So I have had cuffitis from day 1 since my surgery. I've had 2 scopes done after being on Canasa which still showed inflammation. So far for the past 2 weeks I have been on Hydrocortisone foam which isn't doing anything! My question is, what will work from there? I can barely eat anything without feeling sick and having to run to the bathroom (literally run) every hour or so. Would Remicade work because it's inflammation?
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When was your surgery? I have chronic cuffitis and do not experience those symptoms. I do get pressure and a lot of anal pain and burning with it (when passing stool) but no increased frequency. I know everyone's symptoms vary, but I would question if you also have pouchitis.
I have been on Canasa for over a year pretty much consistently. I take anucort and cortifoam intermittently as well. My last scope a week ago still showed mild cuffitis and I still bleed on occasion. My GI said I will always have some level of inflammation going on and I am frustrated the meds are not really improving my situation also. If I miss a day, I am in a lot of pain.
Since most of my issues appear to be mechanical
(stricture also,) additional meds will most likely not help me (not sure about you). The only other option I was offered was pouch advancement surgery which I am trying to avoid.
I would opt for any additional med (6 mp, even a trial of remicade), before I would advance to more surgery as with every additional pouch surgery our risks go down for success in keeping the pouch and I really do not feel like dealing with 2 more major surgeries, another 3 month ostomy while healing and possible incontinence when they advance the pouch.
I have been on Canasa for over a year pretty much consistently. I take anucort and cortifoam intermittently as well. My last scope a week ago still showed mild cuffitis and I still bleed on occasion. My GI said I will always have some level of inflammation going on and I am frustrated the meds are not really improving my situation also. If I miss a day, I am in a lot of pain.
Since most of my issues appear to be mechanical
(stricture also,) additional meds will most likely not help me (not sure about you). The only other option I was offered was pouch advancement surgery which I am trying to avoid.
I would opt for any additional med (6 mp, even a trial of remicade), before I would advance to more surgery as with every additional pouch surgery our risks go down for success in keeping the pouch and I really do not feel like dealing with 2 more major surgeries, another 3 month ostomy while healing and possible incontinence when they advance the pouch.
Perhaps a short course of oral prednisone could calm it down, if it's indeed only cuffitis. If there's also pouchitis, antibiotics might help quite quickly (people tend to get results within a day or two if they're responsive to the selected antibiotic). If you're trying to manage this with a surgeon, I recommend you find a GI who's willing to help you manage your pouch.
I have been seeing Dr. Shen for about 6 months now. It's been 1 year since my final surgery. He said that it isn't pouchitis so to not worry about that. If the foam doesn't work in the next week I will be giving him a call. It's frustrating because I was on prednisone for 2 years before my surgery and I do not want to go back on it.
Maybe he can try something else. Thank you!!
Maybe he can try something else. Thank you!!
Please keep us posted. Maybe anucort suppositories are another option. It can take awhile on these to calm the cuff down. I have settled for mild cuffitis if the meds help. I know I will be on them forever or until I have had enough and decide to advance the pouch. I know how frustrating this is. I never had these symptoms with my UC. I have been living this for well over a year and saw Dr Shen also for a second opinion.
Most of the genuinely awful things about prednisone only apply to extended use. A 10-day course is an entirely different thing, though the idea of using it again can resurface lots of very disturbing feelings if you were on it for years.
I am going to ask my GI about this next week as I have been dealing with this issue for way tooo long. I don't understand why they would send you in for more surgery versus trying some other meds that may have worked for UC in the past. I am even willing to try 6 mp if it keeps me off the operating table. Canasa does not really help me. Anucort does, but as soon as I start passing stool several times a day, the pain and burning start up all over again.
Maybe I just don't understand the surgery but why couldn't they have gotten rid of that little piece when they attached the pouch? When I had a colon I tried Imuran, 6mp, and Canasa and none of those worked. I am willing to try Remicade because I have heard a lot of success stories about it.
Jeane, let me know what your doctor says! I to am sick of dealing with this. It feels like UC all over again.
Jeane, let me know what your doctor says! I to am sick of dealing with this. It feels like UC all over again.
I think I have just built up a resistance and tolerance to the constant rectal pain and discomfort ( it is 24/7 pretty much). My pouch function is pretty good. It is rather unpleasant I admit dealing with the rectal pain, especially as I never had any pain rectally with UC. I'm very scared about more surgery so that's why I have been sucking it up. Any other rational person would have thrown in the towel many months ago.
I also have cuffitis. Canassa and Cortifoam really only irritated things, and Prednisone was ineffective as well.
If you haven't tried Remicade, I would encourage you to try it. Many people have had amazing success with it. If that doesn't work, then you may be looking at surgery, as I am.
Best of luck.
If you haven't tried Remicade, I would encourage you to try it. Many people have had amazing success with it. If that doesn't work, then you may be looking at surgery, as I am.
Best of luck.
Nomoremeds- I agree with you that the Cortifoam and the Canasa only irritate it even more. I notice more bleeding and urgency when I use them. I am going to make an appointment with my GI and talk to him. Now when you say surgery, what do they do for it?
Since the cuff is remnant colon, is not cuffitis actually residual colitis?
By definition, one is "cured" of colitis with removal of the colon, but in reality it is not all removed in J-Pouch cases, so....
My doctor put me back on Pentasa based on the idea that cuffitis is actually just colitis restricted to the only remaining portion of the colon - the cuff.
I suppose to a certain extent, it's semantics. However, ASA drugs didn't help me when I had a colon, so I'm thinking they don't do much now.
(Actually, my new GI took me back off Pentasa a little while ago, but you get the idea. If it helped you to some degree when you had a colon, maybe it will help with cuffitis.)
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By definition, one is "cured" of colitis with removal of the colon, but in reality it is not all removed in J-Pouch cases, so....
My doctor put me back on Pentasa based on the idea that cuffitis is actually just colitis restricted to the only remaining portion of the colon - the cuff.
I suppose to a certain extent, it's semantics. However, ASA drugs didn't help me when I had a colon, so I'm thinking they don't do much now.
(Actually, my new GI took me back off Pentasa a little while ago, but you get the idea. If it helped you to some degree when you had a colon, maybe it will help with cuffitis.)
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I]Now when you say surgery, what do they do for it?[/I]
I am not exactly sure, as it largely depends on the nature of your condition. I have a consult at Cleveland Clinic about it but not until November.
From what I understand, they can do a mucosectomy, which involves removing all the infected mucosa. They then "advance" the pouch and sew it back to the anus.
I've uploaded an article (link below) that may be useful in helping to understanding this procedure. Feel free to let me know if you have any questions.
http://rapidshare.com/share/6D...1AF6DAB71B3143DA6741
I am not exactly sure, as it largely depends on the nature of your condition. I have a consult at Cleveland Clinic about it but not until November.
From what I understand, they can do a mucosectomy, which involves removing all the infected mucosa. They then "advance" the pouch and sew it back to the anus.
I've uploaded an article (link below) that may be useful in helping to understanding this procedure. Feel free to let me know if you have any questions.
http://rapidshare.com/share/6D...1AF6DAB71B3143DA6741
Nomoremeds- I don't understand why they don't do this in the first place. I as well go to Cleveland Clinic. My surgeon was Luca Stocci and I see Dr. Shen.
They leave in a little bit of the cuff to have something to attached the pouch to. Doing a mucosectomy increases the likelihood of incontinence, so many surgeons will leave it with the hope that it will not be a problem or can be treated topically.