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I have been having rectal bleeding on and off for over a week or more even with cuffitis treatments. The odd thing is I am off antibiotics and my pouch is fine. I have no frequency,urgency, leakage, pouch pain etc.

My only symptoms are, as usual, rectal pain when emptying my pouch and now bleeding (more than just a little bit). I also can tell that the ulcer or inflammation is at the very end of my anal canal (not on the exterior but still close to the anal opening).

For the life of me I cannot tell if this is a fissure or cuffitis. I definitely have discomfort when passing stool and it does linger after and as usual my stricture is rearing it's ugly head, but the bleeding lately is really bothering me. If it is a fissure nifedipine is not helping it heal.

To make matters worse, tomorrow I have to have endometrial biopsy with viewing in the uterus (without anesthesia) due to my thickened endometrial stripe that everyone except my gyno seems to be concerned about.

I am going to restart cipro today to see if this helps with the bleeding and try and contact my GI again. My last conversation with Dr.Shen was to try cortifoam (which I have), and then kenolog injections and balloon dilation for the stricture. He then indicated he wanted to scope me in the future even though my current GI can do the injections and dilation Frowner

My current surgeon is against balloon dilation and pretty much has wiped me off the board as every time I contact a nurse there I get zero response from them.
He recommended pouch advancement surgery in October and I informed him I was having a SSO at CC and since then has pretty much been non-responsive. He does not take insurance and I cannot even get the nurse to provide a quote for the surgery nor respond with any questions I have regarding my current treatment's impact on the proposed surgery. I take this as NOT being a very good sign and really feel if I need advancement surgery I probably will end up at CC by default if for any other reason.

I spoke with my surgeon's nurse on Friday and she indicated to email all the information to her (as I always do) and they would meet with my surgeon on Monday (only in office one day now) and of course...still no response which is so typical of his office. I honestly believe they are trying to toss me as I am not a jpouch success case.

I am befuddled at this and was wondering if anyone could offer insight as to what their next steps would be. Would you opt for surgery at CC even though it is 9 hours away? After having my original jpouch surgery canceled twice with my current surgeon and knowing all the post op issues I have had, I am just concerned about having another surgery with the response there even though he is highly regarded and I really hope my post op issues are disease related and not surgery related. No test thus far points to any surgical related post op issues.

I know surgeons are busy people, but when you continually get no response, I think the message is they are hoping you go elsewhere. It is very discouraging.

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Jan DollarJan DollarModerator, RN, retired
The bleeding sounds fissure related to me. I always have some urgency when my cuffitis is active and bleeding with cuffitis is a sign of active/acute cuffitis.

Nifedipine is supposed to help heal a fissure, but it can take quite a while. I am sure the stricture does not help. Nifedipine works by increasing blood flow to the area, so, if there is chronic ischemia that does not respond to the nifedipine, you'd think that paints a darker picture. But, it could all be due to that darn stricture, because it can reduce blood flow too.

As to your surgeon woes, I cannot imagine continuing to try to maintain a relationship with a provider that does not seem interested in you or your case. Whether or not it is because he feels threatened or hurt by your desire to try all non surgical approaches before pouch advancement, the result is the same, with you twisting in the wind. If it were me, I'd stick with CC if surgery is necessary, for three reasons. One, you are an established patient there now, so you'd have integrated care between Dr. Shen and the surgical staff. They talk to each other and the medical records are all in one place. Two, they take insurance, so you don't have to screw around with the insurance billing (another big deal in my mind). Three, you really cannot go to any better place than CC for difficult post op complications, whether or not they are disease or surgery related. Their combined brain trust rivals no other!

No matter how great a surgeon may be, you cannot make him operate on you, and why would you want to? Why is he so opposed to balloon dilation? Sure, it does not work all the time. Nothing does. Even with their inflated egos, any good surgeon should welcome a second opinion, unless their opinion would not stand up to it. Even insurance companies (who are known for denying everything) accept the notion of second opinions. Personally, I would not want someone operating on me who did not want me as a patient.

Jan Smiler
Jan Dollar
L liz11Member
jeane.. save your money and use it on travel expenses and lodging for your family at CC.

