ADVERTISEMENT
157,761 registered users

| |
(Friday, 1st Aug, 2014)

Crohn's Disease

308 Comments
Sort by
Join the discussion...

23 Posts

CD  ·  18 Feb 2009

Hi,

I have been on Imuran for the last 8 years. I have not had too many side effects at all, except the bruising. I am now on Humira aswell and its all going good.

 

19 Posts

wally  ·  18 Feb 2009

Hi I was on Imuran last year and was ok for a couple of months until they increased the dose. i then got pleuracy and spent a week in bed really sick. they say it wasnt down to the drugs but i didnt take them for a few days until i got better and then tried them again, the pain in my back from the pleuarcy came back straight away so im convinced it was that. Maybe it wasnt but do your own research on the drug and dont mind what other people tell you, what may work for one may not for another. it may be perfectly fine for you, good luck with it.

 

6 Posts

elnino9  ·  17 Feb 2009

Hi Ive had Ulcerative Colitis for just over a year now. Im 22. since then ive been on three seperate doses of prednisone and been taking pentasa. My Doctor is now talking about puting me on imuran. I have heard there are alot of side effects and it requires close monitoring. Just wondering if anyone could give me some advice on this drug?

 

2 Posts

johns wife  ·  17 Feb 2009

A friend of mine has just been put back on 6 mp(50mg daily). She plans on travelling to the sun later this year. Having researched the side effects of this drug,it states to avoid sun exposure.....yet when she put this to her doctor he joked it off by saying i presume you'll be using sun cream!! Would be interested to hear any comments with regards to this drug and how successful or not it is in maintaining remission in Crohn's. Already she says she feels tiredier,like it is sapping her energy levels.

 

12,082 Posts

Anonymous  ·  06 Feb 2009

Thanks for the rice milk idea Niamh. That's great. I'll pass it onto her. The seaweed would be a great idea too except that its absolutely contraindicated for her as the iodine is inflammatiry to her thyroid and can result in thyrotoxicosis (not nice). The hypothyroidism is well (and very easily) managed, thankfully. It's her chrons that seems to be the ongoing problem. GPs I think spend 7 years in college, then it's more for consultants but probably different for different specialities of course. Yes it was a nutritionaist she went to alright, I'm not sure it was a naturopatic nutritionist, but this lady and medically qualified and certified and my cuz was referred by her doctor. I didn't realise that naturpathy was a recognised field of medicine. The principles tho' with the exception of the one about the healing power of nature, seem exactly the same as any doctor works with. I would agree tho that the body has an inherent ability to establish, maintain, and restore health but this ability can and does break down, sometimes frequently and this is were we need need doctors and medicine. When you say that shortly nutritional therapists will not be able to practice without degree qualifications - do you mean that they can currently do so?? I am sure that my cousins nutritionist was appropriately qualified with degree / post-grad medical status but I'll certainly mention it to her to make sure she was going to someone well qualified. I do know that extensive allergy testing was done. I actually thought this would be standard for anyone in that situation. Usually health insurance can cover some or part of the allergy testing - but best to check, I suppose. Thankfully she doesn't have IBD. It must be such a lot to cope with for people who have all three.

 

23 Posts

CD  ·  05 Feb 2009

Hi,

I know this is not a comment but there is a group on facebook in relation to Crohn's if anyone is interested. It is more of a how are things going and a bit of a forum for views, ideas and compliments Irish Health...............

 

50 Posts

Niamh  ·  05 Feb 2009

Continued from Naturopathic PrincipalsYou can see that some of these principals go against the way the medical profession treats patients.  My favourite is the law of cure, the belief that the body does not want to be ill and will heal itself given the right circumstances, whether that is taken away food allergies or finding out why the immune system is in a state where it is attacking itself.  Both colleges I mentioned are thought through the naturopatic principals.  Although the practice of naturopathy by itself is not a well regulated, nutrition is.  Especially members of NTOI in fact shortly nutritional therapsit will not be able to practice without degree qualifications which means the colleges are teaching to a very high standard.  The nutritionist the doctor recommened may have been one from a traditionally medical background which could explain why she wouldn't recognise conditions such as LGS they don't acknowledge candiditis as a condition which can cause problems in the body.  In our college for instance they probably wouldn't give some one with crohn's disease a food allergy test.  Surprising I know!  The reason for this is because when you're body is in such an inflammtory state you are more likely to react sensitively to anything even if you're not allergic to it!  Allergy testing can be very expensive as well!!  The best thing to do is to have a conversation with the therapist over the phone first and ask them if they have experience in treating IBD and if they've had a lot of success.  I suppose it's a matter of choice by the patient which route they choose to take.   

