1-2cm of rectal tissue, I do.
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Yes, I do. Can you have a pouch and not still have the rectal cuff?
@msh98991 posted:Yes, I do. Can you have a pouch and not still have the rectal cuff?
Yeah, typically older docs do that procedure- its not very common. I have the rectal cuff too. I hear that not having the rectal cuff typically has more problems. But there are pros and cons in everything.
I have one and I have nothing but problems. I’m sick of it. I have had nothing but cuffitis. But the biggest complaint I have is the urge to push. It is so painful. It makes my lower part of my back just throb and then shots down my legs. I wish there was a solution. I do put in a Canasa suppository every night. It works just not all the time. I do watch how much sugar I eat. So I have taken out as much as I can. I only drink water. Does anyone else have any issues?
Anyways I am alive. Thank goodness.
Wow-sounds like an issue I’m currently having. I was treated for pouchitis but for the first time ever during my belt of pouchitis I had sciatica like pain and somehow appear to of pulled a muscle in my back from straining so hard to go to the bathroom. Could I have had cuffitis?
I am not sure. All I know is that I have the urge to push. I sit on the toilet almost in tears. It’s a very throbbing feeling. Sometimes I bleed. It’s so uncomfortable. I don’t ever have a fever but with pouchitis I sometimes do and sometimes I don’t. I have had pouchitis also, so it can be very similar. I wish I could help you more. How long are you had this going on? I have had it since 2018.
@grandmaof1 posted:I have one and I have nothing but problems. I’m sick of it. I have had nothing but cuffitis. But the biggest complaint I have is the urge to push. It is so painful. It makes my lower part of my back just throb and then shots down my legs. I wish there was a solution. I do put in a Canasa suppository every night. It works just not all the time. I do watch how much sugar I eat. So I have taken out as much as I can. I only drink water. Does anyone else have any issues?
Anyways I am alive. Thank goodness.
An ileostomy bag would cure that problem, do you want a bag again?
@msh98991 posted:Wow-sounds like an issue I’m currently having. I was treated for pouchitis but for the first time ever during my belt of pouchitis I had sciatica like pain and somehow appear to of pulled a muscle in my back from straining so hard to go to the bathroom. Could I have had cuffitis?
Do you want a permanent ileostomy? That would cure it
I’m not sure what I want to do. I have my scope in July. So we will see what the doctor thinks. Someday I do want the bag back.
I’ve only had this for a couple of days now, it started during what I thought was a bout of pouchitis. It’s not a chronic issue but I’ll certainly keep an eye on it because it never occurred to me it was anything other than pouchitis. I just finished a round of Flagyl a few days ago and I’ve been fine although my back does still hurt. Coincidentally I pulled my back out a couple weeks ago so I don’t know which came first. Have you tried a change of diet, by chance. The Specific Carbohydrate Diet (SCD) for example. It may help you. It sounds so painful. The STD did help me when I had active colitis. I found it difficult to do and very restrictive at the time and ended up losing my colon. In retrospect, I wish I’d given it more time because it did provide relief.
I have a cuff as well... I think that was the norm back in '88. Fingers crossed, haven't had any problems yet... That I know of!
I looked into the diet. It’s hard for me to have fruit. It tends to give me the runs and burns my butt. I have tried nuts and that tears up my stomach as well and even more pain to push. We raise our own beef and we have our own brown eggs. So I do try and eat healthy that way. I think the sweets are what is killing me the most with cuffitis. It’s such a game trying to figure out what medicines to take and what to eat everyday. I do have great days but then there are other days I am down and out from exhaustion. I think that is what I hate the worse besides cuffitis is being so tired all the time.
Any other suggestions would be great.
Still have my cuff. Have had problems from time to time. I think that's the nature of the beast. Feeling pretty good these days.
Aimee
Couple things- my cuff was an issue, always inflamed. Had it removed though surgeon was certainly not eager to do so. Did reduce inflammation and frequency but I’m still not doing great. Always a risk with additional surgeries after the 2 or 3 to get j-pouch up and running that it may not work and risk is may wake up with Ileostomy. That’s biggest reason I haven’t gone back to get prolapse fixed or have pouch redo. That said, for the burn I highly recommend ILEX paste, order online. Lots! It sticks to skin and protects until you Vaseline it off. I could not continue without it! Even though it hurts when skin is really raw, I often get complete relief and total improvement overnight. I also use little to plug things up when I’m struggling with leakage. Mostly do that at night or when I have daytime leakage or burn. It has really enabled me to continue. Diet helps- did well with FODMAP for awhile and probiotics but nothing helped enough. I do eat very mild during flare ups.
good luck!
HI, Grandmaof1. Nuts, seeds, and food that is insoluble will cause urgency, the need to push, and will hurt coming out because it doesn't break down. Your pouch ends up holding this and trying to push it out. I know my pouch is not happy when I have something that is insoluable, or too fibrous. Try eating soluble foods to soften and form stools of gel-like consistency. Oatmeal -- have the slow cooking type, not the instant microwave SUGARY kinds. The packaged instant oatmeals are pure processed sugar. Slice half a banana into your cooked oatmeal to help create the right stool consistency. Soluble vegetables with your beef can help move things along smoothly. Roasted or grilled zucchini, cooked carrots, spinach? I have the smallest bit of cuff left. My surgeon said it's almost non existent but I have managed well.
I've struggled with cuffitis for much of my pouch's existence. Usually it's just inflamed but sometimes it also gets ulcers. Humira has helped a lot with that.
@bowelsofhell posted:I've struggled with cuffitis for much of my pouch's existence. Usually it's just inflamed but sometimes it also gets ulcers. Humira has helped a lot with that.
Might want to try Remicade, that works better I hear
@Former Member posted:Might want to try Remicade, that works better I hear
My doc's preference for the pouchitis/cuffitis combo is Entyvio or Humira, but Remicade's the likeliest replacement if the Humira stops working. It's been a relief during Covid-19 lockdown to have something easily done solo, at home.