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

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Posted by Bill Johnson ·

Comments (92)

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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 

Originally Posted by Olina:

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.

 

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 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.

Originally Posted by Olina:

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.

 

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.

Last edited by ksr
Originally Posted by ksr:

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

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 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.

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.

 

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!

At the time it happened I didn't know what was going on. My mother only told me that the doctors reacted like that after she started asking technical questions. She wondered why I wasn't getting better. She didn't tell me this at the time because I was extremely ill. People on this board say I would do this or that but when you are so sick it is hard to make such decisions. It has taken my mom and I these years to process exactly what happened.
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