How do you manage daily life with IBS-D?

Posted by pjss48 @pjss48, Dec 11, 2018

I have IBS with diarrhea. I'm taking med for it. Had several bowel movements already today. How do you get things done in house and go out on errands and going to Dr appointments? Driving me crazy!

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@lacy2

@rits Seems for every medical problem or issue fifty percent turn out "ok" and fifty per cent not... well, generalizing of course. With due respect to most doctors, I must say that some of my illnesses mental and physical were NOT helped by the doctors I had. I knew in my heart I had cancer of cervix as years ago even in my Readers Digest Health Book listed my symptoms which I had,and my GP said it was a hygiene problem - I will never, ever forget it, he said it 3 times. Retired now.
So left him and next dr i saw, female, new to City looked inside vagina: said, and this is the truth: I cant see anything!! By the time I saw specialist months and months later he checked me and I bled on table before going back to work: he said, need d and c as soon as possible... his receptionist booked me for 2 months time. Iwrote a letter, they never answered. I was a coward and should have gone back into the office and reminded them of the urgency or gone to emerge and sat there!! Needless to say by the time i had the d&c and diagnosis was a Stage 2. More sadness to the story but I must say that similar things happened to me with other doctors .. I know they make mistakes and I realize it can be difficult to diagnose sometimes, but time after time.....being passive in nature I just accepted what I often felt was wrong prognosis etc. but always was intimidated by doctors and hairdressers! (I also had D&C years later and woke up with appendix taken out, dr said, oh must have had problems down there... I hadn't). ONE YEAR LATER I found out he had punctured my uterus while doing D&C and tubal .... and I could go on. I would recommend we SPEAK UP when feel something is wrong but, at 77, was raised to keep my mouth closed and not make a fuss. See where it got me??? I too am on limited food intake and I so miss all those fruits and vegetables! Hopefully the women of today speak up more than we did, or were allowed to years ago.p.s. I know there are a lot of "good" drs out there: thank you!

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I too have had what I call misunderstandings by doctors. And for various reasons (excuses) I didn't push hard against them or go elsewhere when I knew they were wrong . I go through what happened back in 1995 in my head all the time. And i think - I should have done that or that- but I didn't. In any case I need to deal with what is going on now and try not to make my situation even worse.

I know what you mean about fruits and vegetables . I especially misd a big salad with lots of stuff in it. Yum
I'm seeing a specialist in June and am willing to do just about anything to be able to not be sick all the time and to be able to eat like a normal person. Even a stoma (bag.)
Just want whatever time I have left to have some quality and eating is a big part of a good life.

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@rits

I too have had what I call misunderstandings by doctors. And for various reasons (excuses) I didn't push hard against them or go elsewhere when I knew they were wrong . I go through what happened back in 1995 in my head all the time. And i think - I should have done that or that- but I didn't. In any case I need to deal with what is going on now and try not to make my situation even worse.

I know what you mean about fruits and vegetables . I especially misd a big salad with lots of stuff in it. Yum
I'm seeing a specialist in June and am willing to do just about anything to be able to not be sick all the time and to be able to eat like a normal person. Even a stoma (bag.)
Just want whatever time I have left to have some quality and eating is a big part of a good life.

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I remember many years ago a psychiatrist telling me: do something about it at the time, or forget about it. I did neither. Odd how those memories and those hurtful words etc. remain so vivid in our minds and still haunt us and I think of those people who have had very tragic things happen and how they can have ptsd.
I would love some fried onions, lol My daughters live close by and sometimes have extras but I cant eat the food as either too spicy or such...Daugher just came in, chat later, take care, J.

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@lacy2

....good advice just not sure can go through yet with other issues but maybe if I start off with the fecal calprotectin will get me started; waiting for cat scan results after a couple of odd attacks over a week ago and some other issues... yes costs are covered for me here in Ontario. Had glaucoma eye checkup today, covered too except one of the photos of inside of eyes $170.00.... she said all good so that was a relief. wishing you the best with your health issues and thanks for sharing the information, J.

