No idea what was happening post op. Would gave been nice to know what to expect.  Maybe from others who had same.  Think maybe a plan of action would gave been good

Only in hindsight did I realize how little my surgeon did to explain the road ahead. My guess is he thought that he was there to do surgery and the rest would be up to me and others. Fortunately, my local gastro guy is good. And the J Pouch forums are so very useful.

Surgeons are only the mechanics; the rest is up to your treating physician.  My GI gave me lots of good information and I did a ton of research on my own.

Sideshow - You make a good point (and well stated, too). I forgot to mention that I also did a ton of research on my own, but isn't that kind of the norm these days for people who have serious medical issues to deal with. I hope.

I don't think I was given the reality scenario vs the perfect scenario. I don't think my surgeon explained truly how things would change. I kept getting the you'll wish you had done it sooner. I regret everyday having had it done. Although 8 years later I've learned to  cope with it. I'm not sure had I had someone to give me their perspective on this like a fellow poucher I might have not had the surgery. I only found this  group after my surgery.

Actually my Dr  did something wrong with my surgery and it leaked and caused a massive abscess. ..so when my family filed a complaint with the hospital. ..he removed himself from my case and I was actually discharged with no follow up doctor.  So I had absolutely no clue what to do or expect except from the visiting nurse that came and seen me everyday...and he didnt say a whole lot. 

 

SO really even 14 years later i still don't understand what or the why of it...and still searching for that perfect dr who can explain it to me. I'm so lost and frustrated. 

I had a very great surgeon and I only have gratitude for the job he did on me; especially after some of the horror stories I've heard from other patients. I don't think my surgeon or my GI Dr. fully explained what life would be like post operation. I spent years figuring out my situation and becoming more frustrated all the time, especially since I am self employed and changed insurance constantly. I remember asking one Dr. if food played a role in my situation and he said, "there's been no studies linking diet to flare ups". And when I told him how much better I felt after restricting my diet he was like "I've heard that from many patients".  Excuse me? Then why didn't you say that?

 

Anyways, to end this rant; as soon as I owned my situation and stopped relying on medical professionals opinions, I've had a lot more peace of mind. I have come to accept that I will never be 100% like i used to be but I have competed in triathlons, traveled all over the world with my job, and having a j-pouch hasn't made much of a difference at all.

I feel the exact same way Mesa Poucher! To hear you say that validated what I have felt for the last 14 years! Makes me cry! I've always felt I was a guinea pig for my doctor. He just kept telling me "let's do it..you'll love it " but i was never told why i would love it....and I still wonder to this day if i could've controlled it by What I ate and medication. I cant imagine anything being worse than what I go through now. 

There is not always going to be a lot of black and white rules with surgeries like this; everyone is different.  I followed the recommendations provided and also wasn't afraid to push myself beyond the norms (exercise, different foods and beverages, etc.). I'm 100%- it'll be 2 years next month that I had my surgery.  Thanks doc!

My surgery was done at the Mayo Clinic in Phoenix. My colectomy was in July 2013 and the takedown surgery was in the following October. Dr. Tania M. Young-Fadok is surgeon who performed my surgery. She is the Chair of Colorectal Surgery at the Mayo in Phoenix. There are a number of videos on the Mayo site and Youtube that have been done by Dr. Young-Fadok. I did a lot of searching on the web when the decision was made to have the surgery and I was fully prepared with questions regarding the procedure and what to expect after the surgery. All of my questions were answered and more information was provided regarding pre, during and post operation. I  have nothing by the highest regard for Dr Young-Fadok and all of the staff at the Mayo Clinic in Phoenix.

I am 15 yrs. post pouch surgery. It changed my life for the positive. I sometimes forget how sick with UC I was prior to life with pouch. Sounds like experience for everyone is different. Also sounds like choice of Dr. Is critical. Dr. Fisher was awesome.

