Bad news, good news....maybe

I am so sorry for your news. I understand your concern and worry. I am working on getting an appointment with Dr. Shen soon also for some issues I am having and I know it is not a good feeling having to go there to begin with. I wish you the best with the procedure.

Were you having issues before all of your tests? Maybe the scans are better at spotting fistulas than a scope is? It is good news he was able to locate them and clamp them off for you. Try and stay positive that you now have a treatment plan.

Yes, I was having air/drainage coming from my bladder, several UTIs & frequent bowel obstructions. The fistulas are bladder, vaginal, & to the abdomen. He knows surgery will be major & he says Dr. Remzi could opt for repair or pouch redo. Hoping these clamps will work so that I can hold off until summer. My husband & I are both teachers (although I took this school year off to deal with all of this) & he really shouldn't be out of the classroom the amount of time I would need for him to be with me. We are here from Alaska so it's not like he can go to work & then be with me during hospitalization & recovery. Praying things will get better for us!
Thanks for your response & I hope all goes well for you!

I am wishing you the best for your health resolution. Again, I am sorry to hear your news. I have had my share of ongoing issues since surgery and I am hoping to eventually report good news for others who are going through this procedure. You are in very good hands as they aim to save your pouch however than can at Cleveland.

Praying for good news/good news and hope that those clamps work!
Sharon

akteacher from what I have read throughout these posts you are in good hands. I pray and hope for a better tomorrow for you!
jeane - thinking of you as well!
Sharon you are amazing for everything that you have gone through!
There is light at the end of our dark tunnel!
Roberta

The procedure Dr. Shen did yesterday seems to be working. I had a little bit of air/drainage this morning & then none the rest of the day. I was to email Dr. Shen today to let him know how things were going & he was going to let me know what plan they had decided on however, when I emailed Dr. Shen I got a return email saying he would be out of the office until Nov. 5th! I am so upset! No one has contacted me about what I need to do or if I need to come talk to Dr. Remzi.....I have no idea what the next step is! It is so unbelievable that this is happening! Both dr.s were so nice & seemed to really care about my anxieties & now I just don't know! Dr. Remzi left Wed. & won't be back until Friday. I am here from Alaska & only have 3 weeks to get everything done & this week was for tests, etc. now I have 2 weeks left to have the surgery & recover before I have to return to Alaska. If I have surgery & have complications I don't know what I will do. My husband is a teacher & being out of the classroom for 3 weeks was stretching it & it will bad if I end up having to stay longer! I am just stressing & that can't be good! We are going to go to the clinic tomorrow & hope his nurse or PA will be able to she'd some light on this mess! Ugh!!!

aka.. I am sorry to hear about everything that is going on with you. I can so relate to your mini breakdown in the preop. All of this stuff gets so stressful when everything was long ago supposed to be solved but we each keep having to go through more and more and more.

And as for your dilemas about Shen and Remzi not being available... it is so very common. I just posted the other day about the problems with that. They are all so nice and kind and wonderful when they are there with you, but then when you try to followup or get an answer or even to find out results from a test.. it is nearly impossible. I had an EUA surgery over five weeks ago and I have been trying to speak to someone about the findings since then. Finally today, I got a call from a nurse. Of course she had no answers and just told me to wait until I see remzi again before my next EUA surgery. Yes like you said.. if you have surgery and complications.... its just horrid dealing with CC post surgery once you are home. And it gets worse if more departments get involved - like infectious disease, urology, gynecology, etc.. No one communicates with each other and everyone blames each other. Meanwhile the patient is left at home suffering.

You probably know that Dr. Remzi's main right hand nurse is Vicki. She used to be fairly accesible, but recently, she too, seems to be too busy to bother with followups in a timely manner. If I was you, I would go to that front desk tomorrow and demand to see her. But if you do get to see her,.. you must lay it on the line with her and make sure she does what you need to get done. Make sure she is communicating to Remzi and that he and Shen are the ones deciding your care, not her. There is so much "fluff" there if you know what I mean.

Also try emailing Dr. Shen late at night. It works sometimes. And then just keep resending the same email until you get a response. Also call his office and leave messages... over and over and over.

And the last suggestion I have is to use your husband. For some reason I seem to get responses better when I cc my husband on an email and they see his name on it, or when he comes to an appt. Did Remzi give you his cell number? If so, have your husband call it, not you.

