From: fragtastic on
I have Crohns. I had a resection about 2.5 years ago. Some large,
small intestine removed. Not enough for short bowel syndrome but they
did remove my ileocecal valve.

I didn't go down the questran route for the diarrhea and I still take
pentasa and aezathioprine to keep the Crohn's at bay.

I don't think/feel that I have any active Crohn's. What I do have
though this far on is terrible diarrhea on and off. Sometimes I can
have 10 bowel movements in a day; often 5 or so. Every so often,
perhaps once a month it all goes a bit mental and I take some immodium
to calm things down.

Now my questions

1) Do I run a higher risk of bowel cancer from having chronic D

2) I have no other symptoms and apart from the D I feel fine; although
the D can get nausiating some times. Should I worry or do others
without some terminal ileum/ileocecal valve have the same thing.

3) How do other people find imodium to calm things. I take it very
very seldom. Would it be bad to take say 1 tablet a day. I'm a bit
over weight. Will taking imodium make me put on weight; for that
matter does the D stop me putting on more weight. I'm not obese or
anything but 5' 9" and 13 stone 8 pounds. Basically I could do with
losing a few pounds :-)

4) I'm in the UK and I have private health cover. I have found my
insurance company a bit snippy about checkups. What are your
experiences.

I'll stop there. I could ask all day.

PS, hope everyone out there is doing ok. Sucky condition Crohn's. I
could do without ant more tubes up or down any orifices to be
perfectly honest so I aint that keen on seeing the consultant when the
D is my only real problem.
From: Wayne Marsh on
fragtastic wrote on 1/17/08 4:49 PM:

> 1) Do I run a higher risk of bowel cancer from having chronic D

I think not. From what I've read, it's the chronic inflammation that's
associated with high risks of bowel cancer. If you have the inflammation
under control, then you probably shouldn't worry unduly.

> 2) I have no other symptoms and apart from the D I feel fine; although
> the D can get nausiating some times. Should I worry or do others
> without some terminal ileum/ileocecal valve have the same thing.

My diarrhea increased greatly after my ileocecal valve was removed. I think
it's a common experience.

> 3) How do other people find imodium to calm things. I take it very
> very seldom. Would it be bad to take say 1 tablet a day.

I've taken Imodium in the past. For me it was almost useless -- I had to
take 6 to 8 tabs a day for it to have any effect. One tab a day is a very
conservative dose. If it helps you, you should take it and be grateful. For
me, the diarrhea came under control -- I'd say 95% control -- only after I
began taking tincture of opium, a.k.a. laudanum for fans of Victorian
thrillers.

Wayne Marsh Minneapolis, Minnesota, USA
waynegmarsh(a)mac.com

From: Simon Scott on
On Thu, 17 Jan 2008 14:49:33 -0800, fragtastic wrote:

> I have Crohns. I had a resection about 2.5 years ago. Some large, small
> intestine removed. Not enough for short bowel syndrome but they did
> remove my ileocecal valve.
>
> I didn't go down the questran route for the diarrhea and I still take

Why no Questran? it would probably help, it has helped me immensely.


From: Vanny on
I support the Laudanum. It is one of the things keeping me going with
Crohn's and SBS due to loss of colon and about 0.6 metres of ileum.

Try Psyllium as well (Metamucil, Mucofalk, etc.) - start on a quarter dose
with each meal and titrate up and drink with lots of water to check whether
or not your intestines can deal with it.

Vanny


"Wayne Marsh" <waynegmarsh(a)mac.com> schrieb im Newsbeitrag
news:C3B57998.6412E%waynegmarsh(a)mac.com...
> fragtastic wrote on 1/17/08 4:49 PM:
>
>> 1) Do I run a higher risk of bowel cancer from having chronic D
>
> I think not. From what I've read, it's the chronic inflammation that's
> associated with high risks of bowel cancer. If you have the inflammation
> under control, then you probably shouldn't worry unduly.
>
>> 2) I have no other symptoms and apart from the D I feel fine; although
>> the D can get nausiating some times. Should I worry or do others
>> without some terminal ileum/ileocecal valve have the same thing.
>
> My diarrhea increased greatly after my ileocecal valve was removed. I
> think
> it's a common experience.
>
>> 3) How do other people find imodium to calm things. I take it very
>> very seldom. Would it be bad to take say 1 tablet a day.
>
> I've taken Imodium in the past. For me it was almost useless -- I had to
> take 6 to 8 tabs a day for it to have any effect. One tab a day is a very
> conservative dose. If it helps you, you should take it and be grateful.
> For
> me, the diarrhea came under control -- I'd say 95% control -- only after
> I
> began taking tincture of opium, a.k.a. laudanum for fans of Victorian
> thrillers.
>
> Wayne Marsh Minneapolis, Minnesota, USA
> waynegmarsh(a)mac.com
>


From: Vanny on
If you have had the problems you describe ever since the operation then you
have intestinal failure (aka short bowel syndrome). I prefer the term
intestinal failure. Most doctors won't treat you for short bowel syndrome
because one of the many definitions of short bowel syndrome is that you have
less than a metre of small intestine left over. As far as I am aware, I only
have about half a metre of ileum missing, but all of my colon and rectum
with an ileostomy. I have had medical personnel say to me that I can't have
short bowel syndrome because I still have metres (perhaps even 3-4 metres)
of intestine left. However, I have intestinal failure and guess what - the
symptoms are exactly the same as short bowel syndrome.

There appears to be two schools - one that uses the term short bowel
syndrome and one that uses the term intestinal failure. Do an internet
search.

