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Have appointmet with colorectal surgeon..yippeeeeee!!!

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Ulcerative Colitis
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Posted 5/4/2010 4:00 PM (GMT 0)
    Looked into my options.  Dr. Rombeau is now affiliated with Temple Univ Hospital in Philadelphia...which had terrible reviews mad .  As a matter of fact, their nurses were on strike and just went back to work!  They were rated POOR for in hospital patient survival rates following colorectal surgery...gulp.  Soooo...more research.  Came up with Dr. Robert Fry at Pa. Hospital.  I have an appointment with him for next Tuesday at 2 pm.  At least I got the ball rolling and feel very comfortable with this.  He is head of the colorectal surgery dept.
Posted 5/4/2010 4:03 PM (GMT 0)
Yay for getting in to see someone so soon! That's crazy about the hospital...I'm glad you did your homework and knew not to go to that other hospital. Yikes!
Posted 5/4/2010 4:26 PM (GMT 0)
Yay Christine!! This is a great first step for you on your way to getting more comfortable with the idea of surgery. I am anxious to hear all about the consult next week.

I am just amazed at the ratings at Temple. Wow! Good for you for looking into it and finding an alternative. I will have to remember that if/when I end up looking into surgery (since I figure it is probably a likelihood for me as well at some point in my life).
Posted 5/4/2010 9:27 PM (GMT 0)
Good luck Christine...Let us know how it goes.
Posted 5/5/2010 12:06 AM (GMT 0)
You're taking the bull by the horns. Good for you.
Posted 5/8/2010 6:54 AM (GMT 0)
Oh good luck!!!  My name is Christie,  I haven't been on the forum for a while.  I just wanted to give you my email addy,  I have gone through the surgery and would love to answer any questions,  and just be a support person for ya!!    You can email at (edited, it's in her profile).  Just plz be sure to put something about UC or surgery in the subject line so I don't delete.   Good luck, again!!  

Post Edited By Moderator (fruitgirl) : 5/10/2010 9:47:53 AM (GMT-6)

Posted 5/8/2010 9:57 AM (GMT 0)
I most definitely will email you Christie. My email address is in my profile too. I wrote in your blog. It is very interesting. Makes me think twice whether to go through surgery or not. I have an open mind though and have to weigh the good with the bad. Yesterday, I had a great day! We took our travel trailer down the shore for our daughter to enjoy the weekend down there and will go back on Sunday and stay till Monday. I only had one bowel movement yesterday and was able to walk the boardwalk and have a nice lunch. I am using rectal meds every morning and night even though I have a hard time retaining the cort enemas, I still am trying. The Canasa seems to be giving me some positive results.
Hoping maybe the Humira will "kick in". I am down to 10 mgm of prednisone too. I certainly will not make any rash decisions and only meeting with this surgeon to find out what type of surgery would be best for me. Since it is my rectum that is the culprit and the rest of my colon looks great, I don't think having them reattach my rectum would be to my best advantage, do you? My worse symptom is pressure (that is the only way to describe it) in the rectum when the stool reaches that area and then the urgency. After I go about five times (on a bad day), then relief comes and I feel fine. I had some bleeding about a week ago when I tapered to 10 mgm of pred but I increased my dose to 12.5 for a week and am now down to 10 mgm and still no blood.
Posted 5/8/2010 11:35 AM (GMT 0)
Christine- Those are my symptoms right now exactly. I think the Canasa is giving me a little relief. I just started the proctofoam in the mornings. I had never tried those two before so I am hoping they really kick in.
Posted 5/8/2010 12:14 PM (GMT 0)
Christine
Good luck! I also live in Philadelphia area. I would be interested in knowing about your experence with Dr. Fry and Pennsylvania Hosp. Please keep us informed.
Posted 5/8/2010 12:47 PM (GMT 0)
Christine,

If you consult with any surgeon who recommends leaving the colon and only removing the rectum I would get the hell out of there for a variety of reasons. In fact this might be a good question for you to ask the surgeon, Is it possible to just remove the rectum and keep the colon? Not a good idea.

Sue
Posted 5/8/2010 12:51 PM (GMT 0)
Please do keep us updated -- I am only affected in my rectum and I didn't even know that there was a surgical option for this --
Thanks and best of luck to you--
L
Posted 5/8/2010 12:55 PM (GMT 0)
     I know that is not a good idea.  My GI doctor explained the reasoning behind it...that if they just remove the rectum there is a good chance the inflammation will manifest itself somewhere else in the colon.  My concern is that they will remove the colon and reattach it to the rectum and I don't want that because my rectum is the problem.
Posted 5/8/2010 2:23 PM (GMT 0)
Christine,

Well once again, no surgeon in the US is going to give you the opportunity to remove the colon and keep the rectum. This just isn't standard protocol for UC patients. If it's even suggested leave the office immediately!

