Hi!... We exchanged some posts on healingwell. Also post this in the general disscussion forum to maximize the the number of people who will see it. Sometimes people dont scroll down past that forum. I'm in NJ so i can't help with a recommendation in your area. Good luck!

Thanks, will do. But I will travel for the surgery - I'm almost certain I am not going to stay in South Carolina for the surgery. I've had pretty crappy care so far at my local hospital.

Many people travel to the Cleveland Clinic. I'm sure you will get some good referrals on here.

My husband had his JPouch (1 step) done at MUSC in Charleston, SC. His surgeon was Dr. David Adams. We've been nothing but pleased with the care received at MUSC. (2 major abdominal surgeries--colon removed and removal of polyps in duodenum) He has seen other doctors for other problems --always felt the best possible care was given. I would not have stayed locally for this surgery. When DH was first diagnosed, the nurse at my school said "go down to MUSC or up to Duke". You may be near one of those areas if you are in SC. Going to MUSC again Monday to see new Dr. in urology b/c of prostate issues now...
take care

Definetly Dr Vernon at Newton Wellesley Hospital in Newton,Ma. Performed my surgery 25 years ago today. I also lost 18 inches of my small intestine but, have had great results. He also trained under the person who invented the J-pouch.

thank you, sjb! I am in Spartanburg so both MUSC and Duke would certainly be feasible.

wish i had looked harder; i'm having all kinds of probs now because i stayed home and went to a private hospital. go academic for best results. duke and musc are great options. best of luck!

Thank you! I appreciate your honesty. My parents seem to be scared to have me go "away" for the surgery in case there are complications but I'm finding (and trying to explain to them) that being close to the hospital is not as important as getting an expert surgeon.

i live in cal and if i had to do it again i would have gone to cleveland clinic..they are the best all around for jpouch anything!i am someone that had problems after my surgery and i do not think the surgeon caused problem but his bedside manners were nothing short of horrible..i spent two miserable years with this guy...at cleveland they deal with lots of jpouch problems..so i might have been helped better and sooner than i was (2 years down the road)but more importantly it would have been good if my surgeon were easy to talk to or less full of himself..

whatever you doPICK A DOCTOR THAT IS KNOWN FOR GOOD FOLLOW UP AND HAS GOOD BEDSIDE MANNERS..even with good results there are some tough days ahead in healing and you need that support..

sorry your dr. overlooked that important fact about remicade..bummer..it is something many know..but you were in a tough place one way or the other..i can understand your not wanting to cause any harm to your child with meds so you may have gone that route anyway..tough call..now you just have to go forward..keep in mind 85 per cent of jpouchers are happy with their results..but if it works and it most likely will your life will be much better without the problems you have now and the need for the deadly steroids(reason i had to go for jpouch) only thing between me and a terrible flair was steroids..

check out drs in your state mentioned and than maybe cleveland clinic..

rebe

Hi, Dr. John Marks in PA, out of Lankenau Hospital. My wife researched him before we decided and found out many people such as pro athletes come to see him for color rectal surgery.

He is very busy and took us 3 months to get into surgery but he is worth it.

Good luck !

Tim

Dr. Lavery, Dr. Fazio at Cleveland Clinic. They have an amazing Digestive Disease Center. Dr. Lavery did my surgery. Also before surgery, you could try Dr. Bo Shen. He is an amazing gastroenterologist. There are more options beyond remicaid. Good luck!

Katherine Morgan at MUSC did mine. I had MANY complications and prolonged hospitalizations. She was calm, cool and so very skilled. She built me a fabulous pouch.

Karen

Dr. Remzi and Dr. Lavery @ CC. They are world class surgeons and they have great bedside manner. Nurses are outstanding and the hospital is top notch.

Thank you!

Karen,
would you feel comfortable sharing your complications? Were they from the surgery itself or something else? How long did it take for you to feel "normal"?

