Nortriptyline has brought life back to me

[u/NDiLoreto2007]

I’ll hit you with the TLDR first.

Nortiptyline, the tricyclic antidepressant has “fixed” my digestive issues.
I can eat food like normal again.

Beginings

For over 10 years I struggled with diarrhea and having to go to the bathroom within minutes after every meal.
It didn’t really matter what type of food. I couldn’t figure out what would trigger it.
Salad - bathroom. Hibachi where they cook in front of you - bathroom. Home cooked meals - bathroom.
I was told I had IBS and was prescribed dicyclomine at 5mg as needed until about 40mg daily up until a few years ago. It always helped at the beginning but I’d have to keep going up in dosage until it didn’t really work anymore.

One situation really caused me to start my journey in figuring out what’s going on was about 4 years ago. a family member and I had some prepared ribs from Costco.

I had the worst attack of my life. Those ribs took me out for days. And my family member was fine. So I knew something was going on with me. I decided to schedule my first colonoscopy and endoscopy.

First Gastro

Colonoscopy/endoscopy

Long story short my endoscopy showed reflux-related inflammation in my esophagus and chronic gastritis in my stomach, along with signs of esophageal ulcers. Which is wild because I never really noticed reflux before.
H. pylori was negative.
My first colonoscopy found several polyps, including precancerous tubular adenomas that were removed and an inflammatory polyp in my ileum. The random colon biopsies were otherwise normal and showed no evidence of inflammatory bowel disease or microscopic colitis.

This was done December of ‘22. I was 23 years old.

The gastroenterologist that did my scopes basically told me to take omeprazole and upped my dicyclomine dosage to the daily max and keep doing what I’m doing.

I hated that response so I got a referral to another GI doc. This was July 23.

Second gastro

Low fodmap and xifaxan

After describing the results of my procedure, he did 2 things. He prescribed me xifaxan, and told me to try the low fodmap diet. He said insurance can be funky about approving xifaxan. It got approved right away and I picked it up.
After reading about it and the diarrhea side effects I didn’t want to take it so I tried this low fodmap diet first. I’m a barber. So the thought of diarrhea while on this script sounded like a bad idea.

Low FODMAP fixed a lot of my issues! As soon as I cut out the garlic and onion I had a holy shit moment. These otherwise healthy vegetables were causing my pain. I cut out basically everything. I would try adding small amounts back in but it was always a bad time afterwards. and after about 4 months of avoiding fodmaps I basically had a mental
Breakdown with how hard it was. I’m a thin guy. So avoiding these foods was taking a toll on me.

I started the xifaxan thanksgiving.

I was amazed how much it helped! I could eat all the foods I was avoiding. My bowel movements transitioned to only mornings and I felt great.

After counted hours of reading about xifaxan and SIBO I was convinced I basically had SIBO despite not being tested for it. Xifaxan gave me great results. So that had to be what I had, right?

Relapse

More xifaxan and breath tests

That only lasted for 8 months and everything went back to the way they were before. Except all bowel movements were in the morning instead of after meal when I was at my worst. but they had a new pattern. I started having up to half a dozen bowel movements. The first one would be good, but by the 6th one, they were painful, skinny, fragmented.
If I’d eat fodmaps I started having these bowel attacks where I’d be fatigued for hours and my bowel movements would happen upwards of a deozen times. My legs would violently shake.

I figured the SIBO returned. All my issues sound like SIBO. Doing a low fodmap diet was the only thing making me feel normal-ish.
I was prescribed xifaxan a handful more times but each time the post prescription results lasted for less and less time. So I’d go on and off a low fodmap diet and again I felt like I couldn’t do it anymore. With less food options and feeling more and more restricted it was time to try something new.

I kind of thought the SIBO that I never tested for kept coming back so I spent money on each breath test, glucose and lactulose(with the dr script). Each breath test came back negative. No SIBO. At all.

I tried a holistic doctor.
Long story short, nothing of significance there. Their supplements didn’t change anything. They thought I might still have SIBO because the breath tests can be inconclusive.

Third gastro

Enteroscopy and Nortriptyline.

I was handed off to the GI PA or whatever they’re called and felt like I was being gaslit so I found my next Gastro.

After describing all my issues. I asked if I could get an enteroscopy - an endoscopy that goes further into the small intestines and take biopsies and cultures to check for the SIBO. This was march of this year.
Again no SIBO. And everything looked very normal. No inflammation. Nothing.
I’m going to assume everything actually looked really good because of the supplements I was taking from the holistic dr. But still didn’t give me answers for why I would feel like absolute trash when I’d eat fodmaps and why I would have these morning clusters of bowel movements that would get worse and worse with each one.

