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From: Kevin on 28 Aug 2008 22:19
Hello,

My wife has had Crohn's disease for 30 years. She had resection surgery
about 20 years ago. She has malabsorption problems and periodic Crohn's
flares resulting in severe diarrhea. For the past 10 years she has taken
tincture of opium to control the diarrhea, and 6MP for the Crohn's. She is
now changing doctors, and she is having problems finding a doctor who will
prescribe tincture of opium. The gastrointerologist she recently saw said
that he did not believe in prescribing tincture of opium, and thinks that
she should be able to control her diarrhea entirely by diet. Her new family
medicine doctor refused to perscribe tincture of opium. Is this reasonable?

How common is prescribing tincture of opium for Crohn's disease patients?

Any advice would be greatly appreciated.

thanks, Kevin


From: Vanny on 29 Aug 2008 06:38
Firstly, I live in Germany.

I am female, aged 48, 53 kg (and falling) have Crohn's with a
panproctocolectomy resulting in an ileostomy and with multiple ileal
resections which lead to short bowel syndrome (SBS aka intestinal failure)
after the last ileal resection in mid-Feb. 2005. I have GERD (reflux
disease) and a secondary lactose intolerance due to the intestinal failure.

I was prescribed Tincture of Opium (aka Laudanum) in October 2006 after my
GP refused to prescribe it because I reacted adversely against the
Loperamide and "they were essentially the same as they were both opiates",
my gastroenterologist refused to take my 'diarrhoea' seriously and my
internist insisted on me trying Loperamide (aka Imodium) again even though I
said that I didn't tolerate it. I was taking Loperamide dropwise (on a lower
dose than an infant) and had repeated ileal closure/paralysis. I only
managed to get optimal treatment by going to a convalescent clinic here in
Germany, where they try and get people back on their feet and fit enough to
restart work after a serious illness or operation. They give one a good
going over and they have so many patients coming through with the same or
similar history that obtaining the correct treatment is just a given thing.

To my knowledge, there are at least a couple other patients with Crohn's at
this newsgroup that are prescribed Tincture of Opium and no ulcerative
colitis patients. Side-effects and drug interactions can be found at
www.drugs.com and www.rxlist.com I do not feel that I am addicted to the
Tincture of Opium, especially as it taste like tarmac and I have decreased
the daily dose from around 21 drops to 7 drops.

You don't say how frequently your wife has diarrhoea or how much, so I have
had to make a few assumptions.

I can confirm that intestinal failure (aka short bowel syndrome) cannot be
controlled by diet alone. In my opinion, your wife has to convince the
doctors she needs Tincture of Opium and everything else has not worked. She
needs to keep a symptoms diary for a few weeks prior to seeing her doctor.
Diarrhoea in a healthy person is loosely defined in the literature as over
200 ml fluid faeces per day (see article on SBS below). A high variability
in output might indicate that Loperamide or Lomotil capsules/tablets would
not be effective. I can obtain Loperamide drops here in Germany, and your
wife might be able to obtain them where you are. You do state that your wife
has periodic Crohn's flares with diarrhoea, so these medications might well
do the same job.

Doctors really only respond to numbers and thus your wife needs to go in
speaking the same speak. She will need to show variability of output by
measuring daily output, frequency, any pain, any blood, etc. This is the
table I use, which is in German
http://www.dieblase.de/service/Miktionsprotokoll-ohne-text.pdf She should
also use the pain scale of 0-10 (where 10 is extreme pain) to describe any
pain she might have. She should use the CDAI to track her Crohn's activity
http://www.ibdjohn.com/cdai/ Variability in BM composition should be
recorded using the Bristol Stool Scale
http://www.familydoctor.co.uk/htdocs/BOWELS/BOWELS_specimen.html

I suggest that your wife looks for a doctor who has lots of experience in
intestinal failure (aka short bowel syndrome). If the doctors recognise that
she has intestinal failure, which is causing her ongoing malabsorption
issues, then I suspect that it will be easier to obtain Tincture of Opium.
Contrary to most medical opinions, you don't need to have any bowel removed
to have intestinal failure. Most doctors, even IBD doctors, do not have a
clue about intestinal failure or short bowel syndrome because it affects
only some 2-10 patients per million and many of these are paediatric
patients. However, having read the following reference (the best that I have
found on the subject) and using the author's definition of short bowel
syndrome then all patients with severe or fulminant Crohn's can be said to
have intestinal failure. Like any organ failure, intestinal failure can be
reversable.

