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Ulcerative Colitis
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Posted 12/2/2007 2:29 AM (GMT 0)
I have had UC for 13 years, my GI has been back and forth if its crohns or UC or just both. Last month went to Cleveland clinic in Ohio for second opinion. I’ve decided to have a surgery consult on Jan 9th. I just became a Registered nurse in 2006 and now I can’t even work!   I want to help others and I can’t even help myself.   Just wondering if anyone else is thinking of surgery???? I’m hoping for the J Pouch!!                                                             nurse42     Lialdia 4tabs/day Prednisone 40mg in Am just started this week Imuran 150mg Folic acid protonix 40mg    
Posted 12/2/2007 2:45 AM (GMT 0)
From what I understand, you need to be sure you have UC and not Crohns before considering surgery. Generally surgery isn't recommended for Crohns because the disease just reappears in another part of the GI tract.

Welcome to the nursing family, and I hope you soon feel up to practicing your new profession.
Posted 12/2/2007 2:47 AM (GMT 0)

You couldn't have selected a better hospital to get a consult.  You might want to check out www.j-pouch.org  There are over 6000 pouchers on that site.  Good luck with the consult!

Sue

Posted 12/2/2007 2:56 AM (GMT 0)
hi Judilyn, I went to Cleveland Clinic and they say 100% its UC but im scared it could be crohns and once they give me the pouch if it turns out to be crohns my GI i have been seeing for 13 years says it will attack my pouch and i will end up with a bag on my side, not looking forward to that! I really want off these drugs!! Nurse42
Posted 12/2/2007 4:03 AM (GMT 0)
it's not bad having a bag, i promise, i have had one since April, and i had been sick for 7 years and 11 months before that, and if i had known how great life was post surgery i would have done it the first day i saw blood!
alot of people iwth chrons have the surgery and do fine, the just usually have to still take some meds, and at least it deals with one of the affected parts, I had UC though, so this was a complete cure for me!
check out the j-pouch site like suebear said, and check out the ostomy site on here, and others that way you will have some personal stories to gather info from. It helped me so much to hear that life was great afterwards. I had already made my decision but reading the stories on here, just helped me to realize that i was doing the right thing, and take away some of hte fear
Posted 12/2/2007 3:10 PM (GMT 0)
I think one of the considerations you need to make,is how many times a day do you go in an average flare,and how long do your flares last?With the j pouch,you still need to go several times a day.This op has obviously given many people a quality of life they otherwise wouldn't have,but some(myself included)don't consider their condition severe enough to make it a viable option.I also hope they can be sure it's UC and not Crohns,otherwise the op will be in vain.Sorry to be a little negative,but these things obviously need considering.
Posted 12/2/2007 9:01 PM (GMT 0)

         Summerstorm thanks for the post! do you mind me asking why you did not consider the j-pounch? I have not been in remission for over a year plus the last 6 years havent done well anyway. I cant stand the meds much longer i hate them. I did go to the j pouch site and wow was it a big help!! 

 
                                                                                                                                                          nurse42

Posted 12/3/2007 11:29 AM (GMT 0)

Hi, I had surgery in 2002, as I could no longer tolerate Imuran. I was supposed to have J-pouch, and was absolutly horrified that I would have to have a "bag" for 6-8 weeks. Well things didn't go according to plan and now after many surgeries I have a permanent ileostomy.  I really cant imagine anything different.  I do know people who have had fantastic results with a j-pouch and people who have had a very ordinary result. In hind site dont leave surgery until you are really sick as this will negativly affect your outcome.  Life with a bag is good, no more leaky, burning bottom, no more accidents , no more being supercareful about what you eat, no more feeling sick!!!! A "unhappy" gut leaks a constant stream of toxins into your blood stream, sapping your energy and making you feel unwell, you become use to it and adapt and think that you are doing ok.

The very small bag is unobtrusive. I swim 2km several times a week, and until starting my nursing traineeship this year, I ran a successful hands on gardening business. 