Jan made a good point of one of the biggest reasons to go to CC. Other than they are the best of the best in jpouches...you cannot go to any other place that is better for difficult post op complications- even when they are not directly colorectal or gastro issues. My month long hospital stay with huge and numerous complications and my ongoing complications from my jpouch excision surgery really has shown me that CCs knowledge outside of colorectal is top notch. I either have or am now being cared for by infectious disease, urology, gynecology, urogynecology, rheumatology, dermatology, interventional radialogy, nutrition (TPN) people, pain management... and probably more! I have been more than impressed by almost every single doctor in every single field that I have or am receiving care in. You can never predict what may happen - especially in a complicated surgery. So it is best to go where other true experts are readily available.

Obviously in addition.. if your local surgeon isn't responding to you know... hands down he should be thrown out of the picture.

oh and last thing - in regards to kenalog injections... I don't see why you wouldn't give it a try. I have had a couple up into my sinus tract and unhealed perianal wound during EUAs in the last 10months. In fact, just had EUA#7 with Dr. Remzi yesterday for I&D of the wound and kenalog was injected yesterday. The only detriment for me from the kenalog is that it does cause some systemic steroid effects for about one week post injection- like face flushing, heat, and sleep problems... But it is worth it if it can fix something. Also they say most people don't get any systemic reactions from it.
good luck
L
J jeaneMember
Thank you Liz. I will report back after I talk with my GI this evening on next steps.

I have pretty much given up hope on my surgeon and will end up at CC if I need surgery ( most likely a very good choice based upon current surgeon's non-responsiveness). I agree that it is the best place to be. Maybe my surgeon feels the same way and that is why he has pretty much abandoned me since I informed him I was having an SSO there and sent him the results after. He was supposed to follow up with Dr. Remzi and I know it never occurred, just like other things he was supposed to follow up with in the past that also never transpired. It is very frustrating to be dropped because you are a not a success story. He has not been living this nightmare for the last 20 months and I am sure I am long removed from his mind.

Any surgeon with integrity would direct you to a more experienced surgeon based upon your problems if they felt they could not give you the the best care possible and someone else was more qualified to do so. Also, I feel if they were that knowledgeable on jpouches, they would direct you to a GI who could possibly help you before suggesting more surgery that could result in more complications and possible pouch loss.
J
Jan DollarJan DollarModerator, RN, retired
I would tend to think that this is less about you being a "failure" because this surgeon has a lot of experience dealing with the salvage of failed pouches. Many surgeons, if not most, tend to shy away from complex post op problems, probably due to lack of experience. Not the case in this instance. I would tend to think that this is more about that second opinion, and the possibility that you might favor another opinion over his.

You'd think any highly skilled surgeon that is considered one of the top surgeons in his field would not be threatened by a second opinion, but welcome it. But, it seems there are divas in every field. I guess he has so many patients that demand his attention that he does not need to accept insurance, and it also means he does not need to put up with patients that might question him. Who'd ever think obtaining the best care would be so political?

In my mind, his lack of response makes your decision easier. Good luck with the injections!

Jan Smiler
Jan Dollar
L liz11Member
Guess I will consider myself lucky that my surgeon threw me out of his office at my first post-op appointment after takedown. I was deathly ill, going 50+ times a day (same as when I had been discharged from the hospital 2weeks earlier), severely underweight and anemic, crying, and my husband pleading with him to help me. He simply said..."you are anatomically correct"... just deal with it... and go back to your gi if things are that bad. Even his nurse begged him to help me and told him to give me a prescription for bentyl. He wouldn't even help me get into my gi any quicker. He truly threw me out of his office. And of course, he is/was in the list of top docs, trained at CC, on CCFA local board, and all that wonderful glowing stuff.
L
Jan DollarJan DollarModerator, RN, retired
In surgeons' defense, their focus is surgery, not medical management, so I can understand a surgeon opting not to treat a medical problem. However, this does not mean they should not facilitate you getting the care you need! Of course, it seems that you wound up being a surgical patient after all, but only after failing medical options.

This is why I am in favor of the coordinated clinic, where all specialties work in concert for you. My Kaiser system is similar to CC, with everything on one campus, all records digitized, everything integrated. It is more cost effective too, less duplication of tests.

Jan Smiler
Jan Dollar

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