I understand it is a small percentage (4% or so according to my surgeon, but I believe it is higher). My experience is that I struggled with it about 6 months after takedown up until recently (I am at the two year mark since takedown next month).

I had a VERY trying period during this time as you will see if you review my prior posts. At my last scope last week, my cuff looked much better. I do still have a small ulcer in my distal pouch and evidence of inflammation in the cuff, but it is 100% better than before and I felt I would never get off oral antibiotics or rectal medications after almost two years straight.

I don't know how long it has been since your takedown but this clearly takes patience for many of us.

My UC was primarily located in the last 3cm of my rectum, the spot about the size of a quarter, that made my life miserable enough to have surgery. I had a mucosectomy (stripping of the rectal cuff) and have not had cuffitis. It's a delicate operation and should only be performed by someone very experienced.

Sue

Pkitty I have joined the cuffitis group and I am not quite a year from my take down surgery. I was seeing my GI every 4 weeks and she has insisted that I need the surgery. It has healed a great deal from my last scope however, I asked her if it ever heals? She wasn't too positive in her response.
Jeane it is nice to hear you are doing somewhat better.
Suebear I go May 6th back to surgeon to see what my options are. How did you do and how are you now after having the mucosectomy? How is your control?

Roberta

RLC,

I do not have control issues; I am fine. I had my surgery 12 years ago.

Sue

RLC,

I will tell you I was miserable and many people would have succumbed to the surgery considering how bad I felt for so long. It has only been the last couple of months where I feel better and I still have an ulcer in the distal pouch and inflammation in the cuff (most likely will always have some level of inflammation in my cuff). It just looked better than last year. My GI is not an alarmist as I think he has seen everything and always treats based upon my symptoms. My surgeon, on the other hand, did not want me waiting too long to perform surgery. Whether I have made the right choice still remains to be seen. My concern is dysplasia and my GI has told me not to worry as we will keep a close eye on the cuff with annual biopsies and scopes. that is my plan for now.

I was just petrified to go under more surgery as I did have my share of issues after takedown.

Thanks guys - so how is the cuffitis treated?

PKitty, I found this thread searching the exact same question you have, for the same reason. I am starting j-pouch surgery this summer (july 2014) and the issue of cuffitis worries me. If UC attacks that area, why wouldnt it continue after colon removal? I'm trying to find an actual percentage of jpouchers who get cuffitis. Cant seem to find a solid number.

I'm having surgery because the only thing I can take that works is steroids, which I absolutely hate. So if they use steroids to treat it, which they would, id be right where I am now.

My surgeon has indicated about 4% of the lucky ones develop chronic cuffitis. My GI has indicated there will always be some level of inflammation in the cuff. For Most people it does bot create problems. Chronic cuffitus is treated with rectal steroids or Canasa often continually. It can be very stubborn, difficult to treat, and in cases like mine, much worse symptkms than when I had UC.

I just had surgery literally a week ago. I think my surgeon said that my rectum was really bad and she left only half a cm. as low as she could safely go. I will get clarification on that at my follow up though. I am worried too.

I see you all mentioned steroids,and surgery for cuffitis,but don't see Remicaid mentioned as an option your cuffitis.I am interested,because after 16 years,I apparently have developed cuffitis. Cipro didn't work,and Budesonide works ok,but if I accidentally skip a dose the bleeding and cramping return,so I feel this is only a band-aid for the problem.The G.I. said Remicade will be the next step.The Remicaid side effects kinda scare me.

I had the same concern before my surgery. At that point, my doctor told me that a different type of steroid is used to treat it and it would be nothing like being on prednisone and not as nearly detrimental to your body. I had severe UC and was on very high doses of prednisone which was absolutely horrible.

Having severe UC with constant flares and/or constantly dealing with the side-effects of prednisone really reduced my quality of life so I made the choice to do the surgery. I have about 2 CM of my rectal cuff still remaining.

Tech wrench. True cuffitus is first treated with rectsl medications. I have also used cipro as it seems to calm the burn and anal discomfort. Are you certain you do not have pouchitis as it is possible to bleed with that and oral steroids are rarely used to treat cuffitis. My surgeon refrains from biologucs for any pouch issues due to the long term commitment and side effects. If the first line drugs such as antibiotics, rectal meds and entocort do not help, i am certain he will recommend pouch removal for chronic issues. I'm certain my pouch has a shelf life as with three years in I have chronic issues. I'm praying antibiotics do not become ineffective for me.

I have a new,GI,and with the scope 2 months ago,he said the pouch and cuff were both inflamed and had dysplasia (whatever that is).The GI said it was pouchitis,but from what others on this forum have said,bleeding is usually cuffitis.Honestly I really don't know what to call it.I've had pouchitis many times over the last 16 years,and cipro always knocked it out very quickly.This is going on 3 1/2 months now,and with the bleeding,I suspect this is an auto immune issue since c diff was negative. It's been many years since I've been to Mayo,but with the limited abilities of my small town GI,that may be where we're headed.

The term dysplasia means pre-cancer. It is the reason I had my colectomy from UC. I think you may benefit from seeing a specialist at a teaching hospital like mayo. The bleeding concerns me as does the dysplasia terminology.

Yikes ! I thought it was just a fancy term for inflammation.Thank you ! I have been too complacent,and caught up in the day to day life. Not liking the idea of Remicade.Time to go see a specialist.

I just tried to make an appointment with Mayo in Arizona,and they are booked out to late July early August.I have an appointment with my small town GI the end of June,and he was talking about doing the Remicaid then. I am frustrated with how long it takes anywhere to get an appointment.Don't know what to do now!Is Cleveland Clinic the same way ?