Benefits of total colectomy

[corker77]

I have recently decided to go ahead and have surgery. I had a total colectomy in April 2010 (no bags or pouches at all), and now on January 25, 2011 I will have an ileostomy. I can't wait!!!!! I have been crippled- yes- crippled with crohn's disease since 2001 and I've had enough. I've been on TONS of meds and nothing ever works, or only for a short period of time. I have been putting any kind of surgery to the side for so long I lost sight of the real issue-getting my life back! I have a 4 year old son that I can honestly say I have NEVER been able to fully enjoy. I will never get that time back, and the thought of losing one more minute sickens me more. I have never Christmas shopped for him, played in the snow, played with him on the floor, swim in our pool, take him to parks, bike rides, trick-or-treating etc. I have done some of that some of the time, but never all or any of it consistently. I am laying in bed now, sick with fistulas, joint pain, and a general flare. His behavior has changed considerably any time I get to this point , which is 98% of the time. I regret not having surgery sooner, and I know I can get no lower than this...just waiting for surgery, yet trying to make the most of the holidays for him before surgery. He (and I) deserve some normalcy. I am not, nor have I been, the person I was and want to be, my son is missing so much of me and vice versa. This hell needs to end for us, and it will soon, the only way from here is up. To anyone contemplating surgery-just do it! It's never going to sound appealing to have a bag over the choice of not having one, but don't waste precious time taking too long to decide. Most likely you'll need surgery at some point in life anyway and it can at least be on your terms, and not an emergency situation where things could turn out much worse. If anyone has any advice for me getting through a Michigan, February, recovery (if you live in Michigan you'll understand) or general tips, I would appreciate it. I am overweight so to me that's an extra challenge/concern with a bag and it's maintenance. Don't ask how I got so lucky to have chronic diarrhea, pain, bleeding, nausea, etc., but still manage to be a fatty!? Oh well, one problem at a time. Hopefully I'll get things back in order with the return of a better quality of life!:thumleft:

 

[5 iron]

Corker can't help ya with the Michigan winter being a Califorina boy, I can tell your ready for the surgery,lots of folks on this forum have had this surgery and they have got their life back, and so will you, Good Luck finger crossed.

Steve
Resection July 2010 doing fine
Current Med is 6mp

 

[Tay]

Corker
I can empathise with you. I developed fistula between my rectum and bladder and also 7 sites onto my buttocks - agony! Put up with this for years because of the fear of surgery, bag etc. Eventually gave in and had a pan procto collectomy with a permanent ileostomy. Have been tons better since - although the site of the fistulae took a long time to heal! The pain associated with the fistula, expecially before they burst through and exit is unbelievable! Check out Dansac ostomy products - I find them the best.
Good luck and very best wishes.

 

[corker77]

Thank you 5 iron & Tay, it always means a lot to hear from others who can personally relate to you and take time to lend an ear a give advice and well wishes. I will take all the advice given-really. I wish you both continuing good health and a big THANKS!!! P.S. Fistula pain is the worst pain in the world...and I've had my share of pain, there are like 20 different kinds of pain and they are all wicked! (my fistula is near my rectum exiting around my anus-double yuck!!):stinks:
Ditto in advance to members that comment or read my post!:holidays:

 

[CDDad]

Hi Corker,
I feel your pain. I felt the same way about my 2 younger kids when I was going through my worst time. My fistula never hurt that bad, but when I had a drainage seton installed, I knew I was near rock bottom (um, plus the 15 bathroom trips). Those days make me shudder. One wrong pull on those strings while cleaning up was so painful!

Anyway, I really hope this is the answer for you. Are you also having your anus and rectum removed?

If so, very tough surgery, but so worth it for me 3 months later! Just have to endure and get through recovery.

 

[corker77]

Thanks CDDad! I also have a seton, I'm down to one from two. OUCH is right when you grab a hold of a string by mistake. I am not having my anus or rectum removed as of now because there is hope that the redirection of poop will help clear things up, but not ever heal them. Just a prediction from the surgeon, hopefully an accurate one as far as feeling better. I have read many of your threads and have looked on with great admiration for your strength, and I believe most importantly, a GREAT attitude. Hopefully people like you can help us and others to fight this disease once and for all. At Least endure what it has in store for us with great strides. Thanks again & stay strong (healthy too!)

 

[Nyx]

I can give you some advice regarding recovery during the winter in Michigan (I'm in central Ontario and had my surgery last December...my Oscar is almost a year old already!!). I just stayed in, walked up and down my stairs for exercise and to gain my strength back. If I had to go anywhere I made sure I went with someone (the first 3 weeks I was very wobbly, and wobbly with a snow situation is not good!) and had a ride. Besides that, just rest and heal. And eat!! Oh the eating! I remember thinking how good popcorn tasted the first time I had it after surgery...and there was no pain! It was awesome!

I hope your surgery gives you the life back that it did me. You'll be amazed Living with a bag really isn't that bad..not at all.

Good luck!!

 

[Club]

Hey Corker77
Our stories sound quite similar but just diagnosed with Crohn's after 16 years post total colectomy. Have just started enticing and imuran. Having work up done in case these meds don't work and I will be trying humira. Feeling angry and defeated with getting this diagnosis after thinking I was cures from total colectomy for UC diagnosis!

 

[Club]

I meant entorcort. Silly spell checker! Lol!

 

[2thFairy]

Hey Corker77
Our stories sound quite similar but just diagnosed with Crohn's after 16 years post total colectomy. Have just started enticing and imuran. Having work up done in case these meds don't work and I will be trying humira. Feeling angry and defeated with getting this diagnosis after thinking I was cures from total colectomy for UC diagnosis!

But, you DID get 16 good years in between, right? :kiss:

 

[scanners20]

how did you decide it was time for surgery?? I have Crohns and I have had it for 10 yrs and I am going to the bathroom like 6 times or more just about every day... There r no medications that really work for me... i just don't know what to do anymore..