Posting from the Surgeon's Office

Well, here I am. I waved at my infusion nurses on the way over.

Hi! How is your remicade going? I've had it done twice now, less urgency but still a mess down there.

I don't think surgery is going to give me my life back, because I feel like I have a life. I can't do quite as much as I want, but I just took a nice vacation and didn't miss out on anything I really wanted to do. I work 40 - 50 hours a week. I teach on Saturdays. I feel like surgery and recovery is going to wipe out this year, and I don't understand why I would choose to do that to myself.

I have been on Remicade since August of 2012. I don't think it does much. I was on Remicade and 60 mg of prednisone in March of 2013. I think the improvement and the reason I'm able to be off of steroids is the azathioprine. I respond to changes in azathioprine dosages, but nothing really seems to happen with Remicade. I hope I can get off of it entirely this year.

I get that it is literally a life saving procedure, and I am glad to know it is an option if things get that bad. I know I probably will have surgery some day. I just don't agree with my doctor that I have to have it RIGHT NOW.

Hey Tornado, you know what? I've got the same thing as you, narrowing/strictures, potential blockages. I just had colonoscopy #4 this AM, & it was a mess, much worse than last year's, more inflamed, more ulcerated, much narrower... my GI could barely fit the scope tube thru! Heck no, I don't want surgery either... I read your thread on the ostomy forum... But I don't want a perforation or blockage either, I'm sick of dealing with multiple meds (have been having a nightmare trying to get my Humira from suck-ass Accredo), tired of being tired... Clearly the meds are not working as well as they should be. I hope your appt. went well- I'll be following in your footsteps soon enough for my 3rd surgery consult, I imagine. I always liked the consults, the surgeons really make it out to be no big deal, it's just another operation our crazy bodies sometimes need. Re. the defeat issue... at this point I'm more inclined to think that holding onto a diseased organ is more of a defeat than getting it out! Let's be real, we can't cure ourselves.

"Getting UC was losing a battle" -totally disagree, It's not what happens, but how we react to it that matters. I will not be defined by a disease I happen to have. Life goes on, and I'm living proof that surgery is not always the answer.

No doubt deciding to have surgery is so much easier when you have zero quality of life and are at death's door. But it sounds like you are doing okay at the moment and able to function.

It's a huge thing and you have to be ready for it. It took me a good two years to come to terms with the fact that I just had to have surgery. I would never want to be in an emergency situation (I came close) because that makes everything more complicated.

Good luck with all your decisions.

To me, having surgery was a defeat. I don't know how I'd be feeling about it right now if I'd had UC instead of Crohn's, because right now I would probably have a j-pouch instead of a wretched ileostomy that I almost, but not quite, loathe.

Just felt like my surgery was the final straw in some ways: struggled for years with the Crohn's, then I found out I couldn't even have a goddarn resection, I had to have my whole colon removed. It was a psychological blow.

I was back to 10 mile walks after 3 weeks. Two months after surgery I went camping and hiking in the Sierra. At 3 months I traveled through Europe and at six months I did a half marathon.

I couldn't have done any of that and I only had one surgery.

Have to throw in the polar opposite case of NCOT's in terms of satisfaction with surgery-- had UC (was a bit indeterminate before surgery, was totally consistent with UC post surgery biopsy) to be sure, but anyway, I chose ileo over jpouch (technically I could still geta. Jpouch but I simply dont want one, and somedude is no longer here to call me crazy) and couldnt be happier-- quality of life is now basically the same as pre-UC for me, other than that I need to spend a couple minutes changing my pouch every 5 days. Probably fewer visits to the bathroom (no1s and 2s totalled) and time spent on the toilet than pre-UC, no operational issues at all, and enjoying all acitivities Without restriction. Zero psychological or image problems for me with having a stoma (I exoected i'd have some but after the surgery it all turned out to be an anticlimax for me) and it is invisible to others unless I go commando. It did help that my wife had zero issues with the idea from the get go. My heart goes out to those like nice Cuppa who have technical problems with their setup... Hope you get some answers cuppa- keeo being the squeeky wheel to your stoma nurses.

Post Edited (Probiotic) : 1/17/2014 4:07:33 PM (GMT-7)

I'm getting a bit off topic from tornado's original truth but...

