Is that the right surgical option? I'm confused :(

[Xeladne]

is that the right surgical option? I'm confused

yesterday I had my first whole colonscopy (in ten years) and bad news.
my entire colon is inflamed. my entire ileum is normal (healthy).
but my doctor says is 75% crohn and not uc.
and he's saying that after having tried every therapeutic options included humira, with no results, I have to surgery.

the fact is that he wants me to have a colectomy and keep the rectum.

he wants to put me an ostomy and he's saying that I will wait for the rectum to be in nice shape then reconnect my ileum to the rectum.

but my rectum is too bad I have doubts it could be cured, but the doctor says that having crohns I can't have the j-pouch, although my ileum is good. the anus is good and I don't have any complication (fistula, strictures and so on), just ulcers and pseudopolyps.

i would like two things from this surgery:

1) exclude the risk of a permanent ostomy (i'm just 30)
2) be able to have some continence, a thing I don't have actually now.

but please can you tell me your experience, if there is someone who had the same surgical treatment?

 

[Crohn's 35]

:welcome: to the forum. Just my opinion, I would get a second opinion. You have to be 100% sure. Once it is gone you can't get it back. I have had my Ileum removed twice but they were sure. Hope you seek the second opinion, I know you could have problems with that in Italy but I don't know. What is your instincts tell you , you are usually right! Let us know how you make out ok?

 

[Jessi]

Hi Xeladne and welcome! I won't be able to answer your question as I haven't had any surgery done as of yet, but maybe you could ask our "experts" on the surgery sub-forum here http://www.crohnsforum.com/forumdisplay.php?f=71 or our stoma sub-forum here http://www.crohnsforum.com/forumdisplay.php?f=46.

I do agree with Pen, though. I'd seek out a second opinion and go with your instincts. It's a big undertaking, but it could do you a lot of good.

Whichever you choose, good luck. :hug: I hope you hang out with us often.

 

[dragonfly]

hey xeladne!!! i have had the reverse surgery, though at the time they thought i had UC so the removal of my entire colon was supossed to cure me but after 3 months when they "put me back together" they decided it was crohns not UC. i have a j-pouch, ive had it for 17 years now! its been through 2 pregnancies though the doctors thought it may not handle the pressure, both were high risk and both my girls were delivered via c-section. the problem i am facing now is during my last colonscopy/MRI...well they call it exploratory since i dont have a colon....they found my bag/j-pouch is starting to pullaway from my rectum causing inflamation, fistulas and much unwanted trouble! my choices where try a "pull-down" surgery where they would try to pull the pouch down overtop the bad and fix it but that was a 50/50 chance of success and if it fails then i would have no choice but to have a premanent colostomy (i'm 31 and dont want it yet), or try remicade and cross my fingers. so i'm due for my 4th dose this friday and then another MRI the week before christmas to see if its helping at all. i agree with the others and 2nd opinion is never a bad thing!! i wish you the best of luck with whatever you decide and please do keep us updated!!

 

[xJillx]

Hi and welcome. I agree with Pen, you should seek a second opinion. Surgery is serious stuff, and you want to be sure you are making the right decision.

If you do need to have surgery, I hope it goes well and you get the relief you want. To be honest, many are very happy after getting the procedure done and report that they now have their lives back; no more being controlled by frequent and unexpected bathroom trips. Many even put having a reversal on hold! I hope you'll be just as happy with the results.

Good luck.