HEY ALL!!!!! post-surgery update

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Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/6/2009 11:03 PM (GMT -6)   
Hey everyone,
I used to frequent this board....frequently. tongue Now i go to the ostomy board. I've moved on.......but I wanted to say HI! and to let you know what's goin' on.
I had my total colectomy on 12/19/09. I had some complications (it's on my signature-abridged). BUT I'm finally on the road to recovery and I feel GREAT! I'm almost off all meds.
I don't take asacol anymore. I'm almost off pred.-my 2nd surgeon is having me do a sLoooooW taper b/c of the inf. and inflammation from peritonitis and 2nd surgery.
I did add a new med that I HOPE is temporary-coumadin. But I won't know until I see the hematologist on 2/18. but I was having to do lovonox shots and coumadin is way better-well not as safe, but not as painful! I'm a wuss for shots. smhair
AND GUESS WHAT-the best news-I can eat whatever I want! I was on such a bland diet to control my u/c. I hadn't had real pizza or ice cream in......years. and now I eat whatever I want!
I'm not in pain (well not u/c gut pain-but am still in post-surgery "recovery" pain), not nauseated, not bleeding from me bum, not uncomfortable from gas, not up 15x at night to poo, and not pooing 10x day!
I'm not gonna lie. It's an adjustment and there are other issues now. I've had ups and downs. But I'm getting the hang of things and it's really NOT SO BAD. It's much better than I imagined. AND I feel so good. I feel like yelling "GET SURGERY-you'll feel better" but i know it's not the best option for everyone. It was really really hard for me to make the decision, but I knew I'd get cancer b/c it was so bad. The surgeon told me the colon looked very bad. Actually my ostomy output is thicker than my poo has been in a couple of years. I'd been through enough.
And the bags are way better than i thought. I can still get a j-pouch, but I'm not sure I will b/c I feel good and I don't know if I want to open that can of worms.

I hope they find a cure and none of you have to make the very tough-not-to-be-taken-lightly decision to have your insides turned to outsides. But if you're contemplating it now, there is a light at the end of the tunnel.

Good Luck to all and take care. You can always visit us on the ostomy site if you have questions about surgery!!! And I might still stop by and be nosey.

smilewinkgrin Chassity
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."

Post Edited (Chasblah) : 2/7/2009 1:29:55 PM (GMT-7)


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 2/6/2009 11:05 PM (GMT -6)   
I am so happy you're doing better and you no longer have UC!!!!!

Enjoy your new life : )
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 3X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/7/2009 1:50 AM (GMT -6)   
Hi
I am very happy to know that you are doing well. God bless you. Take care and enjoy life. Eat all your favourite foods. Have fun.
Cheers.
PSA
Diagnosed UC October 1989
Had J Pouch November 2005
J Pouch is OK but other related problems like incisional hernia and fistulas on bum.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16728
   Posted 2/7/2009 2:59 PM (GMT -6)   
I am so happy for you. You sound so encouraging and full of energy. I know my journey has just begun but when the time comes, I would definitely consider surgery. I don't want to be dependent on pills forever. I feel fortunate that my UC is somewhat under control for right now. Tomorrow is another story. Hope you continue feeling better.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/7/2009 6:46 PM (GMT -6)   
What a relief that must be. So sorry you had such a rough holiday season!
Can you decide on jpouch much later?
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/8/2009 4:00 PM (GMT -6)   
Yes it was rough. But I'm getting better every day.
I've decided to wait on the jpouch b/c it decreases fertility so much and my husband and I want to have more kids. So, my plan is to have more with an ileostomy. Then in a few years, when I'm done poppin' babies, THINK about having a pouch done.
My surgeon told me that there is no hurry. He said I could even wait 5 years. I still have 12cm of rectum. It could still flare and have problems, but so far so good! One thing I'm not sure about is if I have to get my rectum scoped. Probably, don't you think? I could still get rectal caner. I go see my GI on Tues, so I'll ask. If I don't get a jpouch, they did say I'd have to have the rectum taken out and anus sewn up so then I won't have probs. It really bothers me to think about having that done. I don't want a barbie butt. Seems too weird.
I'm glad I don't have to decide for a while. At this point I'd say no. And I may get very used my ostomy. There are things I don't like about it, but I may get used to those too. I'm glad I had surgery and I have lots of time to decide. I like having options.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."

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