I had UC for 16 years, had J pouch surgery 11/10 and takedown 3/10. For almost two years everything was wonderful. Last week I started have problems (anal pain, urgency, cramping, etc.)Went to have a scope and they found Ulcers in rectal area and diagnosed now with Crohn's. I have to start immediate treatment or go to a permenant colostomy bag. I was wondering what are some input/advice regarding Remicade and Imuran. I thought I was done with meds and I am very scared. I was told I would have to take probably for the rest of my life.
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Kerry, I am sorry to hear this. I wanted to share my situation as it is similar to yours, but appeared sooner after my takedown in May 2011. Maybe this will help you if you have more questions for your GI/surgeon before starting biologics.
I have had rectal ulcers in the cuff for over a year and no one has diagnosed me with crohn's, although I am struggling to get in remission with the standard rectal suppositories with no luck. They suggested pouch advancement surgery for me. I also have a stricture at the connection that may be causing most of my issues.
I am seeing my GI next week to discuss immunosuppressants, but the specialist believe I will need surgery mainly due to the tight stricture.
Did they biopsy your ulcers and that is how they made the diagnosis or are they thinking that because you had two clean years after surgery and are now having symptoms that you have crohn's? I would be very interested to know how they made your diagnosis.
I have been living with a lot of your symptoms for well over a year and no one has told me to start biologics immediately or I would need a bag. Are you certain this is just not typical cuffitis (UC in the anastomosis and remaining rectal cuff)? The treatment for this is typically rectal suppositories (canasa or anucort).
Also, antibiotics can be used as adjunctive therapy for cuffitis.
Good luck.
I have had rectal ulcers in the cuff for over a year and no one has diagnosed me with crohn's, although I am struggling to get in remission with the standard rectal suppositories with no luck. They suggested pouch advancement surgery for me. I also have a stricture at the connection that may be causing most of my issues.
I am seeing my GI next week to discuss immunosuppressants, but the specialist believe I will need surgery mainly due to the tight stricture.
Did they biopsy your ulcers and that is how they made the diagnosis or are they thinking that because you had two clean years after surgery and are now having symptoms that you have crohn's? I would be very interested to know how they made your diagnosis.
I have been living with a lot of your symptoms for well over a year and no one has told me to start biologics immediately or I would need a bag. Are you certain this is just not typical cuffitis (UC in the anastomosis and remaining rectal cuff)? The treatment for this is typically rectal suppositories (canasa or anucort).
Also, antibiotics can be used as adjunctive therapy for cuffitis.
Good luck.
Thank you for your response and story.
Let me try to explain a little better.
So they didn't actually diagnose Crohn's, other then there is no other explanation. They said if I would have developed these ulcers shortly after takedown, it would have been a different story. (And also I should mention that with my coloctomy removal they did find symptoms of what could have been Crohns.) They did biopsy the ulcers, but to determine if they were precancerous. The reason they are having me start meds asap is because one ulcer is deep and will/could soon become a fistula into my vagina, causing many other problems. The GI doctor did not mention going to a colostomy bag, but we ask if it was an option, not really wanting to start these meds and wondering which route would be better for me.
I am also on Antibiotics (cipro, Flagyl) until I make a decision about what I want to do.
Let me try to explain a little better.
So they didn't actually diagnose Crohn's, other then there is no other explanation. They said if I would have developed these ulcers shortly after takedown, it would have been a different story. (And also I should mention that with my coloctomy removal they did find symptoms of what could have been Crohns.) They did biopsy the ulcers, but to determine if they were precancerous. The reason they are having me start meds asap is because one ulcer is deep and will/could soon become a fistula into my vagina, causing many other problems. The GI doctor did not mention going to a colostomy bag, but we ask if it was an option, not really wanting to start these meds and wondering which route would be better for me.
I am also on Antibiotics (cipro, Flagyl) until I make a decision about what I want to do.
I know how difficult this must be for you as I am in a very similar predicament. I am going to discuss biologics with my GI this week. I imagine the ulcer may have been there awhile if it is that deep. I too have bleeding often and will be getting scoped again.
If it were me I would go the biologic route. I know the side effects seem scary but so is major surgery again and Im not sure about you but Im willing to try anything to svoid the bag again. If they work and you have minimal side effects then you can retain your pouch. If your miserable on the meds you know surgery is always an option.
Hopefully the biologics have a high rate of healing the ulcer fairly quickly so the fistula does not develop. Best of luck.
If it were me I would go the biologic route. I know the side effects seem scary but so is major surgery again and Im not sure about you but Im willing to try anything to svoid the bag again. If they work and you have minimal side effects then you can retain your pouch. If your miserable on the meds you know surgery is always an option.
Hopefully the biologics have a high rate of healing the ulcer fairly quickly so the fistula does not develop. Best of luck.