Sue
Posted 5/8/2010 3:15 PM (GMT 0)
Hello Christine,  I am glad you read the blog,   but I also want to add that I don't want to encourage or discourage the surgery option.   I think that decision has to be your own.  Whats good for one person,  may not be for the other.   I was sooo scared before my takedown because I was sooo worried with the final outcome.   Did I make the RIGHT decision?  Or not?   I was so worried about being one of those that doesn't do well afterwards.   But to be honest,  now that its said and done,  I think that all I went through is now soooo worth it.   None of the Ulcerative colitis symptoms,  and going day by day wondering if I will start flaring again.   Then,  all those terrible meds.  Anyways,  I'm glad to be giving all the information (good and bad) so I can help UCers make the decision thats right for them. 
Posted 5/8/2010 11:15 PM (GMT 0)
christine-those darn colons know when they are on their way out and get on their best behavior! i dont know how, but a lot of people have posted how once they settled on surgery their UC calmed down! So dont let it trick you, lol.
Posted 5/8/2010 11:22 PM (GMT 0)
     Oh, I won't summerstorm.  I am having a horrible day today...as great as I felt yesterday...that is how bad I feel today.  After going at least half a dozen times this morning, I have terrible cramps, just feel over all yukky.

     The postings are scaring me though about the surgery.   But, like Suebear said, most of the people who get the surgery are out enjoying their life..lol.

Posted 5/9/2010 1:00 AM (GMT 0)
Christine - I would do it ALL again in a second!!! It is SO worth it! I am starting to feel better than I have in YEARS! Good luck, take big breaths and stay hard core!
Posted 5/9/2010 3:50 AM (GMT 0)
whats scaring you?
Posted 5/9/2010 2:28 PM (GMT 0)
     Summerstorm...I read ChristieAnn's blog and Pam's experiences.  That scares me. Anthony had some problems too, but he said he didn't follow doctor's directions.  I follow them to a tee unless they seem farfetched, then I question them.  Maybe because I am a lot older than all of you in here and never had any kind of surgery short of having my tonsils removed when I was five and a d & c back in 71.  I've been very fortunate.  It also sounds like there is a long recovery period for this surgery and a lot to learn post op.  Just sort of boggles my mind a bit.
Posted 5/9/2010 3:10 PM (GMT 0)
there are possible complications, thats true! and a long recovery time.
And i had to think of those also, but this is how i rationalized those things. I figured i could take a chance there would be some complications, or not be happy with surgery. Or i could spend the rest of my life with a disease I knew was making me miserable, taking drugs with known complications, wrecking my body with prednisone and going through periods of losing my hair, gaining and losing huge amounts of weight, my joints were starting to fall apart, my skin was suffering.
I just looked at it like, i know i am miserable now, and yeah i MIGHT be after, but at least i will have tried.
Posted 5/9/2010 3:10 PM (GMT 0)
Oh and when you start to get scared or worried, get out your pro and con list! that always helped me too.
Posted 5/9/2010 4:17 PM (GMT 0)
Have to agree with Summerstorm. There can be complications with any surgery. There are also complications with uncontrolled UC. The drugs can cause complications. Do your pros and cons list. Many many many people live happily without their colons - most more happily that when they had their colons. I have now had 22 operations (I am 34 - most due to accident as a child which resulted in lots of rebuilding for years later). Its scary - but with a good surgeon and hospital, a supportive family and positive outlook, you can take on whatever comes up. I was at the point - and you sounds like you are too - that even the complications would be better than living with the disease. For example, for me, due to my spinal cord injury, there is a higher chance of problems with the JPouch - and I knew going in that I might need a permanent ostomy. I accepted this as a complication and felt, and still feel after having an ostomy for 3 months, that this is FAR preferable to UC. However, for some miraculous reason it is working (knock on wood)!

Its not easy and take time to recover from - but at least you will be on the path to recovery rather than on the path to more drugs and more suffering from a refractory disease.
Posted 5/9/2010 4:47 PM (GMT 0)
Christine- My doctor was going to send me to Penn for a second opinion before I got side tracked with pregnancy thing.  I just looked it up online and see they have a new building and big gi department.  I am going to have him send me also but not for surgery consult.  Just to see if there is anything new I can do that we have been missing.  I am only in DE so it is really close to me. 
Posted 5/9/2010 5:20 PM (GMT 0)
Don't be scared by my experiences. Yes, I did have complications directly related to the surgery but those would all be behind me now just a couple months later. The issues I am having now are because there is something else going on with me that is affecting my small intestine. We haven't figured it out yet. But this is not something that would happen to most people. It's just that some of my "UC" symptoms were problem never related to UC to begin with
Posted 5/9/2010 6:44 PM (GMT 0)
before my procedures, my surgeon reminded me that a good percentage of stories on the web about ostomies & the j-pouch are negative since people frequently go online to complain, vent, and/or try to find solutions to their problems. you often never hear from the many, many people who had successful colon surgeries & recoveries.

just like this forum - when some members achieve remission they often disappear and you never hear from them again (until their next flare-up). if i was brand new to UC, this forum would scare me by reading about all the potential awful symptoms of severe UC and medications i might have to try down the road.

don't worry yourself to death! :-) good luck with everything as always
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