What a difference a small change made for me.

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carolm
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What a difference a small change made for me.

Post by carolm »

HI all,
I started taking Amitriptyline 10mg last October to help manage aggressive motility issues I was experiencing. My doctor's intent was to interfere with what she called a 'dumping syndrome' where I would have one day every week where my gut would basically empty itself in a relatively short amount of time-- like 8 bms in a 2 hour period. It was inconvenient, made me nauseated and fatigued--sometimes there was no choice but to take Imodium and an anti-spasmodic and come home, lay down and wait for the meds to work.

The Amitriptyline worked well and my motility became more consistent. However, in times of unusual stress, I was still having the same aggressive motility as a reaction to the stress. For example, my husband had a surgery for atrial fib in December and as you can imagine the day of his surgery and then 3 days later when he had to have an unexpected procedure for a pacemaker, my gut went bonkers. So-- when I'm in my routine with normal everyday stress I'm regular but out of my routine-- stressed, not sleeping well, etc. BOOM! the aggressive gut was back and I'd have an intestinal day from hell.

I saw my GI doc on Thursday March 14th and told her I really needed her help brainstorming a way to interfere with this. I'm doing acupuncture, relaxation and breathing exercises but I can not head this off. She told me that "in times of stress" I should try adding another 5 mg (1/2 tab) of Amitriptyline at night. This was particularly timely because on March 20 my husband was scheduled to have an ablation at KU Med Center in Kansas City. Now I could put it to the test.

The result? Worked like a charm!! :banana2: I started the extra 1/2 tab 2 nights before we left for KC. I had no problems the day we traveled and he had pre-op appts. The day of the surgery, no problems (3 bms but they were spread hours apart). The day after the surgery and his dismissal later that day--no issues. I am stunned. I ate small amounts of my allergen free foods and I did well through the whole thing.

I don't know how many people have these similar motility issues but I just wanted others to know--keep asking questions and keep fine tuning. I now have confidence that I'll be able to deal with major life stressors as they come up. It felt good to get back to being able to concentrate on what my husband needed rather than trying to plan what I was going to do when my gut goes bonkers. For the first time in a long time I was not worried about getting sick away from home.

Keep digging-- battle back.

Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
tlras
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Post by tlras »

That's great Carol! I'm on amitriptyline as well. Your post is a reminder that I will never get off this med. It definitely helps with the gut. When I try to get off of it, it's bad news on the ole tummy. It's my lifesaver in times of stress. Glad to hear it works for you! Hope your husband is doing well.

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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Post by Leah »

How is your husband doing Carol? It's great that you found an easy solution to your problem. Thanks for sharing :)

Leah
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what a difference a small...

Post by wmonique2 »

Carol,

Nice to hear some good news now and then :lol: What's your dose of elavil before you upped it? It works great on motility and nausea. Was a life saver for me too.

I took 10 mg for a while and it helped a lot---except for the sleepiness I couldn't shake in the mornings, the constant hunger (that really bothered me) and the weight gain. So I stopped taking it and I am taking allegra now which helps with nausea and mast cells issue.

I am in a flare right now and if i keep getting these flares, I may have to go back to it.

Terri does good with it and she takes 25mg...

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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Post by tlras »

@Monique....and now doctor wants to wean me down from 25 mg!! I asked her if she was trying to kill me as she is currently weaning me off my daily dose of Librium (only take 5mg) and I can already tell the difference. Weaning off meds after 20 years is no fun. I should be able to get off this Librium but I dare she mention getting me off Amitriptyline again. Not ready for that. It's weird how my cardiologist wanted to up my dose of it (he realizes the gut connection) but primary doctor wants to get me off. So irritating!

Are you feeling any better?

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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tex
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Post by tex »

Terri,

If your PCP presses for a dose reduction, and you don't feel that you can handle it, just tell her that your cardiologist recommended a higher dose, (not a decrease). (Patients can play some of the same games that their doctors play). :lol:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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what a difference a small...

Post by wmonique2 »

Terri,

Yeah, you don't have to accept ALL their recommendations :lol: Play the game!

