kjeane,

Sorry to hear of your results. I am 20 years post takedown and really have not had the same issues as you. I have a pattern of mild inflammation/pouchitis below the inlet and above the outlet which has remained in a "simmering" state for about 17 years with antibiotic treatment. I would probably have the same concerns as you, but perhaps you will respond well to the rectal meds and the next scope will show that. Our GI has also told me that the inflammation in the rectal cuff could be microscopic and lead to the same concerns as far as cancer of the rectal cuff. So basically all of us, not just you, have the same concern which needs to be addressed with regular (annual) scopes and biopsies of that tissue.

The fact that you are somewhat asymptomatic is likely a good sign, and if symptoms return there is always antibiotics - which has controlled my situation for 17 years with no evidence of causing other issues, possibly because I have rotated them every 3-4 weeks.

Thanks DJB. I am just confused as to why the GI did not recommend antibiotics again and did not seem overly concerned about these results after meeting with him in recover. The way he wrote them up alarmed me. I have visions of my distal pouch are and cuff crumbling to the point of no return which will likely lead me down the road of a permanent ileo sooner that I thought. I am waiting for biopsies and to hear from my colorectal surgeon on his take on the results.
I may just start antibiotics myself but it seems that even with them, the distal pouch has been in the same shape since takedown although prior reports did not indicate anything as detailed as this report does.

I think maybe after the biopsies come back you should have a talk with him about your concerns, after also getting your surgeon's take.

All of the GIs seem resistant about going to antibiotics until everything else has been proven to have failed. In my case they tried rectal meds, entocort, rowasa enemas and probiotics which all failed before I achieved great success with the rotating antibiotic regimen. They want to see a pattern of failure of other treatments before you are married to antibiotics like I have been for 17 years. And maybe those meds will work for you.

Thanks again DJB. I will let you know what transpires after biopsy results. Maybe it is not as bad as I am thinking (I hope). I started the augmentin on my own today to be safe and will discuss this with both surgeon and GI.

kjeane,

Sorry you had a disappointing scope. I've been there and was so upset I was and still am worried this is not going to work in the long run.

The friability is "moderate" and the ulcer is 8Mm. I think that means the ulcer is tiny and there is not much friability. What does that mean? I saw that word in my pre surgery colonoscopy but it was also with other bad words and none of them were moderate. So I hope your surgeon or GI can explain that better.

After all of this has sunk in you have more questions so please ask for a better explanation.

My GI sent me to a specialized GI at Mayo because of my cuffitis that has not gone away. I've been treated for it since January and probably had it for months before that.

My biopsies Pathology reports state that I have "colonic mucosa intense acute and chronic inflammation with ulceration. Occasional crypt abcesses are present. The intensity of the inflammation suggests recurrent ulcerative colitis rather than pouchitis."

He said I have Irritable Pouch and my pouch dysfunction is multifactorial including the above and my thyroid is way out of wack. He put me on canasa again and gave me a 6 month prescription. He said after it gets better I should slowly taper and that some of his patients use it every other night or twice a week for maintenance.

I still have UC!!! They call it cuffitis but it is UC.

See how lousy all of these reports sound. Acute and Chronic, crypt abscesses - great I have permanent UC STILL and I have IPS. Will I ever get off of pain meds?

You feel better so I'm hopeful that you will continue to get better. The rectal meds appear to be working on your cuff and maybe they will on the ulcer. I think you should ask if they will treat the ulcer too. Is it so small that it's going to go away or is there a possibility of it getting larger? I wonder if you need to rotate to a different antibiotic like DJBHusky does.

I am glad you are feeling better and think everything is probably ok and the words used cause worry.

Take care

If you aren't having symptoms, then why the worry? Yes, cuffitis is UC of the cuff. But if it is manageable with rectal meds, then carry on with it. No need to worry about all the technical mumbo jumbo in scope reports. I'm not sure anyone gets a perfect pouch report. I surely would never miss a yearly scope though. To alleviate your worries, focus on the fact that you are relatively symptom free and you are fortunate to be that way off the antibiotics! Long term antiobiotics are not good for the overall state of your health. So if all you need are rectal meds to stay pretty well, then I think you are one successful jpoucher!

liz11 and cuffitis sufferers

It sounds like you are experienced with cuffitis. I've been on suppositories and had C-diff at the same time as the Cuffitis. The doctor said when it got better to go to every other night with the Canasa and then like 2 times a week for maintenance.

I've also had other pain from adhesions and scars since the surgeries. I've been able to cut down on my pain meds, but not off of them yet.

How can I tell when the cuffitis is better. I don't think it is but have not seen any blood for a week or two. I still am having too many BM's a day but it's not as bad as it was.

Will I be able to tell by how the cuff feels inside? I didn't use suppositories until it was diagnosed and the cuff still feels the same as it did then. Will the cuff feel differently when the inflammation is over? I've been treating this for 5 months already.......

