- Joined
- Jul 18, 2009
- Messages
- 25
Hi all - I hope you are all surviving.
I thought I would share something recent in my treatment. My diagnosis has always been symptoms (including biopsies, bloods and scoping) "consistent" with Crohn's, although never definitive. Following some reading and suggestions from various sources, I investigated amitriptyline, aka "endep".
This drug is an antidepressant in high (50mg+) doses. In lower doses it slows involuntary smooth muscle action by somehow interfering with the signals from the brain to the body.
My GE agreed to try me on a moderately low dose - 10mg at first, then 20mg.
At first it did nothing other than make me insanely sleepy. I usually sleep 5-7 hours, and suddenly I was sleeping 12-14 hours, quick a shock to the system. It also made me feel sleepy even when awake, although I later realised this was in part because your eyes focus due to the same type of involuntary muscle movement that the drug affects, so when I was getting a bit tired my eyes would defocus!
Anyway, here's the interesting part - after about 6 weeks, my symptoms seemed to improve. Not entirely - but day by day, things seemed a lot more "regular" than I was used to. There were one or two setbacks, but gradually (and despite me trying to keep my hopes down as much as possible) things have improved to a point where I think it's fair to say that the drugs are working well. I haven't had severe D for about 2-3 months now, which is the longest streak since I've been sick at all.
Even better, foods which would have been lethal to me 6 months ago are suddenly back on the menu. Previously any meal high in fat would have been instantly problematic, as would foods high in cellulose (things like onion, celery, tomato skins/seeds etc), and nuts and seeds generally. Now... I wouldn't say no problem, but MUCH less of an issue. I ate my first piece of fried chicken in about 2 years a few weeks ago, and my god did it taste good.
It's like before I was a boat with no keel being blown around wildly depending on the wind - this drug seems to be like a keel - I still go a bit in whatever direction the wind (food, stress etc) is blowing, but much more slowly and predictably.
The only negatives so far are that I am still extremely sleepy, and a bit of acid reflux which seems to be caused by the drug somehow. Overall I feel like I have temporarily lost 10-20 IQ points... but at the moment that's a very good trade for the ability to go out or come to work without living in terror of needing a bathroom at short notice. I should add that I am also on Salofalk oral tablets, 2 in the morning and 2 at night.
Anyway, I wanted to share this because it may help someone here and I wish I'd read about it sooner. Maybe something to talk to your doctor about.
I thought I would share something recent in my treatment. My diagnosis has always been symptoms (including biopsies, bloods and scoping) "consistent" with Crohn's, although never definitive. Following some reading and suggestions from various sources, I investigated amitriptyline, aka "endep".
This drug is an antidepressant in high (50mg+) doses. In lower doses it slows involuntary smooth muscle action by somehow interfering with the signals from the brain to the body.
My GE agreed to try me on a moderately low dose - 10mg at first, then 20mg.
At first it did nothing other than make me insanely sleepy. I usually sleep 5-7 hours, and suddenly I was sleeping 12-14 hours, quick a shock to the system. It also made me feel sleepy even when awake, although I later realised this was in part because your eyes focus due to the same type of involuntary muscle movement that the drug affects, so when I was getting a bit tired my eyes would defocus!
Anyway, here's the interesting part - after about 6 weeks, my symptoms seemed to improve. Not entirely - but day by day, things seemed a lot more "regular" than I was used to. There were one or two setbacks, but gradually (and despite me trying to keep my hopes down as much as possible) things have improved to a point where I think it's fair to say that the drugs are working well. I haven't had severe D for about 2-3 months now, which is the longest streak since I've been sick at all.
Even better, foods which would have been lethal to me 6 months ago are suddenly back on the menu. Previously any meal high in fat would have been instantly problematic, as would foods high in cellulose (things like onion, celery, tomato skins/seeds etc), and nuts and seeds generally. Now... I wouldn't say no problem, but MUCH less of an issue. I ate my first piece of fried chicken in about 2 years a few weeks ago, and my god did it taste good.
It's like before I was a boat with no keel being blown around wildly depending on the wind - this drug seems to be like a keel - I still go a bit in whatever direction the wind (food, stress etc) is blowing, but much more slowly and predictably.
The only negatives so far are that I am still extremely sleepy, and a bit of acid reflux which seems to be caused by the drug somehow. Overall I feel like I have temporarily lost 10-20 IQ points... but at the moment that's a very good trade for the ability to go out or come to work without living in terror of needing a bathroom at short notice. I should add that I am also on Salofalk oral tablets, 2 in the morning and 2 at night.
Anyway, I wanted to share this because it may help someone here and I wish I'd read about it sooner. Maybe something to talk to your doctor about.
