This doesn’t sound to me like cuffitis, but it does sound miserable. I’d suggest trying to protect your bottom: zinc oxide after each BM, and rinse instead of wiping, if you can arrange it. It’s hard to know what set it off - maybe the antibiotics changed your stool consistency?

I hope it clears up soon.

Thanks Scott, I think it may have been too much sugar....my weakness! It will be a long time before I do that again. 

Still curious, what are the symptoms of cuffitis?

Cuffitis can mimic pouchitis. Increased frequency is common, and bleeding is much more common in cuffitis than pouchitis.

Thanks Scott!

I’ve had a sore bottom, sometimes bleeding and a high frequency (9-12) since take down and I’m almost 10 months out. At 3 months out, I went back to my CC surgeon who performed a pouchoscopy and ordered a manometry test. Results were some inflammation in the anal transition zone (cuff) which I was told is common and to just watch it. The manometry result put me in pelvic floor therapy for a few sessions. The exercises I can and still do, but the digital “massage” and stretching I couldn’t continue due to the extreme pain. Fast forward to this week. Found a new gastroenterologist at the UVA Digestive Health Center. After reviewing my records and a visual exam, he said I have cuffitis and prescribed Canasa and VSL3-DS. When the pain subsides, he wants me back in therapy for at least 3 sessions of biofeedback. I’ve started the prescriptions and have my fingers crossed. I need progress! 

Hope the Canasa & the VSL3-DS helps. I wish I could use a bit of Canasa but Unfortunately, with my prescription coverage, it would cost me over $400 for a month and I'm not willing to spend that. Hope yours is more reasonable than mine is. I am feeling much better now, except the tuss is still a bit sore but nothing like it was before.  I have been using lots of Calmoseptine. 

Hang in there!

With insurance, 30 tabs of Canasa was going to cost me over $200. I went to the Canasa website, called them about the savings card program, applied and qualified. When I got to CVS, I gave them my card numbers and they re-ran my prescription bypassing my insurance. The new cost? $30! This offer is good for 6 refills. Try it!

Thanks so much, unfortunately, I just went on the site and it does not cover Medicare patients....I swear, the older you get they less they cover. Do ya' think it should be the other way around....grrrrr!!??

Great, I’m 63 and have that to look forward to. 

You can try Cortifoam for cuffitis. Cheaper than Canasa but unfortunately it was on backorder last time I tried to get it refilled. 

Mesalamine enemas are the same medication as Canasa, and might be much less expensive. For now, at least, the suppository is brand-name-only.

Jfill21, I suggest that you should stock up on Canasa if that's what you want to use before you reach 65!!!

jeane posted:

You can try Cortifoam for cuffitis. Cheaper than Canasa but unfortunately it was on backorder last time I tried to get it refilled. 

My GI said the foam is good, but can “miss” the cuff and end up in the pouch whereas the suppository is placed right where you need it. Wish the Canasa was as easy to administer as the foam though. 

Every time I had bleeding it was cuffitis. I'm not talking about blood that could be from a sore/cracked bottom.

This was not a prescription j-pouchers use but My friend got a $400 Walgreens priced prescription her insurance would not cover, for $40 from COSTCO's mail order pharmacy. It is a name brand with no generic option. The way generic otc imodium is going up in price I'm considering checking out their price for loperimide. My insurance stopped covering it last year.

I doubt very much if Canasa would be so inexpensive from Costco. I'm wondering about the Lomotil though, I paid over $100 for a three months supply. Might go to Costco to check it out. 

I agree about canasa but you never know.  She is taking an imunosuppressant that patients take after receiving transplants.  So it is a drug for a relatively small amount of people. Canasa is high as well. There aren't many of us that use it.

Hi, 

I am wondering if I have  Cuffitis . I have no bleeding at all just a sore butt like almost raw! I too was prescribed Canasa and the foam stuff (forget what its called) but could not use my butt is so raw. Then I was prescribed Tinidazole 250 mg was on 500 hundred but did not agree with me and this also does not agree with me. Now what feeling awful it just came on like going to the bathroom multiple times and the pain its intense! My nurse is not giving me anything else because of having C-diff a while ago! Has anyone ever experienced all these things not working for you and what were you prescribed with?

Thanks 

LJK

My butt is very often raw and irritated. I know the feeling that you're talking about and it is intense. If I leak and if I don't clean myself immediately my butt burns. It's hard just putting my bottom in water it's so sore. Try taking a sitz bath if you can bear the pain, it will releive it. I have also found that keeping something on, like a Calmoseptine or Desitin at ALL times makes it a bit better and is less likely to get sore. Hope this helps. 

