Do you feel your doctor gave you adequate information about what to expect after your surgery? 419 Responses

Now all we can do is deal with it.  I've tried so many different remedies; it's my life now what else to do.  But if I had known before hand I would NEVER of had this surgery! 

I am post open since 1992.  I had UC for just a few years when I had a severe flare and went to my primary for care as I had no health insurance to see a GI.  But I did get an emergency appt and that was the first time I heard you may need surgery.  I was in denial.  But I went to the ER several days later and spent an entire summer with complications before and after the total colectomy.  When you have no time to research and don't have any idea what anyone is telling you it is a bad situation.  Luckily I had the best GI Dr. and Surgeon in the city so I was somewhat relieved. Upon having the takedown I did see the surgeon several times and he suddenly retired at 41 so my care was left with the GI.  There were so many questions I wish I had asked.  There is so much I wish I had been told.  As time went on and I got pouchitis or years later suffered with my first of 5 partial bowel obstructions I wish I had known what can happen down the road.  I have been seeing a GI Dr for years due to severe gerd so she does keep up on my pouch issues also.

Absolutely not!  I was so naive, even after looking up the info about post-surgery online. I believed after the surgery my bowel movements and associated discomfort and pain would all be gone.  It only created new problems and far worse than what I was experiencing prior.  I wish I had known.  I regret the surgery everyday when I'm having multiple stools, butt burn, and pain.  

I have to remind myself that my UC was so bad that doctors advised it had become a life issue. When I put it all in perspective maybe there wasn't any other choice for me, but wish more info was provided before surgery as to what to expect.  

Not only did he not provide adequate info, he was not there to consult or help me in my recovery.  And he was touted at one of the best in Boston, James Becker.  I ultimately had to go from Boston to Cleveland to find someone who could support my very bumpy road to recovery.

I was at the Cleveland clinic at 15 years old.  They told me what potential complications could occur and even had me meet someone who had the surgery then got pregnant.  This was almost 30 years ago so they didn't know about some of the long term issues, but I do remember hearing about fistulas and pouchitis (which I have had both)

I have noticed quite a few comments about followup.  My surgeon had initially told me that he would do an endo-type test every 2 years as there is technically still a colon cancer risk on the cuff that is left (though he said he has never heard of that happening).  We did this for a few years, and then about 3-4 years post surgery I got pouchitis .  Surgeon scoped and said I needed medical (not surgical) trmt, so bounced me back to my GI doc.  My GI doc scoped and diagnosed as pouchitis and we are treating with Entocort 3mg once per day (9 mg initially, tapered to 3mg) and Flagyl 3x per week, yogurt, diet, etc.  This has worked well, and my GI doc is willing to treat, but he wants my surgeon to do the scopes because he is more familiar with exactly what was done in operation.  SO now - surgeon scopes and prepares report, sends to GI doc, he adjusts trmt if needed.  Sounds busy, but I just see each of them once per year - so its not too bad.  One concern I have is even after surgery I am back on "permanent " steroids (entocort).  I understand it is poorly absorbed except in the GI tract, so you don't experience the systemic symptoms of other steroids like prednisone (at least so far).  Interested if anyone else is on long term entocort therapy for pouchitis.  T 

Yeah...right....the GI who had been treating me told me that I no longer needed to see him after the surgery and my primary doctor was the first one to tell me that he didn't have any experience with this type of management.

I just had a knee that 'popped' on me and suffered a tear to my miniscus which then put me on ibuprofen that totally irritated my pouch and I was afraid that I was suffering from my first encounter with pouchitis. So I went to my primary. I had to tell HIM what the treatment for pouchitis is. He told me to go to the GI (who is no longer in practice) so I got an appointment with a Nurse Practitioner in that office. She has been the best provider that I have EVER seen in my 33 yr history of GI problems. I have been to 4 different GIs, two surgeons and 2 primary care providers over the years and she gave me more care, information, treatment and followup than any of the rest of them. I ended up getting scoped (for the first time since 2003) by the surgeon who assisted in the surgery. Everything looks great and there is nothing going on- just have to avoid high doses of ibuprofen. His followup...you should probably get scoped every couple of years. That's it. I am in a major metropolitan area and these are highly rated doctors and medical groups. If it weren't for what I've been able to learn from THIS site I hate to think where I'd be. Maybe my expectations are too high, but I expect to know and understand what is going on and like to know what reasonable expectations are but until I met this nurse practitioner the doctors that I have seen have only ever given me very vague and basic information - and very poor followup.

