Hello Everyone,
I have been struggling with Gastrointestinal problems daily for the past almost four years. Thanksgiving 2006, I thought I had a stomach bug which presented with lots of diarrhea. Went to the PCP who told me to go home drink gatorade and ride out the bug. By day 10 of the diarrhea I was on the toilet 10-15 times a day. I went back to PCP who was at a loss. He began to think it was caused by the Duodenal Switch (WLS) I had in Feb. 05. So, I went to the DS forums online and I started to see posts about people suffering from C. Diff. Initially, my PCP would not even give me the stool test because he was sure I did not have it but after me losing 15 lbs in 3 weeks he finally agreed. Stool test came back positive. I had C. Diff. Started me on flagyl 10 day course, no relief. Tried a second course still nothing. Finally sent me to an Infectious Disease doc.
Side note: My PCP was a part of U of Chicago primary care group so all my specialists referals are into the U fo C network.
The ID doc started me on Vancomyocin in Feb. 07. Didn't work. She enrolled me in a study...Didn't work. Stool tests kept coming back positive. diarrhea still profuse. Went back to hospital for dehydration, put on oral vanc and intravenous flagyl, discharged on four month Vanco taper. C. Diff finally cleared by Janurary 08. Then I began to experience bloating and constipation...severe constipation. In Mar 08, went to ER for pain in Abdomen, severe constipation, distention...diagnosed with Ileitis..inflammation seen on CT. C. Diff test again positive. Follwed up with ID doc who did another C. Diff test negative so she concluded ER lab got false positive because my symptoms were opposite of how C. Diff presents. This episode began a cycle of diarrhea followed by constipation so ID doc referred me to Gastro. Gastro is also specialist in malnutrition disorders so she checked my blood and found I several serious issues going on. Anemia and Low WBC. My ALT and AST, parathyroid, and bilirubin were elevated. She also realized checked previous blood work and realized they were elevated before my WLS. She also indentified that my Calcium, Vit D, Vit A, Magnesium, and Potassium were dangerously low. Things seemed to even out for a while, still diarrhea followed by constipation but it became my new normal. Diarrhea not as severe as it had been before ususally 3-4 bouts in the morning before I left for work and then nothing all day. That would last a week or two then Constipation for 5-6 days and then it would start over again. In Oct. 08, I got pneumonia and the ER physician prescribed Levaquin. As the pneumonia improved I realized the diarrhea seemed to return with a vengeance. The C. Diff returned caused by the antibiotic. I struggled with this until FEB. 09. I returned to work in Feb. with C. Diff gone and the constipation returned but with a lot of pain this time. In April, I went to Gastro with extreme distention, pain, 3 weeks no bowel movement and was hospitalized with a paralytic ileus. Hospitalized 5 days before colon began to move again. July hospitalized again with another paralytic ileus. Once Colon cleared again, gastro performed colonoscopy which was cut short because of inflammation and afraid bowel might perforate but biopsies normal. In September I again was hospitallized with paralytic ileus. Another Colonoscopy performed indeterminate inflammation. I decide at this point to go out of U of C to get a second opinion. New Gastro looks at everything and decides he wants to do a capsule test but first has to do a swallowing test. Swallowing test found partial blockage in small intestines so capsule was contraindicated. He was not sure but felt Crohn's most likely. Also identified what I had been thinking was painful hemmorhoids which were being aggravated by the diarrhea he discovered was an anal fissure. He prescribed Apriso. Didn't work. By February, fourth paralytic ileus in a year. At this point, I felt crazy. My U of C gastro asked me let her do another colonoscopy and an endoscopy to see what she could find. Colonoscopy was normal...she saw inflammation in terminal ileum but could not biopsy. Endoscopy showed tortious esophagus and gastric pooling in stomach. Problem is can't image beyond those two tests. March had fissure repair. Again things seemed to settle back into pattern of diarrhea followed by constipation. Began to regain some of the almost thirty pounds I had lost over the past 3.5 years. When all this began I weighed about 168lbs. My low was 139lbs. Now I weigh151 lbs. Then about three weeks ago, my right flank began to ache on and off. At first, I thought maybe I pulled a muscle but as time goes on I know its internal. Activity can aggravate it but other times I could be in bed, like today, and it excruciating. At the same time, both of my pointer fingers began to swell and hurt...I mean hurt to the touch. The middle knuckle is visibly swollen and is so sore to the touch all day. About three days after these two things started the severe diarrhea returned. 10-12 times a day, urgent, mucous, watery, cramping, pain. Actually had accident because I could not make it the bathroom fast enough. Last Thursday, I went to see new PCP (previous PCP left U of C) explained the recurrence of the severe diarrhea, pain in right flank, inflammation in hands, so she ordered blood tests, hand x-rays, and told me to right out flank pain...probably muscular though I clearly told her it was not. Friday...I was Rheumatologist for yearly check up for Sarcoidosis. She looked at blood work which of showed again severe malnutrition, anemia, low WBC, elevated ALT, AST,and bilirubin. X-rays showed bi-lateral inflammation in soft tissure around the joints in more than the joints I was complaing about. She is scheduling MRI to get better look at bones.