I had a wonderful doctor in the very beginning of me getting sick.  I was 500 miles out out of my hometown and hospitalized for my first major malfunction of guts.  He told me to take notes on everything every Dr said to me, to write down any and all questions I could think of and to take those questions with me to every doctor appointment, and to never let a Dr leave the room if I had any questions remaining.  He also suggested that I do my own research on things both before and after every meeting with my dr.  Sounds elemetary, huh?  So many people with crohn's and colitis just smile and nod politely and actually end up knowing less about their issues after an appt than when they walked in.  Following the suggestions of my first doc, I am able to speak to my Dr's in their lingo, rather than as a layman.  This actually encourages the dr to be more detailed and forthcomming with their explainations.  For these reasons and through my own efforts there have been no surprises with my j-pouch.  Not one.  It floors me that people would agree to go under the knife with questions left unanswered or simply on the suggestion of a fallible human (the Dr) without doing some sort of research on their own.  Most every doctor I've been to has helped me get into contact with prior patients so I can talk to someone who's been through it.  The Dr's have since used me for the same reason and it it's a very rewarding experience.  The point being, don't let anyone touch you until you are 100% certain that you have covered all your bases.  Going under the knife is scary and risky, so all the more reason to leave no stone unturned.  I really feel sorry for all those who are forced to welcome surprises in their post-op life, but understand that talking about some things is embarrassing.  Do it anyways.  You can never be uncut.  Ask  questions...even stupid ones.  Take notes on every word spoken.  Do your own research.  Learn the lingo and speak it.  

***One more thing--Never stay with a Dr that doesn't respect you.  If you are uncomfortable with your Dr for even the slightest reason, DROP THAT DR IMMEDIATELY.  In the end, you, alone, are responsible for your treatment, good or bad.

 

Backround:  I am 21 years post surgery.  I knew everything that was going to happen for over a year before the surgery because my docs had strongly recommended it, but I refused (Did the research anyways).  When it came time for the surgery, I had only hours to live.  The surgery was no longer an option.  I was hemhoraging (-sp?)   I either did it, or died before morning.  As a newly wed 19 yr old soldier on a military life flight, I weighed only 80 lbs that night.  I don't regret the surgery ever.  I would never go back.

My surgeries were in 2012 at the Cleveland Clinic, Weston, FL with Dr. Steven Wexner.  Everything he told me would happen, happened.  His staff & nurses gave me multitude of information & actually sent me to the j-pouch community website as well as a list of patients with phone numbers that had surgery before me.  I have a wonderful life now after a year and half of healing and adjusting to the j-pouch.  I am very physically active, eat just about anything I want & travel.  There isn't anything I am limited to doing & am so blessed by this surgery.

Please make sure you take a Probiotic everyday..  You also may more  Lactate intolerant after the surgery 

 I'm doing fantastic after 7 years post surgery ..  

                  Ps. I have plenty of tips if you need them!!

 

Has anyone experience lack of tolerance for alcohol post surgery? That was the only big change for me. It started makings sick so I quit drinking soon after surgery 15 years ago.

Although I answered NO to the survey, I feel I probably had the best doctor there is for this surgery. I didn't have any real complications to speak of, I just think my doctor was spread way too thin. He probably should have had a qualified staff member to walk me thru the entire process and tell me what to really expect....

 

It has been 15 years now and I am still doing very well...

 

grr

I had my surgery at Univ of Chicago in Illinois.  I had a WONDERFUL surgeon and team and I think they did an EXCELLENT job of informing me of what to expect EXCEPT for one thing.  Because I also have PSC (Primary Sclerosing Cholangitis) of the liver, I'm at a higher risk for colon cancer so when they removed my rectum I had the option of them taking as MUCH rectal tissue out as possible moving down into the anal cuff area so as to limit prevent the chance of developing cancer in any remaining tissue.  Most patients have the rectum removed with a bit of tissue left to staple the Jpouch to.  I chose to have more than that, as much as possible, with the surgeon hand sewing the anastomosis.

I'm not sure if it's because of having more tissue removed than normal but 2 years post, I still have to sleep with Depends as when I fall into a deep sleep, the resting tone of my sphincter muscles allows stool to leak out.  I have some slim pads called "B-sure" that I place in between my cheeks at night simply to catch any small liquid but the Depends are for loss of actual stool, which happens every night unless I wake up every 2-3 hours.  Of course nights are worse if I eat late, drink a lot of liquid or have been eating bad food (fried, sugary, caffeine) but even if I'm following all the "rules" as it were, I still have loss of stool.

I'm still glad I had the surgery and I would MUCH rather live like this as my day times are WONDERFUL and I feel SO MUCH better than when I had the UC.

In addition to good education, my surgeon paired me up with former patients, to help me after surgery. And thus, I was called upon to guide a number of his patients, after I had recovered. I had an S-pouch some 35 years ago, and it's still working like a champ!