My surgeon is still my follow -up care provider after eight years. I get scoped every year...

My colorectal surgeon at Mayo Clinic is my follow up doctor. I no longer see a GI. I believe I was prepared for the surgery, what I was not prepared for was the ileostomy. I was allergic to the latex/adhesive in most of the pouches and it was the most painful part of the whole process. I am now at 4 years.

I got my j-pouch 13 years ago and I still have visits with my surgeon.  If I have problems with my j-pouch or get obstructed, I always call my surgeon.  He prefers that I call him.  My GI doctor does my EGD and pouch scope every year.

I think too many patients do not realize that the surgeon is not their follow-up Doc.  You must use your regular Doc for follow-up care.

 

That is incorrect.  Surgeons go by the recommendation of the referring doctor, your GI.  There are certain criteria that must be met before the surgeon will approve going forward, but the surgeon is only responsible for your care in preparation for surgery, during your hospital stay, and the followup phase soon after surgery.  Beyond that, it is up to your treating physician to tell you what to expect long term.

I think surgeons don't tell you what to expect after j-pouch surgery because some people might not go through with it.

I am 11 years post surgery and am astounded at the TOTAL absence of ANY pre or post operative information, direction, followup, ANYTHING that even faintly resembled what to expect, what to watch for, what to do or not do... I was given no prep for the surgery and at that time found very little information in my own research leading up to or following surgery. As I have seen the extensive support and pre- and post-surgical information that my husband has received for comparatively minor surgery I become more and more pissed at the lack of care I was given. The ONLY instruction that I was given when going home after 14 days in the hospital was to be told by the surgeon to stay on a liquid diet 'for awhile' and then add fiber and then to be told by the doctor who assisted the exact opposite and the Gastroenterologist that I had seen for years pretty much washed his hands of me following the surgery - telling me that I no longer had colitis and no longer needed to see him. Buh-bye. No. I was not given enough information.

I am 26 years post surgery, 1988-89 UCLA Los Angeles, Dr. Eric Fonkalsrud (probably deceased). I was fortunate to have him perform the surgery as he was one of the creators.  His nursing team was fantastic and very helpful, that said...there was my own learning curve post surgery.  Because I had UC at 19 for 11 years, I followed many different health promoting regimens including vegetarian, vegan, macro-biotic and a few years ago raw vegetarian. I have been a proponant of vitamins herbs and supplements from the onset of the UC.  Though I have had some bouts with pouchitus (which I take probiotics for and go on a liquid and soft diet), I have been relatively symptom free for the 26 years.  I use 1 tsp of psyllium to 1 cup of water with meals, which helps to keep my movements consistent.  I drink alcohol in moderation, I eat all meats and all cuisines, including Mexican and Bar B Que, I eat organic veggies,salads and fresh organic fruits when possible, I have plain yogurt and miso soup daily (natural source of probiotics and good for cancer prevention)  For me everything in moderation has worked and eating well is the key.  I found that being my own advocate and taking responsibility for learning what is necessary to keep myself as healthy as possible has been my key to sanity and I am a firm believer in therapy.  I go on as as needed bases for periods of time.  I feel emotions and stress are a huge factor and find great solace and comfort in the confidential safety of a good and understanding therapist.  I love the fact that at 56 years old when all of my friends are going in for their colonoscopy's, I don't have to.  One less thing to be concerned about in this life, no colon - no colon cancer !

Lucas, quite correct, forewarned is forearmed, I have disposable undies in the wardrobe unused, Imodium in the medicine cupboard unused, baby bottom rash cream, used once as an anticipated preventative (not needed).  All this was because I read up others' experiences. It's a good thread.

 Deleting the thread is a terrible idea. This poll may be skewed but the comments from people are undeniable. The poll is very limiting anyway, as it is a "yes or no" answer. Reading the stories is much more informative.

 

I have had very few major issues with my j-pouch since my surgery in 2001 but I wish I had read this thread before the surgery (still would not have changed my mind to have it done since it literally saved my life). I would have been much more informed when I started experiencing chronic pouchitis and would have felt more empowered in taking control of my treatment instead of only relying on medical professionals.

The actual poll results are skewed, yes, but still a good valid thread.

CT barrister is somewhat correct, but the question was about how much information your doctor gave you.  I have had a dream run with my ileostomy reversal, basically no problems worth mentioning.  However, in response to the actual question, I was given no information whatsoever. In my response I qualified this by saying that I had a good doctor and I had done my research. Reading the replies of others may suggest that indeed doctors should be able to supply information by some means even only by way of a brochure or leaflet.

