Skip to main content

hello to all,very informative site i hope all of you attain your goals and dreams.I have had 33 years of uc prednisone,6-m9,remicad,azulfidine,nothing worked.On april 2,2012 my lousy and horrible colon was removed by Dr sang won lee of new york presbyterian and he installed a loop ileostomy.I like many others hated my ostomy bag at first,but once i mastered how to change it it wasn't so bad.unfortunately i had the reversal take down surgery on july 12,2012.I believe it is worse than death i am going to the bathroom 33-44 times daily,immodium and lomotoil useless,i have an appt with this clown lee on 08/22/12 in which he will perform a flexible sigmoidoscopy any suggestions maybe the cleveland clinic thank you paul
Original Post

Replies sorted oldest to newest

wow...I have never heard anyone talk about NY presb surgeons like that. I have never been to Dr. Lee, but Dr. Milsom, his partner, performed my surgery and I have seen Dr. Sonoda also. From what I have learned and researched regarding this group, you are in very good hands. I researched my surgery well over a year before selecting Dr. Milsom. I am not sure how much experience Dr. Lee has with jpouch surgery as he is fairly new to the practice but Dr. Milsom assured me they are all top notch if I ever needed to be treated by any of them and I believe he hand selected all of them.

You have only had your jpouch for a very short time. It takes a LONG time for some of us for the jpouch to adapt and often there are many hurdles along the way. Having said that,I do not think going to the bathroom as much as you are is normal at this time but I have heard of others who struggle with very high output for a bit. Patience is something you really need right now and persistence if there may be something else going on with you.

