Living with crohn's

Hello I'm 45yrs.old and was diagnosed 5 hrs.ago with crohn's disease and it has turned my life upside down. Pentasa didnot work now I'm on asacol and prednisone and that is not working. Ihad my entire colon removed and everything ieat goes through my system within 10 min. Can anyone advice me is there hope. This disease is so debilitating. I want my life back Please advice it will be appreciated. This week alone I had to be rushed to the hospital 4 time the last one was today. My mind body soul is so drained out. My spirits are low and this has cause depression. I used to weigh 150lbs. Now I'm almost 100 lbs which is not healthy. Hopefully I can receive some feed back . I'm trying to keep my spirits high.
Sincererly nena

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Living with crohn's
by: Lydia D.

This is what I am on 6 years down the road with 2-3 litres diarrhoea per day and still struggling:

Medication, vitamins and minerals (morning-noon-evening)
- Tincture of Opium (1 g/ml) 6 drops (1-0-1)
- Entocort 3 mg (1-0-0)
- Omeprazol 0-20 mg (1-0-0) or as required
- Zinc (15 mg Zn++ (0-1-0))
- Vitamin C 50 mg and iron 7 mg fizzy tablet (1-0-0)
- Calcium and vitamin D3 1000 mg/400 IE (0-1-0))
- Selenium 20 μg fizzy tablet (1-0-1)
- Magnesium 200 mg sublingual tablet (1-0-1)
- Multivitamin sublingual tablet (1-0-1)
- Vitamin B12 complex for pregnant mums (300% daily dose) (1-0-1)
- 5 mg Folsäure injection (upper thigh) once a week
- Fat-soluble vitamins Vitamin A 100.000 IE, D3 10.000 IE, E 100 IE, K 10 mg) monthly injection in groundnut oil
- 6 mg vitamin B12 infusion every couple of months
- ORS daily
- Salt tablets (NaCl) 250 mg as required

You need a lot higher dose of Entocort and Omeprazole. You probably won't be able to meet your daily vitamin requirements with the above regime because you have nearer to 4-6 litres output per day.

I wear a 1 litre bag (operation bag). The normal bags have only 0,5 l capacity and because the the stool ferments like mad because of the undigested food, this means that masses of gas is produced and you probably empty every hour or so.

Depression is also caused by disrupted sleep. I did starve myself in the evenings to try and get at least 3 hours uninterrupted sleep, but I generally had to get up and cook myself a large meal in the middle of the night.

Good luck with the doctors.

Lydia D.
Living with crohn's
by: Anonymous

1 of 3

A transit time of 10 minutes indicates that you have intestinal failure (aka short bowel syndrome aka malabsorption syndrome). It is also called high output ileostomy and is frequently seen with Crohn's patients: http://www.nature.com/nrgastro/journal/v2/n12/full/ncpgasthep0343.html

Ideally, you should be in hospital on a drip with daily vitamins and iron infusions every second day in your current state. It is critical that you produce over a litre of urine a day. Otherwise, you risk kidney failure as well.

I had an ileal resection in Feb. 2005 (ileostomy in 1993) and suffered for 8 months before I got a diagnosis. The state-of-the-art diagnostic tool is a 3-day stool collection with the measurement of fat content. Over 10g per day is too much. You will have over 100g fat in the stool - steatorrhoea. Shiny, greasy stool indicates steatorrhoea. The testing for beta-carotine in the blood gives an indication of the amount of fat and fat-soluble vitamins (A, D, E, K) being absorbed: http://www.healthtestingcenters.com/beta-carotene-blood-test.aspx

I recommend that you collect and weigh at home. I know how awful this is, but it is the only way to convince your doctors to treat you seriously. There are only 2-5 intestinal failure patients per million, so most doctors never see a case in their lives.

Print this article out and take it to your doctor:
A Clinician's Guide to Short Bowel Syndrome by Parrish (my Adobe is acting up so I can't check that this is the right link):

http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/September2005.pdf

There are 3 phases (approximate figures below):

Secretory: 4-6 litres output per day (1-2 months)
Adaptation: 3-4 litres output per day (1-5 years)
Stabilisation: 1-3 litres output per day (rest of life).

To slow down the diarrhoea you need to take an opiate, such as Imodium drops (aka Loperamide). deoderised Tincture of Opium will probably be better. Other medications: Entocort (aka Budesonide), a proton pump inhibitor (e.g. Omeprazole), Creon (pancreas enzymes), etc. (see references) www.drugs.com

continued... Lydia D.
Living with crohn's
by: Lydia D.