My surgery was 22 years ago now.  I can't say that I fully understood what was going on and I was shocked at how the surgery resulted in the temporary 'bag' until I healed for the next steps.  I ended up have 4 surgeries to get things done.  My surgeon was very good and I'm happy that he  did what he did for me.  It was not easy and I probably pushed it going back to college 2 weeks after having my entire large intestine removed.  The best advice I can give anyone who had a similar surgery is to take a probiotic.  I dealt with years of infections treated with harsh antiobiotics before having my doctor suggest I move to a probiotic.  He suggested Florajen 3 to me and I've been taking it for 15 years or so now.  Here is the website:

 

http://www.florajen.com/products-florajen3.shtml

 

Twice a day keeps the infections away is my motto.  I haven't done any rounds of antibiotics for pouchitis in over 12 years.  If I feel like I'm having issues I self treat with liquid pepto and keep taking the probiotics.  Hopefully this info helps others out there.  I know it helped me feel better and deal with the jpouch.

You must be your own advocate when it comes to your health.  I asked LOTS of questions, and my surgeon was generous with his time in answering them.  However, the reality is that most of them have never lived with UC or the aftermath of j-pouch surgery.  The best source of info is other patients who have walked this path.  At the same time, everyone is different, and no two people will have the same experience.  I am almost 3 years post-op, and it has changed my life for the better.  I chose to have the surgery so I could be an active, present mom to my kids.  I wish I had another choice, but I know I made the right one.

I feel this survey is somewhat skewed toward "No". I answered no, but I'm not sure it's possible to inform us of every possible outcome. I spent 3 weeks in hospital recovering from the pouch and another 3 in hospital after the take down. I ended up with retrograde ejaculation, I had to inject myself for several months post surgery because nothing else would stop the liquid flow. Was I forewarned about any of this, nope. Would I do it again, yup.

My surgeon saved my life and gave me great information and support.5 years post surgery and feeling great. No issues so far.

Young-Fadok was my surgeon too. I had all the information but was not prepared to be allergic to the ileostomy bags. That was the hardest part of the transition post-op. I've had my J-Pouch 4 years Feb 25, 2015. I see her annually for a pouch check too!

When I was 22 years of age I had a colectomy because of Fap-Gardner's syndrone This is an inherited disease of which I have lost my dad, my sister and my daughter to.When I was 42 years old I had a J-pouch done because of so many polyps in the rectum  Because of previous surgery I had to have the j-pouch done all in one surgery .However because of the first surgery the pouch made with the end of my small colon was larger This was a blessing and I thanks God for all the preventive measures my Mom instilled in me. I had been seeing the first surgeon for most of the the years in between my 2 surgerys I have learned what foods that I should not eat or very little of. I am now 74 years young and Thanking God so much for his presence in my life He has had to carry me at times The doctor who did my j-pouch was married to the grandson of the doctor who created this surgery She was so good to talk to and answered all my ? and was there for me. This was the first surgery she did where she could not do the surgery in 2 operations After she  moved I started going to a rectal and colon specialist she had trained  I have never regreted having this surgery and am so happy to see all the advancements that the years has brought, My 2 grand sons and my great-grandaughter has all had there large colon removed They and I get checked regularly

I'm 7 years past surgery. I am happy I did it. I'm a cop and worked graveyard patrol with the bag. I was very sick before and lost nearly 60lbs in a month. I worked hard to put 20lbs of muscle back onto go back to work. I had the take down surgery 11 months after the first surgery. It has effected me greatly but I am used to dealing with it. A good diet makes it easier. I eat differently when I work patrol. I could get stuck on something where I can't make it to the restroom. Its always part of my planning. We all have our issues. My surgeon was great, his information was not so much.

I have a very good Doctor, and whilst he gave me no information as to what to expect I think he knew that I would have done, what I had done, that is, researched (particularly at j-pouch) and other sites. He is well aware I ask questions because I worry too much!

It should be the norm, but sadly isn't.  Many people don't know where to start or what questions to ask, while others are just so overwhelmed that they don't want to know.

I'm from England and m surgeon was fantastic. I had a notebook full of questions and he answered them all pre surgery and added to the gaps with concise, relevant info - gave me leaflets, websites to mug up on and a gastric nurse specialist and counsellor to make sure i was fully clued up as to t h e magnitude of what was about to happen.
post surger, the district nurses visited me at home to help me adjust and show me the new routine, sterile procedure and my family doctor Oscar visited thrice weekly at home to check on my progress and have a cuppa tea and a chat. God bless the NHS.
Good luck to all fellow pouchers. x