Happy to answer any queries. Lulu x :-)

Posted 12/3/2007 12:53 PM (GMT 0)
Lulu,Thanks for the post! I have been sick for years this disease is eating me up. I feel terrible every day and i feel like myself and my family deserve a healthly Mom, and frankly I dont want this kinda life anymore. Im considering the J-pouch but really reconsidering the bag I just want it to be over. Your post makes me feel better knowing that there are succcess stories out there. This site has really has helped me its people like you who care enough to share your stories and pass your experiences on to others. you will make a great Nurse, i just became a RN about a year and a half ago I have not done much nursing b/c I have been so sick, cant wait to get back to helping others. Im hoping to try and get into a GI office right where i belong (lol).                                                                                                                                                                                                            Nurse42
Posted 12/3/2007 4:17 PM (GMT 0)
nurse42-i did look at the j-pouch before i decided on the bag, but i chose not to go that way, because i didn't want the two surgeries, which meant two recovery times, I didn't want the period after the takedown where you go to the bathroom 30 times a day for a while. and also, since with the j-pouch many people still have some urgency and have to go 4-8 times anyway,and that didn't solve anythingat all for me. Also, a j-pouch can fail, an ostomy can't.
You can always go into it intending to have a j-pouch and if you like the bag, then you dont have to have your takedown. You can and will have a perfecly normal life wtih a bag, noone will tell, you can eat whatever and go whereever and do whatever. One of the only changes i had to make was that i now put stuff in my left pocket instead of my right. And i take a bag with some supplies when i go places. Not a bigdeal at all!
I put a pic up on the photobucket page, it's called can you tell, and it's two pics of me, oen with the bag, one without, so far, noone, not even the people with ostomies have been able to tell, you can go look and see if youcan tell, that might make you feel better
anyway, whatever you choose, good luck to you
Posted 12/3/2007 4:52 PM (GMT 0)
A note of correction, there is no urgency with a j-pouch. Once the new plumbing has adapted the j-pouch functions just like a rectum. Yes frequency is higher but most of the times the pouch empties is because the person goes to the restroom to urinate and discovers that the pouch needs emptying.

That being said, if surgery for UC is wanted or recommended, the patient really needs to do research on all available options to decide what is best for him/her. There is no perfect option, there are pros and cons of each and it's up to you to determine your lifestyle and what you are willing to live with.

Sue
Posted 12/3/2007 8:23 PM (GMT 0)
Note to Sue and anyone else who may be able to guide me to information: Trying to decide on whether or not to have Jpouch surgery.

In your last post, you advised for the individual patient to research and look at the pros and cons as it pertains on a personal level. I couldn't agree with you more, however, I am having an extremely difficult time trying to decide whether or not I should have Jpouch surgery.

I have had UC for 10 years with three major flare ups that required two hospitalizations. Each was about two weeks in length followed by a treatment of prednisone, to which my disease responded very well, however, the rest of me did not. Prednisone and I do not get along. In between, you wouldn't know I have UC. I pretty much eat what I want, and I have 2 to 3, leaning more so to the 2, bowel movements per day when in remission. In conversation with my UC doctor, he advised me to have the surgery. However, I also have a doctor caring for my arthritis, and he advised me to pursue the remicade and tnf blocking medications currently out there.

Because my remissions are relatively pain and bowel movement free. I have had reservations about Jpouch surgery and the implications that come with it. I may be living on false hope because of my quiet times, and I also know that going into surgery when you are in better health ensures a better recovery. So my dilemma is in trying to come to a conclusion as to whether or not to have the surgery.

So my question to all, and hopefully you can assist...Can you guide me to a body of information specific or otherwise to my concerns to help me make my decision? I would be most appreciative.

Sincerest of thanks,
Dominique

4800mg Asacol
100 mg Imurane
350mg Remicade
75 mg Alendronate
Posted 12/4/2007 12:34 AM (GMT 0)
I am in the same boat about whether or not to have surgery. Right now I am fine. I eat anything I want & have not had a flare in 2 years. BUT I have to occasional urgency which I hate. I have 2 young boys & I am finding myself hesitating about doing certain activities with them because of not having a bathroom close by. I am feeling fine but I am tired of my life being controled by my colon.