Judy

yes i will try, thank you! I have tried Epson salt baths but does not really relieve any pain. My doctor is saying I need biofeedback again and monometry  sorry about the spelling of that word. He is saying i am using my bottom incorrectly and this causes spasms that's where the leakage comes from. I hope this fixes things but just thinking of something going up my butt freakes me out really bad so i'm not sure how this is going to go. 

I had a pouchoscopy 10/31 with all this pain and the doctor told my husband wow LJK was moving a lot during the procedure even though he put me under. That's how much pain I am in!  Actually i had to cancel appointment today because of it and have appointment in the morning I may havve to cancel too. Why is this going on other than what my doctor told me?  it's so painful!!

I wrote a while back that my symptoms are similar and I’ve had the manometry and scope. Diagnosis? My pain and spot bleeding are from pelvic floor dysfunction. I’ve been in therapy about 6 sessions now and I “get it.” The biofeedback software shows you how your muscles are working with —or against—when emptying your pouch. I’m seeing improvement but it’s a slow process. Lots of breathing and stretching exercises but worth it when that awful pain lessens. Are you aware of how much you are currently straining? During my worst days, I used to let that spasm strain push and push—all because I thought I’d feel relief at the end. However relief would never come, just pain that could last for days with inflammation, leakage, urgency and other symptoms that are similar to cuffitis. If not cuffitis, it’s probably pelvic floor dysfunction.

I don't know if this will help or not but I had pelvic floor therapy due to UTI infections. They tested my bladder several ways and I wasn't completely emptying it. The retention of the urine helped it hang around too long which led to infections.

I found out that do to clinching so often for so many years of UC and having the j-pouch that my muscles were over compensating. I learned how to relax the pelvic floor in order to completely empty my bladder. This was where the pelvic floor therapy worked. 

Since this was after my j-pouch was removed I can't say the therapy helped with my failed j-pouch's performance. I'd always assumed that pelvic floor therapy helped to strengthen the pelvic floor muscles. Therefore learning how to relax my pelvic floor was the opposite of that. Straining might therefore be a problem and relaxing might help empty.  

Te Marie, my therapist said my sphincters were over developed. I told her I thought it was from all the clenching I did trying to hold back mucus prior to takedown (I did lots of walking and got pretty good at holding—too good I guess). The therapist agreed that’s why I’m probably having pelvic floor issues.

JFILL21,

Sounds like the same thing. We've overdeveloped trying to compensate for avoiding accidents.  I'd thought pelvic floor problems were for underdeveloped muscles before this.  I hope the therapy works for you.

So far so good. Definitely not for the timid however. It’s amazing what we will do to get well. Or better.

well had to cancel appointment for monametry. There is something that really bothers me though. Initially, I was supposed to get this revised, already met with the surgeon and he said before revising he wanted another scope of the pouch before moving forward. Has anyone ever seen images of their own pouch? I just happened to be at my PCP for an appointment and asked about the images and he showed me , my j-pouch goes straight down. I addressed this to my gastrointestinal and said that over time this happens. what? I am not a doctor but a lot of things have been going on that don't make sense to me any longer. It's very strange after a scope I had last year I haven't felt right ( I have been very confused although it is getting better but my gastrointestinal sent me to see a neurologist and found brain atrophy. Now why after five years of having this pouch would he refer me there? Something had to have happened that know one is saying. I had an MRI, EKG, Blood work so much I didn't think I would have any blood left, also had a spinal tap, and seen so many others departments in neurology for even more testing. Well, what was found was malnutrition,  malabsortion with vitamin deficiency. but how would he know this?I have never had any problems before.The other strange thing is my gastrointestinal although he has always been extremely against it has put me back on TPN. Anyway back to revise this pouch now he is asking for 11 cycles of biofeedback, monometry, and an abdominal x-ray. My question is why? I really do not have a lot of leakage, and doesn't it make sense to do the x-ray for although its scheduled to do last? What is going on here it just too much to believe but its really true. I was thinking coming here I would be in the best care i have ever experienced but it's been a nightmare that i want to be done with it's consuming my life, prisoner in my own home, this place is maxing out my lifetime insurance, and to add more during the consult with the surgeon it made me feel very uncomfortable my gatrointestinal mentioned me having too much scar tissue and the surgeon never even mentioned a word about it! Now how am I supposed to be comfortable with him doing surgery on me! Please HELP I don't know what to do! I'm thinking a second opinion but my husband is saying it's just the plan he has for you, i'm just not buying it though but the thing is my doctor said don't go to Cleveland you will be mixed up in all sorts of chaos. Looking back he was so right! My thinking it's the best hospital in the world how can this happen. Well it certainly did! Unless it's all me and I need physcological testing because this place is making me crazy! I have waisted another 5 years of my life at this place! The doctor in Akron said and this place said colitis with a bad thyroid in which they also took out at this place now  the other day he changed his mind to Cr.