I had a good Doctor, so the reason I answered this survey with a "no" is I did not expect to get pouchitis and understood it to be a one-time issue that would clear up in a few weeks.  I had no pouchities for 3-4 years after my surgery (2006), but developed pouchitis about 5 years ago.  Initially treated with Cipro and that worked quickly and did the trick, but when the Cipro went away the pouchitis came back.  I was told by my GI doc it is too broad spectrum to take long term.  Forward to today, I am doing well on 3 - 250 mg Flagy'ls per week (one each day on M, W and Sat), Activia daily and 3mg of Entocort each day.  Disappointed mainly for 2 reasons:  Entocort is a steroid which could have bad consequences.  It is poorly absorbed, however, and seems to work mainly in the GI tract, so minimal side effects so far.  In addition, I was on a much bigger dose of Flagyl until it caused neuropathy (which isn't going away) in my feet (which I had not been warned about).  On the positive side, my lifestyle was greatly improved almost from day 1.  I no longer search for the restroom as soon as I enter a place I have not been before. Good control, only issues sometimes at night. All in all was good for me as I had the disease (UC) for 25 years and it was wearing out the rest of my body.  

 

Anybody else out there on long term maintenance Entocort therapy ?

Hi tvstahl, I had the same experience. Had surgery 16 years ago. My doctor made it sounds like pouchitis was no biggie and would be treated with anti-biotics and go away. After being on and off Cipro for almost a year and doctors wanting to put me on harder drugs, I finally focused on my diet and stopped taking all the anti-biotics that were affecting the rest of my body. It was the best I ever felt. I slowly went back to my same bad eating/drinking habits accepting that when I indulge too much I will pay the price. Then I back off and become a little more strict on my diet choices, and I usually level off. I have to say, I'd rather feel a little crappy now and again than be on those hard core drugs all the time. And my quality of life has been so much better since the surgery I am thankful almost every day that my surgeon and doctor saved my life.

I had my surgery in 1994. The first night the nurse didn't empty my pouch, and I was in too much pain to care. I developed pouchitis soon after, and spent years trying to counteract it. Everyone had ideas, but none of them truly helped. Until I started analyzing my diet, and started restricting foods such as beef, rice, caffeine, yogurt, probiotics (I've never tried the florajen 3 jhuehne recommended) and many others, Things improved greatly after that. Then when I was diagnosed with Diabetes II I was put on a drug called Victoza that improved things even more. Things aren't perfect yet, and I do not expect they ever will be, but at least I am getting my life back after all this time. And everyone is different, and things that work for one might not work for others, but it never hurts to try...

Good luck, everyone.

My husband's surgery was in 1991, so well before I became computer literate so we were guided by an absolute Angel of a Specialist and his staff who gave us sooo much information and the staff at the hospital ( especially the Stoma Therapist Nurses and the Intensive Care Doctors and Nurses  It was touch and go whether he would survive and I thank everyone here who has been very helpful when I have posted . . . he is having a knee replacement in a few weeks and we are more concerned about his J pouch than the knee surgery as the pouch tends to cause major discomfort with each operation he has had on various parts of his body since he got his pouch - best wishes to you all xox

 

I was diagnosed with uc when I just turned 12 years old but was very sick months before they figured out what I had. My whole colon was severely damaged and I wasn't responding to treatments. They told me I wouldn't have lived much longer.  I couldn't return back to middle school which I just started. And I couldn't attend high school either due to all the complications. So I was forced at 13 years old to have the three step j pouch surgeries. And I wasn't warned at all about pouchitis, cuffitis, blockages, ect, nothing. Which I get often.  I was completely blind sided. They did tell me I may never have children which came true. I'm full of scar tissue and had to have a total histetectamy in 2010 at 25 years old. I've also had 4 hernia repairs and now have another one growing. My pouch prolapsed twice and have had problems with the surgical mesh that's been used.  I get blockages all the time and have had to have surgeries for them part of my stomach had to be removed because of it. Right now I been struggling with bad spasms in my pouch and rectum. To the point where I couldn't move.  It scared me to death. I was to the point I wanted my pouch out. I've had so many problems and have a lot of pain. Now I'm on muscle relaxance and pain meds around the clock.  They said removing my pouch will only give me other problems and I'm young and it's a surgical mess in there. So right now I take It one day at a time. My meds help keep me comfortable. I've done bio feedback to. And was doing some stimulation in my rectum with a therapist but the spasms got worse so my doctors said to stop doing them.  Its hard my diarrhea is a big problem to. And I get rectal fissures a lot. But, I'm thankful to have a supportive fiance and for my fur babies. They keep me going. Even on days that are so hard to bare. I wish I would of been more educated about what could happen. Its scary I've had twelve surgeries on my abdomen and I'm only 30 yrs old. Its hard because I can't have kids either and am in menopause. I'm on disability because of all of this. And can't get married Because I would loose it all my health coverage because my fiance makes to much money and I have a preexisting condition. My medical bills would put us in the hole.  It's not just hard physically but emotionally to. It's unfair but I will never loose faith in god. I've come along way and he's helped me with that. And he brought a man in my life almost 11yrs ago who accepts me for me. To all of you who are struggling to my heart goes out to you.  I  Know its  hard but we got to keep fighting the fight even on those hard days we can't bare. Please don't give up your hope or faith. Best wishes to you all!!