Posted 12/4/2007 3:38 AM (GMT 0)
sorry Suebear, when i was discussing with my GI that is the info he gave me, but since you have one, you would know best, lol.
Winter being tired of being hampered by your disease it to me, the best reason. It will give you your life back!
Posted 12/4/2007 2:36 PM (GMT 0)
Wow... I went to the jpouch site and those guys appear to be suffering worse than we are.. They seem to have some MAJOR problems...
Posted 12/4/2007 8:36 PM (GMT 0)
There are over 6000 members on the jpouch.org website. The vast majority are out living life. Most that post are either having problems or have scheduled surgery, or had surgery and are in the early days of recovery. It's similar to this site, most that post here are having problems, those that are in remission are living life.

Sue
Posted 12/5/2007 9:09 PM (GMT 0)
I met with a surgeon a couple of months ago when I was in the Hospital. He offered me a 1-step Laproscopic J-pouch. He prefers to do 1-steps because the patient will only be under for one surgery. He told me that J-pouch failure rates with him is a little over 1% and reproductive issues are a little over 1% too. He insisted that I go to a sperm bank and also talk to some of his patients who have had the same surgery.... he said that he wants me to talk to some of the patients who had issues with their surgeries too.... he didn't want me to be fooled that just because it was laproscopic that it wouldn't be a major surgery with a long recovery peroid (about 3 months) and 12 months until the J-pouch is fully functioning.

The reason that I can have the 1-step is that I have not used Prednisone in a couple of years (I do not know the exact time requirement of not using prednisone).

--Keith
Posted 12/6/2007 3:09 AM (GMT 0)
Keith, Thanks for that post wow i had no idea that the success rate was that good. I need surgery but man  its so scary but im gonna do it!! I just started predisone the 29th of Nov. and my surgery consult is the 9th of Jan, I hope i dont have to wait due to the predisone. I will be at the Cleveland Clinic in Ohio about 4 hours from my home town kinda makes me nervous to be away from home. Any idea on how long the hospital stay is?   Thanks Nurse42
Posted 12/6/2007 4:09 AM (GMT 0)
i was on pred when i had my surgery, it just makes it harder to heal. i was on like 15mg a day, and when i went in they upped it to 20mg for some reason, and then when they sent me home the taper was alot longer than usual, but i got tired of taking it and just quit, but i do not reccomend that!
good luck with your sugery
Posted 12/6/2007 4:11 AM (GMT 0)
Nurse42,

J-pouches have come along way over the years but it's still major surgery. Every surgeon has different success rates so chose your surgeon wisely and ask lots of questions of the surgeon. My GI highly recommend the surgeon (and I really respect my GI's opinion) that I will be using but I also asked a few of the GI nurses who treated me and who they would recommend for a surgeon and why they would recommend the surgeon. All their opinions were unanimous so I am confident in my decision of who will be my surgeon.

--Keith
Posted 12/8/2007 9:09 AM (GMT 0)
WEll,  I also am in the process of considering surgery.      I just had my consult with a general surgeon.   My GI doc told me that he's had patients that wished they got the surgery earlier then they did, and he's had patients that wished they held onto their colon longer,  then went on to say, that no one can really tell ya what to do,  it's ideally up to you.    The general surgeon reviewed my history pretty thoroughly, and his recommendation was to get the surgery,  and his reasonings were as follows: 

1.  My age.  He said that because I"m so young, that with every year of having UC,  my risk of getting colon cancer increases.  (No colon = no colon cancer!)

2. My diabetes.  The chronic inflammation of UC  will increase blood sugars,  and with already having Diabetes,  don't need the increase in blood sugars.

3.  My options for med therapy is limited.  I have already tried so many UC meds, and the fact that they haven't been controlling the flares or I've not tolerated well with adverse reactions, that surgery would be indicated.

4.  the biopsy results from my flex sig in the hospital.    It was showing possible dysplasia. (altho, they did favor it being reactive changes)

5.  The fact that I"m proving to be prednisone-dependant.   The steroids are very bad on your whole body,  so it would benefit me to not have to take the darn stuff anymore

Also,  my GI doc said that I most likely would be able to get off all the UC meds I'm on...that in itself is such a nice thought.  Some of these meds are scaring the hec out of me.    They sound to be so bad for your body and have there own risk of cancer.  Anyways,  this decision has really been occupying my mind!! The surgeon is now referring me to a colo-rectal surgeon that does the procedure laparoscopically. So, we'll see where this takes me!   I hope everyone else is able to arrive at the best decision for them! Good luck you all!!  :-)

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