Started out with toxic mega-colon in Georgetown (SC not DC). Transfered to MUSC, with a perforated bowel and then an abdominal abcess 5 days post colectomy. Came home 2 weeks after abcess surgery, June 10 I think. I had step 2 in November (needed to regain 30 lbs after step 1). Step 2 went so well, amazing pain control and I was home in 6 days. I had difficulty maintaining hydration with loop ostomy, went in on Thanksgiving night and had to get a pic line to maintain hydration and nutrition. (takedown was scheduled for Jan 15) Woke up on Christmas Eve and felt strange,I ached all over and there was an egg size lump on my chest (abcess from pic line), called my emergency number, attending surgeon met me in ER. Dr. Morgan came in Christmas morning about 1:20 am. I received amazing care. Sent me home with new pic line on Jan 3.They checked out my pouch the next week and moved my surgery up one week. Take down was easy on me. My bowels woke up immediately. Started low residue diet on day 2, went home day 4.
My sister and I are from Georgetown and my mom from Camden. Whew, I don't know what I would have done without them. I personally had a good experience at MUSC and I feel like I tested their expertise. I loved the nursing staff. GI surgery is difficult on a good day, when things go wrong, and they often do, those nurses are your saving grace. The care from doctors, cna staff and nursing was consistent and professional. They were all very kind and understanding to my very frightened and stressed mother and sister. I really didn't have any scarey incidents or close calls that were not immediately addressed. I have a medical background so I probably could be even more critical than the average patient. My pouch works so well, it is amazing. It took me a full year to get to the OMG I'm fine point. My first 3 months were miserable. Butt burn, long nights and just worrying if I had made the right choice of a j pouch. I am healthier and more active than my friends with colons.It is a tough decision, go and interview surgeons. I didn't have the luxury or burden of choice since I became ill so quickly and unexpectedly. MUSC has a new beautiful GI hospital, Ashley River Towers. They are going for the big bucks in bariatric surgery. Just makes for fancier, upgraded hospital experience for those of us with broken colons...Good luck.

Karen

Thank you, Karen. It definitely sounds like they took good care of you! Good to know.

Mayo Clinic in Florida. Please PM Chuckus as he has had surgeries there for this and for other problems caused by his FAP. Mayo Clinic is #1 in the country and Cleveland Clinic is #2 but I hear their Cincinnati one is better than it's Florida one.

I am now going to Mayo in Rochester, for cuffitis and IPS. My local surgeon was trained at the Cleveland Clinic and Mayo said he did a great job building my pouch. The doctor doing the scope asked me if I'd had it done there.

So maybe you can find someone close that was trained at either place and has lots of experience. Other than that Mayo in Florida would be my first choice, if I lived where you do.

I definitely recommend Cleveland Clinic. Either Dr. Remzi or Dr. Hall. I received the absolute best care while being there. I had all my surgeries done there. I met and made friends with people from South Carolina, Michigan, Kentucky. It's worth traveling for.

I had my surgery in Charlotte, NC.

Dr. Douglas Rosen with Charlotte Colon Rectal Surgeons.

They were AWESOME! Great Docs, Great Surgeons and I'd glowingly recommend them.

If you want more info, feel free to PM me. Just for what this is worth, I STILL talk to them and their patients to show someone "the other side" and that you CAN make it.

Best Regards.

quote:

Mayo Clinic in Florida. Please PM Chuckus as he has had surgeries there for this and for other problems caused by his FAP. Mayo Clinic is #1 in the country and Cleveland Clinic is #2 but I hear their Cincinnati one is better than it's Florida one.

This is VERY VERY true too.........I can help you get going there if you so desire. They are the best of the best. They have saved my life more than once.

PM me if you want.

I had both my surgeries 1/2 and 3 at Duke. I had Dr. Thacker. She and Dr. Mantye are very good. The Hospital at UNC Chapel Hill does the surgery too.

For people in the Northern/Central California area I have to recommend
Dr. Varma at UCSF. I was so lucky to have found her and it was thanks to
this website. After meeting with two other local surgeons I was so
discouraged that I was ready to just walk away from even trying to have
surgery. She should definitely be on your list to talk to if you need to
have J Pouch surgery done around here.

If NYC is a possibility-Dr. Jeffrey Milsom in NYC at Weil Cornell Medical Center/Colimbia Presbyterian. Wonderful doc and one of the best re: Jpouches. Expensive as all heck but great.

