Chrones + Collitus

SirIrish

My girlfriend was recently diagnosed with Chrones and Collitus. She was really bad there for a while and lost a lot of weight and was very sick. She's not doing to bad now it looks like it might be steriod dependant. She's on a lot of steriods at the moment. Anyway talking to people it seems that a lot of people know someone that has this and was just wondering if there was anyone out there that has had it a while and what do we have ahead of us?

DrIndy

Its a tough diagnosis, but Crohns disease has many manifestations and a lot of different treatment options. It is unusual for someone to become significantly steroid dependent, as you can tag in azathioprine which acts similarily, but has fewer side effects and reduces the need for this.

Steroids are used in the acute setting as they are very good at immediately shutting down the immune system which is causing the damage by attacking normal tissues, in general, once the inflammation is settled, then the dose of steroids is tapered down again.

Crohns is a permanent disease and unfortunately may be there a while. However, autoimmune diseases are unpredictable and can burn out or simply go into remission for many years.

Colitis refers to the fact that the crohns disease is primarily affecting the large intestine.

Here's a page of reliable, scientific links to understanding more about the disease:

http://www.nlm.nih.gov/medlineplus/crohnsdisease.html

Kernel

Anastacia suffers from Crohn's disease, apparently it can be a lot like irritable bowel syndrome, and can be managed well enough with a good diet - depending on how bad it is.

DrIndy

Kernel wrote:

Anastacia suffers from Crohn's disease, apparently it can be a lot like irritable bowel syndrome, and can be managed well enough with a good diet - depending on how bad it is.

No, crohns and ulcerative colitis (inflamatory bowel disease) are very different from IBS and are in a league of their own. They are autoimmune disease where the immune system attacks and inflames and damages the bowel. Ulcerative colitis is restricted to only the large bowel, but crohns disease affects the entire length of the bowel in segmental fashion. Severe crohns disease can actually result in fistulae where the bowel opens up into the bladder or skin or other parts of the bowel and is very serious if not treated.

They however uncommonly result in such a presentation and instead go into phases of relapses and remission and can be controlled well with one or a combination of drugs.

Currently the new therapies are very effective. Infliximab is an antibody which binds TNF-alpha, a cell signalling molecule which is active in crohns disease. When this is depleted, the inflammation settles like magic and cures almost everyone with the severe form of the disease.

However, each infusion costs €3000 per go and the average course is 3 infusions and then repeats every few months. Due to the cost, it is not readily available. I recently infliximabed a few of our patients and it is a godsend, getting them into hospital (bed shortages - this is an "elective" procedure) and the infusion approved is a nightmare!

Kernel

DrIndy wrote:

No, crohns and ulcerative colitis (inflamatory bowel disease) are very different from IBS and are in a league of their own. They are autoimmune disease where the immune system attacks and inflames and damages the bowel. Ulcerative colitis is restricted to only the large bowel, but crohns disease affects the entire length of the bowel in segmental fashion. Severe crohns disease can actually result in fistulae where the bowel opens up into the bladder or skin or other parts of the bowel and is very serious if not treated.

They however uncommonly result in such a presentation and instead go into phases of relapses and remission and can be controlled well with one or a combination of drugs.

Currently the new therapies are very effective. Infliximab is an antibody which binds TNF-alpha, a cell signalling molecule which is active in crohns disease. When this is depleted, the inflammation settles like magic and cures almost everyone with the severe form of the disease.

However, each infusion costs €3000 per go and the average course is 3 infusions and then repeats every few months. Due to the cost, it is not readily available. I recently infliximabed a few of our patients and it is a godsend, getting them into hospital (bed shortages - this is an "elective" procedure) and the infusion approved is a nightmare!

Whoah, I didn't think it was so serious. That sucks... poor Anastacia.... Although I reckon she could afford the infusions (I'd give her an infusion any day).


With regard to the bed shortages, as an intern, what do you think could be done to better manage the health services, and do you think that Harney will fix it?

DrIndy

The health service is a health system where there are a huge number of factors involved. There is no quick fix. The health service has been referred to as a financial black hole because no matter how much is invested, it is never enough. This is true because if you substantially increase funding - then the average life expectancy increases and you still have a black hole as people will always get sick.

There are a few key areas that need to be considered:

Shortage of acute beds - there is a shortage of acute medical and surgical beds because there are few step-down facilities in ireland where people can be transferred after they are well enough for minimal medical care and primarily nursing care. This is also related to a shortage of other health care professionals such as Occupational and Physiotherapists who get people out of hospital and home and back to daily life safely (if someone is bad on their feet and go home to a house with loads of stairs and loose rugs, they will be straight back in after another fall).

Shortage of community facilities - currently we have GPs and Hospitals, in Britain they are developing community hospitals which are GP led and permit a medical/nursing oversight with extra care above a nursing home standard that people sometimes need. They also have paediatricians and other specilities working in the community.

Shortage of Doctors - currently there is a gross shortage of doctors, although we can deliver immediate treatment where needed, it is often frustrating to me when I simply don't have enough time to get to know patients and tailor treatment to their needs. The training schemes need to be improved to stop driving the best away from ireland to other countries....

The list goes on.....

Harney can fix it, she is determined, but only if there is an increase in funding from the department of finance.

DrIndy

Regarding Ulcerative colitis, in severe disease, resistant to treatment, it is often neccesary to remove the entire large bowel as a curative procedure. Also in crohns, if there is fibrosis or a particularily diseased stretch, it also has to be surgically removed to partially cure the disease......

SirIrish

Thanks for the info DrIndy.
Hmmmm....this sucks.

