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J
Hi everyone,

It seems I am exhausting my medical options for my chronic cuffitis and now Dr. Shen is recommending kenolog injections. I cannot find anyone on this site who has had this done and wonder if my GI even does this and I am also concerned about the risks (atrophy being one of them). It seems to me I am just delaying the inevitable here which is either pouch advancement surgery or pouch excision.

Does anyone see any benefit of doing this? Is this so much better than trying biologics to help my condition? I just don't understand why these surgeons/doctors are so opposed to trying a biologic if it spares me from more surgery that could potentially result in my losing my pouch in the long run. After all I have been through I wish I begged for biologics during my UC days as I may not be here now if I did.

I have attached a presentation by Dr. Shen for the treatment options for treating chronic cuffitis. Go down to page 10 (last page) to view it. It seems I am now entering the last leg of treatment and there is no mention of biologics anywhere with his treatment.

I have had numerous pouchoscopies and a recent MRI and Dr. Shen is now recommending repeating these again. I have had more tests/x-rays etc. that I am going to glow from radiation exposure if I have any more of these and do not see the reason for repeating this after having an MRI in October with no remarkable findings.

I am baffled by how you could lose your pouch permanently over a very small section of diseased tissue that NEVER presented like this prior to surgery and the typical medications cannot get it under control.

I am in a situation where I have nothing to lose and I am willing to try anything medically that may help me before agreeing to more risky surgery that may potentially result in more complications and losing my pouch...but kenolog injections??

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suebearsuebearMember
I cannot give you any words of advice, but wanted to comment on one of your final sentences regarding the small section of diseased tissue. I lost my entire colon and rectum due to a spot, about the size of a quarter, in my rectum, that would not respond to any of the UC drugs. After two years of trying, I gave up. So, that being said, I know how troubling and confusing this can be. I hope you can find a resolution that brings you relief.

Sue Big Grin
suebear
Jan DollarJan DollarModerator, RN, retired
I would do it. It gets the steroid exactly to where it needs to be to treat the affected area. Think of it like getting a steroid injection into a joint. You get the benefit without the systemic effects. You may ask, why not just take prednisone or Entocort for a while? Well, say you have a bit of reduced blod flow there, you may not get the prednisone where it needs to go. With Entocort, since it is topical, it would not be in contact long enough to act on the cuff. Perhaps it might be a good maintenance option though. Even topical suppositories or enemas may not be in contact long enough.

Kenalog is long acting and will stay in the tissues longer. Atrophy and skin thinning would be the furthest from my mind, especially since you are so miserable. Those side effects would only be a concern if you had many reeated treatments, and they would not do that.

Biologics may be an option, but they take up to 3 months before a full effect is seen. But, I can tell you, from my own personal experience, that since I started biologic treatment for my arthritis, my GI has said my pouch as never looked better! Plus, I rarely have any cuffitis flares anymore.

Jan Smiler

P.S. I could not see your attached article.
Jan Dollar
J jeaneMember
Thank you Jan for an eye opener. My concern is whether my GI is trained at this procedure as although he has trained under Bo Shen, I am sure this is not a common procedure (cannot find much on it on the internet). Also, when you read the possible side effects it is quite scary, but hell, what other options do I really have?

I emailed my surgeon, Dr. Milsom to inform him of this path to see his take on it. Of course I mentioned to him that I am in a difficult position as the preferred treatment by a GI obviously differs from that of a surgeon.

Dr. Shen indicated you may only get two weeks treatment out of this approach, hopefully longer. I will try and attach the file again as the very last page has his tiered treatment plan for treating chronic cuffitis.

Thank you so much for your opinion on this situation. I will keep the board posted. It was interesting that my GI said not to be bothered by seeing blood as long as it was not too much and not all the time. Sometimes I wonder if the blood is also from the fissure as I have been treating that with nifedipine and it is hard for me to decipher cuffitis symptoms from fissure symptoms at times. All I know is I want to wake up and not be reminded I have ongoing pain and discomfort in my anal area 24/7 that is robbing me of any joy in my life and making me not an easy person to live with these days.

See if you can read this link. When I copy it and paste it the blue hyperlink does not appear. You can copy and paste it in your browser to view if you cannot get to it here. Page 10 is the most important page related to chronic cuffitis treatment.

http://imedexinc.com/ei/confer...205-200%20D_Shen.pdf
J
Jan DollarJan DollarModerator, RN, retired
Thanks for the link. Looks like it is slides from a seminar. The bad news is that the Kenalog injection looks like the last ditch effort before surgical repair, redo, or diversion (ileostomy). The good news is that this seminar was in 2009, so other options may be possible since then (such as the possibility of biologics). However, you need the right diagnosis for insurance to cover biologics such as Humira (like enteropathic arthritis or Crohn's). This is where having a Crohn's diagnosis can be a good thing, because it can open doors for other options.

I agree with your GI that the presence of blood is not super important by itself. It is blood with symptoms or if it is constant that is the real issue. Just like an occasional fever is not something to worry about. And yes, you can bleed from a fissure too. Bleeding is a sign, but not necessarily an ominous one. Plus, with cuffitis, full remission may not be possible, so you shoot for good function and accept an imperfect outcome. This is especially true if you are wanting to avoid more surgery.

Jan Smiler
Jan Dollar
TE MarieTE MarieMember
I would get the injection if only to buy time, hopefully without pain. You have been through the ringer and this your medical problems and options appear to be negative. It's easy to choose from good options but now you are dealing with the lessor of evils. It's impossible to see what the outcomes from the various options will be. So I wish you could get a few pain free weeks to analyze it all.
Take care
TE Marie

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