The jpouch has pretty much eliminated the S and W pouch...a lot less functional problems with a J. Dr. Varma is good, don't know how many surgeries she's done but someone will probably answer that for you. I imagine Varma does both as sometimes patients can't have a staple, so surgeons have to be prepared for a hand-sew.

I live in CA and never considered traveling further than Los Angeles. Had my surgery by an LA surgeon who had done over 2000 pouches,and that was back in 2001. I was referred to him by my GI, I live about 100 miles north of LA. I've had pouchtis once in 11 years.

Sue

I think for the most accurate answer you would want to make a consultation with Dr Varma and ask her yourself. Surgeons are constantly updating their preferences and techniques for surgery, so you'd get the best answer from her. W and S pouches aren't very common these days, apparently they have more complications of pouch structural failure then that of the J pouch.

Hi Suebear,

Who is the name of your surgeon?

I live in South SF so Dr. Varma seems to be the best choice for me at this moment, but I was at one point willing to travel all the way to Mayo in Minnesota, just to get the best j pouch surgeon in the US.

I still am willing to travel for the best possible surgeon.

I looked up some articles on pubmed and it seems that W pouch patients had lower frequency per day than J pouches, does anyone here have a w pouch?

I am not trying to put you off, but it is definately not always easy surgery. It is major and the recovery is a long road. It is a personal choice, but there are risks with surgery as well as the drugs. Saying that I don't regret having it done, after being out of all drug options and 33 years of UC. Happy now.
Good luck!

My surgeon was Dr. Robert Beart who is now at Glendale Memorial Hospital, in Glendale, CA. I think he's done more jpouches than any other surgeon west of the Mississippi.

Sue

A word of advice from my gastroenterologist 10+ years ago was to have the surgery close to home for follow up purposes. I have never regretted his advice. I believe Dr. Varna is very highly regarded. Feel free to consult several prior to deciding on one.

I went with the Cleveland Clinic as I live in Ohio. My GI referred me directly to Dr. Remzi so there wasn't much decision making involved on my end. I read his bio online, read about some "fixes" he had done for people on this board, assumed that he probably had the surgical chops,and heard he had a good bedside manner. I actually had surgery scheduled before I consulted (I did consult before the actual surgery though). It is a 7 hour round trip each time I go, but it's definitely worth that time.

Maybe you shouldn't think about surgeons in terms of having the "best" surgeon" as I don't know if you can clearly cross compare. Maybe you can look at it in terms of "tiers" or maybe "in the top 10" or something. Maybe "one of the best west of the Mississippi." "Highly regarded" also sounds good.

If you can find someone with an awesome reputation within driving distance, that is probably good. Family can be nearby during your hospital stay and you can drive back for short notice appointments. I personally have a follow-up next week. But last week I had to suddenly drive to Cleveland for a stoma problem that kept getting worse. I had met with local ostomy nurses, but the sore got so large that they had me drive to the surgeon's office to see if I needed something more. It turns out I will need follow-up appointments every two weeks for awhile (in Cleveland). I've also been to the ER at the surgeon's office instructions. At the time, I was worried what they were going to do if I had a complication. Would I be able to drive up? Would another surgeon without experience in jpouch intricacies potentially mess something up? I didn't have anything wrong, but I can't imagine having to worry about flying for hours with some of these issues. It's just nice having your surgeon "nearby."

Ah, I just did a search on "Varma" and there seem to be alot of positive things said about him/her on this forum. Go up to the "magnifying glass"/find button and type in "Varma." You should see posts that contain "Varma."

But also don't be afraid to go meet with a couple/several surgeons.

Dr. Beart has an awesome reputation. but yeah, being close to home is important for follow up. i cannot stress enough how important followup is in post-recovery, as there are many things that can go wrong. Dr. Varma seems to have a good reputation too. You should talk to some of her patients.