This survey is dangerously misleading because it's only a poll of people on a support board who come here for support with problems.  Not included in the poll responses are the vast majority of people with J Pouches who never come to this board and have no issues.  One can imagine what their responses would be.

 

It's like doing a presidential election poll and not counting anyone who is Democrat (or not counting anyone who is Republican).

 

As a result of these skewed poll results which are complete fiction in reality, people coming to this board and considering surgery may be discouraged from having surgery if all they do is look at the poll results.  For that reason alone, if I were moderator, I would delete the thread or else modify the poll so there is a disclaimer that it is a survey of those on a support board which does not include many responses of persons with J Pouches not requiring support.

 

I hope nobody considering surgery balks as a result of reading these poll results.

Selene, im so sorry you had such a difficult time with your surgery and your surgeon.  If any doctor did that to me, I would have been on the phone to the hospital administrators !  I question everything and know just enough to be dangerous!  That's terrible how they treated you and your mom.  Totally unexceptable.  But glad to hear that at the end of all of this, you are healthy and feeling better.  I hope you found a new team of doctors!

My sons' surgeon was very explicit about the surgery and how difficult a surgery it was going to be.  He was spot on.  I believe that when a surgeon tells you it's a rough surgery, it's going to be a rough surgery.  Our surgeon has been the one primarily taking care of my son, not the GI.  He never has even come in the hospital even though his office is in the next building.  The pain management has been more of an issue.  My son is autistic and has sensory integration problems.  He has a high tolerance for pain, but I think he metabalizes the drugs very quickly.  He seems to require a horse doses, not a human dose.

To Gewcolo and others: REGARDING FIBER.

I am taking about a tablespoon of Metamucil powder (psyllium fiber) right before every single meal, mixed with one cup of water. This produces solid or semi-solid movements on a consistent basis! I would encourage all of you to give this a try if your usual output is diarrhea, or something close to it. At least a few times a week, something I eat-espescially restaurant food-does not solidify. But the results I get are FAR, FAR better than what happens to me with no fiber (diarrhea mixed with lots of burning acid). When I first tried Metamucil I was advised to use a larger amount. This immediately produced solid movements, but left me with a bloated, blocked feeling. My stool was being bulked excessively. The fiber soaks up a lot of the acid too, cutting down on 'butt burn'. I've tried lesser amounts of fiber and the stool is less solid. You'll want to find your own 'perfect' amount by experimenting.

Some notes:

-the fiber MUST be Psyllium, other types such as inulin don't soak up the water that psyllium does.

-Metamucil makes the most palatable product by far-the cheap stuff is nasty. Sugarless and Sugar MM work the same for me. I prefer the sugarless Orange flavor.

-psyllium fiber pills do work-but not nearly as well-it takes 18 pills washed down with a cup of water to replace that same tablespoon of Metamucil powder for a meal (usually away from home).

-mix MM powder with one cup of water, stir, and drink quickly, before the fiber clumps and becomes difficult to swallow. The sugarless clumps even more quickly than the sugared MM. However, it's manageable if you work fast.

-you've got to take it immediately before eating for it to incorporate with your meal and soak up the water and acid that your colon used to deal with. If you forget, take it right after or during your meal.

To Ron S. and other users of high amounts of fiber, my doctor told me the same thing. I tried it for awhile, but I ended up sitting on the toilet 16 hours a day. So I tried the opposite, and went on a low fiber diet. Yes, I had chronic diarrhea for years after, and mostly still do, but I'll take that over constant defecation anytime. And as I posted earlier, so far for me diet is everything. So many foods contribute to liquid/loose stools, and they seem to change all the time, but watching my diet very closely has improved (not cured) my problems. 

I wish all of you luck, and I hope you can find your own ways to improve your lives as best you can. As for most doctors and nutritionists, you are more of an expert than most of them. Believe that.

Here's some of the things that really bug me: No warning about nighttime incontinence. No help with post-surgery diarrhea care (couldn't even recommend something like Desitin). No warning about incredibly painful blockages (these seem to have stopped after the first year or two). No information about the life-long need to take fiber (and lots of it) with every single meal. My surgeon-one of the best in my area-seems to take no interest whatsoever in follow-up information that would help his patients. Who is doing research that would help J-Pouchers with their post-surgery lives? Apparently no one.

