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Discharged 2 weeks ago with a permanent ileostomy

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Ulcerative Colitis
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Posted 4/20/2010 2:30 AM (GMT 0)
I felt really bad again by mid March with 10+ bloody diarrhea everyday. Cyclosporine and 6mp didn't help. My husband took me to ER on March 15 when I had 15 bloody diarrhea the previous day. I was admitted right away.
After discussing with the surgeon in the hospital I decided to have surgery. I opted for a permanent ileostomy. My colon, appendix and rectum were removed and my anus sewed up.
The surgery was done on March 26. I felt much better on the following day. On March 28 I started to eat regular meals. And I felt stronger and stronger.
I weighed 100 pounds normally. I was 85 pounds the day I was discharged (April 6). I was 91 pounds last night. I have good appetite and I am feeling great.
I told my surgeon, "Thank you very much. You saved my life." Indeed he did. And now I have a new life.
Posted 4/20/2010 2:39 AM (GMT 0)
this is truly a great story and I am glad things are starting to turn around for the best for you.
Posted 4/20/2010 3:18 AM (GMT 0)
Great to hear, I hope you continue to heal and get stronger.
Posted 4/20/2010 3:20 AM (GMT 0)
YAY isnt it awesome to be healthy again???
And you can now say my favorite phrase, "when i HAD uc"
Posted 4/20/2010 3:51 AM (GMT 0)
So glad to hear you're feeling so much better and not suffering anymore. March was the month that did me in too - must have been something in the water!

Posted 4/20/2010 3:57 AM (GMT 0)
Glad you're doing well! :-)
Posted 4/20/2010 4:28 AM (GMT 0)
Good for you!!!
Posted 4/20/2010 5:26 AM (GMT 0)
Wow!! I am so happy you're doing well. Sounds like you made a good decision & are on the road to getting your health back.
Posted 4/20/2010 5:29 AM (GMT 0)
Oh my!! That happened fast! I'm happy to hear you're doing well and that you're starting to gain back some weight.

Why did you decide on the permanent ileostomy instead of the other take-down options?

Thanks for the update! I know you weren't scared to potentially have the surgery..you definitely gave it your all with the meds.

quincy
Posted 4/20/2010 1:26 PM (GMT 0)
Congratulations on being UC free! Glad to hear you are feeling so much better now.

Posted 4/20/2010 1:35 PM (GMT 0)
Life will only improve from here on out, congratulations on your successful surgery! I too felt that my surgeon saved my life.

Sue
Posted 4/20/2010 1:40 PM (GMT 0)
Hooray for you! I hope your strength continues to return quickly!
Posted 4/20/2010 3:54 PM (GMT 0)
Burnabygirl - wow, haven't seen you for a while around here. Glad to hear you are donig so much better now.

100 pounds normally?? Wow! I can only dream...
Posted 4/20/2010 5:48 PM (GMT 0)
Wow, you sound wonderful and in such a short time since your surgery! It's great to hear such upbeat news.
Posted 4/20/2010 8:21 PM (GMT 0)
     That is wonderful news!!! So glad to hear you are so much better.  Surgery may be in my future too, but hoping Humira works.  I am no where near as ill as you were but I am flaring more frequently.  I think that is what I would go for too...perm ileostomy.  My rectum is the culprit.   What hospital did you have the surgery?  Obviously you had a great surgeon.
Posted 4/21/2010 1:05 AM (GMT 0)
Thank you all for your encouragement!
I decided to have permanent ileostomy because I didn't want to undergo another surgery (the take-down). To me, wearing an ileostomy pouch is much better than wearing a diaper, which I needed before the surgery.
Cleaning and changing the pouch is very easy. I empty it 4-5 times a day. I change a new pouch every 2-3 days. I have extended medicare and I pay only 20% of the cost.
The only thing I don't like is the gas. Sometimes it makes the pouch inflate like a small balloon in 3-4 hours. When I get up in the morning I often get up with a small balloon. LOL.
I get up once during the night to pee and empty my pouch.
I was told by an enterostomal therapist nurse that I've got a nice stoma. I think 'nice' means round in shape, and that I can use a pre-sized pouch 6 weeks after the surgery without having to cut-to-fit.

I live in Canada. I had my surgery in a hospital in B.C.
Posted 4/21/2010 1:24 AM (GMT 0)
I forgot to add that I stopped taking pain-killers on the 23rd day after my surgery. I took one pill of Tylenol 3 and one pill of ordinary Tylenol four times a day when I was in the hospital. When I went home I slowly decreased the dosage. And now I don't need it at all.
I had the surgery (panproctocoletomy and ilestomy) by epidural anesthesia. There was no pain at all in the first 24 hours after the surgery. I sat up to eat my breakfast the next morning at 8 am. By 10am I was already walking with a physiotherapist.
Posted 4/21/2010 1:31 AM (GMT 0)
Wow, it sounds like you are recovering just wonderfully! I am so happy that the outcome is so good for you!!
Posted 4/21/2010 3:38 AM (GMT 0)
Congrats.  Thanks for posting.  This gives alot of us hope.  I know surgery will be in my cards in the future and hearing good thinks makes me feel so much better.  I hope you have a great recovery and can live a healthy rest of your life.turn
Posted 4/21/2010 4:51 AM (GMT 0)
Burnabygirl....thanks for answering my and others' questions.
Did the surgeon mention how bad your colon was?

You mentioned an epidural anestesia....meaning....you were awake through the whole surgery?

It's truly reassuring to hear of a successful surgery and smooth recovery.

quincy
Posted 4/21/2010 5:20 PM (GMT 0)
Hey Burnaby girl. So happy to hear it went well. I just got home from takedown and it is go great to have it all behind us - dont you think? Congrats!
Posted 4/21/2010 6:25 PM (GMT 0)
That's awesome news Clicky!!!
How is healing with the takedown?

q
Posted 4/21/2010 7:16 PM (GMT 0)
Hi quincy, I was conscious after receiving the epidural anethesia but I fell asleep after the doctor put a large mask on my nose and mouth. It was 1:30 pm when I looked at the clock for the last time before I fell asleep. When I started to hear people talking again it was almost 6 pm. The surgery itself took about 2.5 hours.
My surgeon said my whole colon was badly inflammed. Only the rectum part looked better because I had been using the enema religiously. I knew it without him telling me because I had so many bloody diarrhea. I had no control on my bowel movement at all. It's a nightmare and so I decided to have surgery asap.

Hi Clicky, I wish you a speedy recovery from your takedown! It feels so good to be UC free and med free.
Posted 4/21/2010 7:22 PM (GMT 0)
     Burnababy...prior to receiving the diagnosis of pancolitis, were you on a maintenance med for your proctitis?  I have had UP for over eleven years, thus far, keeping fingers crossed, it has not traveled further into up into my colon.  However, I have been on Colazal for the last ten years and my doctor tends to think it is keeping my UP confined to the rectum.  That rectal area is a real pain though, takes forever to heal up anymore.
Posted 4/21/2010 7:45 PM (GMT 0)
I was on Salofalk enema nightly when I was diagnosed with UP in June 2006. It's the only maintenance med I used. I had a remission for 1 year. Then my doctor said I could taper it to once in 2 days, then once in 3 days, etc.
When I was using it once in 5 days I flared. It was Oct 2007. Later in April 2008 I had a colonoscopy and I was told that I had pancolitis. I was shocked. From then on I went downhill and never had a full remission again, till I had the surgery and I am now CURED.
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