Picking a doc close to home of course does NOT mean to pick Dr. Joe Schmoe across the street, but picking a surgeon who has done at least 100's of pouches, and is at least comfortable for your or family members to drive to (that could mean a 3 hour radius, for example). I know Cleveland or Mayo may be ideal, especially when you wanna get the j-pouch done right the first time. if you can afford it, great. but the next 2-3 months after j-pouch also may require close, proper doctor attention. flying back and forth to cleveland after this major surgery may not be ideal. there are excellent surgeons on the west coast/ Calif. that are as good as the Cleveland docs, and would probably be working at the Cleveland Clinic if they lived in Ohio! In fact, Dr. Beart came from Mayo.

Dr. Varma did my j pouch surgery in early July and she is very good. She probably
does the most j pouch surgeries in the Northern California area. She has a great team
of staff who are very knowledgeable and j pouches are their specialty.

Thanks FQ to saying what I forgot to say! You don't want "Joe Schmoe" just because he is close, but excellence close by might be a better situation than excellence across the country.

I had my surgery with Tracey Hull at the Cleveland Clinic in 2003-4 because I was within driving distance to that hospital.

I now live in SF and met with Dr. Varma in case I needed anything surgical. I really like her.

Also, her husband, Dr. Terdiman is a GI doc at UCSF's faculty practice and he is who I saw for follow-up, and I *really* liked him and his PA.

All of that said, you do want easy access to your surgeon, or a surgeon who can help you if there are any post-surgical issues.

Thank you all for replying, it means a lot to me.

How did you guys deal with the fear of pouchitis, incontinence and >10 frequency per day?

I mean, if any UC'r knew that they would only have to go 4-5 times a day, have 1 case of pouchitis every 10 years, and be fully continent throughout the day an night, wouldnt everyone be doing them?

I guess I am answering my own question, risk vs reward... but that's different for everyone

I was looking at predictors of j pouch complications but the only thing that scares me is reading about people who have to go 15-30 times a day after getting a jpouch.

I've never had pouch its and I go 4-5 times per day and very, VERY rarely at night.

I had my second and third surgeries at UCSF - 22 years ago.

kathy

I just had my surgery with Doctor Varma a week ago! She is very good, and so far everything with surgery and recovery has gone perfectly. My incisions are very clean and should heal very nicely with minimal scarring, and every doctor and nurse who has seen my stoma says it's beautiful and perfectly formed (though I wouldn't know the difference, LOL). I had a total proctocolectomy with ileoanal reservoir construction and a temporary diverting loop ileostomy on October 4th. Take-down scheduled for early January.

I asked her at my consult how many she's done, and she hadn't actually been keeping track. She said she does two or three a week and was trying to add up how long she's been doing it... so I never got a straight answer, but just know that she's one of the best in the nation. If you want to read the Q & A I typed up from my consult with her (I had a lot of questions), feel free to email me, and I'll send it to you. My email is ronnie.lee.753@gmail.

Wow. 2 or 3 a week?? No wonder she can't keep track!

Most of the time that I've seen her she's still been wearing her
surgical scrubs. She spends a lot of time in the OR.

Seven weeks now post op from my takedown surgery on Aug 28th. I'm back to
work again full time. I've been out surfing for the past two weeks
regularly. I'm going on a four day camping trip up to the Sierras Thursday
next week.

A lot of it is what you make of it...

I suppose I'm one of those people that scares you. I go about 10 times per day and wake up about four or five times during the night on a good night. I rarely get pouchitis, however my diet is restricted (I can't eat salad or many veggies). That being said I LOVE my J pouch. I would do it again in a second. I rarely ever get the pain I experienced with UC, I never worry about finding a bathroom and I am medication free. Even though I get up often during the night I never feel exhausted or run down- which I attribute to a good diet and exercise (something my UC stopped me from doing). I love hiking, boating, fishing and vacationing all which I can still do even with my j pouch. No matter what you choose to do, surround yourself with a support system and remember to keep a positive outlook.

