am only eating rice, potatoes, fish,chicken,turkey,eggs at the moment as i have been in a flare up since reducing my steroids and removing asacolon (due to headaches).

Ill post again soon and let you know progress. Note I also receive accupuncture and homeopathy.Im trying everything on this witht he last resort being removal of the large intestine.

DrIndy

sounds interesting! keep us posted............

inchydoney

Hi There

Sorry for not having posted in a while but i have been tracking my daily progress.

I am getting accupuncture every week - homeopathy once per month as well as being very strict on diet. I am taking large amount of omega 3 fish olis and manuka honey. Living on rice cakes/fish/egg/baked potato......did i mention fish and more fish...very sick of diet at this stage!

As mentioned took first dose of TSO on 11th August. Things got worse - more bowel movements, more blood/mucous and diarohea. Nights were bad as well as days. Also had problems with joints - apaprently this happens with colitis - as it is a problem with inflamation.

Weighed in St Vincents on 18th August - now 80 kg - lost nearly 1 stone in 4 weeks.

Took second dose TSO on 25th August. Still things were bad - still up a night and really drained during the day. All the symptoms still.

Chinese Herbs on 29th August - things have improved. Less bowel movement especially during the day. Still up at night time. Still have blood etc.
Also started taking manuka honey and bio-oils (omega 3) - had been taking cod liver oil to date but aparently there is omega 6 in this too. You want to reduce omega 6 and increase omega 3 fish oils.

Some days long spell with no pain and no toilet visits.
At times stools are more solid too.

Wed 6th september - Next dose of Chinese herbs (these are supposed to stop the bleeding) - this was the first night in about 2 months where i slept straight through the night! The following day was also excellent with no pains and very little blood and bowel movements. PLACEBO maybe!!

Took 3rd dose TSO on 8th September. Things worsen immediately..more blood and b.m - diarohea. Very disappointed as thought things were improving.Have lost a lot of weight - now at 76 kg.

So here i am on the 10th September and things have defintely improved. The blood has more or less stopped today. Have had quite a number of b.ms though. Pain is a lot less frequent. My night visits are defintely reduced.

At the moment I am thinking that the chinese herbs and accupuncture is doing the best work. i am presently unsure about the TSO although every time i take it i seem to get worse for a while (so it could be working). I ordered 3 vials of it and it was posted to me here in dublin from hamburg - so the postal service works. Also if you have a VAT number you can get it without VAT - 16%. Again they say it works for 50% of colitis patients and 70% of chrons. I will take my next 2 doses (No.4 on 22nd Sep and No. 5 on 6th October) and see if I will order more then. Ill be back in Vincents on the 6th October - they ant a decision on operation. Presently I feel i can avoid the op if i keep improving.

Right now though i have defintely improved - whether it is TSo or herbs I dont care.

Meant to say Joint problems have cleared up - knees and foot. Back is still a bit sore.

Ill post again in a few weeks hopefully with positive results

All the best

HelterSkelter

Thanks for posting. Keep us updated. Hope things continue to improve for you.

inchydoney

Hi again

an update since 8th September (Dose #3)

the first week there was an improvement but this soon disappeared the second week. Less symptoms and the first time in 2 months to actually sleep a whole night. Again though i did take Chinese herbs on 10th and improvement may be down to this.

The second week it was back to being up again 6 times during the night with all the symptoms

22nd September – Week 6 – Does #4
Seem to have some relief during day time – long spells symptom free. Nights and morning still bad

Still up 3 times at night

6th October – Week 8 – Dose #5
The first weekend was good but then a definite downturn. Symptoms got worse. Up at night a lot. Could not go to work much in this 2 week period. Very tired during the day as getting no sleep at night. Mentals are really being affected at this stage…..

Called Ovamed in Germany and explained about how my symptoms seem to improve and disimprove so much. They suggest stopping Chinese herbs and homeopathy and reducing my dose by half but take it every week instead. This was let the worms work on their own and introduce them to my body at a lesser dose but more regularly. The dose is still the same – 2500 ova over a 2 week period – but split it into 2 doses of 1250 ova and take every week.

I stop all other medication except steroids obviously to see what worms do on their own.

20th October – Week 10 – Dose #6(a) – Taking a half dose now every week
This week again has been very bad – I am up every night about 6 times – body is very week – in work only some of week


27th October – Week 11 – Dose #6(b) – 1250 ova
Got up Friday morning at 4am to take dose. The blood has reduced the last couple of days but frequency of bowel movements and cramping has not changed. The day time has been ok today but now as I hit evening I anticipate an awful night again.

