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Meds to help with urgency

meds to help with urgency

I've recently had another resection. In 2000 I had a few feet of my terminal ileum removed and a few months ago a 7 inch resection of my colon. Since my first surgery urgency has always been an issue and now even more so after this recent resection. I've had the disease for 16 years and found no connection with foods causing diarhhea. There seems to be no rhyme or reason to it. I'm sure there are lot of factors, but I'm going to see my doctor on Monday to discuss possible medication. I've researched a few possible medication but am wondering if anyone had suggestions. If I could solve this urgency situation I would be the happiest guy in the world. Even when i am doing well it's always on my mind. Been hanging out a lot at home lately. I'll challenge myself and go out and do stuff but there is always a certain amount of anxiety to it and it would be nice to actually listen to people instead of thinking when the convesation will end so I can exit stage right and hit the bathroom. I am giving myself another year and if things don't improve I have got to the point that have a colostomy is a very viable option. Thanks for your input!

-phil
 

Jennifer

Adminstrator
Staff member
Location
SLO
It's possible that you may not be able to fix this problem. You may be prone to diarrhea because of the amount of intestines already removed. I haven't had as much of my ileum removed as you have but I spoke to my GI about medication options for frequency and he suggested Lomotil. I don't know if there is a dosage as I've never seen one on the bottle but I take it as needed and it does work for me compared to products out there like Imodium which can be hit or miss.

Good luck! And welcome to the forum! :D
 
quick responses! thanks. I do have some psyllium husks in pill form, I make a shake for breakfast every morning, perhaps buying bulk psyllium may work better and just add it to that.. yummm. I suppose whatever I do it will be lots of trial and error. seems to be the case for all medication for Crohn's.

Do Lomotil and Immodium work differently? I assumed they were the same thing.
 
I use questran lite - I found that my d's increased after I had my gall bladder out. Questran lite is a bile salt binder, after having your gall bladder out bile salt goes into the intestines which increases the d's so questran stops this from happening. I have read on this forum that others have used questran with good results. I used to take immodium before having my gall bladder out and this worked at the time.
 

DustyKat

Super Moderator
Hey Phil,

Roo has tried a number of different prescription and OTC meds for her diarrhoea with varying results. Questran Lite definitely worked for her but she found it too unpalatable so opted not to take it, she was young (14) at the time but won't revisit it. Imodium and Lomotil caused pain and cramping as do the commercial brands of Psyllium, I guess it may be the additives in them. Natural Psyllium works really for her, until she started using it she had not eaten out since her surgery, so 4 years. She usually adds it to her morning coffee and if she is out she has foods that have a sauce or gravy and adds it to that. She is still particular about what she eats whilst out but she has managed it to the point that she can eat salads out without needing to use Psyllium or the toilet.

As you say, it is a lot of trial and error and if she is too heavy handed it can constipate her but I think after using it for 6 months she has it pretty down pat.

HTH, :)
Dusty
 
well I got on Cholestyramine (Questran) and right away it was almost a miracle, I had formed dare I say almost normal BM's for the first 4 days but than the last 2 days have seen the D come back but not the volcanic burning type at least. I ordered som psylium husks and see how that goes. The Questran seems palatable for me, I've been mixing it with the new v-8 fruit/vege drinks and they are kinda thick to begin with so I can't really taste the gritty-ness. But atleast now I know that that the D can be fought, will just need to find the right combos.
 
I'll just mention the only thing that worked for me before I had my ostomy. I had tried Questran, but I could not imagine taking it everyday. There is also a pill version that is similar to Questran (different med, but same idea - and BIG pills). Anyway they did not help me.

The one drug that worked for me is low dose codeine. Did not give me any narcotic effects, but gave me my life back.
 
my doctor did recommend tincture of opium which I assume would be similiar to codeine. I am going to try out the Questran for a bit and see how that goes. I did take the Welchol which I think is the horse pill many years ago and if I get tired of the powder maybe I will give that a run.
 
I had 2nd resection last October with no real relief from D. My doc then put me on humira - still no relief. In research on this forum I found a compound medicine called Low Dose Naltrexone. My doc had read reports but never used it on patients. Being a bit pushy I did further research and persisted and got a script,. It involved much research but was well worth it. Within day of starting I went from 10 - 15 bowel movements to 3 - 4. So exciting and lifes much easier when you don't have to always be looking for the closest loo. This drug isn't the magic cure as my mouth ulcers are really bad so there must still be inflammation - but life is great when you don't have a pain in the belly constantly. It's a bit unconventional but appears to have little side affects ( disturbed sleep for the first week).
 
Yes, the tincture of opium is similar in action to codeine. But I think the tincture is even "older school" than codeine. I remember my mom taking that when I was a kid in the 70's.
Codeine may be more convenient because it's in pill form as opposed to the liquid tincture. One note with the low dose codiene, I was taking it about 4-5 times a day for good control.
 

ameslouise

Moderator
There are a lot of people on the forum that use tri-cyclic antidepressants like Amitriptyline, which are also anti-spasmodics. They help a lot of people with urgency and frequency issues.

I have used Imipramine in the past and it was great for controlling urgency. Thinking of going back on it....
 

e13 boy

Banned
Hi Phil

When i was looking for the help i needed i read about questran,loperamide,lomotil,codeine,tincture of opium,octreotide.Only my opinion but i think it depends on how much you have lost,which sections & most crucial whether you still have any active CD.
I know a patient who has had very similar ops to me;for her most drugs were not doing the job so she takes octreotide injections.
 
Well certainly lots of options out there. Thanks for the suggestions. Hopefully I find a good combo soon. There are so many drugs and diets out there for Crohn's. guess when you are dealing with the guts there are a lot of variables. But better than just having just one drug to turn to though.
 
Hi Phil,

What works well for me is Codine Phosphate. It does a good job or reducing the urgency without stopping things up completly. Immodium (Loperamide) works very well as a chemical cork. Unfortunatly, when the cork comes out of the bottle you are just back to where you started.


Mark
 
My husband has tried everything I've seen listed here (except for Octreotide) and has also extensively used antibiotics to control bacterial overgrowths. He has about 7 ft of small bowel remaining and no colon. Cipro worked wonders for a while, as did tincture of opium, but right now - nothing seems to be working. We are doing lots of research and his Mayo doctors are going to get back to us about Octreotide. He is willing to try ANYTHING - quality of life is very low right now - he's in the bathroom 20+ times per day.
 
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