Just to add another perspective here, after being diagnosed with rectal cancer, and MYH Associated Polyposis, I went to Stanford, where Dr. Natalie Kirilcuk did my surgery, which included proctocolectomy (removal of colon and rectum) in March and construction of a J-Pouch. I had an ileostomy from March till late July when I returnedby a second, takedown operation. JPouch is working fine but I am coping with butt burn/periodic diarrhea as my body gradually adjusts. Dr. Kirilcuk is quite young but is quite skilled with use of the robot, which led to a much quicker recovery, fewer scars and she has excellent bedside manner and really cares about her patients. I also highly recommend Dr. Ron Chang in Radiology and Dr. Fisher the chief oncologist in the Stanford Advanced Medicine Center I strongly recommend Stanford to you.

kathy, what kind of surgery did you have?

Surgery one, emergency colectomy. Surgery two, formation of j-pouch. Surgery three, takedown.

kathy

Fightuc2 -- I'm so sorry you're going through this. You've already received great advice. Do your research on all options and surgeons. Once you make your decision, have faith. Please don't listen to anyone who tell's you NOT to do any one thing (other than a medical professional). You will make the best decision for you. I've had my pouch for 16 years and am grateful every day that I have my life back (I had UC for 15 years). Hang in there and keep coming here for advice. It's a wonderful place. Hugs!

Thank you all for your support, it means a great deal to me.

In the end, the only vote that counts is my own.. right?

I guess my situation is, should I wait it out and hope that a new treatment becomes available allowing me to keep my colon, or should I take the jump and have my colon removed and move on?

I guess I am lucky that I have the option to go either way, as I am very responsive to 5ASAs and have not had to use anything more powerful.

However I am slightly worried about the aspartame in Apriso, but that's because my UC was isotretinoin (Accutane) induced and I can't make the same mistake again.

Either stay with my mild UC and live with the constipation and chronic mild pain and the side effects of my current medication (Apriso, Canasa, sfRowasa), or get a jpouch and it's potential side effects (pouchitis, >10 frequency)?

You are absolutely correct, the only opinion/decision that really matters is your own, since that is the one that you have to live with.

That said, if it were me (and I was there at one point), I would wait on colectomy until you feel it is your #1 best option. Go in with doubts, and you are bound to be second guessing yourself for all eternity. But, I am not sure that there has even been a surgeon recommending this surgery for you.

While I am unsure why you think that medical options are more dangerous than surgery (other than your issues with accutane, which are not the same), sometimes that is the case, sometimes not. Plus, having a colectomy is in no way any guarantee that you will not needs those other drugs in the future. So, unless you are steroid dependent, having serious side effects from your current medications, or showing dysplasia or cancer on your biopsies, I do not see a pressing need. It has been 17 years since my surgery (after nearly 24 years of UC before surgery) and I am on many medications, mostly for my enteropathic arthritis (Simponi, Azulfidine, Vicodin, Robaxin), and unrelated medical issues. These are things that cropped up years after my colectomy.

Aspartame is not similar to Accutane, so I am not sure what your concern is there.

I feel pretty sure that Dr. Varma would not even recommend colectomy unless it was warranted, and it does not seem like you are there yet. But, it would not hurt to have a consult with her to find out what the criteria would be, if only to set your mind at ease in regard to what a good plan would be for your future. Any surgeon who would do this surgery just because you requested it, I probably would run from that office. That is not a good standard of practice.

The j-pouch is a great option for those who actually need a total proctocolectomy, but not a completely elective procedure. I probably held out too long, but if I had opted for surgery at your stage, I would have had an end ileostomy, because the j-pouch was not a common practice at that time. Something really great may come along for you. Lots of new research in the pipeline...

Jan

hi guys, this is a question and a comment.

how does only really know the number of successful j-pouch surgeries? it seems impossible to get the answer from the doctor's office. my son finally decide on a highly recommended surgeon and today someone who had an experience with hi told him is not all that he claims and his patients have a high pouch-failure rate. this whole process is simply mind
boggling and scary. any suggestions? thanks!

That sort of assessment can sometimes be misleading and I will tell you why. Success rates are variable based on the surgeon and the surgical center where it is performed. But, having a perfect record does not necessarily mean that surgeon is better than all the rest. It could mean that he is very choosy about who he agrees to do surgery on. Some surgeons put a lot of value in a spotless morbidity record with their surgeries.