While my doc was a great surgeon, he did not fully prepare me for life after surgery.  I went thru significant discomfort and pain before my system finally adjusted.  More than a year of managing varying periods of spasms, constipation, leakage and perianal pain finally resolved.  I now manage using one daily enema, and everything is otherwise back to surgical normal.  Wow - great feeling!  While it was my surgeon that suggested this, it was not until the 2nd year.  I feel I might have avoided much pain and grief if I had started doing this earlier.

Look, my surgeon is one of the best around but his post surgery follow up was not very good. My Gastro Doc took over and I just taught myself what foods I could eat and not feel bad. I drink mostly water, a few gatorades, and I love beer but drink it sparingly. Oh and I am a Meta guy with Imodium pills and they get me along. Recently caught a bug Norovirus from one of the grandkids and I lost 25 lbs. in 4 days. Took about two weeks to gain the weight back.

I am post surgery 14 years and it was the WORST decision in my entire life. My Dr. Was a Putz with a capital P. Can't say anything good about it or the Dr.

I liked the part that said if you were in any way not happy with your Dr, to drop him/her. I never did go back for my follow-up yearly check up but have seen my GI Dr here. He does yearly sigmoid flex scopes. It has been 8 years and all is well with the pouch. I am limited to foods and times I can eat. But I am still learning that it is what it is and I am free of the disease. Thank you~~  Dawna

I am 12 years post surgery. It was done in Toronto at Mount Sinai by Dr. Robin McLeod. I received beyond excellent care from her and her staff. She too said to me that I'm going to wish I had done it sooner, I'll be able to eat anything.... I really didn't have a choice to have the surgery. My quality of life was suffering, I was in and out of the hospital. I couldn't leave my house let a lone work. IBD (Colitis) had taken over my life. The hospital had a video, and they explained the procedure and what I should expect. However I wasn't given any information on what to expect after the surgery, and since I lived 1200 miles from Toronto I was basically on my own. I do have an excellent GI doc, and met a few people in the hospital, one who has become a really good friend and she helped me through aftermath of the surgery as our disease and symptoms were very similar. The surgeon doesn't want to hear about any problems. Their job is done , get in, get out, next. However the support team should have some information available on what to expect post surgery. I had to rely on my pouch buddies for that. I have been on flagyl and cipro since my surgery and will be probably for the rest of my life. Up until the last 15 months or so my pouch has been manageable, now I'm having new issues, which leads me to believe that maybe I have crohns, or now there's something called colitis, with crohns like symptoms. I am employed full-time and try my best not to let my pouch dictate my life. I take VSL-3 before bed and have eliminated foods that cause me the most grief, exercise regularly, monthly massage, and try to stay focused on the positive. When you have IBD, you have a whole different relationship with food then those without. I eat to live and don't get any enjoyment from it. I learned that everyone is different and what works for me may not work for you. I try not to think too much about the future and live one day at a time. 

I am 20 years post surgery and just started having problems within the last 2/3 years. My surgery was done by Dr Vendie Hooks at University Hospital in Augusta, Georgia. He was an EXCELLENT surgeon. Explained everything that I was to expect clinical and mentally, had a former patient come to talk to me that was the same age as me at the time, 26, to share her experience and answer any questions that I had, was always available if and when needed for any questions or problems and also was at the hospital post surgery all night checking in on me, according to my husband. I would recommend that anyone thinking about having this surgery really research doctors as best as they can. One of the reasons that I had my done at that time was because he was one of the top surgeons in the country at that time.

I got septic poisoning on the second surgery of a series of two. The first surgery they built the pouch and the second they attached it to the small intestine. They left a hole in the small intestine. In order to fix it they had to go in a third time. My body did not react well. I was in a coma for a week on a respirator for almost two. I got pneumonia, atrophy, and my lungs needed to be drained. It was very scary. Now exactly six years later I am healthy. I attribute most of the healing to my mother. The doctors would not tell us what was happening and when my mother starting asking questions they made her leave.