Feel like I'm starting over...advice?

Hi there,

I'm new to this forum and really happy to have found it.

I was diagnosed in 1992 with universal colitis and have struggled for the last 18 years never really having been in remission for a significant amount of time.

This year after my annual colonoscopy in March, I contracted C-diff and went undiagnosed (many false negatives) until I was hospitalized in July and the hospital finally got a positive.

In early October I underwent another colonoscopy to prove by biopsy that the c-diff was gone.  A week later, I developed a blood clot and lost a lot of blood.  I was hospitalized again and was given blood transfusions to save my life.  It was determined that the colonoscopy had left me with an internal cut.

I'm now on 40mg Prednisone and with a new doctor.  I'm trying to get my strength back as well as recover from the last 6 months of c-diff.  It's been a long road, but I think I'm finally on the right track.

I'm wondering about maintenance medications.  I can't tolerate sulfa and after 5 years cannot take colozal.  The new doctor wants to start me on 6mp, but after looking at the list of potential side effects, I'm really nervous. 

Two questions, what have your experiences with 6mp been and has anyone had any luck with more homeopathic solutions?  After 18 years, I still feel a bit in denial, but know I need to address this to get my life back on track.  I have the most incredible family and support network and I need to be back to me, not just for me, but for them.

Thank you in advance for any stories you can share.  :)

Well, if you are concerned about drugs and have already suffered for 18 years, why not consider surgery?

The oral maintenance medications do not have sulfa other then Sulfasalazine obviously. There is Asacol, Asacol HD, Apriso and Lialda which are mesalamines and Colazal which is a basalazide. Besides the Colazal, have you tried any other these? If you can tolerate a mesalamine, I second the suggestion of Rowasa retention enemas. These can help tremendously with rectal/sigmoid inflammation. And if you can't tolerate mesalamines, hydrocortisone enemas can help.

I've had Uc for 18 years as well and have never truly been in remission. It took a good slap upside my head to get out of denial! lol Along with the help of these lovely folks here on the forum. I have been on 6mp for 4 years and at first I was afraid as well. I never really responded well to 6mp so I had another med added to the mix. But there are many of us here that have been on 6mp and respond nicely. What you read on the internet is more or less designed for people that use this for organ transplants or cancer and they are a much higher dosage. The risks of 6mp or Imuran are much lower for us. We still face some risk when we take it however, such as lowered immune system, liver issues and pancreatitis. But that is the idea of 6mp; to lower the immune system so the body will stop attacking what it is in the colon that it doesn't like.

If you don't want to go that route, peruse the forum and look at the various diets that others have tried such as the SCD or Spinach/sunflower diet.