I am better but not functioning at full speed. Most of the time I feel like I am operating at 25%, 50% or 75% of my capacity. Right now I am at 50%. When is it gonna get better? I have no idea. I don't know if you've been following the thread on LDN but I am seriously considering giving it a try...taking care of my body has become my fulltime job :-(


Love,

Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
tlras
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Post by tlras »

Well I'm all up for playing games! Once I tell her that going off this Librium is tough enough, I think she'll give me a break.

Monique...haven't been following that thread but will look it over. Don't even know what that is. But I hope it works for you. I'm probably going at about 85% some days due to the weaning down from my med. I get to 100% and then doc wants to play around with my meds. Yesterday was a lucky 100% but since I didn't take a pill last night, I'm feeling a little headache-ish. It's getting better though. Feel better girl, so you can hit that dance floor again!

I'm assuming, Tex, that you are over your flare. Stay away from the syrup and the jalapenos! People make fun of me, calling me a Yankee, as I cannot deal with anything even mildly hot....can't handle much spice at all....makes my tongue and mouth burn like crazy. I don't fit the description of a true Texan at all. In my mind, I'm a California girl.....or Florida.

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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Post by tex »

Hi Terri,

Yes, my guts have settled down again. I may have to do a few tests this week, though, to make sure that I'm interpreting this correctly. I have a lot of jalapena sausage in the freezer that would feel insulted if I didn't eat it. :lol:

Actually, I don't believe that it's mandatory to enjoy spicy food in order to be a Texan, you just have to appreciate the ambiance of the state. :grin:

This morning, I'm trying to appreciate the late-season freeze that we had last night, that may have destroyed the wheat crop around here (which was just beginning to pollinate), but the corn seems to be taking it in stride, so maybe we lucked out because it was a dry freeze (mid to upper 20s), devoid of any frost. I'm guessing that the freeze didn't make it all the way to Houston.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by tlras »

Good luck, Tex!

Well I say good riddance to the nasty wheat crop...lol!

We are just north of Houston in Tomball but we got lucky and didn't get a freeze. Think Conroe might have though. Wow..mid-20's...that's too cold for late March if you ask me. I hope this is our last cold spell. I hibernated yesterday...the wind and the cold was just too much.

By the way, your statement last week about Dallas being the North Pole was hilarious. I agree!

Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
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Post by wmonique2 »

Terri,
as I cannot deal with anything even mildly hot....can't handle much spice at all....makes my tongue and mouth burn like crazy. I don't fit the description of a true Texan at all. In my mind, I'm a California girl.....or Florida.

I cannot handle that stuff either. I don't know how our main man does it :lol: If you think it's burning when you eat it, it's even worse coming out :lol:


Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
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carolm
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Post by carolm »

HI all,
re: Amitriptyline--- I was only taking 10 mg. so my prn dose is just another 1/2 tab-- so 15 m.g. I felt a little groggy the first day but it only lasts until about noon.

This is a small change but it will make a huge difference in my life. It's about the first time in almost 2 years that I feel like I have some control or at least I have a few more weapons, toward getting some control back. I called my GI doc yesterday and left a message telling her of my positive results. Today she called me back and said that she has called in a new prescription that will allow me to increase the meds as much as 2 weeks out of the month and I should call her if I need more. I was like -- two weeks-- woohooo!!
Of course I know not to overuse it so I don't acclimate to it. Now I'm fantasizing about trips I might be able to take. :smile:
It's about time for some good news right?

My husband is doing well. Now we wait to see if the scar tissue created in the ablation can keep the 'bad' current from interfering with his heart rhythm. But he is recovering well, thanks for asking.

Take care--
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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Post by brandy »

Hi Carol,

Glad both you and your husband are doing better!
keep asking questions and keep fine tuning


I agree 100%.
Keep digging-- battle back.
I was looking for Tex's thumbs up but couldn't find it so you get a bunny! Brandy



:cutebunny:
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carolm
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Post by carolm »

Thanks Brandy, I like the bunny.

Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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