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Ulcerative Colitis
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Posted 11/21/2017 11:05 AM (GMT -5)
I was diagnosed with ulcerative colitis in June of 2016. They did a colonoscopy and found ulteration at both ends of my colon (rectal and cecum)but mild. They doctor then had me do some blood tests and a barium x-ray to look at small intestines. Small intestines were clean so no Chrones but blood tests were inconclusive. Doctor then said I had undifferentiated colitis. I was put on 3.6 of Lialda and suppositories. All was fine for a little over a year. Had issues with bowel frequency around my period and softer stools always (use to always be constipated) but felt good saw no issues.

Fast forward to Aug 2017...had a really bad week with diarrhea and cramping. Couldn't leave the house 2 of those days. Doctor increased Lialda to highest dose. Didn't seem to help. In for another colonoscopy because of the inconsistent results last summer. Found that one of the ulcerations had cleared up and the other had spread still mild. Doctor kept me on the higher dose of lialda and added budesonide. Diarrhea went away but I still have cramping and go to the bathroom frequently in the am and stool skinny and very soft (have to wipe many times). Doctor will let me take some anti-cramping meds/or anti diarrheal meds...which do help but I don't think I should be taking them 4 to 5 times a week. Dr said next step would be imuran or 6mp. Do I really need to take these? Very rarely do I ever see blood in my stools but I have been dealing with very mild anemia for a couple of years (even before all of my troubles)
Posted 11/21/2017 11:17 AM (GMT -5)
I would suggest you get on nightly mesalamine enemas. I'm assuming the cecum is what improved, and the rectum is spreading upward?

What budesonide exactly? Oral or rectal...
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Posted 11/21/2017 11:43 AM (GMT -5)
Oral Budesonide
Posted 11/21/2017 1:15 PM (GMT -5)
If you've tried the maximum dosage of anti-inflammatory mesalamine in both oral and rectal routes (4,800 milligrams oral like lialda and another 4,000 milligrams via enema like rowasa), then I would consider Immunomodulators like Imura/azathioprine/6MP.

What concerns you about 6MP/Imuran?

I ask as I've been on 6MP for 4 years now and have yet to experience a side effect from it. Everyone is a little bit nervous when considering a new class of UC medications, myself included. What helped me was comparing the risks versus the benefits. The odds of 6MP/Imuran improving your UC symptoms is around 70%. The side effects are rare on it, less than 1% of UC patients get serious side effects from it.

If you want to take a deeper dive into what side effects are possible and the odds of getting them, then I highly recommend the following from the Crohn's and Colitis Foundation of America:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 11/21/2017 2:20 PM (GMT -5)
I have only had suppositories no rectal enemas. Would they help if it is at the entrance of my colon...the Cecum...That is where my ulceration currently is. The rectum area cleared up with just the suppositories. I have a call into the Drs. office to see what he says.

And yes my concern with 6MP is the side effects. I also know my symptoms are just frequency and very soft stools...pretty sure once I am off the Budesonide I will have diarrhea again.

Also I have read differing info about increasing fiber. I know fiber can bulk stools up so I didn't know if that would help.
Posted 11/21/2017 3:15 PM (GMT -5)
Enemas will not help inflammation within the cecum.
Posted 11/21/2017 3:35 PM (GMT -5)
That is what I thought. We will see what the Dr. wants to do. He keeps saying mine is mild but in my mind if it was spreading on 3.6 of Lialda the Lialda alone wasn't going to help. He was willing to put me on something stronger but did tell me that comes with risks. I think he was really surprised the increase in lialda and the oral budesonide didn't stop my symptoms.
Posted 11/21/2017 3:45 PM (GMT -5)
It really comes down to what works for you. I started as a mild case of UC and progressed to a severe case needing biologics (remicade), immunomodulators (6mp), and anti-inflammatory mesalamines (lialda and rowasa). There's risk in everything, from getting out of bed, to hoping in a vehicle, and eating food. In the end you balance what is necessary against the risks.
Posted 11/21/2017 10:46 PM (GMT -5)
I spoke to my doctor and I am set up to do some blood tests and if everything comes back how they want it I will be starting 6mp. Anything I should watch for or expect?
Posted 11/22/2017 12:25 AM (GMT -5)
drink lots of water with these drugs to prevent kidney stones, and periodically monitor liver enzyme levels. some people have been on 6mp for many years.

organ transfer patients on much higher doses of 6mp - I was not keen to take it, and waited a long time for slow improvment on Lialda, so I understand. Today I might decide to take. If I get colon cancer later, I will always wonder if the 6mp would have staved it off.
Posted 11/22/2017 7:13 AM (GMT -5)
Very rarely do I ever see blood in my stools

I would try the enemas before moving up to Imuran or 6mp. Enemas may not affect the cecum directly but most inflammation is initiated in the lower bowel before spreading upwards.

Ask your doctor if once you begin Imuran if it is best practices to remain on it permanently.
Posted 11/22/2017 8:32 AM (GMT -5)
I had very few side effects after starting imuran. When I increased my dosage I had a few weeks of a loss of appetite and that was it.

I also want to mention that while we all strive to be symptom free it's also important to aim for clinical remission and clean scopes. The longer we have active disease the higher the risk of colon cancer. Treating symptoms for quality of life is definitely a priority but following up with treating inflammation for long term health is just as if not more important.
Posted 11/23/2017 11:03 AM (GMT -5)
Iamcurious - my doctor said I shouldn't have to stay on 6mp - maybe a year at most depending on how quick I respond.
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