How do you manage daily life with IBS-D?

So very sorry for what you have and are going through.
I was diagnosed with IBS-D for 30 +years and also ruined vacations and embarrassed myself so many times.
Last year a third gastro doc diagnosed me as having
Exocrine pancreatic insufficiency, “EPI “
They don’t really know if it gradually turned into this or if I was misdiagnosed for many years.
Some insurance companies don’t want to pay for the test and my doc had to argue with insurance. I am now treated for EPI with pancreatic enzymes and it has changed my entire life!
Please make sure to research EPI. I hope you find some answers.
It is a whole new way of living for me and I am beyond thankful!
Please feel free to ask any questions 🫶🏼

Hi! Thank you for replying. I will research EPI. I’ve never heard of it. I called my gastroenterologist the other day because the dicyclomine she put me on was giving me a lot of side effects. I also suffer from internal tremors which started up this year. Well, she’s actually a NP. Hardly see the dr. Now she wants me to try IBGard!!!! Omg! Now we are going back to something I tried yrs ago. I saw a nutritionist before the virus. Her suggestions were trial and error on foods. Omg again! That consultation cost out of pocket $280. So I’m back to square one. I will look into EPI. Thank you!!

You are welcome…it’s a journey for sure. Hope you get some answers soon. I felt that I had good medical care but EPI isn’t widely known even now. I was on lomotil and dycyclomine and many other meds for IBSD for many years…and by I just had to live with the imperfect solutions for a long time. Then I retired, the opioid crisis came and my new primary care Dr accused me of being addicted to lomotil. It was a real slap in the face. Strangely enough a fab allergy Dr convinced me to see a new Gastro practice. My FIRST appt there I saw a nurse-practitioner there that suspected EPI. She was wonderful and as a result my entire life has changed for the better!!!
NEVER give up in your search for health and wellness. I’m So much healthier now that the nutrition I’m consuming is actually being digested properly!!! No longer do I ago places searching for the closest bathroom!!!
I’m 67 and can now run 5 days a week and lift weights at the gym and most of all ENJOY my life!
Keep searching!!!

It definitely is a behavior modification that’s necessary to eating habits. We just find it most difficult, if downright can’t, give up so many foods we loved that are no longer “good” for us.

So good to hear you were finally diagnosed. I’ve had digestive issues since I was 19, I’m 67 now. I was always told it was ibs and gerd. I had years of very significant and sometimes serious symptoms like stools that were black, then orange then yellow then white and very mucousy and sometimes foul. They NEVER went beyond IBS. Now I have a lipase of 414, chronic gastritis from chronic h pylori infection, 17 precancerous polys removed., and treated twice for SIBO. I’ve never drank or smoked and have been on a very healthful but restricted diet my whole life as a result of trying to eat around triggers. I’m still very sick and loosing weight again. I’m so afraid of again being dismissed by them saying well we do know you have gerd and IBS ( though I have NEVER been actually tested for either. So frustrating.

I certainly sympathize. Similar to my experience…and I didn’t go into ALL the details but these issues really mess up your lifestyle just the same as me!
Well…if you get tested for EPI at least you will know whether it can be ruled out or confirmed. I wasn’t diagnosed until last year, and yes chronic ulcers, gastritis, just about every digestive upset you can imagine. Including the free fall weight loss. The fainting has stopped and it used to occur once a week!?. I try to consume 2000 calories a day now. The enzyme replacement therapy is really life changing. I’m up to 104 lbs now. And beyond thankful to finally KNOW what was causing all these problems.
Please don’t give up!!!
I’m here if you want to talk and am cheering you on in your journey. Don’t accept drs that will NOT listen or believe you!

Grannydee, thank you so much for your reply and encouragement! I will ask them to rule out EPI. Did you have high lipase and did they say what causes it?
I’m glad your weight is up and that your no longer fainting. I get so fatigued and dizzy but no fainting. So glad you are doing well now
Warmly
Christine

Christine, I honestly don’t know about the lipase numbers…it was other tests that revealed the EPI. And thank you,
I truly feel that I have been given a whole new life. I’m so very thankful.
All the best!

Is EPI diagnosed by a fecal test or a blood test or both? So glad you found out you had this so you could treat it. Are you also on B12 injections?

Mine was diagnosed through a fecal test and other tests also.
I take enzyme replacement therapy (Zenpep) to digest my food and yes I do receive B-12 shits every month in addition to vitamin and mineral supplements. I also supplement with Orgain protein (and no I do not receive any remuneration for recommending it). I have chosen to avoid sugar as to avoid the additional medication to digest simple carbs. I am NOT diabetic, it just requires a different therapy to digest sugar/simple carbs. I am able to digest complex carbohydrates and I am very thankful to be able to finally have a normal life without fear of embarrassment due to daily diarrhea, fainting, and looking like a refugee!. It’s been a whole new world for me after so many years of misdiagnosis and misery. I now have good muscle development am now up to 102 lbs. I’m looking forward to actually being able to wear summer clothes w/o fear of embarrassment 🤗