Hello y'all. I don't know if this is necessarily the right way to do this, but I need some advice and came across this particular post. I just signed up and will be posting my introduction a little later on, but have to do this first due to the "urgency".
I am currently in the hospital in a MAJOR flare up and have been since last week Monday (04/28/14).
They are not getting it under control and it feels like they're aiming for a moving target.
I have decided to look into the J-Pouch solution to see if I can get the process of research, interviews, surgery, etc. started.
I live in Mobile, AL and am looking for the closest, yet most experienced/trustworthy facility/surgeon in the area.
Currently I have been suggested to look into Oschner in New Orleans (dr. Whitlow or dr. Margolin?) and University of Alabama Birmingham (dr. Timothy Murray?).
Then I came across these posts and thought I'd ask "Chuckus" about his experience. Did you say you had it done with the Florida Mayo branch? Where are they located and who was your surgeon? Are they recommendable? I mean, Mayo is the leader in this right now, right?
Anyway, if any of you have any other suggestions or can provide positive/negative thoughts about what options I have around the area, please provide these.
I do not mind traveling at all!

Thanks in advance. If you have any questions, do not hesitate to ask me. We can all learn from each other, right?

My surgery was done by Dr. Douglas Rosen @ Charlotte Colon/Rectal Surgeons.......he's a super guy, great Surgeon and KNOWS what he's doing.

He can be reached at
2015 Randolph Road, Suite 201
Charlotte, NC 28207
704-333-1259

I have no issues recommending him, at all. He's taken care of several other people I know as well and I regard him very highly!

It's just a short drive from Spartanburg! If you want more information, send me a Private Message.

quote:

posted May 7, 8:52 PM Hide Post
Hello y'all. I don't know if this is necessarily the right way to do this, but I need some advice and came across this particular post. I just signed up and will be posting my introduction a little later on, but have to do this first due to the "urgency".
I am currently in the hospital in a MAJOR flare up and have been since last week Monday (04/28/14).
They are not getting it under control and it feels like they're aiming for a moving target.
I have decided to look into the J-Pouch solution to see if I can get the process of research, interviews, surgery, etc. started.
I live in Mobile, AL and am looking for the closest, yet most experienced/trustworthy facility/surgeon in the area.
Currently I have been suggested to look into Oschner in New Orleans (dr. Whitlow or dr. Margolin?) and University of Alabama Birmingham (dr. Timothy Murray?).
Then I came across these posts and thought I'd ask "Chuckus" about his experience. Did you say you had it done with the Florida Mayo branch? Where are they located and who was your surgeon? Are they recommendable? I mean, Mayo is the leader in this right now, right?
Anyway, if any of you have any other suggestions or can provide positive/negative thoughts about what options I have around the area, please provide these.
I do not mind traveling at all!

See my post just above...........that's where I had my initial surgery, but, have since had surgery at Mayo Clinic here in Jacksonville. I can most certainly put you in touch with the fine folks there, directly.

As to your question if Mayo is recommendable, that's a BIG YES. They are TOP NOTCH and I've recommended, and spoken to, several patients there who are of the same mindset as me after being there.

Don't hesitate to shoot me a private message. (I'm super busy with work, so it may take me some time to reply....just FYI)

Charlie

Hi Charlie,

I will definitely get in touch with you when I have a chance and get out of this hospital.....

To everyone else,

It looks like I have to update my info, but I'm actually located in Mobile, AL.
So, I want to make sure that I find the right group to do this and don't mind traveling, just not across the country. The closer I can get to home, the better it is.

Thanks all. Eric

Wow, so much has changed for me since I initially posted in 2012. I was so sick, newly allergic to Remicaid, with an idiot for a GI and a brand new baby that did not sleep! Thank you, Chuckus, for the recommendations. I should have thanked you then but I was a little out of it. I am glad to have them on file. It was a very scary time for me, and finding this community and getting people's responses was very comforting. I was burned by a bad GI at the time, and was at a lost what to do. I had the baby blues with my newborn and was in an intense flare that wouldn't get under control. Not long after these posts, I started Humira after a long, intense prednisone round with a new (non-idiotic) GI doctor and went gluten free/mostly organic (not going to lie, I still eat Chick-fil-A) and thank God, I am currently doing great. I do Humira bi-weekly now and take Lialda every day. I know that some people are wary of the long term side effects of Humira, but since I am young(ish) and have a young family if I can avoid surgery and rehabbing from surgery for now, I will. I can eat salads and apples and drink organic coffee every morning again and am able to work out. I can walk around without constant fear after eating or just in general and take road trips only stopping to go "number 1". In short, I am living like a person with a normal colon - far better than I ever was on the Remicaid.
Dutchie, I grew up in Mobile - beautiful city. Hang in there. It seems to be true that it's always the darkest before the dawn. Sending prayers for good health and warm wishes to everyone that was kind enough to answer this thread so long ago and the newest additions.
Best,
Juliet