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@lacy2
I'm just curious but does it take a long time to see doctors and get tests like I heard in Canada? Someone told me it took a year to get a CAT scan and a neurology appointment which seems unbelievably long to me.
Hope all is going well,
Jake

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@jakedduck1

@lacy2
I'm just curious but does it take a long time to see doctors and get tests like I heard in Canada? Someone told me it took a year to get a CAT scan and a neurology appointment which seems unbelievably long to me.
Hope all is going well,
Jake

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jakedduck1 and all: I am in Ontario. Am not sure what the wait times are for different municipalities. I am in mid-north and we have one hospital that does not have a neurologist. (nor rheumatologist and several other "ists") Closest about 1.5 to 2 hours away.
What I have found for myself is when family doctor (I no longer have one) or doctor through a Clinic (I use GoodDrs Clinic via telephone or walkin clinic wth computer screen): .. when they send a referral to neurologist or even local specialists like ent, then the specialist/neurologist or whatever "priorizes" the referral.

As an example, clinic dr. referred me to one of the 2 ent's here; one was about 6 month wait (even tho had seen before) and the other was a two year wait!!! Obviously my issues not as important, plus one of them also does cosmetic surgery. However, once you have been given an appoinment DATE, you can go on a waiting list in case they get a referral. I am sure very serious cases get priority... hope so. My beef is: hw can they prioratize when just have a referral and not all the details?

However, about 2 weeks ago had 3 sort of dizzy,double vision on the floor type attacks,at homem went to emerge - told to take tylenol - came home, phoned GoodDrs... they arranged CT Scan within a week. Our hospital has not been busy in that some surgeries cancelled and also people are worried to go there with Covic and our stay at home order, sick or not.

Sooo I would say "it depends" but with Covid it has lengthened the wait times for many medical ... plus I was told many doctors are not working the hours they used to eg try getting one on a Friday!! So I cant really answer your question except to say yes, you could possibly wait a year, but might not.

Maybe others from Canada reading this have input. J.

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@lacy2

jakedduck1 and all: I am in Ontario. Am not sure what the wait times are for different municipalities. I am in mid-north and we have one hospital that does not have a neurologist. (nor rheumatologist and several other "ists") Closest about 1.5 to 2 hours away.
What I have found for myself is when family doctor (I no longer have one) or doctor through a Clinic (I use GoodDrs Clinic via telephone or walkin clinic wth computer screen): .. when they send a referral to neurologist or even local specialists like ent, then the specialist/neurologist or whatever "priorizes" the referral.

As an example, clinic dr. referred me to one of the 2 ent's here; one was about 6 month wait (even tho had seen before) and the other was a two year wait!!! Obviously my issues not as important, plus one of them also does cosmetic surgery. However, once you have been given an appoinment DATE, you can go on a waiting list in case they get a referral. I am sure very serious cases get priority... hope so. My beef is: hw can they prioratize when just have a referral and not all the details?

However, about 2 weeks ago had 3 sort of dizzy,double vision on the floor type attacks,at homem went to emerge - told to take tylenol - came home, phoned GoodDrs... they arranged CT Scan within a week. Our hospital has not been busy in that some surgeries cancelled and also people are worried to go there with Covic and our stay at home order, sick or not.

Sooo I would say "it depends" but with Covid it has lengthened the wait times for many medical ... plus I was told many doctors are not working the hours they used to eg try getting one on a Friday!! So I cant really answer your question except to say yes, you could possibly wait a year, but might not.

Maybe others from Canada reading this have input. J.

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@lacy2 I agree with you. Referrals are prioritized and when your primary doctor sends out the referral usually it is accompanied by a brief medical history which is what the specialist uses to prioritize.