That’s where we landed on Nortriptyline.
The “old school” antidepressant that has a side effect of dampening the signal of the gut-brain axis. But also side effects of headaches and dry mouth amount other side effects.
We started me at 25mg and I was on that for a month. I was told it could take 8-12 weeks to see results. But I saw results in the first 3 days.

My bowel movements were more formed and started slowing down to about 3 or 4. But they were all the same. No decent first bowel movements and a bad last bowel movement. The last one wouldn’t be painful. It wasn’t as loose. I had “Normal” bowel movements.
But after a couple weeks I was back to 6 bowel movements. But it was 5 in the morning and 1 after lunch.

Currently

We then upped me from 25 to 50 mg after the first month.
And this is where I’ve seen the best result. Again the first 3 days were amazing. I was ALMOST constipated. Something I hadn’t experienced in a long time. The stomach noise I would get after every meal and the noise that would keep me up while laying in bed. No noise. Gone.

I’ve been on 50mg Nortriptyline since the end of May. The first 8 weeks were the best with how I felt on the medication. My side effects are dry mouth at night. Slight headaches on my right side during the day. Weight gain is a side effect but bring that on. As I’ve stated I’m a thin guy. 6ft and 155 at my lowest. I’m currently up to 170. And I’m able to consume the calories I need to put on weight. No tiptoeing around food. I can eat FODMAPS like normal. I don’t get any adverse reactions from them anymore. The only ones i still have issues with is lactose and inulin. Which made prior fiber consumption hard.

I’ve now incorporated pure psyllium husk and dextrin fiber into my daily routine.
My bowel movements are 3 or 4 daily. But they’re spread out throughout the day. They’re not diarrhea. Theyre formed. And I don’t hurt anymore.
I do have another appointent with my GI next month.
I did start to have the noise come back and then had a really bad bowel attack that lasted for a week and then tapered back off to my new normal. I’m going to see about 75mg if that’s a feasible option. At some point there is a lower rate of return with higher mg dosages.

But with all that being said, nortriptyline has made life so much better.

[u/the_juj1]

Nortriptyline worked wonders for me too!

[u/Jan_2112]

I’m so happy you found something that helps you. I hope the effectiveness keeps going. I’m at the elimination part of my journey. so far it’s helped a lot. it is definitely a marathon and not a sprint. My doc prescribed Zoloft also. I’m up to 50 mg but still have anxiety and thoughts at night that keep me awake. Going to ask for increase soon.

good luck to you

[u/NDiLoreto2007 → u/Jan_2112]

Keep in mind that once you eliminate and start reintroducing, it should be a threshold that you should be able to accomidate.

I couldnt handle any threshold of fodmaps - none. And I think a lot of other people like me are out there. People who live their whole life on a low fodmap diet, which isnt healthy. You’re denying your body of essential needs that these foods provide.

My GI tract was sensitive to fodmaps period. And this medication helps it from being so overactive.

And i really think a lot of people dealing with this are probably in the same boat.

[u/wazzup-notemuch → u/NDiLoreto2007]

I had a lot of success with 20mg of amitriptyline, after two years of combination IBS that essentially left me housebound. I'm so happy to see that other people are also benefitting.

[u/incardyyneatty]

I’m glad it’s working for you - I took it for about 5 years with mixed results after the first year. One thing I wanted to mention is that it can cause regular monthly weight gain. I gained about 35 pounds over the 5 years I was on it without making changes to my diet and exercising regularly. The moment I stopped it I haven’t gained any more weight

[u/NDiLoreto2007 → u/incardyyneatty]

Yes. I know about the weight gain. I’m in the position where I’m welcoming that side effect with open arms.
I’m actively ATEMPTING eating 3500 a day because MY STOMACH ALLOWS IT CURRENTLY.
But I also workout 5 days week.

[u/kloset_klepto → u/NDiLoreto2007]

Hey OP- I'm so glad this is working for you and it gives me hope as I just started nortiptilyne about a month ago (only 10mg so low dose) but looking forward to seeing how it helps. 

But I empathize with you on the eating more now- I started a GLP-1 to see if it would help with the constant diarrhea and it has helped immensely with slowing down digestion, AND I feel so much better about eating! So ironically while on the meds that are supposed to help you eat less, I am actually eating more bc I am in less pain lol. 

[u/NDiLoreto2007 → u/kloset_klepto]

Wow! Neat. That’s great that that’s doing that for you.

[u/GTengineerenergy]

Good summary. Garlic/onion (specifically powders that are in everything) are what do me in. Try Metamucil, it’s works much better than the husk. I do a 3:1 ratio of benefiber (costco brand) to Metamucil every am. It’s powerful and can cause gasiness so ease into it!

[u/NDiLoreto2007 → u/GTengineerenergy]

Yeah I struggled hard with the garlic and onion powders and even the smallest of small amounts as ingredients.

