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Crohn's Disease Forum » Surgery » Stoma Subforum » My surprise ileostomy


12-31-2009, 02:12 PM   #1
OliveBranch
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My surprise ileostomy

Hi All,

I wrote in to the forum for the first time several weeks ago when I was looking into LDN as a treatment option; I thought I'd write again now to fill you in on the intense whirlwind journey that has happened since then.

My most recent flare began around Thanksgiving, which is when I started making plans to seek out a doc to prescribe me LDN. Well... I have never had a flare progress so quickly before. By the second week of December we knew I had to be hospitalized--I was running constant fevers and couldn't keep any food down. I was in the hospital for 6 days, and the docs decided that I seemed to be responding to the IV steroids and bowel rest (they didn't give me TPN (IV nutrition), so I was basically starving for these days) and then sent me home.

I was suspicious of this, as I have NEVER responded fully to a simple treatment like IV steroids and bowel rest, but I went home anyway, and then proceeded to get much worse. When I spoke to my doctor a few days later (who had not actually been able to see me in the hospital), he was irate that I had been discharged and had me return immediately. My first day there I was given a catheter for TPN, and by the second day I was sick enough that my colon had to come out completely. Somehow I knew when I returned to the hospital that something drastic would happen, so I was mentally prepared for the colon to go. But still, it is certainly a sudden life change!

I had a fantastic surgeon, and the surgery went extremely well, and I have been healing right on track. It was a big incision, though, and pain control has been difficult. Overall, though, I'm very happy to have hope of health in the near future, and I think I can live with the ileostomy bag pretty happily. My rectum was preserved, so there is a good chance that I can be reconnected in the future. Right now I'm two weeks out of surgery and starting to feel a little bit better every day (though still very, very weak--and at a very low weight).

So that's my story--it's crazy how things turn out. I'd love to hear any advice from other people with ostomies, in case there are things you think I should know.

all best,
Emily
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Emily
Dx Crohn's 1994
Able to live healthily and normally until 2007 with help of drugs (at first steroids, antibiotics, then asacol, then Remicade, Cimzia, Humira)
December 09: "surprise" colectomy and ileostomy
12-31-2009, 04:22 PM   #2
My Butt Hurts
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Wow - "surprise!"
You sound like you have a great attitude, and that can only help you. I have read that most people on here with a bag are very happy with it. The more your body heals, hopefully the easier it will become. Search Kello's posts, I think there is an ileostomy support site that she mentioned that you might want to search too.
Glad you're here, hope we can be of some support to you!
12-31-2009, 04:59 PM   #3
Peaches
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Well, that is quite a surprise! It sounds like you are adjusting to it nicely and it's great they left the alternative for you to be reconnected (if you choose) in the future. Hopefully your body can have some time "off" from all the inflammation and disease process and let you heal! Good luck with everything and keep us posted!!
12-31-2009, 05:27 PM   #4
shazamataz
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Wow! That's quite an adventure you've had Emily!
I hope you recover well and have a healthy and happy 2010
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01-01-2010, 02:21 PM   #5
OliveBranch
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Thanks for the responses! I do have a good attitude and am very hopeful about this new year. Happy New Year to all of you!

If anyone happens upon this thread in the future and would like to ask me questions about the surgery experience, please feel free to send me a message.
01-01-2010, 04:34 PM   #6
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hi Emily... wow, surprise indeed!

mine is a similar story, in that my ileostomy was not planned... it was an emergency, but that was many years ago, and i never had it reversed. if there's anything you particularly want to ask, please just shout out - there's a few of us here who have, or have had, stomas..

wishing you a quick and complete recovery.
01-25-2010, 11:43 AM   #7
phillycrohns
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Hi Emily:

I am sorry to hear that you suffered so much! But am glad to hear that you are on the road to recovery. I hope you get back on your feet and get back to good health soon!

Chris
01-27-2010, 08:13 AM   #8
Sue-2009
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Emily, I had a stoma for a bit when I was waiting for my j pouch. I remember thinking...wow! I feel so good. I can't believe I was so sick! You just don't realize how sick you are because you get so used to it. I hope you are feeling well and adjusting well with your stoma. I had a hard time, and there is a chance I might have to go back to it..but--on the flip side..I can't believe how good I felt! Best of luck, Did you ever get the LDN? Sue
01-31-2010, 11:31 PM   #9
Nyx
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I just recently had a similar "surprise". I was at my brother's house visiting for Christmas and got up in the middle of the night to go to the bathroom. As I was trying to go, I suddenly had intense pain in my stomach. I had never felt pain like this in my life!!! I had my brother take me to the hospital where after about 8 hours (worst 8 hours of my life) they performed a colostomy. Turns out I had blew a hole in my colon and distended my bowel, hence the immense pain. That was December 19th. I'm almost fully recovered now (fortunately for me, I didn't have any complications beyond 2 blood clots in my lungs, but that's another story) and haven't had any pain whatsoever. I'm going to have to have surgery at a later date to remove my rectum, but for now I'm doing well and adjusting to the stoma.

As was mentions by other members, I didn't realize how sick I was till now. I feel great...and I'm not missing the painful bowel movements (if I could have one at all), the sleepless nights, the fevers, the stiffness in the joints, and the meds as I'm not on anything right now except for the meds for the clots.

Good luck to you!

Cindy
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