Calling for a surgery consult tomorrow

      Just as I thought...today is bad.  Had a good night's rest but woke up at 6am and had to "go".  As usual, first bowel movement soft, narrow, no blood but somewhat urgent.  Followed by pressure in rectum, four more bowel movements, urgency, BLOOD.  Ok, I am throwing in the towel.  Doesn't seem like the Humira is going to do anything.  Tomorrow morning I am phoning the colorectal surgeon I saw two years ago.  He has an excellent reputation here in south Jersey.  Two years ago he was very reluctant to perform surgery on me and told me basically all the horror stories about the surgery...that there is a long list of complications, I would be "going" more than I was....six to eight times a day..yada yada yada.  Well, at the time, even though I was very sick (just being discharged from the hospital), I left his office thinking maybe I wasn't so bad after all.  My UC was classified as mild/moderate.  He also said that UC sometimes "burns itself out".  Not my case in the past eleven + years though.

     Two months after I saw him, I did have a seven month remission.  However, I started flaring in May of 09 and this has been almost constant.  So, guess I will just bite the bullet.   Can't say I didn't try....6MP, Remicade and now Humira...oh well.  I will also phone my GI doctor and ask him to refer me to a few colorectal surgeons in Philly.

Yo are NOT throwing in the towel!!! That implies you are losing, you are WINNING!!! finally you are kicking that colon to to the curb (literally!) and you bewill be healthy, and free of the drugs, the constant worry of when will this treatment fail, the worry of where a a bathroom is. Please, never think of surgery as giving up!
Good luck and YAY for being healthy soon!

Hi Christine....I totally get where you're coming from.

Let us know how the appointment goes..hopefully, you won't have to wait too long for the consult.

q

ok just wanted to make sure you were looking at this as a good thing!

Christine,

This is good to read! Just wanted to let you know that since you are opting for a permanent ostomy you don't need to find the "most" experienced surgeon. It's only when opting for the jpouch that you want to find someone who has lots of experience. The jpouch surgery is much more complex and needs an expert. A permanent ileo is fairly routine for CR surgeons so I'm sure no matter who you pick you will have an excellent outcome.

Sue

Hi Christine :)

Good luck finding a good surgeon. I really hope that once this is behind you, you say "why the heck did I wait so long"... .lol... I am wishing you the best and looking forward to your updates on things. It's nice to read stories of people who have had the surgery... Like Anthony, I remember in one of his posts saying that he was getting his energy back and was feeling "Psyched"... lol.. that was so good to hear after all the suffering he went through.. I hope you feel "Psyched" too :)

~XOXOXOXO

once you get your appointment, make sure to ask the surgeon for a stoma that sticks out! and when you get ready for your "marking" wear the clothes you normally wear,so that you will get an accurate placement.

I had my third infusion today and I have my next check up with my doctor on the 13th. If I'm not better by then I'm going to ask him to refer me to a surgeon.
Even though 4 months ago he said I should think about surgery, but me being my stubborn self decided to keep on with the medicines.

But I'm feed up at this point in time. I'm 21 and I'm tried of playing cat and mouse with this stupid disease and ready to move on so I can concentrate on my schooling and be able to work at any job I please without worring about the bathroom.

     Thank you all for your encouragement.  I finally got the call back from the nurse at my GI's office.  Just my luck he has hospital rounds all this week, but he did get back to her.  He still wants me to take the Humira injection on Wednesday.  He couldn't come up with a colorectal surgeons name from the Univ of Pa Hospital,...but I did!  LOL.  I googled and came up with a Dr. John Rombeau.  I believe Suebear mentioned his name to me.  Tomorrow I will call Dr. Lichenstein, the GI specialist I saw in Sept at the Univ of Pa Hosp and get him to refer me to Dr. Rombeau.  This may take a waiting period, but heck, I have waited this long. 

Hey Christine,

Have you thought about going to NY at all - there are 2 good hospitals there [Mt. Sinai and NewYork Presbyterian (Cornell)]. The only reason I bring this up is that although I have heard that Dr. Rombeau is one of the best, he might not do laproscopic surgery. I am pretty sure he doesn't for the j-pouch surgeries...not so sure about an ileostomy. Just something to check into and think about! Best of luck.

Hi Christine,
I just wanted to say I'm thinking about you and I think you're making a good decision. You are doing all the research and finding out what is best for you...congratulations on taking the first step! Keep us posted.
:)

Big decision, good for you. Let us know when the surgery is scheduled so we can count down the time along with you!