Dr. Remzi

The end of July is a long time to wait, but at least they are reviewing your case soon. This must seem like jumping into a mosh pit and not being able to get out! I'm so sorry you are having so much trouble, especially since you had such high hopes for your k-pouch. Ia have no recommendations for you, since you ahve already sought help from the masters.

I hope that Dr. Shen and associates find some solution to tide you over until you can see Dr. Remzi.

Jan

Wishing you good luck with this Vanessa. Let's hope he's willing to move it higher for you. Remzi(and Fazio) are like colorectal gods. If Remzi can help you, he'll help you. You're definitely going to the right place.

In the meantime, I hope you're on opiates(you can take opiates ok right?) like MS Contin slow release for example. That literally saved my life while I was waiting to get my Jpouch disconnected a couple of years ago now. Also, if you do end up with a bag, it's reassuring that you have a good surgeon do it. You want a good ileo stoma that's for sure. I'm going to start ranting if I don't watch myself so i'll stop now.

I wish you well. You've had too much of the bad, it's time for a share of good right?!!

Ad

I think if the valve is done and moved it will give me relief. Right now gas and stool get trapped around my valve and I have to press to move it through , it moves my bladder and causes a lot of pain in general. Shen thinks that is my main issue. I am just nervous they will open me up and say they can't save anything and will lose it all.

I didn't sign up to live with a perm ileostomy. I guess we shall see. I always jump to worst conclusions before anything is even discussed!


I also need my tubes removed but no OB will touch me so maybe that is something he can assist with or have someone in there to remove my tubes, also going to yank my ovaries since they have cysts.

They definitely like to try to save small bowel when possible, and since you want to make it work still, there has to be a high probability he'll try to move it to keep you BCIR'd(is that a word, well it is now. ).

It's hard not to jump to the worst conclusions when life's crap keeps hitting us from so many angles. But(if you can) try to keep positive about getting it sorted. Definitely see if they can do your tubes while they are at it. It's worth trying to get that happening in one op if it's possible for sure. Only the docs at CC will be able to know for sure what will work.

I'm hopefully getting a KPouch very soon now, but have to accept I could be walking away with a perm ileo. Just to have this butt of mine removed will rock though to be honest.

It's good Shen is working with you too. You(and many others) seem very reassured when working with Shen on their issues.

Ad

Vanessa, definitely pursue the GYN surgery at the same time, especially since you have lots of time to get it planned. I had a tubal ligation done at the time of my j-pouch surgery. They had the GYN surgeon on call in the hospital on my surgical day and just had him paged to the OR when they were ready for him. That way he did not have to hang around during the whole procedure. If I recall correctly, there was a waiting period of a few days between signing the consent and the surgery, because it was voluntary sterilization (I imagine the rules vary by state), so you need to get that figured out in advance. But it was definitely the way to go for me.

Jan

I know you never signed on for an ostomy and hopefully you'll get your BCIR repaired and you can live life pain-free. I also thought that having an ostomy would be WAY less than ideal. But I was surprised - it wasn't. Even after 23 years with a j-pouch, the ostomy allowed me more freedom in certain ways than with a j-pouch. Hopefully you don't have to go that route but know that it could also mean a healthy new life.

Good luck with your surgery. I hope everything goes as you wish.

kathy

Oh I had a tubal ligation and Novasure done when I was 29. My one tube is ready to burst it is the size of a sausage with fluid.

o Remzi doesn't do kpouch/BCIR revisions so I am being sent to Dr. Dietz and http://my.clevelandclinic.org/....aspx?DoctorID=17247 Hopkins was a waste. Just a NP who argued how c.diff is treated then said they are only trauma surgeons so for any pain I now have I need to see a specialist since nothing "looks" wrong. Cat scan shows same **** ovarian cysts and a possible cyst or tube rupture. I am yanking my whole female system out when I have surgery next.

I have heard Dietz isn't that great and has a horrible bedside manner. Girl I met said he told her kpouches were only for people into sports and didn't care for them. yay...

