Hi All
I am new to the forum, but have 31 years of UC/Crohns "under my belt".
I was dx 31 years ago with UC, after 13 years of high dose pred and no real remission I had a colectomy/j-pouch (two stage surgery, ilio for 5 months before takedown). I was very lucky that my pouch was great, almost "normal" again, for about 14 years. Started getting sick again and dx with pouchitis. Cipro worked ok, but then stopped and got really bad again...diarhe many many times/day. Dx crohn's about 2 years ago and I feel like I have been living in Hell.
Been on so many meds I give up remembering them. Nothing helps the diahrea, not immodium, levbid, or even codeine! My lfe is revolving around bathrooms again, and my world is getting smaller and smaller. I feel like I am becoming my disease as it is never far from my mind. I am a mental health counselor, and it is sometimes very difficult to practice because on the really bad days my concentration is so off. It doesn't help that my sleep is so fragmented with bathroom trips every 90 minutes or so all night. I really wonder how I can function at all! It is amazing how we can adapt to almost anything.
I have just started on 6MP and I am really hoping that I may have improvement, though it is a really scary drug. I have already battled breast cancer and kidney cancer so I really worry. My family and friends are quite supportive, but, as you know, they can't REALLY understand. I am so glad to have found this forum! I can really be with folks who KNOW.
I am also fighting some awful hemmies. Seeing my surgeon next week about them, and hoping that the "thing" sticking out this past month is only a prolapsed one and not something really terrible. Keep your fingers crossed for me please.
Well, this was just going to be a "brief" intro! Sorry for the long post. See you in the forums!
Debbie
I am new to the forum, but have 31 years of UC/Crohns "under my belt".
I was dx 31 years ago with UC, after 13 years of high dose pred and no real remission I had a colectomy/j-pouch (two stage surgery, ilio for 5 months before takedown). I was very lucky that my pouch was great, almost "normal" again, for about 14 years. Started getting sick again and dx with pouchitis. Cipro worked ok, but then stopped and got really bad again...diarhe many many times/day. Dx crohn's about 2 years ago and I feel like I have been living in Hell.
Been on so many meds I give up remembering them. Nothing helps the diahrea, not immodium, levbid, or even codeine! My lfe is revolving around bathrooms again, and my world is getting smaller and smaller. I feel like I am becoming my disease as it is never far from my mind. I am a mental health counselor, and it is sometimes very difficult to practice because on the really bad days my concentration is so off. It doesn't help that my sleep is so fragmented with bathroom trips every 90 minutes or so all night. I really wonder how I can function at all! It is amazing how we can adapt to almost anything.
I have just started on 6MP and I am really hoping that I may have improvement, though it is a really scary drug. I have already battled breast cancer and kidney cancer so I really worry. My family and friends are quite supportive, but, as you know, they can't REALLY understand. I am so glad to have found this forum! I can really be with folks who KNOW.
I am also fighting some awful hemmies. Seeing my surgeon next week about them, and hoping that the "thing" sticking out this past month is only a prolapsed one and not something really terrible. Keep your fingers crossed for me please.
Well, this was just going to be a "brief" intro! Sorry for the long post. See you in the forums!
Debbie
