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Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 12/30/2008 6:03 PM (GMT -6)   
So the last time I posted I was about to have colectomy surgery (on 12/19) and I was scared about it. I didn't realize that I my fears were not unfounded!!! I thought I was just being paranoid. I should have listened to my gut (no pun intended)
I live in KC, MO, but I traveled to St. Louis to have the surgery b/c the surgeon there was an expert in laproscopic technique and would be performing a 3-part surgery (first take out colon; then in a few years make a j-pouch and later reconnect). (a few years ago I
This was planned.
Well the best laid plans............
The way I understood the surgery was that he would take out all of the colon and leave just the anus b/c he said leaving anything else was unnecessary and old fashioned and the j-pouch would function well without the rectum.
But I apparently misunderstood b/c when I woke up, I was informed I still had 12 cm of rectum b/c he couldn't take that until it was time to reconnect. My husband and I were surprised by this news b/c it wasn't how we thought it was going to go. He said I could still pass mucus and possibly have a flare in the remaining rectum, but all would calm down eventually. OK, fine No Big Deal. Just a small bump in the road to health.
So I recovered and left the hospital after about 5 days, on 12/23. We stayed another day in St. Louis and left for KC on 12/24. I felt fine after the trip home except a little tired and worn out. My husbands family usually has Christmas Eve dinner together, but since I was exhausted, I decided to skip it and stay home to rest. While I was resting, I was doing some reading about my new little ostomy buddy (which I thought I was getting the hang of) and started to have some pain. The pain quickly intensified and the pain meds didn't help at all! I hurt so badly that I called my husband home and my mom over (she lives a few blocks away).
By the time they arrived, I was shaking and in so much pain, I told them to call 911 b/c I didn't even think I'd survive the car ride to the hospital which is about 5 min. from my house and frankly I just didn't want to move. My husband took my temp. and it was only 99. something, not really a fever (yet).
I spent about an hour in ER while they tried to find veins to give me pain meds and start IV's (my veins were destroyed b/c of hospital stay), They finally put one in my jugular (they were desperate and so was I). Then I don't remember much until I woke up from my second surgery.
They had done a ct scan and found abscesses all over my abdomen and had to open me back up to clean me out. They also had to remove another 8 in.of sm. intestine and reassign my ostomy to the other side of my belly (it was on right and now on left). I was critically ill for about 3 days and am still in the hospital. The surgeon who saved my life wants me to stay a couple more days to make sure all is ok. I'm fine with that b/c I don't want to have to come back. And to top it off, my rectal "stump" is bleeding.
My Birthday is tomorrow and so I will have spent Christmas and my birthday in the hospital. I am so thankful to GOD that I am alive, but I regret making the decision to do this in the first place.
I really hope things get better.
Just thought I'd update you guys.
Happy New Year. shakehead
27 yrs. old. married with one beautiful daughter (born 11/20/07)-diagnosed with severe pancolitis u/c 2002 and have been in a "flare" since 2004-will have colectomy Dec. 19th, 2008 (1st step in 3-part j-pouch) Pred, Asacol, B shots, prenatal vitamin, and carafate (temporarily!!!!!! he he he)

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 12/30/2008 6:11 PM (GMT -6)   
Surgery is not always without complications unfortunately and it sounds as if you have had your fair share!!  Just be assured that this does not set you up for a bad outcome.  Keep up with your great attitude.  It will get better but it's going to take time.  Enjoy the remainder of the holidays and keep visualizing a better future.
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 12/30/2008 7:58 PM (GMT -6)   
Chasblah--don't get discouraged!!!  I had some complications with my proctocolectomy last February and ended up with 3 hospital stays...BUT it is worth it in the end!  Be thankful that you were able to have everything taken care of and you are on the road to better things.  I know spending your birthday in the hospital sux (been there, too) but you are there for a good reason...YOU!  Take care and be well and you can always pretend your birthday is the day after you get home!!! smilewinkgrin

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 12/30/2008 9:15 PM (GMT -6)   

Right now everything kinda of sux for you, right? But, to be honest, if you Had NOT had the surgery, you wouldn't even have the opportunity to feel better at all. So I guess what I am saying is that you should keep your chin up, think positive thoughts, be patient and we will all send our positive vibes your way. Wishing you the best and better tomorrows,
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Regular Member

Date Joined Dec 2008
Total Posts : 147
   Posted 12/30/2008 10:33 PM (GMT -6)   
you know it could be alot worse. If you want to you can go to and then you'll know just how worse it could be, the web site is about an awful disease called Batten Disease
thanks, Dusti

Diagnosed with colonic inertia at 13 years old, had my colon removed.
Diagnosed with rectal inertia at 16 years old, had my rectum removed and had a jpouch made.
Diagnosed with small bowel inertia at 18 years old, and got an ileostomy wich I still have. I am 27 now.

If you want to know more, just ask me!