  Take a probiotic everyday and that will take care of Pochitis. 

 

Surgery on Thursday, discharge on Saturday inspite of my telling the nurse I was bleeding from the rectum.  We drove 4 hours to Des Moines where I was finally hospitalized with bleeding,  Hg went from 15 to 10.  Call to Doc on call's response was "She's a bleeder.  My Husband was not instructed to give me pain meds, and I didn't know he had them. 

There's a lot I wish I had been informed of prior to surgery. I might honestly have switched hospitals sooner had I known that the Cleveland Clinic was so much more used to this type of surgery (and much better with bedside manner too, because unlike the first place I went--not a teaching hospital). I also wish I had known more about the post-op procedure in general, such as the possibility of allergies related to the adhesive on the ostomy supplies (I had a rash the entire time I had an ostomy and then was also allergic to the powder used to treat it so I went through more bags than normal because they'd just fall off of my weepy skin--not fun and very expensive). I wish I had known sooner that you can get help for purchasing the ostomy bags through different places online (http://www.ccfa.org/resources/...ient-assistance.html is a great resource for any ostomy newbies that might need it). I wish more had been discussed with life after surgery as far as diet--they say you can eat anything but then, you need to find a balance of getting enough fluids and then do things like probiotics still work if you don't have the bacteria building in your colon because you lack a colon? I wish I had known about the possibility of GETTING the jpouch surgery in the first place but I think my GI at the time was afraid to lose the business. I only found out about the surgery through this website. Some of the people that helped me aren't here anymore for various reasons, but I'm still eternally grateful to them and to you for continuing this website. It has helped so many people survive.

I  do take a probiotic..especially for my acid reflux and also I have tried Immodium over the years with no change in the amount of bowel movements...thank you

Please try a Probiotic. Try drinking as little as possible while eating, after a 1/2 hour you can drink as mush as you like.  Stay away from dairy products ( my Doctor said you become more Lactose intolerant} as much as possible. Fruit juices are not a great thing for J-Pouchers.

   Ps. Imodium is the name of the game!!!

 

I kind of hate to relive all this; it makes me really upset.

My surgeon did not explain much at all to me, and did not know the answers to any of my nutritional questions and other concerns. He and his partners missed my sepsis after the first surgery, due to a leak in the pouch, which I even told them I had (when no one could get a blood pressure on me and I was having severe shaking chills for over an hour, five days after surgery--sorry, but that's something a med student could figure out). He did not take proper care of the wound--did a cursory exam of my incision, which was draining copious pus, and determined that it was not below the fascia. Where else would it come from? I wonder if he was in boards collection and did not want to have to report a complication (if he had to take me back to surgery, which he should have, it would be recorded as such). I won't bore you with the series of mistakes he made. Suffice it to say that I finally recovered the strength and brainpower (it certainly gets sapped during chronic peritonitis and serious illness) to find a better surgeon, and luckily it was downhill after that. 

Given how little he seemed to know about surgery, I should not be surprised that he knew absolutely nothing about the medicine, diet, etc. to go with UC. What concerned me more is that my GI doc, who came recommended by my boss (a physician, like me), did not have much to offer, either. I started finding resources like this online. It is interesting, because I ended up realizing that maybe there isn't that much they can know. I had a consult in the hospital from another GI doc, because my first surgeon did not have any idea why I was having a prolonged ileus after surgery. The GI consultant knew quite a bit about what to expect, but he admitted to me that it was because his brother suffered from it, so he had a lot of experience. My cousin's husband is a GI doc with 20 years in practice. He tried to help but did not have more than generic advice. He also told me that he had only had 2 patients in 20 years who had to go to surgery, after many years. Later he told me that, after this happened to me, he had 3 in one year who had to be referred for refractory UC. 

As a physician, you can imagine that I did as much researching as I could... but only AFTER I let myself listen to my physicians, who took an awfully long time to confess that they did not have the knowledge they purported to display. I should have done this first, but I trusted them to know and guide me, as I would my patients. It was foolish in retrospect. I did not know how little doctors actually know about dietary issues, chronic diarrhea and abdominal pain, and what it is like to live with UC... I had to come to them with all my issues, instead of being prepared by them ahead of time. Then I found that they rarely had an answer to my questions. The one who knew the most could only throw medications at me for my complaints, which I cannot take while working, and yet he is a really good, very competent surgeon. They are just not taught anything about what the patient actually experiences.