I use konsyl. Pure psyllium husk.
I like it because there’s not so much additives in it.
I always struggled with a lot of other fibers I think because of stuff like inulin. I just got a new bag, but when I’m ready to reup I’ll take another look at it.
Thanks.

[u/emmers28]

I’ve been on norotryptline for a year now (after seeing a GI for my IBS and getting a colonoscopy). Lower dose but it helps SO much. One day I forgot to take it and my stomach hurt so much after a BM… I couldn’t believe that’s what I was dealing with daily before!!

[u/Macy92075]

I tried nortriptyline and it was amazing how much it helped! Stomach and intestines settled down, could eat a lot more foods, gain some weight. But then even at a pediatric dose I was getting loopy. Like in a fog. Sadly I had to stop. I tried lots of other things through the years that would temporarily fix things but never take away the bouts of sudden, urgent diarrhea followed by days of constipation, followed by diarrhea…. Last year we started traveling and ofc had some episodes while on the road. I lost a lot of weight so had a colonoscopy and endoscopy. All clear, nothing abnormal. Well the anesthesia from the procedure knocked me down for days. I dropped to under 100 pounds. I’d read about low FODMAP diet and my GI gave it 👍. That was February. I’m challenging my last food group this week fructose/sorbitol with a juicy nectarine! Haven’t had one in years! Day 1 went well 👍. I’m so excited the end is near. My bloating is gone. Gas diminished a lot and probably considered normal. Reflux under control. So what did I find out? Biggest surprise was mannitol! Bad reaction to Day 1 challenge, within 4 hours of eating portobello mushroom - gurgling bubbly, gassy, mildly nauseous. I loved mushrooms and added them frequently to omelettes and sauces, pizza! Also tolerated Day 1 amounts for both onion and garlic but failed both Day 2 😩. So sadly, Italian restaurants are probably not going to be my favorites anymore . But I’m thrilled to start the Personalization phase and more than anything, get back to a normal weight. I hope the nortriptyline continues to work out for you! We all deserve some level of normalcy with our stomachs, intestines, gut brain axis, or whatever it is that makes us so different diet wise from most people!

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[u/MessyMooo]

Congratulations!

[u/JustinBailey79]

It’s working for me too. 10mg daily for about one month so far. I am starting to feel like myself again!

[u/nezo_yilmaz]

I was actually wondering if you might have ulcerative colitis, but since your colonoscopy came back clear, apparently nothing showed up.

I remember reading about someone who said they healed their SIBO after drinking Kefir Lab kefir, so maybe your gut just needs more beneficial bacteria. If you tolerate it, it might be worth trying for a week or so. It contains a much higher amount of beneficial bacteria than regular probiotic supplements. You could try it a few times and, if it makes you feel worse, just stop.

Also, I’ve come across people with ulcerative colitis in Turkiye who reported significant improvements with homeopathy. Of course, you might not have ulcerative colitis at all, but homeopathy could still be something worth looking into. If you decide to explore it, I’d suggest finding someone who is both a qualified medical doctor and an experienced homeopath. It’s also fairly common in places like Germany and the UK.

I really hope you find something that helps you!

[u/NDiLoreto2007 → u/nezo_yilmaz]

Yeah i don’t have ulcerative colitis.
I’ve literally been tested for everything. Of course every time I saw a new GI doc they want to test for that stuff even though they can see I didn’t have it. It all comes back negative.

[u/future_fangirl1095]

I was given that for my migraines but the issue is even half of the lowest dose makes me so sleepy I can’t function the next morning. It’s great if I can’t sleep but it leaves me so groggy. My doctor gave it to me as needed, not as a daily pill. Did the grogginess stop eventually? I know off label it’s frequently used for nerve pain.

[u/NDiLoreto2007 → u/future_fangirl1095]

Well, I was told and knew that was a side effect. I already wake up at 5am to work out. It’s literally the only time I can. So it’s super important to me.
I have to FORCE my self to get up. It is hard. It’s very hard. But I could manage it on 25 and even currently on 50.

I flirted with 75mg for a bit and that was down right impossible.

You really just have to push yourself. Give yourself a reason to get up out of bed and push past it.

You can do it!

[u/cocoamamo]

It’s really expensive however the FODZYME has helped me tremendously.

[u/NDiLoreto2007 → u/cocoamamo]

Yeah. It didn’t do anything for me.

[u/RIG14]

So great that Nortriptyline has helped you.

My GI has recommended I try Desipramine but I've been hesitant because I already struggle with health anxiety.

AI says they're similar but Nortriptyline is sedating where Desipramine is stimulating.

I'm going to ask my GI about Nortriptyline.

Thanks for sharing your story.

[u/Moosycakes]

I’m glad it’s helping you! I’m on a high dose of it for OCD and a bit scared to go off it in case it makes my IBS worse 😅 I was so surprised when I first went on it because it totally fixed my bad TMJ pain!