I had a small bowel resection and ileocoecal valve removal in Dec. 12. I cannot take imuran as I do not synthesize the drug. I have been in what I call a flare for about 2 weeks but dr. did blood and stool sample for c. diff. It was negative. They wanted another stool sample to rule out other bacteria, etc. I don't think they will find anything but I am not in remission and I am flaring. Even after my surgery, I knew I was not in remission. I know that some people on here have achieved remission when they had surgery. My dr. said they would try prednisone again and then maybe biologics, etc. I don't think I can handle pred again. I took it for 5 1/2 months last year and I had every side effect known. I don't want to do it again. I also am not of the mindset to watch/wait/let's see. I do not want another surgery like this for as long as I can possibly keep from having one.I have two questions: Why are some dr.s so afraid of trying biologics/ immunosuppressors? Will taking humira or cimzia, etc. get rid of symptoms like massive diahhrea/joint pain/exhaustion, etc? Thanks for any feedback. I am still waiting on 2nd stool sample and bloodwork by Mon.
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Not sure where to place this issue
- Thread starter Vonnie
- Start date
DustyKat
Super Moderator
Have you had diarrhoea since surgery? If so have you tried a bile sequestrant like Questran or as an alternative, psyllium husks?
Have you had blood levels done for B12, Iron Stores, Folate, Vit D, Zinc and Magnesium?
Have you looked into EEN (Exclusive Enteral Nutrition) to help rest the bowel and hopefully assist in alleviating symptoms?
Sorry for all the questions!
Dusty. xxx
Have you had blood levels done for B12, Iron Stores, Folate, Vit D, Zinc and Magnesium?
Have you looked into EEN (Exclusive Enteral Nutrition) to help rest the bowel and hopefully assist in alleviating symptoms?
Sorry for all the questions!
Dusty. xxx
Hi Vonnie
When my daughter was first diagnosed she was put on sulfasalazine and it made her a lot worse. At first the DR didn't believe it was the medication but i tried taking her off it for a few days and her diarrhea would go away. So he then put her on salofalk which caused the same problems. She has no problems with the pentasa but it hasn't been enough to get her in remission.
When my daughter was first diagnosed she was put on sulfasalazine and it made her a lot worse. At first the DR didn't believe it was the medication but i tried taking her off it for a few days and her diarrhea would go away. So he then put her on salofalk which caused the same problems. She has no problems with the pentasa but it hasn't been enough to get her in remission.
Hi all, I haven't tried EEN. I do have anemia which I have struggled with all my life. My other levels were normal or the dr. didn't seem concerned. The only issue was the anemia which I am taking iron supplements for. I took myself off of pentasa several times and it helped the d some but I have not taken it in 3 weeks and I am still having d. I do take immodium (2-3 at a time) which sometimes help but not enough. It affects my work and many times I choose to stay home rather than go places for fear of the d. I have not tried psyllium husks or questran. They were never brought up by my doctor. He was so sure I had c. diff last week that he ordered antibiotics that I ended up not needing. He thought maybe it was from an antibiotic I took 3 weeks ago for a sinus infection. I do also take probiotics. I have had my gallbladder removed several years ago and I have had issues with diahrrea for a long time. Sorry so much info but I think the dr. doesn't really understand what is going on with me either.
I had a colonoscopy on friday and as I thought they found inflammation where I had surgery. They put me back on pred and will discuss biologics on mon. I'm not sure what they will put me on. I'm hoping something will work and won't have to be on pred for long. I feel like I'm back where I was a year ago before I was even diagnosed.