I am a 1st time poster on this site but I have been reading everyone's posts. I have read many of your posts. When you stated you had an appt. with Dr Remzi in July for a K pouch Revision. I am a patient of Dr. Shen and was also referred to Dr. Remzi or Dr. Deitz (which ever I preferred so I picked Dr Remzi)for a J Pouch to K Pouch on 3/22/13. Dr. Shen said they were both excellent surgeons and that I couldn't go wrong with either surgeon. After Dr. Shen sent my referral for my appt. with Dr. Remzi on 3/22/13(Friday) Dr. Remzi's secretary called me on 3/25/13(Monday)and told me that Dr. Remzi no longer did anything with K Pouches so I was then referred to Dr. Deitz. So I was very surprised to read that you had an appt. with Dr. Remzi in July for a K Pouch Revision. I had my appointment with Dr. Deitz on 4/04/13. His staff let me know that Dr. Deitz takes as much time with each patient as they need and for me not to worry about having enough time with him. Dr. Deitz and his entire staff are extremely kind and he has a great bedside manner. He spent about 1 hour and 30 minutes with me and explained everything to me then answered all of my questions. I asked him if he has any prerequisites that would qualify or disqualify me for a K Pouch? He said that the only real issue that can disqualify a person for a K Pouch were people with excessive abdominal body fat and that when you have a K Pouch if you gain an excessive amount of weight it can cause your valve to slip do to increased abdominal fat. He also said that K Pouches are a great option for many patients. I also know of several people that have had their K Pouch surgery by Dr. Deitz and are very happy with their results. I had another appt. with Dr. Deitz on the 4/17/13 for my surgery clearance, when I met with him again he was great and once again spent a lot of time with me. He relieved me of all of my concerns and has assured me all of my special requests and accommodations will be implemented by the hospital staff, my medical team and by himself. My K Pouch surgery is scheduled for May 10th. I hope this helps ease your worries and/or concerns. It seems like you have been through so much stay strong and best wishes.

Kindest Regards,
Jennie

Colonic Inertia, Motility Disorder, Auto Immune, Fibroid's, Bowel Obstructions, Septic Shock, Gastroparesis, PFD, UC, Pouch Prolapse, Severe Chronic Sacral & Coccyx Pain
Total Colectomy with Ileorectal Anastomosis 3/07, Hysterectomy(Uterus Only) 9/07, Ileostomy 10/08, J Pouch with new Ileostomy 3/09, Ileostomy Closure 8/09, Cholecystectomy(Gallbladder) 10/10, Total Hystorectomy(Overies Left Intact) 5/11, K Pouch 5/13

Hell I was 190 pounds and 5'3 when I had my continent ileo done! I have a super flat stomach though so I guess they didn't think it was an issue.

As of right now I am doing fairly ok so it is a consult. I might return to pain management and try to skip surgery if I continue doing good.

I am seeing Colorectal, OB and Pain Management (Dr. Cheng, one of the best in the US) so will see what the over all plan is.

Everyone carries there weight differently and so I totally understand about having a flat stomach. I just was repeating was he told me. I am also seeing Dr. Cheng and have been under his care here for the past 3 months and will be here for at least 3 more months but depending on my back pain it could be longer. I have been living in a hotel. I have severe sacral and coccyx pain ever since my Hysterectomy in 07 but it was not too bad then. When I had my Ileostomy it went away but after I had my J Pouch I have had complete and my Ileostomy closed turned into completely debilitating pain. I have had worked with multiple Pain Specialist in AZ and nothing they did helped. They finally wanted me to have a spinal cord stimulator implanted and I did the trial and did not want that put inside me. I was sick of doctors just putting me on the strongest narcotics and muscle relaxers available and they just kept raising the dose too the point I became resistant to pain medication. So I took myself off almost everything and I am taking the least amount possible living in HEll and bed ridden most always. That is why I came back to CC because no one could figure out what was wrong. I got my Ileostomy and then my J Pouch here. It fixed one problem for awhile and my surgeon told me they did not know how long my J Pouch would last but was hopeful it would have lasted longer than it did. Dr. Cheng has been the 1st Pain Specialist that has been able to help reduce my pain. I was so sick of all the doctor in AZ just doping me up and not being able to figure out what was wrong. I was spending more time in the hospital than out in AZ and have been thru so much and so many other medical issues then listed. CC is the only place that I have ever had true success that is why I am considering moving here because it is the only place that has been able to help me and don't like living so far from here. I am also seeing OB/GYN Dr. Thacker (She is the Director of the Women's Health Department and is also one of the best in the country). Plus I also am a patient in Endocrinology and seeing Dr.Kashyap for other issues as well. I have an Out Patient Procedure with Dr. Cheng this tomorrow the 26th. It sounds like you have been going through the similar hardships but for different reasons. If you don't mind me asking why are you seeing Dr.Cheng and has he been helpful for you? Plus are you staying here as well? It is not easy to cope especially when you feel like you are being hit with "bullets" coming for all different areas. It is like what else can go wrong???? If I can be of help or support in anyway please let me know. I would be more than happy to. I have never posted or been apart of any support forums and I must say that it is very comforting to know that I am not alone. Stay strong and I truly hope everything works out for you.

