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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@rits

I'm so sorry you are going through this and I hope you can get some help soon. I had radiation for endometrial (uterine) in 1995. I had episodes of diarrhea starting about 10 years later. I told the doctors that I was sure it was from the radiation but just like you I was told it had healed. During the years I had a lot of polyps so I had colnoscopies every 2-3 years. In 2015 exactly 20 years after the first cancer a Colonoscopy discovered a malignant tumor in my colon . Genetic testing concluded that the cancer was caused by the radiation. The surgeon removed almost 2 feet of my small bowel in addition to the almost one foot of the colon where the tumor was. He never told me that he would remove anything other than the tumor and margins around it. When i asked why he did that he said it was "funky " from the radiation and wasn't doing me any good. I had tried to tell him that I had a lot of radiation and my system was a mess but he said it was a long time ago.

Since the surgery I have episodes where stuff shoots out of me. I have cramps snd terrible gas and gas pains. I eat a lot of white rice and my activities are limited.

However I am not incontinent and am so sorry that you are. I am 78 and I have a Colonoscopy every year.

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@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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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4663381/
Pelvic radiation therapy: Between delight and disaster

(this is a long read and complicated but there are many shorter articles on late state radiation damage and as patients we may not realize these side effects , but surely oncologists/gastroenterologists should know about them) as one article states they have come a long way since the 1980s and are more precise with the radiation and not affecting such a large area; am of course thankful that cancer can be treated but as articles state, the long lasting effects are not being addressed and causing pain and suffering.... as most things, good/bad mixture. J.

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@lacy2

Hello. I have had ibs-d maybe from pelvic radiation damage although they say thats healed by now; cdiff in 2018 and since then fecal incontinence. I dont want another colonoscopy at 77 and many other illnesses and my family just noticed a test called Faecal calprotectin. Would I be in line to ask a doctor for this test.. I have no family dr just a walkin clinic and emerge dept. Thanks.J. Ontario

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@lacy2 Hello Lacy. I'm 85, and just had a CT Colonography, because the doctors say I'm too big a risk for the more invasive Colonoscopy. I've also had the Faecal Protectin test, which was elevated. My advice is that you certainly can ask a doctor for those tests. Both were covered by my public Healthcare.

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@lacy2

Thanks. I know colonoscopies have a small percentage of possible problems like bowel perforation but reading that after age 65 is more risky so am nervous to have another, last one 2008 he said showed nothing (but when I got copy of my dr file saw his report, a few years later, which showed some issue with colon.
Although he said radiation from 1985 (for cancer of cervix 4 times a day each side for 5 weeks) he said radiation damage has healed.. but surely it scars the bowel or must do "something." It was about 10 years later diarrhea started occasionally and has progressed, with the help of too many antibiotics for uti's, to C.Diff in 2018 and another 140 antibiotics (VAncomycin) and then to fecal incontinence and never a firmed stool, just mush on and off all day.. so am pretty fed up along with other medical issues.
Not looking for sympathy but just dont think can go through another colonoscopy at this time.... but was interested to know if I could have mri or another xray of abdomen or the calprotectin test which my daughter just saw on tiktok.
Living with this (and other issues) at 77 is a life changer and, no, diapers do not soak up pasty and I had a problem while having blood test the other day, so embarrassing and a little goes a long way! ugh !!!

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@lacy2 hi again Lacy. I just saw your second text, and I hear you. Same problems, same embarrassing accidents. Do look into having the CT Colonography and Faecal Protectin test. You deserve whatever tests that are available!

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@artist01 thank you for the information.. may I ask for the CT Colonography did you have to do the same prep as is required for regular conoloscopy? I only just heard of the Faecal Protectin test so will have to ask Dr from clinic to refer me next week....was it a stool sample? J. p.s. I wonder what they do when Protectin test elevated>

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@lacy2 I just typed a reply to your two questions but it was too long, wouldn't send, and I lost it. Did you receive it, by chance?
Answer is yes, pretty much same prep, except you have a few small barium drinks too.
The Faecal Calprotectin test is a stool sample sent to the Lab.

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@lacy2 P.S. Because my Calprotectin test was elevated, that's why the G.I
ordered the Colonography.

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@artist01

@lacy2 P.S. Because my Calprotectin test was elevated, that's why the G.I
ordered the Colonography.

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@artist101 Thank you for the info. no, darn it, didnt get your lost note...that happened to me a lot when I had long response.... next week will definitely ask for the CAlprotectin test first... since c.diff my bm's are paste unless I take Imodium... I have 2 dozen white facecloths for my use only and keep a pail with bleach and water in basement separate from other laundry... it's not a full time job but almost some days and dont eat fresh fruit and vegetables etc. which makes it worse. Found out recently thru a clinic doctor who was smart enough to order test for vitamin D that I was really really low, and also bottom end of Vit B.... no doctor has ever tested before or even asked what my diet is... I know, they are busy, and cant think of everything and I feel to blame for not enquiring about it as knew my diet was the pits and indoors a lot last 2.5 years.... but sometimes just get tired of being my own advocate over and over. Hope things turn out ok for you ... J.

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@lacy2

@artist101 Thank you for the info. no, darn it, didnt get your lost note...that happened to me a lot when I had long response.... next week will definitely ask for the CAlprotectin test first... since c.diff my bm's are paste unless I take Imodium... I have 2 dozen white facecloths for my use only and keep a pail with bleach and water in basement separate from other laundry... it's not a full time job but almost some days and dont eat fresh fruit and vegetables etc. which makes it worse. Found out recently thru a clinic doctor who was smart enough to order test for vitamin D that I was really really low, and also bottom end of Vit B.... no doctor has ever tested before or even asked what my diet is... I know, they are busy, and cant think of everything and I feel to blame for not enquiring about it as knew my diet was the pits and indoors a lot last 2.5 years.... but sometimes just get tired of being my own advocate over and over. Hope things turn out ok for you ... J.

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@lacy2 Hi Lacy
I think you should also ask for the CT Colonoscopy NOW, rather than waiting. You are already suffering considerably from your symptoms, and certainly have plenty of evidence to ask for that too. There may be quite a wait for it. I got mine immediately because I was admitted to the hospital due to extreme diarrhea and blackouts, ambulance, etc.

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....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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