 

50 Posts

Niamh  ·  05 Feb 2009

Are you sure that it was a nutritionist and not a dietician?  There is a difference between a naturopatic nutritionist and just a plain nutritionist. Naturopathic medicine is different because it is based on 6 principles and they are so positive!

*First do no Harm: Therapeutic actions should be complementary to and synergistic with the healing process.  Methods designed to suppress symptoms without removing the underlying causes are considered harmful and should be avoided or minimized.

*Healing power of nature: The body has an inherent ability to establish, maintain, and restore health.  The physician's role is to facilitate this process by restore a healthy internal and external environment.

*Identify and treat the cause: Illness does not occur without cause.  Underlying causes of disease must be discovered and removed or treated before a person can recover completely from illness.  Symptoms express the body's attempt to heal, but are not the cause of disease.

*Heal the whole person:  Health and disease are conditions of the whole organism The harmonious functioning of physical, mental, emotional, and spiritual aspects are essential to recovery from and prevention of disease.

*The physician as teacher: The physician's major role is to educate and encourage the patient to take responsibility for their own health.  It is the patient, not the doctor, who ultimately creates/accomplishes healing.  Teaching with hope, knowledge, and understanding, the physician acts to enable patients to heal.

*Prevention: The ultimate goal of any health care system should be prevention of disease.  This is accomplished through education and promotion of life-habits that create good health. 

 

50 Posts

Niamh  ·  05 Feb 2009

Rice Milk can be used as a substitute for any recipes containing soy milk, it actually tastes alot better than soy as well! And sea weed can be used in place of stock cubes or salt when making soups, stews or salads. It is a bio available form of calcium and richest source of iodine available- important for thyroid function.

There are SO MANY books available on chrohn's and hypothyroidism. You can't just rely on your doctors to keep you informed about your condition. There are lots of natural remedies to try before you choose to go on medication, but your doctor will not tell you about these and why not? Well most Doctors will spend 5-8 years in college studying, they specialise in the use of pharmaceutical drugs and surgery. Some will choose to go back themselves and learn about natural medicine but they won't earn any more money by doing this so there is no incentive for them, especially with their crazy schedules. So what's the other option.... to read up on information for yourself. Read books published by doctors who also take a natural approach so there's lifestyle, diet, supplements and medication discussed to support recovery. Most books and supplements on amazon will include a review and you can leave one yourself! Some patiens may never have to go on medication and for others it will be a reduced dose as symptoms won't be so extreme. : )

 

12,082 Posts

Anonymous  ·  05 Feb 2009

Hi Niamh, thanks for your reply. In the first part of your post, I was going to say that it sounded like what used to be refrred to as Leaky Gut Syndrome. The homogenisation of milk is only a recent thing - I remembr when all milk bottles usedto have cream on the top. I see what you man about breast milk, naturally if breast milk made cetrtain children ill, in early history, there being no real substitute, evolution wouldn have dictated that that genetic strain simply died out. Yes, she was with a certified nutritionist (referred by her doctor) fo a couple of months and went through extensive allergy testing - but as I said, in her case, it's an auto-immune reaction, unfortunately. The interestig thing was and this is why Leaky Gut came to mind when you mentioned it, was that the nutritionist said that LGS was simply an invention but alternative therapists for something which was not in fact an actual medical condition at all. You mention that nutritional therapy is based on the principals of naturopathy? That's interesting too - is that a new requirement? I ask because I don't think my cousins nutritionist was also a naturopath? In fact, I didn't think naturopathy as a recognised medical field at all? Now maybe I am way behind in all this. Thanks for the details, sure I'll pass them along to her nd she might give the nutritionist another go. Thanks

 