OK... and I'll send you my bill if any of my tricks work for you!!! Seriously, I have been dealing with this horrid lack of communication at CC for over 2.5 years now. And we, as the complicated and chronic cases, have to continue to deal with it because they are the most knowledgable and experienced doctors out there. They are our hope to get well someday.

good luck, PM me if you need any more help. I am even happy to speak with you on the phone. Just PM me.

Thanks Liz for all your suggestions!! My husband is with me & I will let him see what he can get done. You are so right. This is the best place for those of us with chronic cases & I understand that these dr.'s have a huge practice but they have to be able to handle it better than they are! When I was here 6 years ago Dr. Fazio was there through out my surgery& hopitalization & follow up care. The only time he wasn't there was for the reversal but his nurse, Gina, called to let me know he was not going to be able to do the reversal when he had planned & gave me the option of waiting a few more weeks for him to be back or let another dr. Do it as scheduled. The point is, Dr. Fazio was there & cared enough to follow up with me. I like Dr. Remzi & Shen & know they are the best of the best but unless I live here in Cleveland it is going to cost me a fortune to have to fly back & forth to meet their schedules. I guess I have to "pay the piper" to get the best care or risk not so good dr.'s. I even asked my husband how he'd feel about moving to Clevleand (lol) just to be around when they are! I wish you good health & good luck with these dr's!

Yhis information about cc really bothers me as I'm in CT and have an appointment there next month. These are the same issues I deal withyay my current surgeons office suppose in very high demand due to his surgical expertise and walks on water and is always overbooked due to his demand. The typical office visit is two hours. When he sees you you get his 100% undivided attention but after the visit just try and get a nurse's response or follow up. I never even request to speak directly with him as it would be impossible and he never returns direct emails. I always email the nurse to forward to him.
I think what happens with problematic patients is you become like the fly they wish they could swat away. After seeing how upset I was at my last office visit ( surgeon and nurse)and for the fees he charges with no insurance acceptance,you should expect much better treatment snd follow up to your additional surgical questions. I know I xm not an urgent cancer case, but this is a huge surgery that is being recommended and when a nurse cannot respond with surgical opening dates or a fee estimate and your surgeon does not respond to a few more questions you havec after you leave the office, the message to me becomes very clear. Quite possibly they prefer you now go elsewhere especislly when you have requested release of your medical records and have informed them you are getting a sso and your surgeon responds with he fully supports you on this effort.

I am sorry I did not see the original thread. My surgeon also travels extensively I always make sure to plan my surgery knowing he is planning on being in town and seeung oatients at the hospital for the entire week. I think this was obnoxious that Shen did not inform you he would be out during the time you are there especially considering your travel there and that you just had a procedure done by him. I would definitely address this with both his secretary or nurse and him when you see him next. Best of luck.

i have a sinus tract that Shen has done the "kneedle/knife" procedure on to try and fix this issue twice. 1st 2 did not work and have a 3rd scheduled in a few weeks, but they are very expensive and does not even know if they will work. He also said if he cant fix it that he would suggest surgery again and possibly lose the pouch. I had an MRI and other test since him finding this sinus, and consulted with my surgeon at CC and he is confident from this MRI that this is same area i had my leak and abcess from the original surgery. He said if its not bothering me that he would not put me through major surgery again. He feels that it was there since original surgery, and Shen just found it since all my horrible cuffitis inflammation had finally subsided. Shen says no, so i have confliction between my doctors. I think as of right now I am going to side with my surgeon and take a wait and see approach. the sinus goes from my cuff to a closed end into my tailbone cavity. so its not draining anywhere. He says it could obviously get infected and abcess and that would be an issue. Signs would be high fevers and horrible lower back pain. He put me on Tindamax as well, but im not taking it.We will see.

I did email Dr. Shen & did receive an answer late last night. He went over the findings from the pouchoscopy again & did send the same email to Dr. Remzi. He did clarify where the fistulas are....1 is to my abdominal wall, 1 is at the tip of the jpouch & 1 to the vagina (not bladder as I stated above). I also emailed Dr. Remzi's nurse practitioner, Vicki, & she responded as well! She set up an appointment for me to see Dr. Remzi on Monday. I guess I panicked before & am pretty happy with the quick responses/action I got from my emails. Whew! Thanks everyone for your responses & I wish you all well!