I think a couple of months is enough to see an improvement. Insist on an appointment or phone call directly with Dr. Shen. Are you even sure that his nurse is passing on your concerns to Dr. Shen? Email him directly if you are getting the brush off. Sometimes the staff in doctors' offices are a little too over protective, thinking patients are being nervous Nellies. Maybe you need something oral in addition to the Canasa, like Pentasa, prednisone or Entocort. Maybe even biologics, but too soon for that I think. You might even have some pouchitis going on now too, so maybe a course of antibiotics are in order.  The main point is that things can change and the nurse may not be taking that into consideration.

 

Sometimes Dr. Shen does steroid injections. Worst case scenario is pouch advancement or mucosectomy surgery. But, again, too soon to be thinking in that direction.

 

Jan

 

 

Thank you so much for the info and advice Jan,

 

I just wrote a new email and CC'd Dr. Shen. I am starting to think that I should just schedule an appointment to get some face time and stress the seriousness of this. I've never had a scope for this either. After looking at my calendar, it has actually been over three months now. Dr. Shen's nurse told me that I need to be patient and that she didn't want to try other medications because I am relatively young and unlike Canasa, I my body can "get used to" other treatments and they may be less effective in the future. I'm not sure I fully buy that, though. I don't think I should have to forgo helpful treatments and suffer for months on end in order to "save" them for the future.

 

I just passed the bar and have been working as a new lawyer for almost three months and have been sick every day and it continues to get worse. This makes doing my job even more difficult than it already is and has definitely impacted my performance/attitude. I wonder if doctors factor these things in when they tell us to "watch and wait". All I know is that the Canasa has had zero effect in three months of use and I am at my wits end.

Kevin-

Are there any reasons not to schedule a visit?

It's just hard to miss work since I'm new. I just scheduled an appointment with Dr. Shen's nurse for next Wednesday. I wish I could see Dr. Shen, but he was booked until Mid-Nov. Unfortunately, his nurse seems to be much more cautious/conservative and unwilling to try treatments than he is. Maybe I can ask if she can consult with him. I had an appointment with her a month and a half ago because my cuffitis was getting worse and she told me to just keep taking the Canasa and basically just said to watch what I'm eating. I left feeling quite frustrated that I was just going to continue on a treatment that wasn't working. Lo and behold, it continued to not work and here I am now, three months later much worse off. I'm not sure why there is such hesitation to try anything new, considering the Canasa has done nothing (and is very expensive under my insurance). Doesn't seem to make sense to me. How long can I stay sick until we change course?

You are correct in assuming that providers do not take into consideration how your symptoms impact your life; unless, of course, you communicate it to them. Many of us tend to be more complacent, not wanting to be "that patient." I am that way too, and try to wait and see if things resolve. By the time I am being vocal, they say, "Why didn't you say it was THIS bad?" Well, we really do not have much of a reference point. Anything is better than what led up to the colectomy, and we don't want to be complaining about every little thing.

 

So, you just have to say that this is impacting your ability to work and live your life, and you need some relief. Otherwise, they just figure you are just asking for reassurance and are coping just fine.

 

Oh, and I do not buy the line about you are young and do not want to use other treatments too soon, because you might build a tolerance to them. The flip side is that you are young and do not want to live out your long life being miserable!

 

Jan

The worst part is the general frustration of doing the same thing every day and continuing to get worse. It is the same feeling I had pre J-pouch when I had colitis. You would think that we would want to get on top of this cuffitis and not let it get out of control. If it continues to get worse, I would think that some kind of corrective action is needed. I will be MUCH more vocal during this appointment. I am not taking off work and driving 4 hours one way to Cleveland to be told to "watch my sugar intake."

I'd send an email to Dr. Shen directly first, to see if he has any suggestions to try before your appointment, assuming there will be a wait to be seen. He may be willing to try antibiotics for a week or two to see if they turn things around. Then you'll have more to talk about when you see him. Hey, with any luck, you won't need to drivevout there!

 

Good luck! I do understand your impatience. Sone things take time, but this sounds like it needs attention.

 

Jan

I emailed Dr. Shen and his nurse this morning and unfortunately neither responded back. I forgot to mention that I also tried a week of flagyl about a month and a half ago. It seemed to help temporarily, but then the symptoms came back. Maybe there is another antiboiotic I could try if we decide to go that route. I got C. diff (which I am now cured of) a while back so I am weary of cipro. I don't think it's C. diff either because I don't have a watery stool and my # of bowel movements has not increased.

Jan, do they ever do oral meds for cuffitis that doesn't respond to suppositories?  If it's essentially IBD of the cuff, what about a burst of oral steroids?  Other PO meds?  Just curious. I didn't google anything, just asking. 

Not sure Rachel, but for UC, studies show that oral + topical mesalamine works better than oral alone. Cuffitis is different. Since the entire tissue can be reached with the topical, oral mesalamine may be of little value (unless you are considering small bowel inflammation). Prednisone or Entocort would probably be the more likely next step. 

 

That said, if the Flagyl helped before, maybe a longer course is what is needed now. I definitely would try that before Cipro, with the C. diff history. Or at least combine the two. 

 

Jan

Dr. Shen emailed me back and said that we may try Preparation H suppositories twice a day for the weekends in addition to the Canasa. I've never heard of Preparation H treating cuffitis. It still seems like a rather conservative approach, considering I've been in pretty bad shape for 3 months now. Maybe I should be more forward at my appointment? Fortunately, I was able to get an appointment on Tues with Dr. Shen's nurse while he will be in the office so he said he would see me as well.