You’re right - even in Toronto specialists are in their offices/clinics only a certain number of days, which is why it takes so long to get an appointment. Covid has exacerbated the situation, of course. A lot of specialists have retired, or taken early retirement because of Covid, making matters worse.

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I have suffered with this condition for 13 years. I have tried numerous doctors and medications . Nothing stops the uncontrollable diarrhea, I never know when or where it will occur. Do I just take anti-diarrhea medication every day ? If I do that causes a different problem. Where do I go from here?

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@nanafaye

I have suffered with this condition for 13 years. I have tried numerous doctors and medications . Nothing stops the uncontrollable diarrhea, I never know when or where it will occur. Do I just take anti-diarrhea medication every day ? If I do that causes a different problem. Where do I go from here?

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Hi Nanafaye, welcome to the Digestive Health group. You may have noticed that I moved your message to this existing discussion about IBS-D. I did this so that you can connect with other members like @pjss48 @artist01 @rashida @jackiem95 @coralbells1 @sue225 @maryjax and many more.

You're asking great questions about possible long term side effects of taking anti-diarrhea medication every day and alternatives to stopping uncontrollable diarrhea.

While others join the conversation, I think you might also find this discussion started by @hopeful33250 and corresponding expert blog useful:
- Fodmap Eating Plan https://connect.mayoclinic.org/discussion/fodmap-eating-plan/
- What exactly is the FODMAP diet? Dr. Wang explains https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/what-exactly-is-the-fodmap-diet-dr-wang-explains/

Faye, have you tried any dietary adjustments to help control the diarrhea?

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Has anyone with IBS-D received any worthwhile help ? I suffer from this daily. My gastroenterologist started me on Prilosec, dicyclomine. Nothing works for me. Has anyone tried something and it worked ? I’ve canceled many appts, dinners with friends etc because of it. Any info to help would be greatly appreciated.. thank you.

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@loveofdogs

Has anyone with IBS-D received any worthwhile help ? I suffer from this daily. My gastroenterologist started me on Prilosec, dicyclomine. Nothing works for me. Has anyone tried something and it worked ? I’ve canceled many appts, dinners with friends etc because of it. Any info to help would be greatly appreciated.. thank you.

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I live in Louisville KY and found a dietitian who did LEAP testing. I had blood work done and was tested for sensitivities to about 150 things. I’m quite sensitive to a few things, medium sensitive to others and no reaction to most. We then used this information to develop an eating plan for me. No soy, tomatoes, Tylenol, cow’s milk. Other foods I can tolerate occasionally. Some food I can eat 24/7 if I chose. My dietitian worked with me on good substitutes and how to make favorite dishes with substitutes. This has absolutely changed my life. At first it was quite difficult but now it’s usually a snap. Eating out is still a bit of a challenge, but it can be done. No more emergency runs for the bathroom. No more hesitating to accept invitation. No worrying about taking a long walk outdoors. No drugs. I don’t think the MDs are embracing this, but it has had a profound effect on my life. Good luck. I truly understand how you suffer.

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@cindychesler

I live in Louisville KY and found a dietitian who did LEAP testing. I had blood work done and was tested for sensitivities to about 150 things. I’m quite sensitive to a few things, medium sensitive to others and no reaction to most. We then used this information to develop an eating plan for me. No soy, tomatoes, Tylenol, cow’s milk. Other foods I can tolerate occasionally. Some food I can eat 24/7 if I chose. My dietitian worked with me on good substitutes and how to make favorite dishes with substitutes. This has absolutely changed my life. At first it was quite difficult but now it’s usually a snap. Eating out is still a bit of a challenge, but it can be done. No more emergency runs for the bathroom. No more hesitating to accept invitation. No worrying about taking a long walk outdoors. No drugs. I don’t think the MDs are embracing this, but it has had a profound effect on my life. Good luck. I truly understand how you suffer.

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P.S., I had the testing done in ‘19 and have been grateful every day since.

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