2 of 2



Your depression is caused by a lack of nutrients and calories. http://ods.od.nih.gov/factsheets/list-VitaminsMinerals/

And you are in an involuntary anorexic state - Crohn's anorexia: http://www.something-fishy.org/dangers/vitamins.php

I suggest that you print the above out and put them in a folder and find a doctor who will help you.

I am now six years down the road and have to supplement with all of the above. I take over 7 times the recommended b-complex (for pregnant mums) and must eat around 2500-3000 calories a day in 5-6 sittings better would be to continuously eat. I still struggle with dehydration (2-3 litres diarrhoea per day). I never go out without salt tablets, glucose, something to eat and a big bottle of water.

In your current state, you need to aim for over 5000 calories a day, but no sugary or fatty foods. I know how difficult that is. You need to eat continually during the day. You need to take Ensure or another astronaut drink. Check with your doctor and health insurer - here in Europe I get them prescribed.

You can base your diet on the BRAT (banana, rice, apple mousse and toast) diet. Tomato juice with salt and Krombacher isotonic beer may also be good for you. However, to reduce their acidity and the bubbles in the beer you need to add a pinch of baking soda. Carrots, broccoli, cauliflower, potatoes, pasta, chicken, fish are all easier to digest. Mashing and pureeing food or chewing extremely well will aid digestion. All green fibrous veges and red meat are difficult to digest.

Litres of water should be avoided because it draws more water out of the body. You need glucose and salt and nutrients. Sodas (Cola and co.) are not good - table sugar pulls the water out of the body and they are too acidic. Bubbles in drinks stimulate the stomach to produce more acid.

Because you have gastric dumping of huge quantities of food and the stomach is producing so much acid because of starvation, the contents will not be neutralised by the pancreatic enzymes and thus undigested food rushes through and out of the gut.

Lydia D.







Crohns research advocate...
by: Peter Bray

Sorry, you'll have to become a lay Crohns-researching advocate just like the rest of us...I've been at it for 23 years, because that's how long my adult daughter has had it...it's a global plague and there are some bright people fighting it, but the average gastroenterologist has no clue(s)...watch out for the escalation of useless profit-making Western Meds...ASACOL, MP6, Remicade...prednisone steroids may or may not cause steroid psychosis...join support groups and find out what works and does NOT work for others...I have written 9 columns on the issue for a local newspaper, I can send you what I know for free as a pdf--

PetrBray@AOL.com

Peter Bray,
Benicia, CA USA
Living with the 'what is'
by: Kit Campbell

My heart goes out to you. To suffer anything, means we don't accept the 'what is'. And to accept the 'what is', is sometimes so hard, when we don't want it, or can't control it. I had 'Crohns' for 40 years of my life. Bowel removals, re-sections, medication. With my last attack in 2000, bleeding from the bowel yet again, the last piece of the puzzle slotted into place within my mind and in only 7 days, the bleeding stopped.
All I can share with you, is just 'accept' this situation in this moment, whatever it is. Accept that you are on medication. Accept that you have had a major operation and now have a different way of living.
Once you have totally accepted all this and more, you will be free to act. Act in the way of doing what you can do to feel good and right now, maybe the only place you can do that is within your mind. How you CHOOSE to think is up to you.
Your mind is not who you are, it is a cup that sits beside you with everything in it that you have learnt, experienced, been TOLD. I was TOLD that I had Crohn's Disease and I owned that disease for those 40 years. I do NOT have Crohn's Disease now, not for the past 13 years, nor will I have it ever again. I am currently writing a book "IBS - Irritable Brain Syndrome", which shows how I changed my life completely around and it was so simple! My body is the barometer of my mind. How I 'think', is how I believe, is how I feel. Change the way you look at things and these 'things' will change. Currently you are suffering from all the negative things that are 'happening' to you right now. Stay in that 'right now'. See if there is anything that you can be content with, or grateful for, even if it is other people in your life that you love and who love you. Even if it is a cat or dog that loves to be by your side. Even if it is a favourite pair of slippers that make your feet feel so good. Even if it is a yummy cup of cocoa or tea that you are drinking in that moment, right now. Even if it is the sun that is gently touching your face, or the flicker of a candle in the dark. Look for those things. They are there. You just have to stop your mind from the negative and start finding the positive. This is a choice you HAVE to make yourself. This is your vehicle that is being affected, not you. You are perfect, whole and complete. You will survive this and more, no matter what :) Take all the 'no's' out of your life, your vocabulary, your thinking. This doesn't mean you just give up, on the contrary, this means you take back the power for your own essential being. Make the choice. Just stay in the moment. This is the only way to deal with where you are currently at. And each moment will pass. And another will arise. And how you 'think' about each moment will in turn create the next. Be the observer of your mind, be who you truly are. Love yourself, be gentle with yourself.
My intention is to share what worked for me, which is really to share love.

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