I had my appointment with Dr. Shen's PA today. Unfortunately, I did not see Dr. Shen, despite being told to change my appointment today so I could see him. I was told to stay on the Canasa and they did a manometry test and scheduled a pouch with scope with Dr. Shen. His first available apt was not until November unfortunately. I was told that after they get the manometry results and do a scope we will know better on how to proceed. It's kind of weird that I have been treated for cuffits for 3 months and they have not done a scope to even confirm what it was. Dr. Shen's PA said that the manometry and scope will be able to show if: a) I have symptoms but no cuff inflammation, which apparently can happen, b) I have symptoms and cuff inflammation, or c) I have pain in my ilium from issues with straining/not emptying properly (which the manometry will show). Apparently my future course of treatment will vary depending on which category I'm in.

 

The one thing that was frustrating was Dr. Shen's PA was pretty adamant on not trying anything else besides the Canasa, such as prednisone, antibiotics, biologics, oral pentasa, etc or any other type of treatment. All she said was that if my bleeding gets worse we'll have to add the Anucort suppositories back like I did for a few weeks in the past. At least I have some tests scheduled that will hopefully give more answers because I left feeling like we're just continuing on the same treatment for now.

 

One thing that was also kind of weird was that she mentioned that if the Canasa ends up not working, my next treatment may be hyperbaric treatments like somebody mentioned in a past post Dr. Shen is using for pouchitis. I don't mind trying new treatments and am happy that he looks into them, but it seems like they are forgoing even trying other potential options by taking the stance of Canasa only, and if that doesn't work then hyperbaric treatments.

I am wondering who Dr. Shen's nurse is and why a nurse is practicing medicine. Is it a PA  I hope- Gida? She has been very well trained and is very good. 

Yes, his PA Gida. I edited the post; I wrote that wrong. I'm running on little sleep and 8 hours in the car so my brain is a little foggy right now. I agree she is very knowledgable and very good, but nothing beats face time with Dr. Shen. When I take off work and drive 4 hours up there though sometimes I leave feeling confused on exactly what we are doing. I think I'm going to start bringing a notebook to nail down exactly what is discussed.

Hmmm, my GI can tell if I have active cuffitis with a digital rectal exam, noting that the cuff will feel more or less bumpy depending on the level of inflammation. 

 

Hopefully, the manometry will provide enough info to treat before November!

 

I sure would like to hear more regarding the data on the hyperbaric...

 

Jan

We can be sure Dr. Shen is collecting data on the hyperbaric treatments. The time and money involved in hyperbaric therapy will make it hard for it to become mainstream for chronic conditions, unless it induces some sort of remission.

This hyperbaric treatment... Is he pushing for it to just keep trying it on people?  I'd want to step up to other meds/treatments first before trying something no one else is doing. Not saying it won't help, but it's kind of a stab in the dark at the moment, am I right?

Dr. Shen/the Clinic does indeed experiment with patients.  While I felt OK with trying what was offered to me (doxy injections for fistula), it was expensive and didn't work.  If I did anything experimental at Cleveland again, I would get more information first on the details of how this experiment (hyperbaric treatment) is expected to work, has it worked, how long was the treatment, how long would the effects last, $$, etc.,  AND, as others have noted, I would exhaust all other proven (?) methods of treatment, first.

 

A few years back, he had me on canasa 2/day and anucort suppositories 2/day for quite awhile until my cuffitis settled.  I'm not sure I understand why they wouldn't try the same here.   I'm just thinking out loud here, but could he have some new info. on the effectiveness/safety of anucort suppositories used in conjunction with Canasa - long term or otherwise?  (Hope not, I still take both alternately).

 

Kevin, forget the notebook!  I've found it way too difficult to hold a conversation with him and take decent notes at the same time.  Instead, when you do get face time with Dr. Shen, take a small recorder.  He has no problem being recorded (just let him know first).    You can transcribe it when you have time and have the conversation notes on paper to refer to when needed.

I'm not opposed to trying experimental treatments in addition to proven courses of treatment, but I will not continue to suffer and likely pay a lot of money just to be a guinea pig. I am only taking Canasa 1/day and am not taking Anucort anymore. This seems like a rather conservative approach. It's kind of frustrating that they are not at least trying other treatments at this point, but maybe their data has shown that long-term Canasa use alone is sufficient. Maybe I just need to be more patient. After 3 months it's hard to continue being patient, though. I'm a new lawyer and it's making my job difficult at times.

Another suggestion is to bring a family member or friend to hear and remember what was said. Docs can talk pretty fast sometimes, and when you are anxious it can all go 'poof!'

 

I agree that experimental treatment is fine and dandy, but if your insurance does not cover treatment considered experimental and they are not offering it as part of a study (no cost), then I'd want to know EVERYTHING it entails. 

 

It does sound like you need face time to fully understand the treatment approach, and for THEM to understand how much this is impacting your life. Sometimes they assume you have all the time in the world. You can't expect perfection, but you should be able to support yourself after a reasonable amount of time.

 

Jan

In my early days of my pouch i had cuffitis and mild pouchitis and he had me on Entocort for several months. Once it all calmed down i was off of it. It stayed good until of course my sinus and leaks started happening