Having surgery on the 20th Feb

Saw the surgeon; dragged my parents along for moral support >_>.

The operation is a tad less radical than previously proposed. I will have my colon and my terminal ileum removed, but the rectum will be left behind. The surgeon said she wanted to do the operation in two stages. She said it was safer because I've been on so much Pred and that slows down the healing process. This also leaves the door open for a potential ileorectal anastomosis in the future, which is the joining of the ileum to the rectum. I'll never have a normal bowel again, but at least I might not need to always have an external bag.

The operation is definitely much sooner than expected: I was expecting a waiting time of 1-2 months. The surgeon asked me what date I would like and I said 'as soon as possible', so she offered me the 20th February. I must have looked or sounded a bit startled by that, 'cos the surgeon then offered another date for the 4th March instead! >_>. I must admit, I did think about taking the later date for a second or two, but turned it down. Would be an absolute waste of time: all I would achieve from putting it off is spending two additional weeks on a high dose of Pred.

So... For better or worse, I'm committed to surgery now. First surgery I've ever had in my life too. Feel relieved but a bit stunned still, I think.

Good luck NCOT! That sounds very intriguing about having the possibility of a jpouch with crohns- My UC is too indeterminate for my liking but if crohns is nit disqualifying for a good jpouch, that is terrific news- wither way hooe it all goes very smoothly and that things will be much better in due course,

You've been considering surgery for a long time...I'm glad you are finally going for it. I would be really anxious too, but you may as well get it over with...I don't think more time will make things any easier. Hang in there!

Good for you that that soon you will be out of the pain and misery of this DD! What did the surgeon mean by doing the surgery in two steps?

I will say a few extra prayers for you to have a very successful and painless surgery! You to be able to get on with your life and leave all all the pain and suffering from crohns in the rear view mirror!

pmedic - Thanks muchly :p

Yeah, I didn't think I had explained the two-step surgery very well >_<. Basically, the first step would consist of removing the colon and the terminal ileum and forming an ileostomy. The second step is optional, depending on how things go, but that would consist of joining the ileum to the rectum, so I would no longer have an ileostomy. Either way I'll be colon-less, but with the first op I'd have an external bag and with the second op I wouldn't. Hope that makes it a bit clearer.

Count Tuscany - Well I certainly didn't cut to the chase. But I'd say the doorway to surgery was opened in the autumn of 2011. I was hospitalised for 2 weeks with a severe flare-up (an abdominal x-ray said I had a toxic megacolon). Surgeons apparently wanted to operate then, gastros argued for giving Remicade longer to work, since I had only recently started it. Pred saved my arse, so I got out of hospital surgery-free. Cue a year of trying to get off Pred, relapsing, ending up back in hospital and on the Pred again.

In the last year, I've also tried methotrexate and Humira and neither of those worked either. I've tried every standard Crohn's med and a couple of liquid diets. In theory there are experimental treatments I could try, for example anti-MAP antibiotics or apharesis adacolumn, but in practice I don't have the will. It'd take months to get onto anything experimental, months to wait to see if it's going to work or not, and in the meantime I'd have to stay on a high dose of Pred all the while.

If you want to have surgery, you should talk to your GI doc about it. I have no idea about your situation, can't really offer advice. GIs do tend to be conservative about surgery when it comes to Crohn's and not without reason (it comes back); surgeons seem far more cheerful about snipping bits out of you. You can ask for a referral to a colorectal surgeon.

Good luck to you NCOT! I hope this leads to years of relief!

Good luck, NCOT! I think it's a great idea to do the 2 step procedure - it leaves you w/potentially more options.

Will be thinking good thoughts for you on the 20th .

Cheers, nenagirl and Tom :p

Think the main reason the surgeon is doing it in two steps as well is because it's safer. She said something about pelvic surgery - can't quite remember what - but presumably the rectum is close to the pelvic area, or something.

@Tom - Well, there is such a thing as Crohn's colitis, which is Crohn's of the colon. That's what I have, but with the end of my small bowel affected as well. Some folks with CC just have it in the colon only; no small bowel involvment at all - obviously, they're the most likely candidates for having their colons removed.

Toxic Megacolon is when your colon goes rogue on you >_>. I was massively ill, with fevers reaching 40C (104F) and a CRP of 350. IV steroids worked, but they were only a stopgap in retrospect: although I've never been as ill since then, my Crohn's took a permanent turn for the worse.

Good Luck NiceCupOfTea...I also have CC, so will be following your posts for updates. I am also very excited for you and will keep my fingers crossed for a happy outcome!

I haven't been keeping up much on here lately, but I saw your thread and wanted to wish you the best in your surgery. Good luck!