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Avatar universal

Chronic Diarrhea

I am a 41 year old woman with recurrent Stage 4 Ovarian cancer.  Bowel was heavily involved at dx in March 2005 and I had debulking surgery and sigmoid colon resectin In Nov 05.  I had a temporary ileostomy for a six month period and this was reversed in April 06 and I had a 9 month remission of the cancer.  In April 2007 I had a complete small bowel obstruction and had bowel bypass surgery.  They bypassed a portion of my small bowel.  The blockage was primarily due to scar tissue from radiotherapy as opposed to cancer. Since this surgery I have had chronic diarrhea, on average I have 30 loose bowl movements per day.   We have tried everything, they thought it was an infection, did antibiotics, stool culture revelaed nothing.  Thought it might be blind loop but not.  I have so many codeine phosphate and lomitol that I rattle. They do not help me, perhaps slow it down a tiny but.  I have tried every low residue food suggested to me, to no avail.  ALthough I still have enough small intestine, it seems that they think I have short bowel sydnrome.  I have tried Questran and Questran lite to help with bile salts absorption, worked a few days and back to chronic diarrhea.  The last few months we have trialled sandostatin LAR.  The first month it worked, I could leave the house but the last two months it has just made the situation worse. We have chnage my anti depressants to an extremly constipating one.,  It hasn't done a thing.  I have two young boys 3 and 6 and I am at my absolute wits end. I have been a prisoner in my home for most of the larst 6 months.  I am desperate to live while I can as I know my time is limited but I must stay at home near a toilet. I am over the public humiliation of accidents.  I feel that the last resort has just about been reached, that I will need a permanant bag to allow me to have some QOL for my remaining time.  My kids need me to be a Mum while I can and this fecal incontince is not helping.  My husband suggested I see a gastroenterologist before I make this decision, to see if their are any other avenues to explore.  I don't want to waste too much time, it is soemthing I do not have.  Can anyone help me, I am desperate for a manageable solution.  The depression of having a terminal disease is bad enough, as well as be covered in your own faeces too.  Thankyou if anyone has any suggestions.  Joolsaq
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Avatar universal
So very sorry to hear of your problems with which I can entirely sympathise. I have had Crohn's for the last 37 yrs and have had my share of flares. However, I got breast cancer in 2003 and had to stop my normal medication (methotrexate, which is an immuno-suppressant chemo) in order to have FEC chemo. For 4 months I didn't eat any solid food. I existed on hospital prescribed Frutijuice, 3 cartons a day, 300 calories each. I still had to wear incontinence pads when I went out, usually just to the hospital by car for my chemo, but still had faecal incontinence in the street, so I know where you are coming from.

I would think you need to see a gastroeneterologist as your incontinence may be caused by ulcerative colitits, or Crohn's. It looks as if a parasitic infection has been ruled out by stool culture. It may be just coincidental with ovarian cancer, of which I know nothing. The only way to definitely diagnose inflammatory bowel disease is through a lower colonoscopy, or an upper endoscopy, with biopsies. There are some new medications now which are very effective. I self inject 12.5 mg of methotrexate once weekly and this has kept my disease in remission - it is never cured. I still have watery or explosive movements in the early morning, but daily codeine phosphate and Triptofan do help in slowing down my motility. I sometimes have to take Imodium if I have been to the loo 4-5 times in the first hour of rising. I have found these meds the only way I can cope with a reasonable quality of life.

A recent new test, calprotectin stool assay, can identify if you have inflammation in the gastric tract, but not specifically where. It is non-invasive and quite cheap to do compared to the scopes. This could give the gastro the information to proceed with scopes.

I do hope you seek out a good gastroenterologist with experience in treating IBD and that you get some answers, and treatment.
Take care,
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