Sorry, I may be a bit blase about surgery (and I'm honestly sorry about that). The truth is I have faced those complications everyone is worried about.

I had a colectomy. I had a stoma die, I almost died, I currently have two stomas (one's getting reversed on Thursday, wahoo!). I take proactive steps with my health. If I think I have a blockage or a mechanical problem, I go to the ER. I know the signs. When my stoma died, I got flown 45 minutes (by helicopter) to Cleveland Clinic because that's where my surgeons are. I had emergency surgery. You do have a choice of where you go and who operates if you catch things early enough. It's the very very rare case in which you will need to be operated on "right this minute." You just have to have a relationship with a surgeon beforehand (which tornado now has).

With that said, I am worried about my upcoming surgery because you never know what can happen. It is surgery.

Also, unfortunately this disease has defined me for the past six months. I couldn't work, I need IV nutrition, and two stomas (especially a high output one) are alot of upkeep. I have a nurse visit once a week. I have to be on constant alert for infections on my IV line. I can't shower and get that wet. I'm on IV nutrition for 12 hours a day. I can't really eat fruits, vegetables, and sugar. My remaining 8 inches of colon bleeds every day. My life currently revolves around limitations and illnesses caused by UC, UC medications, or UC surgery. UC pwned me.

I'm excited about surgery because I want my life back. In the next couple months I hope to transition to having UC, not something that has me. I'm pretty upbeat about things in general and it's not like I gave up to the disease. I've been described by numerous people as "determined" and "strong." UC having me is just the reality of my situation right now so yes, getting UC was losing the battle.

Obviously I'm an extreme case. But having the disease define you is not necessarily giving up hope.

How many j-pouches has he done?

That's a super bonus if the surgeon you like and choose does a two step laparoscopically. You get it done faster and recovery is easier with lapo. Obviously speed isn't the priority here...a skilled surgeon is...but if you can have all of it then that's terrific. Start to finish for me was a little over 3 months then it was back to life as usual.

Eva Lou said...
I've yet to find an ethical colo-rectal surgeon who will do a j-pouch with an RV fistula.

The word "ethical" is important here. If you had enough time and money, I'm sure you could eventually find a colorectal surgeon willing to give you a j-pouch, even if you had to travel abroad for it. But any surgeon with an ounce of integrity wouldn't do it.

Just like I don't think I'd find any surgeon on the NHS who would give me a j-pouch. And I didn't even have a fistula or perianal disease (apart from an agonising fissure...). I might actually have been a suitable candidate if my terminal ileum had been disease-free, but in fact I had Crohn's and a rather bad stricture there. I asked my surgeon about a j-pouch anyway, because I wanted to see what she said: she said it would basically waste another 4-5 years of my life; a year to have the surgeries, a couple of years dealing with fistulas and Crohn's in the j-pouch, then another year to have surgery to revert back to an ileostomy.

That answer has scared me off the only reversal operation I might be able to have: an ileorectal anastomosis: That's a simpler operation where the ileum is connected directly to the rectum. Unfortunately a rectal fistula would also rule that one out for you.

I couldn't in all honesty recommend colon resection either. It works quite well for those Crohn's folks who only have active disease in the right side of their colon; their ileum is hooked up to their remaining colon. But left-sided segmental resection is so unsuccessful in UC, it's not even done anymore: I suspect the same would be true of left-sided Crohn's colitis as well.

The only other thing I can think of is to have a diversionary temporary ostomy. That's sometimes done in Crohn's to allow a surgical join to heal, especially after emergency surgery. But I think diversions can also be done for severe perianal or rectal disease. My whole colon was affected, so a diversion was never really on the cards for me.

Otherwise.... yeah, any surgery for you is bound to lead to a permanent ileo :-/

Of course, once you have an ileo, you may be more like Pro than me. Before his surgery, he asked 1000 questions on the Ostomy board and ordered sample bags from ostomy companies and half-filled them with oatmeal to get a feel of what wearing a bag with output would be like. At the time I did think it was overkill, but in the end Pro had the last laugh. So, maybe if you followed his example, you would be better prepared and happier with the final outcome?