Toughenough,

I have been treating my cuffitis on and off for a year and now again I am on rectal meds and after a week or so I still feel irritation. My pouchitis has not subsided so I keep wondering if my pouch time is limited. I know how frustrating it is. My GI said there is always some level of inflammation in our cuff but often it can be asymptomatic as mine was prior to the scope. I was surprised he found cuffitis at the time of my scope because of this and even more surprised about the small ulcer at the anastomosis and the level of pouchitis in my pouch.

Some days I just wake up in an angry mood and I do not want to deal with people or the other pressures of raising teens etc. I too am tired of the well meaning people I know who are ignorant regarding this disease telling me to see a nutrition expert as if that will cure my disease. I no longer discuss my frustration or illness with anyone else other than those on this board as I feel it is useless. It is unfair for me to blame others for not understanding this disease. Medical science still cannot determine what causes it.

When I feel like this, where all I know is pain, it really brings me down. During those times (which have been often over the last year) I wish I could run away from myself but where would I go? I envy healthy people who abuse themselves with alcohol and cigarettes and bad food choices and appear healthy as an ox on the outside. I wonder why I cannot be one of them when I try to take such good care of myself and my body still continues to attack itself.

I guess those of us with chronic cuffiitis will probably be on rectal meds indefinitely especially is it helps keep us in remission. The thought of dysplasia showing up in my cuff and then being faced with possible pouch removal is something I prefer not to face. Because of that, I will continue to take the meds as prescribed and hope one day down the road I can be relatively pain free and my wish for you is the same.

Lately I keep thinking I will give myself a time frame where if my symptoms and my continual pouch issues do not improve, as well as my mental and physical well being, that it is time to willingly get rid of the pouch. I just hope the people who love me will still be around at that time as I know living with me over the last year has been no picnic.

I had cuffitis and pouchitis together. Horridly. I was going about 40-50 times a day immediately from takedown. Was thrown to the side of the road by my surgeon and left undiagnosed for almost a month until I got back to a GI doc. Cuffitis seemed to tame down with daily canasa suppositories. Bleeding pretty much stopped and decreased going to about 20+times a day. Never bothered me doing rectal meds. If it helped me by reducing bleeding and frequency I just carried on. I had been on rectal meds for 6+ years with UC almost nonstop so it was no big deal. However same as with UC.. the rectal med stuff only dealt with the minor problems. For me the problem was that the pouchitis was far worse. In addition to frequency the pouchitis caused significant pain throughout my entire body - abdominal and joint, enormous fatique, fevers, nausea, malnutrition and more. Eventually - after I got to the real experts at CC- it was discovered my pouch was both too big and had too long of an efferent limb. Basically it had been built wrong and no kind of drugs were going to fix it. Simple as that. If all I had to do was use suppositories several times a day to have a better quality of life... I would have done my yearly scopes and been forever happy with my pouch. Instead, I had mine removed and I'm still recovering from that massive surgery and dealing with some new lifetime complications as a result.

Liz,

I too suffer from the symptoms you describe from pouchitis except my frequency is tolerable (nighttime seems a bit worse than daytime).
The constant fatigue and body/joint pain can be unbearable at times and I often get the sweats out of nowhere. My GI just recommended a pouch decogram (not sure if right term) to see if I have functional problems with my pouch as well. My surgeon told me my pouch should expand to the size of a small football after the adaptation period and I was assuming that is a good size as he was happy with the photos when he looked at them after the test for leaks prior to takedown.

I hope are on the road to feeling better since your surgery and your complications eventually resolve. Thanks for sharing.

Thanks Kjeane & Liz,

I too have the joint problems and sweats but have fibromyalgia and other problems. I can't tell what is causing what anymore but am pretty sure it is all autoimmune relates - as far as the doctors can find.

Liz I am so sorry you had to suffer so much and it had to be horrible if CC didn't do a revision.

kjeane you tell it like it is, I am a crab too but I don't have to deal with many people as my children are grown and living out of state. I wish they were closer. My husband is wonderful and fortunately he doesn't bother me too much but he doesn't expect much either. He's retired and consulting part-time so there's a lot less work to do in our family.

The Mayo doctor, that did my pouch scope, said it is a looking pouch until he got down to the cuff. He said it was a good size and if the cuffitis was not there I should only need to have 4-5 BM's daily at the most. I guess I will wait until something approaching that happens before I try to cut down the Canasa and as Liz said, if I have to do it indefinitely I will.

My other pain has to be adhesion and scar pain as they've tested my small intestines so I am going to keep taking pain medication for it until I can figure out how to end it.

I'm not getting around too well with all of my ailments, fatigue, depression, anxiety etc. I've applied for social security disability and it feels like I've given up by doing that. It was time I needed to due to quarters of credits.

Thanks again, it helps so much to discuss this with everyone here.