The pouchoscopy will tell them whether you are having any inflammation issues like pouchitis which could cause increased frequency. Are you still on prednisone and weaning off it? I know I had some issues when I was going through that period. Hopefully you are keeping up with your fluids if you are going that often and try to eat more bulking foods if possible like rice, pancakes, breads etc to see if that slows you down a little bit. Wishing you good luck. I am sorry you are experiencing this and know how terribly frustrating the adaptation period can be if that is what is going on with you.
So sorry that your post op reality is not a positive one and that your pouch is giving you hell to is not fair but some of us have very finicy pouches in the begining and they take longer than others to adapt...that said you may have something else going on in there that could be helped with antibiotics or probiotics or a very radical diet previously said, diet may help a little bit...rice, bananas, toast and apple sauce are the usual foods to be eating right now with your extremely over acitve pouch and you may wish to add rice water as a thickener (over cook your rice in double the quantity or water and then drink the water)...avoid all sugars for now and maybe white may find a difference in output.
Hang in there even though I know how hard it really are in the miserable throws of a horrible nightmare but it may soon be over if all goes well.
sorry to hear your woes. Most on this site will tell you just wait it will get better. Or you may find that you have pouchitis and you need drugs and then it might really get better. But there is also the possibility that you could have functional problems with your pouch. That also needs to be ruled out. I was in your boat, exactly. However, it took me 6 months to get to Cleveland Clinic before they determined that my pouch had serious functional problems that could not be fixed with patience or medicines. So just saying... there are lots of things it could be. Hopefully the Dr. that is doing your scope really knows a lot about jpouches and knows what to look for. Because with me.. my GI that scoped me 6 weeks out, simply diagnosed pouchitis and cuffitis, threw tons of different antibiotics at me and I never improved. But when I finally got myself to CC, they immediately did their own scope and saw I had serious functional problems with my pouch - too long of an efferent limb and the whole darn pouch was way too big.
In summary - I am suggesting that you don't just "wait it out" but you go get a scope from a very experienced jpouch doctor to figure out what is going on so you can get on with your life.
good luck.
thanks for the replies,i have absolutely no confidence in dr lee or anyone at columbia presbyterian,this man has caused me more pain than you can imagine,i am so angry it will be hard to contain myself when i see this bum on 08/22/12 will probably tell me everything looks fine along with a lot of bs clinical ease nonsense,if j pouches cause so much discomfort why are they still performed for the money. pauln
Sorry to hear you are having a rough time. Dr. Lee is my surgeon as well and I actually have nothing but good things to say about him or the practice. My takedown was the end of July and I checked myself out of the hospital after two days and have been caring for my two young and very active kids since day four post-op. While this has not been a walk in the park for me, (I really don't think it's supposed to be for anyone), I think Dr. Lee is great. I hope that you get some answers and things get much better for you.
I have been thinking of you Paul. I want to wish you good luck tomorrow. I do believe you are in very good hands. Some of us have a much harder t ime adapting the the pouch than others. I have had a pretty rough year and Dr. Milsom performed my surgery with not one surgical issue just functional issues like pouchitis etc. If you are not satisfied with your results after the test, push for additional tests like a pouchogram or defogram to check for functional issues with your pouch (is pouch to big, is limb to big etc). Please report back your findings.
I am also part of that group with Dr. Milsom and Dr. Hunt being my surgeons. Dr. Lee has been with the group for more than 10 years. He was a fellow at one of my surgeries I believe in 2001. all my pouch problems and follow ups go to my GI doctor downstairs at the Jill Roberts Center for IBD. Good luck, although not a usual recovery I have heard thru the years of this happening at first. It could be pouchtitis and there are ways to control it.
Paul. I have had several dilations by Dr. milsom over the last year. Stay positive as this will improve. I have read about strictureplasty surgery but never had one. I am confident you are in very good hands. Sometimes post op issues just occur for no good reason. I am certain Dr. Lee can help you with these problems. If you ever needed patience in your life now is the time. This surgery tested my courage, strength, faith, personal relationships and perseverance. You will get through to the other end.
Last edited by jeane
hello again to everyone,i will be undergoing anal dilation and structureplasty procedure at ny presbyterian on thursday august 30,2012 i was informed by dr lee my surgeon that procedure is relatively minor about 1 hour,is this true and do i have anything to worry about.I thank you all for your thoughtful advice and hope everyone on this forum is or will feel better in future.paul n
Anal dilation is no biggie. As I have ssid I had several my first year out. You may bleed slightly after it snd have some minor leakage at night for a day or two. Don't get alarmed as it is very normal. I sm sorry I cannot offer any information on the second procedure but I am sure someone on the board may be able to comment on it. Good luck. Please post as to how you make out.
I know that when surgeries are not giving you the hoped for outcome that everything seems black and negative, but it is the surgeries that are black, not is what you make of it , once you can get out of the bathroom for more than 15mins....the procedures are minor but can give you a major push to becoming jpouch 'normal' and get some sort of life back...your pouch is still going to have to adapt to its new functions and learn to behave..That is a given and it takes time...period...there is no rushing adaptation...and it can take up to a year but you will see marked improvements slowly at the 3, 6 and 9 month anniversaries...less bathroom runs, more foods that you can eat etc...less tired and depressed (vitamin defficiencies can also cause depression along with pain and suffering and their horrible side effects)...I hate to tell you to give it time but that is exactly what I am have come so far, do not give up now that you are so close to success.
ps...if you really do hate your doctor then nothing he does will really help you so you may need to change...there is such a thing as natural affinities or the opposite and you seem to have that with him...change to someone that you will trust and feel comfortable with....Then maybe the healing process can begin for you
This is not your average surgery. It does take a year or more for your body to adjust. Meanwhile you have to make sacrifices with your diet, meds and general lifestyle. Having a j-pouch is not the greatest, but it's better than UC, cancer, being dead and for most people having an external appliance. It will get better. Most important is patience. I would say if you still have a bad taste in your mouth about your surgeon after the dilation surgery, then maybe your should just get someone else. Hopefully you and he just got off to a bad start. Good luck.
Thank You all for your advice and counsel,but i will not live like a second class citizen,unfortunately i discovered too late these operations are a fraud,i felt better when i had ulcerative colitis,should not have listened too my local GI who advised these operations where necessary because i had low grade dysplasia,i researched and found out this is baloney.These operations have made me wish i was dead.
Don't take this the wrong way, because I sincerely mean it in an attempt to help. Just go back to the ostomy if you were ok with it. I've seen enough of your posts to know you don't have the personality and mental disposition to be able to tolerate the trial and error that will be crucial to your getting happy with the pouch. Just save yourself the hassle and go to the end ostomy.

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
Link copied to your clipboard.