Over the last 3 months I have only got 3 nights sleep straight through – and that means not waking til 7am. I have been bleeding now for 3 months also with very little let up. I have changed my diet and am not as strict – I make a lot of soups using chicken, lamb and veg etc. I am still having acupuncture every week.

At this stage I am very disappointed. I am thinking of trying it for just a couple more weeks. I have 2 vials left to take on 3rd November – Week 12 – Dose #7 and then 17th November – Week 14 – Dose #8. I don’t even know if I will go this far to be honest as I don’t think the worms are working. Most people have a response between the 3rd and 5th dose.

Looking back on any improvement it looks like it occurred whenever the chinese herbs were involved. So I am thinking of stopping worms and devoting time to the herbs properly.

I’m getting married on December 9th and obviously so many people are worried around me (so am I – I really though I would improve by mow!) that I wont be ok on the day. I will probably have to up my steroids a week or so before hand just to be able to function for the wedding. Upping the steroids was not on the plan though.

Anyway Ill keep going for another week and see how it goes.

PS: Anyone else on steroids get vicious migraines? They are not as frequent – I used to get the every week when on asacolon – but now they have waned to maybe once every few weeks – these are god damn awful – I can be up all night with one of them. Its great – if its not the colitis that keeps me from sleeping – it’s the headaches. It could be due to loss of body fluids, dehydration also.

chump

inchy,

Just out of interest what are you on at the minute.?
I presume aza/6-mp and getting infliximab infusions every few months/twice a year?

All these complimentary things your using, thats what they should be IMO, first things first is you need to get control of the disease, then taper off drugs and perhaps supplement what you take with more homeopathic/alternative remedies.

The_Conductor

inchydoney wrote:

PS: Anyone else on steroids get vicious migraines? They are not as frequent – I used to get the every week when on asacolon – but now they have waned to maybe once every few weeks – these are god damn awful – I can be up all night with one of them. Its great – if its not the colitis that keeps me from sleeping – it’s the headaches. It could be due to loss of body fluids, dehydration also.

I find that if you make sure you have your daily dose taken by 2-2.30PM at the latest so that they have time to dissipitate in your system for a few hours that you have an easier night. I know what you mean about the headaches though..... Its difficult to function socially when you're constantly on the lookout for a bathroom, or feel like you have a hang-over from hell, despite the fact that you haven't drank in months.

DrIndy

the natural cycle of steroids is to dip overnight and rise in the morning, taking steroids in the morning reflects this. Taking them at night stimulates your body and keeps you awake at night.

inchydoney

Cheers

The only medication im on is 15mg deltacortril - steroids - each day.

i have tried asacolon/ 6 mercap / imuran - all those that suppress my immune system - they didnt work - they made me worse in terms of side effect. Think the asaclon was working but headaches were so bad i had to pack it in.

have not tried infliximab -dont know enough about it and the doctors dont seem to know either - have thought about trying it alright and may well do before the wedding.

i have a script for an alterrnative to asacolon - dipentum - i may also try that soon

chump

Personal opinion - try the inflixi.
Second opinion, get a doc who will at least suggest this to you. It's important to have a doc who is well clued in and willing to try, or at least suggest, things.

Third opinion, with fully active diease things like asacolon (those mesalazine/& derivitive drugs etc.) will have a hard time curtailing disease activity. Wait until in remission before try them - will give better idea of side effects in terms of fatigue and headaches they cause as well. Of course, this is my opinion, go ahead and give em a bash if you feel like it

Fourth opinion - 6mp/imuran - how long did you try for and what dose. imuran ranges from 1.5mg - 2.5mg per kg body weight dosages. They take up to 6months to kick in. What were you on and for how long before you gave up on them? These drugs are regarded as very very important in poorly controlled disease, and should be given a full decent chance to work. Also there are tests that can check optimum levels (and Im not just talking white blood count tests).

Fifth opinion - immodium? You can get scripts for this, up to 3or4 pills a day. Can make a world of difference, and is fully acceptable therapy to combat symptoms. Codeine can even be perscribed.

Sixth opinion - I can't stress this enough and it's a repetition of point 2. Get a good fricken doctor. Someone who specialises in IBD. If looking for a name or 3, PM me.

I have UC, had a dud doctor, who happens to be a GI specialist in a top hospital in ireland. Luckily I couldn't absorb enough information about my disease plus therapies etc.etc. and so learned I was being poorly treated. Met a good doctor, who was more in keeping with cutting edge therapes, good dosages, and is very easy to communicate with and talk to.

Haven't looked back.

oh and if things are heading in the direction of surgery there are some good websites out there including www.jpouch.org and www.the-ia.org.uk

Always worth checking the alternative if quality of life has dipped too much for you.