I need to also mention that I have Sarcoidosis and it was very active for almost 13 years. From 1993 until 2004 I was on significant doses of 40-60mg of Prednisone the entire time. I do however remember having serious stomach issues with losts of pain and diarrhea when I was first diagnosed with Sardcoid. At the time, my physician attributed it to the fact I had gone through a recent divorce. I wonder if I have Crohn's rather than Sarcoid because as I read about the two they can look identical. Or both. I wonder if my steroid use all the years kept this problem under control and when I went off the steroids and had the inital c. diff. infection, it woke up the crohn's....I dkn...just my rambling thoughts now.
Recap:
Stomach pain and Diarrhea---started in late '80s
Sarcoidosis----------confirmed on lung biopsy 1993
Predisone Use...........July 1993-Novemer 2004
WLS-----------------February 2005
C. Diff---------------Nov 2006
C. Diff clear--------- Jan 2008
Ileitis--------------- March 2008
C. Diff---------------October 2008
C. Diff clear----------February 2009
Paralytic Ileus...........April 2009, July 2009, September 2009, February 2010
Anal Fissure repair----March 2010
Flank Pain------------June 2010
Bi-Lateral Hand Arthritis
Profuse Diarrhea
3 Colonoscopies --1 severe inflammation in descending colon believed due to
C. Diff. 07/09
2. Boggy mucosa, indeterminate inflammation 09/09
3. Biopsies normal...inflammation appears improved
1 Endoscopy -- 1. Tortious Esophagus
2. Slight inflammation in Stomach
Small bowel Study Swalling Test- Partial Blockage in Termianl Ileum 12/09
Capsule Test------Contraindicated due to narrowing
University of Chicago Gastro adamant you can't diagnose Crohn's except by biopsy but cant get to my small bowel to biopsy it and Colon seems to be clear. What do I do?
All help and suggestions wanted and badly needed.
I have been struggling with Gastrointestinal problems daily for the past almost four years. Thanksgiving 2006, I thought I had a stomach bug which presented with lots of diarrhea. Went to the PCP who told me to go home drink gatorade and ride out the bug. By day 10 of the diarrhea I was on the toilet 10-15 times a day. I went back to PCP who was at a loss. He began to think it was caused by the Duodenal Switch (WLS) I had in Feb. 05. So, I went to the DS forums online and I started to see posts about people suffering from C. Diff. Initially, my PCP would not even give me the stool test because he was sure I did not have it but after me losing 15 lbs in 3 weeks he finally agreed. Stool test came back positive. I had C. Diff. Started me on flagyl 10 day course, no relief. Tried a second course still nothing. Finally sent me to an Infectious Disease doc.
Side note: My PCP was a part of U of Chicago primary care group so all my specialists referals are into the U fo C network.
The ID doc started me on Vancomyocin in Feb. 07. Didn't work. She enrolled me in a study...Didn't work. Stool tests kept coming back positive. diarrhea still profuse. Went back to hospital for dehydration, put on oral vanc and intravenous flagyl, discharged on four month Vanco taper. C. Diff finally cleared by Janurary 08. Then I began to experience bloating and constipation...severe constipation. In Mar 08, went to ER for pain in Abdomen, severe constipation, distention...diagnosed with Ileitis..inflammation seen on CT. C. Diff test again positive. Follwed up with ID doc who did another C. Diff test negative so she concluded ER lab got false positive because my symptoms were opposite of how C. Diff presents. This episode began a cycle of diarrhea followed by constipation so ID doc referred me to Gastro. Gastro is also specialist in malnutrition disorders so she checked my blood and found I several serious issues going on. Anemia and Low WBC. My ALT and AST, parathyroid, and bilirubin were elevated. She also realized checked previous blood work and realized they were elevated before my WLS. She also indentified that my Calcium, Vit D, Vit A, Magnesium, and Potassium were dangerously low. Things seemed to even out for a while, still diarrhea followed by constipation but it became my new normal. Diarrhea not as severe as it had been before ususally 3-4 bouts in the morning before I left for work and then nothing all day. That would last a week or two then Constipation for 5-6 days and then it would start over again. In Oct. 08, I got pneumonia and the ER physician prescribed Levaquin. As the pneumonia improved I realized the diarrhea seemed to return with a vengeance. The C. Diff returned caused by the antibiotic. I struggled with this until FEB. 09. I returned to work in Feb. with C. Diff gone and the constipation returned but with a lot of pain this time. In April, I went to Gastro with