The definitive reference on short bowel syndrome (aka intestinal failure)
http://www.healthsystem.virginia.edu/internet/digestive-health/nutritionarticles/September2005.pdf
Centres in the USA with the relevant expertise
http://www.healthsystem.virginia.edu/internet/digestive-health/nutritionarticles/parrishchart.pdf

With my short bowel syndrome I have over 3 litres of ileostomal output per
day - for an ileostomist over 600 ml fluid output is defined as diarrhoea.
With my medication (see below) and a strict diet the output is decreased to
between 1.5 and 2 litres per day, which is still very high and I do not feel
at all well, but I feel less disabled than I do with over 3 litres output
per day.

My diet consists of potatoes, pasta, bread, rice, porridge of fine oats, no
fresh fruit and vegetables - steamed peaches and apples are allowed, no
dried fruit, no red meat - but, now and then some liver pate or blood
sausage for the iron, no milk, only emmental and parmesan cheeses (low
lactose), no nuts, no pips, no skins, no coffee, no black tea, no cocoa, no
chocolate, no alcohol, no sweets, no sodas, no fast food, no pure sugar
sources, no spices including black pepper, no artificial additives and
preservatives, etc. Low fat - no deep fried food or discard batter, only
good quality olive oil for drizzling on bread, small amount of sunflower oil
for cooking. Low acid - no citrus, no tomatoes, no vinegar, etc. Low-fibre
vegetables, such as very well-cooked broccoli and cauliflower flowers only -
not stalks, carrots, parsnip, turnip, pumpkin, aubergine without skin and
pips, courgette without pips, etc. For example, for breakfast this morning I
had a cup of 1:1 diluted pineapple juice with two baked potatoes, a drizzle
of oil, and then baked with emmental cheese for a few minutes, steamed
peaches with Fortisip (similar to Ensure) poured over and a salty lassi with
no spices except for salt and some fresh herbs
http://en.wikipedia.org/wiki/Mango_lassi. The day before yesterday I had
porridge and steamed peaches for breakfast.

Have a look at some low-fibre recipes:
http://www.google.de/search?hl=de&q=low+fibre+recipes&meta=lr%3Dlang_en

Here are the low-fibre GI 1 and GI 2 diets.
http://www.seattlecca.org/introduction-to-gastrointestinal-diets.cfm

I find I have to adjust the medication according to my Crohn's and have had
to lower the inital doses because of recurring subileus (ileal closure) and
strinctures, but here it is:

Tincture of Opium 5-7 drops an hour before breakfast (1-0-0, down from 6-8
drops per meal, 1-1-1) - maximally 45 drops per day.
Omeprazole 20 mg (1-0-0, proton pump inhibitor for the reflux)
Budenofalk 3 mg (1-0-0, down from 1-1-1 due to side-effects and blockages)
Mucofalk (Psyllium) 5 g prior to a meal (0-0-0, stopped due to stenoses and
recurrent blockages initially 1-1-1) For normal Crohn's'd folk stool bulkers
should only be taken straight after the meal, but with the intestinal
failure I had to take it prior to a meal to act as a plug, otherwise it just
pushed the food out within 3/4 hour
Vitamin C powder with my steamed fruit
6-MP 50 mg (0-1-0)
Salt tablets 1-4 x 250 mg (1-1-1 - varies according to how much salt I put
in the meal)
Zinc (0-1-0)
Potassium and magnesium tablet (0-0-0-1) - magnesium causes diarrhoea and
thus I take it just prior to going to bed.
1-2 Fortisip per day
Monthly i.m. vitamin A, D, E, K, injections
Fortnightly folic acid injections
Quaterly i.m. vitamin B12 depot injections
I was on 0.5-1.0 litre ORS per day, but I stopped it because I was
prescribed the salt tablets. Nowadays, I always have some ORS on hand to
take on an as needed basis should the diarrhoea get out of hand:
http://en.wikipedia.org/wiki/Oral_rehydration_therapy I had food poisoning
the week before last and felt even more wretched that I generally do and, at
a guess, the diarrhoea increased to well over 3 litres per day.

Assuming that your wife still has her colon then it might be that her
diarrhoea is partly due to the decreased absorption of bile salts at the
terminal ileum, which means that bile salts enter the colon and wreak havoc
and cause diarrhoea. A medication prescribed against this is Questran
http://www.drugs.com/search.php?searchterm=Questran&is_main_search=1 .
Questran together with a low-fat diet might very well help your wife. As a
bonus, it also lowers cholesterol. Fat malabsorption is normally determined
by measuring daily faecal output and then assessing the amount of fat
present. Over 12 g fat per litre per day is pathological. In 2005 my faecal
output was 180 g fat per day. There can also be a pancreatic-based fat
malabsorption, which can be helped by prescribing the patient Creon -
pancreatic enzymes
http://www.drugs.com/search.php?searchterm=Creon&is_main_search=1 I took
Creon 20 for several months, but it lead to severe intestinal
closure/subileus - a very rare side-effect in non cystic fibrosis patients.