50 Posts

Niamh  ·  04 Feb 2009

Hi Anon - it is such an interseting topic!   I've been reading alot about digestive health as I'm studyng nutrition at the moment, what I've learned is that dairy can actually be the most pro inflammatory food!  The reason for this is because we are given it from such a young age. A childs digestive tract is extremeley permeable and milk particles can actually leak out into the tissues.  The body then see's these particles as foreign and will begin to attack it.  The body's immune system has a memory and will then be senitised to these molecules during future contact, and the place the immune will meet these molecules is in the digestive tract causing an inflammatory reaction!  Now a days all milk is homogenised which means it is processed in such a way so that the cream and milk do not seperate.  This is done by forcing the milk through tiny holes under pressure so that the milk molecules themselves become tiny, a topic under debate at the moment because it is purely for aesthetic purposes.   But obviously smaller molecules can more easily pass through permeable membranes.  Breast milk (for most cases) does not react the in same way.  In my previous paragraphs written I've actually mentioned that being breastfed as a child actually lowers your risk of developing Crohn's or ulcerative colitis which is extremely interesting when we look at what can happen with dairy!!  The gut wall can also become damaged during adulthood and permeable, a condition known as leaky gut syndrome, when this happens other  types of food molecules can leak out into the tissues and cause inflammation so it becomes a viscious cycle.  Inflammation which would not otherwise happen if the gut wall was healthy.  Has your cousin ever considered visiting a nutritional therapist, they are not just all about eating the right food, obviously that's a big part.  But nutritional therapy is based on the principals of naturopathy which are to identify and remove the underlying causes of illness.  They would always work alongside your doctor and they could recommed foods high in calcium if they did end up advising some one to cut out dairy.  I have given details about how to find the best therapists in my emails below if anyone was ever interested.

 

296 Posts

Broken  ·  04 Feb 2009

That is VERY interesting about Soya milk for replacing cows milk.

I too, have hypothyroidism and coudnt tolerate soya, I dont know why, but I am off it now.

I am on long term use of low dose and sometimes not so low dose of Entocort 3mg daily.

Recently I heard that this med as it is steroid based can increase the risk of cataracts and glacoma, both of which are 'in the family'.

I heard this from an eye specialist I went to to consider plaquenil for sjogrens, ?lupus. A drug not recommended by this consultant either as I have Rubella retina damage and detached vitreous.


"Please God, help the ignorant!"

 

4 Posts

sunny  ·  04 Feb 2009

I've had UC/crohns for 5 years (indeterminate IBD) and have tried every diet, complementary treatment, supplement around but nothing kept it at bay for long. last autumn i had my colon removed and now have an ileostomy and i'm very happy with it - no more rushing to the loo, no more medications. obivously surgery is a last resort and not always an option for crohns but i just wanted to say that if anyone has to face it as an option - i for one am much happier and healthier after having surgery.

 

12,082 Posts

Anonymous  ·  04 Feb 2009

Hi All, I have a cousin withg Chrons so I find this very interesting. Thanks for all the advice. Unfortunately in her case it is autoimmune so diet won't change it. What I would say tho' is be very carful about cutting out all dairy, especially for women as it is an excellent source of calcium and by cutting it out you will need to get your calcium from other bioavailable sources. Some women find soy good for this but in my cousins case she cannot take soya as it is contraindicated for her hypothyroidism - also autoimmune but thankfully much easier to control.

 

50 Posts

Niamh  ·  04 Feb 2009

Broken

I just remembered a book that I think you could use it's called 'Cooking Without Made Easy' by a woman called Barbara Cousins. It is a recipe book without the use of gluten, sugar yeast and Dairy. It has lovely ideas including a thai green curry made from scratch. It has starters, main course and desserts and she designed it for her own clients as a healing diet with amazing results, she talks a bit about them and her own story at the beginning of the book. It's available on amazon with good value because of the exchange rate!

 

19 Posts

wally  ·  04 Feb 2009

I think this is a great idea. i have always thought about this. i was not breast fed and growing up in the 70's we were given a lot of processed foods and additives were being added etc... i also have high cholesterol now aswell so am trying to eat more healthy. so hopefully this will help my Crohns aswell.

 

50 Posts

Niamh  ·  03 Feb 2009

The best way to find a nutritional therapist is through NTOI Nutritional Therapists of Ireland. All members are fully insured and have to be trained to a certain standard. You can find a practitioner near where you live on there website.