She's been reducing the steriods over the past while from 10 shes now at four and it looks like it's starting to flare up again.
THis Infliximab sounds good . :::: Mental note: Win Lotto and pay for Infusion:::

SirIrish

Is it true that your body can't(or has a hard time) absorb vitamin b12 when you have chrones??

DrIndy

Crohns has many different presentations and so it can be very different for different people. Many people have much milder symptoms than those needing infliximab.

If crohns can affects the end of the small intestine, then they will have problems binding absorbing B12. It has a very specific uptake mechanism, relying on intrinsic factor produced in the stomach binding to the vitamin and then being absorbed at the very end of the ileum (small intestine). Any changes to this results in a shortage of the vitamin. Fortunately, you have a 7 year supply in your body and it can be replaced easily if you are short.

However crohns inflammation is skip lesions and affects certain areas of the gut and can "skip" that part of the bowel or affect it depending on the nature of the individual.

Pataman

My wife has it for the last 8 years. She isnt toobad, easy for me to say i know, but there are times when she is in pain. She is on Pentasa for life and only steroids when she is bad. Your girlfriend will have to learn which foods effect her. Within 10 mins of my wife having chocolate she is on the bog with diarrohea. Generally she has to avoid dairy products, low fat milk only. I presume everyone is different and it will be trial and error to see which foods she can eat.
Avoid stress, she will need lots of sleep, fatigue is a big problem. I suggest multivitamins as because the food doesnt remain in the gut very long, sometimes not all the nutrients are absorbed. You can get "soft iron" tablets which are easy to absorb and dont cause problems.
Dont worry too much about it, she has it, deal with it, and it is NOT the problem it used to be. Most people wouldnt know she has this problem.
Best of luck

DrIndy

True - treatment modalities have improved a lot recently and there is constant new research for new therapies as it is a relatively common condition and a lot of money to be made by a pharmaceutical company if they get it right......

SirIrish

Thanks very much guys Startin' to feel better already

shayser

I've had ulcerative colitis for 11 years.

I've found that by sticking to the Specific Carbohydrate Diet I can contol the condition very well. It's a tough regime (initally) but as I say it works brilliantly for me.

Do a search in Google for Specific Carbohydrate Diet, or you could start here:

- http://www.breakingtheviciouscycle.info/
- http://www.scdiet.com/
- http://www.scdiet.org/
- http://www.scdiet.net/

ash5

i was diagnosed with Croh'ns Colitis in March this year. Have had two flareups since and was put on steroids, problem being when i come off steroids i get sick. the doc tried Azathioprine but i get bad side effects from it. what happens now tho? do i keep coming on and off steroids forever? does anyone know? i am really only learning as i go so many questions>>!!

atDendOFdDAY

Hello,

Just a few comments on the above...
First off, I've had ulcerative colitis (UC), pancolitis for maybe 5 years now. Got it at 17/18 years of age.
Had terrible bother at first, steroid dependent, couldn't get below 10mgs a day. Flared up and down for a year or two. Met surgeons. It was horrific really.

Anyway I read up a lot on the disease and drugs and the whole lot and became as educated about the disease as possible, as good as the doctors that treat it... well some of the doctors that treat it anyway...

[edit] Sorry - too much info there. You can't give medical advice on this forum - simu [/edit]

In my experience once you get a grip on your disease you can eat a lot, drink a fair bit and live well. Also you have the peace of mind knowing that if you've tried everything and educated yourself to the max. whatever happens, you've done your best.

Also I've no doubt stress and strain of life, nervousness, abuse of alcohol/drugs, worry, lack of rest and a whole bunch of other things will effect your ability to live with this disease. So tackle them too...

And on a final positive note, after 2 years of relative hell, I haven't had to do much reading up/educating in the last few years due to being well. When you're well you almost forget you have the disease. This will happen you too at some stage if you give it a chance. Chin up

(altho I have just had a mini-flare I think I'm getting out of it without even going on steroids or infliximab!)

legoman

shayser wrote:

I've had ulcerative colitis for 11 years.

I've found that by sticking to the Specific Carbohydrate Diet I can contol the condition very well. It's a tough regime (initally) but as I say it works brilliantly for me.

Do a search in Google for Specific Carbohydrate Diet, or you could start here:

- http://www.breakingtheviciouscycle.info/
- http://www.scdiet.com/
- http://www.scdiet.org/
- http://www.scdiet.net/

Hi Shayser,

I got UC about a year ago. I'm gonna start the diet soon. I just ordered the book and have begun to do a bit of research on the diet. It does sound a bit too good to be true from reading the testimonials on the various websites.

Can you answer a few questions for me. Do you know where the best place is to get products for the diet such as the nut flour breads or muffins. Also how do you feel day to day? How has the diet effected your medication?

I have loads more to ask but i'll start with that.

Thanks

lego

Chucky

Hey,

I've been diagnosed with UC for just under a year now. I was on the steroids for a few weeks - They'll disrupt your normal daily activities. While on them there were times when I was so hyped that I just couldn't sleep and so stayed awake for two days straight. It's a good idea to try to get off the steroids as soon as possible. That can only be done when your girlfriend's colon is sufficiently healed and that can be achieved through diet.


I find that I do not need the Special Carbodhydrate Diet at all. I do not drink alcohol nor do I smoke. What I do is exercise and eat plenty of vegetables, protein, and fruit. This keeps the colon in good shape. Your girlfriend will probably figure out which foods upset her gastrointestinal tract over the next few months.


For me, peas, dairy products, and spicy foods are upsetting. To supplement the loss of intake of calcium I take calcium supplements as directed by my gastroenterologist. There is calcium in vegetables too though.

Cuidaté, take care.


*Edit* - Sorry I forgot to post this link:

http://www.healingwell.com/community/

Scroll down to the Ulcerative Collitis forum. I found it very helpful for the first month or so.