If she keeps her patient diary and uses that above approach then I think
that she will be able to put forward a good case for being prescribed TofO.
If it has worked for her for so long then it seems strange for the doctors
to want take it away from her. However, there is a lot of worry about
opiates and dependency. Perhaps, the doctors you have spoken to know too
many doctors who have been in trouble for prescribing too many opiate
painkillers, such as Oxycontin, in the past. However, Loperamide and Lomotil
are opiates and can be obtained over the counter in a lot of countries.
There was a chap who came here and said that he had taken some 120
Loperamide tablets to get his opiate high when he ran out of Oxycontin. I
don't know if he is still alive.

Refer to the first diagram here for the various sites of absorption in the
intestines http://www.cmaj.ca/cgi/content/full/166/10/1297 There are plenty
more references on the internet regarding malapsorption/intestinal failure.

Vanny


"Kevin" <jk.erwin(a)comcast.net> schrieb im Newsbeitrag
news:n9Gdncurm4oCwSrVnZ2dnUVZ_jCdnZ2d(a)comcast.com...
> Hello,
>
> My wife has had Crohn's disease for 30 years. She had resection surgery
> about 20 years ago. She has malabsorption problems and periodic Crohn's
> flares resulting in severe diarrhea. For the past 10 years she has taken
> tincture of opium to control the diarrhea, and 6MP for the Crohn's. She
> is now changing doctors, and she is having problems finding a doctor who
> will prescribe tincture of opium. The gastrointerologist she recently saw
> said that he did not believe in prescribing tincture of opium, and thinks
> that she should be able to control her diarrhea entirely by diet. Her new
> family medicine doctor refused to perscribe tincture of opium. Is this
> reasonable?
>
> How common is prescribing tincture of opium for Crohn's disease patients?
>
> Any advice would be greatly appreciated.
>
> thanks, Kevin
>


From: Wayne Marsh on 29 Aug 2008 11:34
In article <n9Gdncurm4oCwSrVnZ2dnUVZ_jCdnZ2d(a)comcast.com>,
"Kevin" <jk.erwin(a)comcast.net> wrote:

> How common is prescribing tincture of opium for Crohn's disease patients?

Although I can't cite any numbers, I have a sense that the use of DTO
(deodorized tincture of opium) is increasing here in Minnesota. I don't
get "what the heck is that" as much as I used to when I mention to other
IBD pts or medical personnel that I take it. My local Walgreens store
always has it in stock, or can get it in a day or two.

DTO simply works for me, where nothing else, post-resection, ever did.
It did, and does, make my life better. I think it's short-sighted of
your wife's doc to refuse the prescription, particularly for a pt who
has used it safely and successfully for years.

Vanny's idea may work: carefully document life with DTO and without it,
making the case for its need. Or it may not work, if the doc is simply
afraid of his name showing up on the list of docs who prescribe
controlled substances.

I don't know what your situation is, but if I voluntarily changed docs
to one who wouldn't continue my DTO prescription, I would voluntarily
UN-change back to the old doc.
From: paul hinman on 1 Sep 2008 14:06
My GI says that any physician who will not prescribe narcotics is guilty
of malpractice. It may be reasonable not to start a patient on a
specific medication but if the patient has been taking a drug for years
with good success then it would be unreasonable to stop it. Good luck
in finding a a compatible set of doctors.

Kevin wrote:
> Hello,
>
> My wife has had Crohn's disease for 30 years. She had resection surgery
> about 20 years ago. She has malabsorption problems and periodic Crohn's
> flares resulting in severe diarrhea. For the past 10 years she has taken
> tincture of opium to control the diarrhea, and 6MP for the Crohn's. She is
> now changing doctors, and she is having problems finding a doctor who will
> prescribe tincture of opium. The gastrointerologist she recently saw said
> that he did not believe in prescribing tincture of opium, and thinks that
> she should be able to control her diarrhea entirely by diet. Her new family
> medicine doctor refused to perscribe tincture of opium. Is this reasonable?
>
> How common is prescribing tincture of opium for Crohn's disease patients?
>
> Any advice would be greatly appreciated.
>
> thanks, Kevin
>
>
 | 
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