There are also various student clinics run around the country in Dublin, Cork, Galway, Limerick which are supervised by fully qualified nutritional therapist but at quarter of the price if that's an issue. Two of the main colleges are ICIM-ireland and CNM-ireland if you look up either you can contact them about visiting a clinic. I'm just beginning to study it myself and finding it so interesting!

 

296 Posts

Broken  ·  03 Feb 2009

Niamh, I am DYING (not literally)! to get to a nutritional therapist but don't know any.

I think if i stay t a very very bland diet my crohns is good.

I agree, we put too much bad stuff into our bodies.

Sugar, white bread, red meat etc really does my guts in.

Also I have to stick to the same foodstuffs or else...but would love to eat nice tasting food.

Gone down three dress sizes for when I got sick with other stuff, food is not a nice idea anymore unless out of a bottle er, fortisip, not the 'dark stuff'


"Please God, help the ignorant!"

 

50 Posts

Niamh  ·  03 Feb 2009

Has anyone tried going to a nutritional therapist?  My friend had a very bad case of crohn's with alot of bleeding and pain.  She went to a nutritional therapist who put her on a strict diet and all her symptoms disappeared within a month.  They say they don't know the reason why Crohn's disease occurs but surely the fact that we are putting so much chemicals into our systems through additives, pesticides, water qualitiy etc has something to do with.  And the fact that we can damage our beneficial bowel flora through anti biotic usage the very thing that is there to protect the lining of our stomach.  In fact it has been proven that the longer you've been breast fed the less of a risk you have of developing crohn's disease.  This might be stating the obvious but does it not make more sense to examine what is actually passing through your stomach to see if that helps.  When going to a nutritional therapist they already have a good idea from their studies the kind of food that can have an inflammatory and indeed an anti inflammatory affect on the body.  For example I address the lady who can't tolerate iron, myself I get very bad cramps from iron supplements but recently i've been taken fresh beetroot juiced an easily absorbable form of iron which is non irritating.  Has her doctor suggested this?  We certaintly need our doctors but I believe the way forward is a combination of both medical and complementary therapy together. 

 

1 Posts

Nick  ·  28 Nov 2008

I have a close friend in Japan - female, 31 years old - who is suffering from Crohn's, and I suspect that, because the condition is uncommon there, she is not getting the most enlightened advice. Are there new treatment regimes which I could let her know about?

 

296 Posts

Broken  ·  18 Nov 2008
I was on Pentasa for years until I read in research somewhere that it really has little effect for crohns and more for colitis so I asked my gastro if I could come off it. He said I could. No ill effects. But please, dont do this without consulting. I dont have a 'bad case of crohns' even though I have had one ileal resection.
I am off Pentasa now at least a year or a bit more.

"Please God, help the ignorant!"

 

2 Posts

louise (KKI77765)  ·  18 Nov 2008
Hi Pep,
Congratulations! I was on no medication during my pregnancy and did not go back onto it after my baby was born. I did drink the aloe vera gel though. If your doctor is recommending you stay on the pentasa,I'm sure it's ok! I just felt that I didnt want to take anything while I was pregnant. Wishin you all the best
 

- Posts

Anonymous  ·  17 Nov 2008
Hi Louise, can I ask you did you take pentasa throughout your pregnancy? I am nearly 7 months pregnant and I have been recommeded by the hospital to stay on the pentasa.
 

2 Posts

louise  ·  10 Nov 2008
hello,
My name is Louise and I was diagnosed with Crohn's Disease in 1997 when I was 13. I was treated by an excellent gastrointestinal doctor and fitted with a feeding tube. I was prescribed Pentasa, imuran and steroids. I was under 6 stone and very ill. I was aneamic for 10 years and was allergic to iron. I was given iron intra venously and went into anaphalactic shock. In January 2007 my stomach was so swollen I looked 6 months pregnant. I was rushed into A&E and put on a high dose of painkillers and a drip. I ended up having surgery. My large intestine was rotten and my small intestine was blocked and inflammed. My appendix was inflammed too. So I had a lot removed. I was told there was a 50% chance of the disease reoccurring. By May I was pregnant and I had a wonderful pregnancy, a natural birth and an 8poubd 5oz baby boy in January 2008. I now weigh 8 stone and I can eat anything I want. I have never had any flare ups or pain since January 2007. Last summer I was officially declared cured from Crohn's Disease. I drink Forever Living aloe vera gel every day and i would like to let people know that th while there is no cure for this horrible illness, there is hope.
 