Help I don't know how to clean this mess all up!!!!

LJK, I'm sorry you are going through all of this.  I had the manometry, spelling is wrong, test and it was not a big deal. They inserted fluids and something else that I can't remember but it was a quick test and not as gross as many other I've had. 

I went to the Mayo Clinic. My GI sent me to neurology too. I was having many migraines and at Mayo's they send you to different departments if they think it would help. They did an MRI of my brain too. The good news for me was they found nothing other than having migraines and they changed my medications replacing an antidepressant with another that got rid of migraines, on the most part.  

He also got me into the fibromyalgia clinic there. That was a big help.

I am not familiar with CC but think they and Mayo are the best places to go.  It sounds like they found problems, other than the j-pouch it's self. I'd ask them what all of the test results have to do with your health and what do the results mean in the short and long term.  It sounds like you are in j-pouch hell.  I've been there but never had the other problems you have.  I sounds like your poor body is under attack. Does malnutrition have something to do with every thing?  I would think they would want to get this and other things cared for before surgery. I'm not a medical professional and think they should explain how all of this is going to make you feel better.

My j-pouch failed.  The imaging didn't show the adhesions as they don't show up on it.  They knew I had them as they were so numerous they were easily felt when they felt my abdomen. Could it be they diagnosed them this way.  That and the pain, which had me on a pretty high dose of hydrocodone.

I have no idea what brain atrophy problem means but could that be playing a part in your understanding about what all is going on? You are obviously is a crisis and your j-pouch is clearly contributing to it.  Can you have another appointment with the doctors?  My husband and I met with my surgeon and GI together.  My husband helped me in understanding what all was going on as I was pretty scared of further surgery and really didn't want them to remove my j-pouch. They agreed that diverting me to a permanent ileostomy and leaving my j-pouch intact versus removing it would be a good move.  I saw the inside of my j-pouch during the scopes and other imaging showed other problems. I don't understand what your j-pouch going straight means as no one ever said I had a problem like that.

Are they now diagnosing you with crohns? What does that mean regarding your j-pouch problems?

Maybe the malnutrition needs to be addressed before they can go forward with the revision surgery. Is that your understanding? Is there anything they can do NOW to address your poor rear end?

If you are uncomfortable and don't understand what all of the test results mean then they should take the time to address your concerns. You need to get an exact understanding of what is going on and what to expect in the future.

I feel the same way. My husband thinks i'm taking things out of content. But, this all happened when I had my scope. if that's possible. the scope I mean. I find it very strange that a gastro doctor would be able to detect that unless he knew something went wrong and wanted me treated as soon as possible.

when I was hospitalized Feb. of 2018 other doctors told me something had to be done  but i was ignored . I understand it goes at but its missing the j shape to collect the stool. there isn't one at all.  Then I met this surgeon after telling him I am done and he didn't even come close to the conversation i had with the gastro doctor. and i am supposed to be comfortable with someone like that doing surgery on me!  Also this surgeon said i need a new scope to see how i can help you, I was ok wiith that. havent heard a  thing from the surgeon! and gastro doctor wants me to do biofeedback, monemetry, and abdominal x-ray that was never even ever dicussed unless its on the discharge paper i'm waiting on from 10/31. dont you think this is strange I wanted this fixed before the end of the year because i have met my  deductable with my insurance!! Not now unless I find someone quickly but who????

Sorry about the spelling errors this happens when i type through the night being so tired but want answers in the worst way!

Mayo Clinic is this in ohio? I need to find someone soon!

Also, I thought that all that testing was when you first had your pouch made? and yes i was just given the diagnosis last visit that i have Crohns. I was diagnosed here with Chrohns got a second opinion here they initially said colitis.

LJK,

The Mayo Clinic has locations in Rochester, MN, somewhere in FL and in the Phoenix, AZ area. Rochester is where I went and the original Clinic is. I think Cleveland Clinic is also in FL and AZ. 

I know what you mean about getting things done before year-end. My j-pouch take down was done the end of December and I left the hospital on 1/1.

It sounds like you need to call the surgeon's office to find out when you will be receiving the information from your 10/31 appointment. 

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