Here is the definitive medical review on short bowel syndrome (aka
intestinal failure) with a better definition.
http://www.healthsystem.virginia.edu/internet/digestive-health/nutritionarticles/September2005.pdf
Here is a good diagram of intestinal nutrient absorption
http://www.cmaj.ca/content/vol166/issue10/images/large/21ff1.jpeg from
http://www.cmaj.ca/cgi/content/full/166/10/1297

I also refer you to this presentation on nutrition in IBD patients that I
posted a couple of days ago
http://209.85.129.104:80/search?q=cache:Gv7PBbHGaEEJ:www.health.bcu.ac.uk/webmodules/gm604S/Presentations%2520and%2520Handouts/maintaining%2520Nutrition%2520in%2520IBD.ppt+jeejeebhoy+short+bowel+syndrome&hl=en&ct=clnk&cd=9&gl=uk

Crohn's patients can have intestinal failure without intestinal resection.
Other patients may have a resection of only a few centimetres or radiation
treatment or trauma and end up with intestinal failure. Find a doctor that
knows about intestinal failure.

I agree with Simon that Questran (aka Cholestyramine) should really help
you. Look up the drug
at www.drugs.com and www.rxlist.com However, you should have your doctor
keep an eye on your fat-soluble vitamins (A, D, E, K) because Questran
treatment in addition to intestinal failure results in malabsorption of
these vitamins. If you are feeling drained and run down then also have your
zinc levels checked in addition to vitamin B12, folic acid, beta-carotene
(measure of fat uptake) and iron in addition to basic biochemistry. I think
that I am suffering from a shortage of selenium at the moment and I am going
to ask my doctor to check up on that.

I sugges that you read up on diet and base your diet on the BRAT (banana,
rice, apple mousse, toast/black tea) diet and expand it from there. It is
possible to manage the diarrhoea to a certain extent by diet - avoid all
sugar, including honey, syrups, sodas, sweets, coffee, ginger, aniseed,
aloe, and avoid all fatty foods, such as chocolate, fried food, fast food,
etc. There are also tricks, such as starting off the day with
porridge/oatmeal; diluting fruit juices; if you are going to sin (high fat,
high sugar), then sin in the morning; eat low fat; eat plenty of low residue
vegetables such as carrots, parsnip, turnip, pumpkin, cauliflower and
broccoli (flowers only); supplement with an astronaut drink (Fresubin,
Fortisip, Ensure, etc.) and so forth. See also:
http://www.google.co.uk/search?hl=en&q=effective+diet+for+chronic+diarrhoea&meta=

If you still have your colon, it should be possible to achieve a high
quality of life with intestinal failure because the colon is able to adapt
(if given half the chance) and it will absorb the nutrients and so forth,
with a bit of pharmaceutical help. If you do get the Opium Tincture then
start it on a Friday evening or Saturday morning to allow you to get used to
it. It may cause slight hallucinations at first and I did have the feeling
that I was free floating for a couple of days and was fascinated by some
cobblestones that seemed to be swirling around below my feet when I went
into town. I have absolutely no such effects now - the only problem is that
I am very chemically sensitive and if I take more than 16-20 drops a day I
end up racing to the loo to empty my bladder every half an hour. I was told
that I could take up to 15 drops 3 times a day, but 16 drops is generally my
maximum daily dose and I would never manage 16 drops all in one go. I am
small 1.62 m at 56 kg.

A PPI inhibitor (Pantoprazole, Omeprazole, etc., for acid suppression) might
also help you - see the above review.

If the above does not work, then perhaps you should have yourself checked
for lactose intolerance, gluten intolerance, fructose intolerance and
anything else your doctor can think of.

There are plenty of recipes for sufferers of chronic diarrhoea available on
the internet.

Vanny


"fragtastic" <richardabrams(a)consilium-uk.com> schrieb im Newsbeitrag
news:6c12b733-351f-4ff4-93bb-b2bd0c85c859(a)i3g2000hsf.googlegroups.com...
>I have Crohns. I had a resection about 2.5 years ago. Some large,
> small intestine removed. Not enough for short bowel syndrome but they
> did remove my ileocecal valve.
>
> I didn't go down the questran route for the diarrhea and I still take
> pentasa and aezathioprine to keep the Crohn's at bay.
>
> I don't think/feel that I have any active Crohn's. What I do have
> though this far on is terrible diarrhea on and off. Sometimes I can
> have 10 bowel movements in a day; often 5 or so. Every so often,
> perhaps once a month it all goes a bit mental and I take some immodium
> to calm things down.
>
> Now my questions
>
> 1) Do I run a higher risk of bowel cancer from having chronic D
>
> 2) I have no other symptoms and apart from the D I feel fine; although
> the D can get nausiating some times. Should I worry or do others
> without some terminal ileum/ileocecal valve have the same thing.
>
> 3) How do other people find imodium to calm things. I take it very
> very seldom. Would it be bad to take say 1 tablet a day. I'm a bit
> over weight. Will taking imodium make me put on weight; for that
> matter does the D stop me putting on more weight. I'm not obese or
> anything but 5' 9" and 13 stone 8 pounds. Basically I could do with
> losing a few pounds :-)
>
> 4) I'm in the UK and I have private health cover. I have found my
> insurance company a bit snippy about checkups. What are your
> experiences.
>
> I'll stop there. I could ask all day.
>
> PS, hope everyone out there is doing ok. Sucky condition Crohn's. I
> could do without ant more tubes up or down any orifices to be
> perfectly honest so I aint that keen on seeing the consultant when the
> D is my only real problem.