- Posts

Anonymous  ·  29 Feb 2008
hi i have crohns for nearly ten years. just wondering if any one can help. i was with my dr the other day, to cut long story short, i was put on more tablets as well as what i am already taking. apparently this is to do with not having gallbladder anymore .... ttc for 4 years having problems .... has anyone else had trouble conceiving........attending hospital for this but just had 1st visit 2 wks ago so not back for 2 months. very confused about meds, what they can do on imuran, pentasa, questran?
 

- Posts

Anonymous  ·  26 Feb 2008
I had my appendix removed in 1998 as I had severe abdominal pain, this helped periodically even though my appendix was not inflammed. In 2000 I was diagnosed as having Crohn Disease. I had a perinal abbess removed and I deterioated badly lost a lot of weight and had a lot of discomfort. In 2004 I had accupunture which helped a lot but still had bad bouts which I would have to take to the bed every 3 or 4 months. I was referred to a consultant in 2005 and was put on Pentasa sachets, these helped slightly but what really helped was when I gave up smoking I begin to improve drastically within weeks, I also take Manuka Honey UMF 5+ or higher. I have now been in remission for 2 years and only take 1 Pentasa sachet a day, how my life has changed for the better.
 

- Posts

Anonymous  ·  20 Feb 2008
I have a reasonably mild form of Crohns although I have had one resection in 02.
It can be difficult especially with food and more and more food is a huge problem as my body seems to reject it.
I have developed chorea, dystonia and sjogrens and raynauds and have neuro probs with muscle wasting etc.
I would be very interested to know if others with crohns have gone on to develop other autoimmune conditions or neurological implications.
Or have MCTD, myositis or other.
I am at a loss to know why so much is happening to my body and just to get indicators of similar would be enough to try and understand.
In anticipation and hope,
 

23 Posts

Ciara (CiaraMN)  ·  19 Feb 2008
Hi Woody, I had a seton placed a few months ago and I have had no trouble at all, so it seems strange that you are having so much trouble. My doctors were fab in this regard as I had so many questions as I had never heard of it. I would definitely recommend a second opinion. I am on codiene but that is not directly for the seton as that is not causing any pain. Sorry I cant be more helpful.
 

- Posts

Anonymous  ·  19 Feb 2008
Woody,I don't think anybody would be allowed name their consultant but some are better than others.When I was first referred I was treated for IBS for 5 long years,despite having classic symptoms including a rectal abscess.I would always seek a second opinion with any serious medical condition,I've known several people with various ailments who did and got totally different treatment plans including one who was advised to have radical surgery by one consultant ie.a hysterectomy at age 28,she didn't and is now in her forties with 3 children and body still intact.I have homeopathic treatment which I find helps keep me well.It's worth trying but it is important to attend a suitably qualified person,there are a few medically qualified doctors who are also homeopaths,they're listed in the golden pages.Good luck
 

1 Posts

Woody  ·  18 Feb 2008
Hi everyone, Im new to this but not to the disease. Im 26 and was diagnosed with colitis in 2003. I was on steriods and immunosurpressants for 2 years then in jan 2007, out of nowhere and over just a month, i got increasingly bad stomach pains. They took away most of my colon (large intestine) and gave me a colostomy bag. They planned to do a reversal of the bag but now Ive developed an abscess on my bum. The surgeon acted like it was simple to fix and put in a seeton to drain it. The pain was -and is- constant and fairly bad when sitting down. Im not on any drugs what so ever but they say they cant decide whether its crohns or colitis.
I feel my life has been taken away. I struggle to work in an office but have to rest by lying on my side the minute i come home.
I dont know if this website allows it, but if it does, can someone tell me who is the leading experts on this disease in ireland? I have full faith in my consultant but id love a second opinion. Id travel anywhere if it would help improve my current situ.
Thanks to anyone who can be of help.
 

4 Posts

starwoman  ·  15 Feb 2008
Thanks Teddy for going to all that trouble for me.

I am curently experiementing with different types of Probitoics.

Also making my digestive terrain more alkaline helps to.