I found more help on the net, which is frankly scary, because we don't know what is true and what isn't when reading it online. In the end, I have had to figure out most things myself and by reading these forums to see what others found successful. Crowdsourced medicine--who knew??? (:

I am not happy to find out the failings of my profession. But I have learned so much from being a patient, most of it horrific, that it is good to think about when I take care of my own patients. I probably go overboard trying to compensate. But I'd hate to have anyone else feel the way I did as a patient--frightened as things spiraled downward and no one seemed to recognize it, treated like a burden, or worse, as paranoid because I'm a doc. I saw how little anyone washed their hands, when I was surrounded by rooms on contact isolation; how poorly the room was cleaned, and how quickly my concerns were dismissed. None of the aides knew how to properly take an oral temperature (needs to be under the tongue, far back on either side, for true temp value); the automatic blood pressure cuff was preferred by the aides, but was not cleaned between patients; we could only hope to get a nurse who knew how to give the lovenox humanely (if done wrong, it's miserable). My surgeon thought nothing of exploring my fresh incision at bedside with sharp implements, despite how much pain it obviously caused. He rudely and forcefully packed my wound open, and did this with absolutely no compassion or understanding. It was some kind of hell. 

I still ask myself why I did not sue him for all his incompetence. I sincerely thought about it, but I consider myself allergic to lawyers for obvious reasons. We all make mistakes, physicians as much as anyone, so I usually don't think in those terms.  I tried to think of what it would change or bring back. I just wanted him to understand how close his incompetence came to costing me my career, and continues to haunt me (chronic abdominal pain from the abscess he ignored for months). He just never got it. But in the end, I was concerned that I would have to relive it all acutely--the suit had to be brought within a year--and I was still trying to put it behind me. I did let my GI doc know that I thought the surgeon was awful, and that he should not recommend any more patients go to him (he had recommended this guy to me very highly). That probably did not do anything, though. 

 

 

I had my jpouch surgery 15 years ago after having been steroid dependent for over two years. My colon finally gave out and it was have surgery or die! My surgeon was phenomenal. The hospital/insurance plan had a great team of experts, prior patients, and dieticians who were staying up on the most current treatments and developments for UC and were available at all hours day or night. All of my questions were answered and I felt like I knew what to expect in regards to life post-surgery, but nothing prepared me for the pain. I had the jpouch surgery in one operation and the take down another 12 weeks later. I recovered quickly, but was very weak for several years after surgery. I suffered from pouchitis several times in the first few years and went back to Prednisone AGAIN. Feeling frustrated and desperate I did some research and found that Metamucil was my miracle cure. No more pads at night. No more checking for the bathroom everywhere I go. No more prednisone. I watch what i eat...No fried foods, spicy foods, food that are overly processed or refined. I take Metamucil before and after every meal. I used to take it mixed with a bit of water, but now after 12 years I've become a pro at it and just put it dry under my tongue and swish it down with a drink of water. I wouldn't recommend this method to start by any means, but Metamucil saved my life. I've been able to put on some weight and exercise regularly and actually have some stamina now! I haven't had pouchitis for over a decade. I definitely encourage you to research for yourself. Never depend on anyone to give you your answers...use your intelligence and stand up for yourself. Things can improve only when we're educated. God bless you all in your journeys!

 

 

you shouldn't have to put up with that many trips to the bathroom a day. That's what I was told at Mayo. It's no "way of life"

yes. I concur with Jeff would talk to dr about an antibiotic. I can't use flagyl make me feel worse than the pouchitis does. Cipro works but i was on it for 2 yrs straight and it was losing it's effectiveness for me. I went to Mayo clinic in January '15 (which i HIGHLY suggest!) The NP put me on Endocort (sp), an anti-inflammatory;  not cheap and an antibiotic (amoxicillan? and something else) the antibiotic knocked down the infection which, BTW, made me anemic because of bleeding in the pouch. NP also told me I could take Metamucil up to three times a day. I have not done that yet but will see what happens. 

Jeff -  are you on antibiotics? If not, I would suggest you ask your Doc for both Flagyl and Cipro. I've been on them since my surgery in 2002, without them I wouldn't be able to work. BM's are average 8 in 24hrs, depending what I eat.

You can get VSL3 thru your pharmacy (it will be higher in cost) or you can order it thru amazon.com. it runs $50-$55 for 60 capsules. it you are taking an antibiotic tho don't use it. You will be wasting your money as the antibiotic will cancel the probiotic out. Take it after you are done with antibiotic.