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 12/31/2008 9:54 PM (GMT -6)   
Thanks all,
I'm trying to be optimistic, but sometimes I get the blues. Everyone does, realistically. But I'm having much better days now. I'm finally feeling better since the emergency surgery and my body is getting used to the "new" bag. I've nicknamed it "Lefty" until I can come up with a better pet name. My labs continue to improve and I'm tolerating food well! Food tastes so good after nearly 2 weeks eating mostly broth. there is only so much broth one can handle. The Dr. said I can probably be released tomorrow and I'm excited to celebrate Christmas with my baby (Santa still hasn't visited our house yet......) she's only 13 months, so she doesn't know.
Hey, a cool thing I've noticed since the 2nd surgery is that my ileostomy doesn't smell. After the 1st surgery, It smelled bad. Of course, it's poop. I expected it to stink. But this one doesn't have an odor? I asked the ET nurse and she said sometimes the smell is determined by the area of intestine that the stoma comes from.
I'm cool with that!
27 yrs. old. married with one beautiful daughter (born 11/20/07)-diagnosed with severe pancolitis u/c 2002 and have been in a "flare" since 2004-will have colectomy Dec. 19th, 2008 (1st step in 3-part j-pouch) Pred, Asacol, B shots, prenatal vitamin, and carafate (temporarily!!!!!! he he he)

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 12/31/2008 10:02 PM (GMT -6)   
I'm so sorry you've had such a rough time. sad Were the abscesses a result of the first surgery or the colitis? Either way, I know how painful they are and am glad you got them taken care of quickly. Things are going to get better in 2009. Happy Birthday! :-)
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 1/1/2009 12:38 AM (GMT -6)   
The abscesses were the result of the surgery. They think that the stoma separated from the skin and then the bowel contents leaked into my abdomen. They don't know for sure what happened, but the rectal stump was intact, and they could find no perforation in the sm. intestine (so far-I'm still in the hospital to make sure no leakages from remaining intestine). And the sm. int. started "dying" close to the stoma, so they had to remove more of it.
Now every time I have a bit of pain, it freaks me out. But some pain is normal for recovery right? I can really feel things moving in there (more than b4 surgery). I hope it's not adhesions or scar tissue....but I just don't know what to expect. and it's hard to describe what I'm feeling to the Dr.'s. They can only advise so much.
27 yrs. old. married with one beautiful daughter (born 11/20/07)-diagnosed with severe pancolitis u/c 2002 and have been in a "flare" since 2004-will have colectomy Dec. 19th, 2008 (1st step in 3-part j-pouch) Pred, Asacol, B shots, prenatal vitamin, and carafate (temporarily!!!!!! he he he)

Regular Member

Date Joined Nov 2008
Total Posts : 24
   Posted 1/1/2009 10:45 PM (GMT -6)   
All I can say is wow -- you are a tough lady! Sorry youv'e been through so much in such a short time. Hopefully you'll make up for it with many more birthdays celebrated the regular way.

Prayers for you....
56 year old
Endometrial cancer, hyst 1992
Invasive breast cancer, 1999 w/rad & chemo
Lacunar infarc (stroke, 8/01 & 05/02)
Benign falcine meningioma, 3/04 (watch & wait)
Bilateral mastectomy 2005
Bilateral salpingo oopherectomy & breast reconstruction 2006
Genetic diagnosis of HNPCC MSH2 (Lynch Syndrome II) (have had previous cancers related to Lynch)
Colectomy w/ileorectal anastamosis 11/25/08, clear path

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 1/2/2009 5:32 PM (GMT -6)   
YEA! I'm home! I was released late last night and I am soooo glad to be home. I feel......tired and sore, but considering the alternative, GREAT! And I feel cautiously optimistic. I feel like I am finally on the mends. We celebrated our Christmas this morning, finally. It was fun. AND I plan on having pizza for "birthday" dinner-just a teeny bit-don't want to over do it. YUM YUM! I'm so excited since I have not been able to eat normal pizza for....I don't know.....years. Cake and ice cream in a couple of days. I feel like these last 2 weeks, I've been obsessed with food, since I couldn't eat. Moving on...

Annie-Thanks for the "tough lady" complement, but based on your history, I would say that my "ordeal" would be a walk in the park for you. God Bless you and keep you healthy from now on.

Good Luck All
Thanks for your support and kind words and may we all have a better year! turn
28 yrs. old. married with one beautiful daughter (born 11/20/07)-diagnosed with severe pancolitis u/c 2002 had subtotal colectomy 12/19/08 resulting in ileostomy; emergency surgery to redo ileostomy 12/25/08; cipro, flagyl, pred., pepcid (temporarily....?)

Regular Member

Date Joined Jul 2007
Total Posts : 275
   Posted 1/2/2009 7:21 PM (GMT -6)   
All I can say is dang girl, all that can happen now is it only can get better. I don't think it could get worse - right? Wishing you the best.
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.

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