However, a truly wonderful and highly skilled surgeon may not have such a great record because he takes on patients who have more risks, like comorbidities such as diabetes, heart disease, etc., but still need the same care. Or maybe they take on other messes from other surgeons, so those results may not be so great. Perhaps he is willing to do the j-pouch in patients with indeterminate UC or Crohn's colitis, knowing that their failure risk is higher, but the patients are highly motivated and willing to accept that risk.

And naturally, there will always be some patients who do not do well and feel that it is directly the fault of the surgeon. Could be, but also sometimes stuff just happens, even to the best of surgeons.

So, my advice would be for your son to ask his surgeon about his complication rate and how it compares to his peers. A good surgeon should be able to explain any perceived problems. You can only micro manage this so much!

Jan

Hi Fightuc2!I had my surgery 5 years ago. I do not regret my decision as it saved my life. I was out of other options. That being said, my doctor gave me some very sound advice- this surgery is not a cure as you are trading one set of problems for another set with the hope that the new set of problems are easier to manage than the old set of problems. I do not want to discourage you from this surgery but the beginning is not easy. You are young and want to measure all aspects of this surgery including future family plans. I wish you all of the best in your decisions.

Success rates are further complicated by the tendency of folks with a poor result to go elsewhere. The surgeon should be able to tell you exactly how many J-pouches he/she has constructed in the past year or three, and that's useful information, too.

Surgery is always a trade-off, and always includes risk. I'm very glad I made the trade, but the decision came with anxiety.

hi jan, thanks for your detailed reply, you have
explained things very well and provided a new
viewpoint that hadn't occurred to me. it helps
in somewhat simplifying this illusive search.

Yes, and it is not just the surgeon, but the entire team that matters. The surgeon can be an absolute god, but if the hospital is a pig sty, then all sorts of nastiness can happen. As mentioned in other posts, after care matters a lot too. Will the surgeon pass you off to residents as soon as he is done, or does he follow you closely? My surgeon was no super star, but I definitely developed a rapport with him immediately and he paid attention to detail. He called me at home and followed me personally. When I developed a complication a month post op, the surgeon on-call knew to contact him for consultation, even though he was on vacation in Portugal at the time. This was no fancy private practice either, but a big HMO group, Kaiser.

But bottom line, there is nothing you can do to guarantee a positive outcome. One little hint I do have is to ask the nurses in the office who they would go to if they needed surgery. That is usually very telling (they never want to go to the jerks or guys who make a lot of mistakes).

Jan

I live in AZ and had my jpouch done at the Mayo here. My surgeon (Dr. Kelly) pioneered the surgery at the Mayo in Minnesota.

He was wonderful. I had my surgery the first month the new Mayo hospital was open. I was very happy with my surgeon. He has since retired.

If I had to do it over again (knowing Kelly wasn't there) I would not go to the Mayo in AZ. Their hospital isn't well run and I had terrible post op follow up in regards to my ostomy bag etc.

I ended up at another hospital for their Ostomy Nurse to instruct me.

My dad went through the Mayo for esophageal cancer. Again, his surgeon was fantastic but his care and treatment while in the hospital was atrocious and bordering on malpractice. Their staff is not well trained (AZ is basically living off of the Minnesota name) and their hospitalists are really poor. From speaking with many in my community, the Mayo hospital doesn't have a good reputation in the local medical community. From what I've seen, they are able to recruit good surgeons. Their hospital staff on the other hand is overworked and very poorly trained.

I don't want to put it all on the board but would be willing to fill anyone in if they desired via private messaging.

I agree you want to get a great surgeon but you also need to have a hospital staff where they take good care of you.

My father was a physician and was so disappointed about his lack of care. I am not in the medical field and I knew that things were very poorly run.

Their clinic is a zoo. I can't use any other word for it. Waits of 3 plus hours to see doctors isn't unusual. It is a bureaucratic mess.

quote:

Let me tell you, since I am an RN who lives in the Glendale area and is very familiar with Dr. Beart, that he has been having some less than optimal outcomes lately due to his age. (It's probably time for the good Dr. to retire)

Ummmm..... errrr..... you might want to google the term "libel" and edit your statement of fact into an opinion.