extreme distention, pain, 3 weeks no bowel movement and was hospitalized with a paralytic ileus. Hospitalized 5 days before colon began to move again. July hospitalized again with another paralytic ileus. Once Colon cleared again, gastro performed colonoscopy which was cut short because of inflammation and afraid bowel might perforate but biopsies normal. In September I again was hospitallized with paralytic ileus. Another Colonoscopy performed indeterminate inflammation. I decide at this point to go out of U of C to get a second opinion. New Gastro looks at everything and decides he wants to do a capsule test but first has to do a swallowing test. Swallowing test found partial blockage in small intestines so capsule was contraindicated. He was not sure but felt Crohn's most likely. Also identified what I had been thinking was painful hemmorhoids which were being aggravated by the diarrhea he discovered was an anal fissure. He prescribed Apriso. Didn't work. By February, fourth paralytic ileus in a year. At this point, I felt crazy. My U of C gastro asked me let her do another colonoscopy and an endoscopy to see what she could find. Colonoscopy was normal...she saw inflammation in terminal ileum but could not biopsy. Endoscopy showed tortious esophagus and gastric pooling in stomach. Problem is can't image beyond those two tests. March had fissure repair. Again things seemed to settle back into pattern of diarrhea followed by constipation. Began to regain some of the almost thirty pounds I had lost over the past 3.5 years. When all this began I weighed about 168lbs. My low was 139lbs. Now I weigh151 lbs. Then about three weeks ago, my right flank began to ache on and off. At first, I thought maybe I pulled a muscle but as time goes on I know its internal. Activity can aggravate it but other times I could be in bed, like today, and it excruciating. At the same time, both of my pointer fingers began to swell and hurt...I mean hurt to the touch. The middle knuckle is visibly swollen and is so sore to the touch all day. About three days after these two things started the severe diarrhea returned. 10-12 times a day, urgent, mucous, watery, cramping, pain. Actually had accident because I could not make it the bathroom fast enough. Last Thursday, I went to see new PCP (previous PCP left U of C) explained the recurrence of the severe diarrhea, pain in right flank, inflammation in hands, so she ordered blood tests, hand x-rays, and told me to right out flank pain...probably muscular though I clearly told her it was not. Friday...I was Rheumatologist for yearly check up for Sarcoidosis. She looked at blood work which of showed again severe malnutrition, anemia, low WBC, elevated ALT, AST,and bilirubin. X-rays showed bi-lateral inflammation in soft tissure around the joints in more than the joints I was complaing about. She is scheduling MRI to get better look at bones.
I need to also mention that I have Sarcoidosis and it was very active for almost 13 years. From 1993 until 2004 I was on significant doses of 40-60mg of Prednisone the entire time. I do however remember having serious stomach issues with losts of pain and diarrhea when I was first diagnosed with Sardcoid. At the time, my physician attributed it to the fact I had gone through a recent divorce. I wonder if I have Crohn's rather than Sarcoid because as I read about the two they can look identical. Or both. I wonder if my steroid use all the years kept this problem under control and when I went off the steroids and had the inital c. diff. infection, it woke up the crohn's....I dkn...just my rambling thoughts now.
Recap:
Stomach pain and Diarrhea---started in late '80s
Sarcoidosis----------confirmed on lung biopsy 1993
Predisone Use...........July 1993-Novemer 2004
WLS-----------------February 2005
C. Diff---------------Nov 2006
C. Diff clear--------- Jan 2008
Ileitis--------------- March 2008
C. Diff---------------October 2008
C. Diff clear----------February 2009
Paralytic Ileus...........April 2009, July 2009, September 2009, February 2010
Anal Fissure repair----March 2010
Flank Pain------------June 2010
Bi-Lateral Hand Arthritis
Profuse Diarrhea
3 Colonoscopies --1 severe inflammation in descending colon believed due to
C. Diff. 07/09
2. Boggy mucosa, indeterminate inflammation 09/09
3. Biopsies normal...inflammation appears improved
1 Endoscopy -- 1. Tortious Esophagus
2. Slight inflammation in Stomach
Small bowel Study Swalling Test- Partial Blockage in Termianl Ileum 12/09
Capsule Test------Contraindicated due to narrowing
University of Chicago Gastro adamant you can't diagnose Crohn's except by biopsy but cant get to my small bowel to biopsy it and Colon seems to be clear. What do I do?
All help and suggestions wanted and badly needed.