Cheers,

starwoman
 

296 Posts

tearful teddy  ·  14 Feb 2008
For Starwoman!
Verbatim from the Irish Times Suppliment Feb 08 Business Magazine which I wouldnt generally read:
Irish scientists have discovered a potential treatment for inflammatory bowel disease, a debilitating condition that affects more than 15,ooo people in ireland and millions around the world.
At the moment surgery is often the only option for patients suffering from severe IBD, but this could be about to change.
Irish scientists have found that they can almost completely reverse the disease's symptoms using a new class of drugs known as hydroxylase inhibitors.
the principal research scientists involved in the discovery - professor Cormac Taylor from the UCD Conway Institiute,University College Dublin and Prof Padraic Fallon of the TCD School of medicine - are now working in collaboration with Dublin-based drug delivery company Sigmoid Biotechnologies to develop methods of safely delivering these drugs to their intended target area.
They ar ealso collaborating with a research group in the United states that carried out a related study at the college of Colorado Denver to develop a treatment that can be delivered to humans.
This is about the same thing I found in the Irish times health suppliment some time ago but not the article. I will still tryi and find the health article which explains how this treatment works, here it just states the exciting development.

"Please God, help the ignorant!"

 

23 Posts

Ciara (CiaraMN)  ·  02 Feb 2008
Hi, my doctors looked at putting me on Remicade and then decided on Humira which is similar but I can self inject every two weeks so dont have to go the hospital and the Humira nurse was brilliant for my first 2 injection dates, 1 in hospital and 1 at home. For me it has definitely worked. I know the Humira is covered by the standard monthly drugs payment scheme so instead of paying the 1000 an injection I just get it with my imuran and steroids.
 

24 Posts

angel69  ·  01 Feb 2008
Hi Sunny

I am a public patient and am receiving Remicade and have never received a bill for it so i presume your VHI would cover it too. If your VHI does not cover it just go for it as a public patient and it wont cost you anything.
When you start you will have it after two weeks then four weeks later then six weeks later and then every eight weeks is normal. I have it every 6 weeks as i wasnt lasting the 8 weeks.
It really is great, i had tried everything and nothing was working for me, i was in and out of hospital every second week unitl i started the remicade. it took about 3/4 treatment for it to start working for me but when it did it was like a miracle. Ive had a few small flare up since starting but nothing i couldnt handle and nothing like before.
 

- Posts

Anonymous  ·  01 Feb 2008
hi all

does anyone know what is the situation with the cost of/paying for Infliximab also known as Remicade? My consultant is thinking of putting me on it and I have heard its very expensive. I have VHI. would i have to pay for the drug? i know you get it every 8 weeks or so by infusion. it's bad enough to be sick and to have to take all this stuff (I am already on asacolon, imuran, steriods, pentasa suppositories, steroid foam (enema) trying to get a flare under control) withouth having to worry about the cost.

thanks for any info.
 

296 Posts

tearful teddy  ·  31 Jan 2008
I will try for you Starwoman in Australia!!!

I will contact the Irish Times and see if I can get it and transcribe it here on the site.
xTeddy

"Please God, help the ignorant!"

 

4 Posts

starwoman  ·  30 Jan 2008
Dear Teddy, I would be most interested to read the article, I have no way of tracing it from Australia.

thanks,

Starwoman
 

296 Posts

tearful teddy  ·  30 Jan 2008
Hi starwoman,
I didnt keep the article, maybe if you asked the Irish Times archives for I think it was in the main body of the paper and not in the health supplement.
It was quite recent too, in the past month or so, so it might be easy to track. I might do the same but am very preoccupied at moment.

"Please God, help the ignorant!"

 

- Posts

Anonymous  ·  29 Jan 2008
Hi Teddy,

The Posting on the Viagra was that a team of Doctors in London discovered that there was a lack of blood flow in most people with crohns diseaase and Viagra seem to help the immune system with an increase in blood.

I would like to know more about the cure that you have mentioned also in America.
 

296 Posts

tearful teddy  ·  29 Jan 2008
Did you read that a team of researchers in Dublin think they have found a 'cure' for crohns and are going to collaborate with a uni in america who were going down the same road re the basic idea.
I found it fascinating and it was in the Irish Times.
What was the info on Viagra?
xx

"Please God, help the ignorant!"

 
« Prev Page Next Page »
 Return to Topics
 Main Discussion Page
This website is certified by Health On the Net Foundation. Click to verify.
Copyright © 2014. All rights reserved. We subscribe to the principles of the Health On the Net Foundation