Kindest Regards,
Jennie

Colonic Inertia, Motility Disorder, Auto Immune, Fibroid's, Bowel Obstructions, Septic Shock, Adrenal Suppression, Gastroparesis, PFD, UC, Pouch Prolapse, Severe Chronic Sacral & Coccyx Pain
Total Colectomy with Ileorectal Anastomosis 3/07, Hysterectomy(Uterus Only) 9/07, Ileostomy 10/08, J Pouch with new Ileostomy 3/09, Ileostomy Closure 8/09, Cholecystectomy(Gallbladder) 10/10, Total Hystorectomy(Overies Left Intact) 5/11, K Pouch 5/13

We should meet up if you want! I can PM you my cell number. I have a whole day on the 8th of May at CC. I have Interstitial cystitis (bladder condition) due to nerve damage from so many abdominal surgeries. I have been to PM before for that issue and my rib/pouch pain and had needles put in to kill the nerves around the spinal chord. It cut my pain down about 30% but I never returned, then moved out of Texas where I was getting treated.

Shen recommended Cheng. I know someone with IC (she has a urostomy bag now with bladder removal) and said Cheng was horrible for bladder issues so I guess I will see what his plan is, never been to him. As far as I know I am there for a day unless he can do something to help me I will stay another day or 2.

I usually go to priceline,com and book a 2 star hotel downtown,I like Cleveland and usually that will get me in the Comfort Inn for 55 bucks a night. If I have to stay longer we might stay an hour outside of city at a friend's house to save money since this disease is making be damn near broke! I thought about looking for a job in the area and moving lol!

Yes that sounds good PM me your #. I have an appt. at CC on May 8th as well. It is with my Endocrinologist, Dr Kayshap.

I am familiar with IC. I was tested for it in 2011 by Dr. Hibner at St Joseph Hospital in Phoenix, AZ. He is a Pelvic Pain Specialist and patients come from all over the US and other Countries to see him. From what I understand he is extremely successful at treating IC. If you are unable to get the help you need, you may want to consider checking him out. I went to him for help with my sacral & coccxy pain and low abdominal pain. He performed my Total Hysterectomy removed adhesion's and cleaned everything up. After my surgery all of my Low abdominal pain was gone. I must say that it takes awhile to get an appt. with him because he is so sought after.

Dr.Cheng has been the only PM doctor to help me with my sacral & coccyx pain. His approach with me has been to perform procedures that he believes will help relieve my pain and is using the process of elimination, combination and/or repetition from the outcome of my OP Procedure. I am having my 3rd OP Procedure with him this Friday the 26th. I have no knowledge on his expertise treating IC pain. My experience with him has been great as well as with the entire staff at the PM center.

I will look for your PM so we can speak and hook up.

Kindest Regards,
Jennie

Colonic Inertia, Motility Disorder, Auto Immune, Fibroid's, Bowel Obstructions, Septic Shock, Adrenal Suppression, Gastroparesis, PFD, UC, Pouch Prolapse, Severe Chronic Sacral & Coccyx Pain

Total Colectomy with Ileorectal Anastomosis 3/07, Hysterectomy(Uterus Only) 9/07, Ileostomy 10/08, J Pouch with new Ileostomy 3/09, Ileostomy Closure 8/09, Cholecystectomy(Gallbladder) 10/10, Total Hystorectomy(Overies Left Intact) 5/11, K Pouch 5/13

Josh

I wasn't sure if you are aware of this but Dr. Remzi does not work with K Pouches at all anymore. Dr. Deitz is now the Vice Chairman of Colorectal Surgery and Dr. Remzi is the Dept. Chairman. Dr. Deitz is the top surgeon at CC for K Pouches now. They both are excellent surgeons as you said. They just specialize in different procedures. The CC's main website needs to update what doctors perform or revise K Pouches/Continent Ileostomies. Dr. Remzi and Dr. Church do not but are listed on there as one of their specialties. Dr Deitz is now the only surgeon for them as I understand other than a fellow that is listed.

Kindest Regards,
Jennie

Colonic Inertia, Motility Disorder, Auto Immune, Fibroid's, Bowel Obstructions, Septic Shock, Adrenal Suppression, Gastroparesis, PFD, UC, Pouch Prolapse, Severe Chronic Sacral & Coccyx Pain

Total Colectomy with Ileorectal Anastomosis 3/07, Hysterectomy(Uterus Only) 9/07, Ileostomy 10/08, J Pouch with new Ileostomy 3/09, Ileostomy Closure 8/09, Cholecystectomy(Gallbladder) 10/10, Total Hystorectomy(Overies Left Intact) 5/11, K Pouch 5/13

I am worried about this info. Daughter had J-pouch at Hopkins 19 yrs ago - recently been diagnosed with j-pouch cancer at DC hospital - they also recommended 2nd opinion because they were not sure what to call it with no colon. She has apptmnt with CC which is 8 hours away - Since she is in so much pain she will no doubt go to where she originally had the surgery. If she had not had pain a few weeks ago, and in hospital a week for infection, she would have never known she had cancer. She was told it was going to be chemo.pill with radiation - but that to her is the last thing so at this point she is going where they would do surgery and within an hour. I note that someone said something negative about Hopkins - don't want to load her with any more - she had a cancer screen about 19 months ago at CC - things were fine.

Why are you worried about this post?