- CASE FILE
I am an illeostomate with past history of Crohn's Disease and have had extremely high output for the past 2 years with chronic diarrhea.
ABOUT THIS CASE FILE
I am 66 years old and have had Crohn’s disease since I was 19. In 1983 I had an ileostomy and subsequently 2 revisions that removed about 1/3 of my small intestine. My Crohn’s was well somewhat controlled with codeine and courses of prednisone for flareups. In 1993 I had my last surgery and started azathioprine which controlled the Crohn’s until 2017. In 2017 at the recommendation of my Rheumatologist and with agreement of my Gastroenterologist, I stopped azathioprine and started oral methotrexate 7.5 mg dose to help manage my arthritis symptoms better.
Between 2017 and 2018 I began having looser stools and stool output steadily increased. A pill cam study was done and there was inflammation of the bowel but no active Crohn’s. I also switched from lomotil to loperamide. Symptoms grew progressively worse. I was also diagnosed with Stage 3 Kidney failure because my small intestine was not absorbing sufficient liquid. Cholestramine 3x daily was prescribed.
In June 2018 I contracted a campylobacter infection and became hospitalized with severe diarrhea and dehydration. Two courses of antibiotics were given to treat the campylobacter Allopurinal 100 mg and Cipofloxacin 500 mg. The diarrhea persisted with ~6 liters of output per day and hospital stay was extended. During the stay Octreotide 1 mL was tried, then Xifaxan 550 mg along with restart of Lomotil along with Cholestramine. A illeoscopy and CT scan were also performed with inflammation and no active Crohn’s. When I was discharged after 14 days, output was ~4.5 to 5 liters per day, and daily saline infusions (1600 ml over 8 hours) was prescribed.
I had a consult with a short bowel specialist at Penn Medicine in Philadelphia and was eventually prescribed Gattex starting at 1/3 dose. Within the 1st month I had two bowel obstructions, stopped Gattex for a month, restarted and had another 2 blockages before stopping completely. I was on Gattex for a total of 3 months and it did help by dropping output almost a liter. We then tried a 2 week course of Flagyl, which did not change anything.
In June 2019 GI prescribed Octeotride again at 1 mL 3x a day which did not help either. Another Pill Cam study was performed in May/June 2019 with no signs of active Crohn’s. Stool output continues to range from 4 liters to 6 liters daily and I continue the daily 1600 mL saline infusions. The latest diagnosis is intestinal failure. I seem to obtain enough nutrition to sustain me and weight fluctuates from 173 to 180 depending on fluid retention.
I also have numerous co-morbid conditions including: chronic Vit K deficiency, chronic low magnesium and Vit D levels, exercise induced asthma, a hernia next to stoma, abdominal fistula, osteo arthritis, gall bladder stones, macular degeneration, and essential tremor. I see a gastroenterologist, gastroenterologist for short bowel, hematologist, rheumatologist, ophthalmologist, nephrologist plus my family doctor. Unfortunately, there is not one person who will manage my overall care as they all say the other conditions are outside of their expertise. My wife and I have become the managers of my overall medical care and making sure each specialist is aware of what is occurring. I would like to find a solution to the high output so i can start living a normal life again. I cannot go anywhere without having a bathroom available every hour. Short bowel physician has stated there is nothing more she can do, but suggested codeine or tincture of opium may be useful to try. GI does not agree with attempting these treatments. We have not tried a biologic since the Crohn’s appears to be under control but I wonder if that would be helpful in controlling inflammation in the bowel. Fecal transplant was mentioned but there has not been serious discussion since c difficile has been ruled out. Any suggestions on additional treatments to try would be appreciated.