50 days after comostomy and still pain

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kimlin08
Regular Member


Date Joined Feb 2009
Total Posts : 46
   Posted 2/25/2009 9:24 PM (GMT -7)   
Hi, maggie here...Thanks so much for all the help you guys have given me...the information has made me realize life goes on.....My question is 50 days after my emergency surgery where i got my colostomy I am still having side pain in both sides.....my first surgery was to remove a cyst and I dont know if my side pain is from that or not.....also my back hurts and every third day i run a low grade temp...I still have my incesion which my husband is dressing everyday with 4x4,s........i think i will get it stitched up on Monday.....just wondering if this pain is normal is far out of surgery? thanks in advance..........Maggie from Tennessee....coping or trying anyway
Maggie in tennessee....coping


flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 2/26/2009 6:01 AM (GMT -7)   
Maggie,
 
That seems like a long time to still be in pain. Have you told your surgeon about it yet?
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 2/26/2009 9:46 AM (GMT -7)   
Maggie,
I agree with Cecilia. You shouldn't still be in that much pain from the surgery. Could you have an infection? Please tell the surgeon about this and make him listen.
Jennie

mommyphotographer
Regular Member


Date Joined May 2008
Total Posts : 159
   Posted 2/26/2009 12:14 PM (GMT -7)   
your incision is still needing 4x4 dressing on it.........and what needs to be stitched up..? why is it not stitched up now.. i feel bad for you. hope you feel better soon. i read your story the other night and i felt bad that you had to go thru all that. have you told your doctor this time your runnnig a temp (low grade) and that your in pain. i know when they opened me up for my first surgery it made a cyst of mine grow very large and when you are opened it can make the smallest cyst just take off like wild fire i heard. and well mine did and 4 months later it was massive and burst and at that time it put a whole in my colon and there for a i had to have emergency surgery also but i go in soon enough that he just cleaned my insides up and put in drain tubes and NG tube (the worst) and stayed there a week. but i felt the cyst growing in there and it hurt some on and off. and i just felt like somthing wasnt right. and you could have another cyst growing in there. if they ultrasound your belly it would show them if that is the case. i am praying for you. where are you from?

kimlin08
Regular Member


Date Joined Feb 2009
Total Posts : 46
   Posted 2/26/2009 1:50 PM (GMT -7)   
Im from tennessee...yes i the incesion in which they took all my insides out to decomtaminate me is still open.....it is smaller and close to be closed up on monday i think.....I am going tomy dr in the am....I think the side pain is from the cyst adn scar tissue in which i had my frist from and the surgery to where my colon was nicked.....This am when i did my uragation, i had alot of return and first the first time after about 20 minutes of waiting and changing my bad i completely filed my two piece bad and then when i took it off i still had an explosion all over my bathroom....My husband has been so good and clened it for me......I am so lucky to have him but it still breaks my heart that after 6 months of marraige he is doing this for me......makes me feel like not so much of the sexy women he made me feel like when we fell in love......thanks for the advice all of you...kim....maggie from tennessee...coping or trying everyday to get thur that day
Maggie in tennessee....coping


Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 2/26/2009 3:24 PM (GMT -7)   
Maggie, I could be mistaken, but when they leave an incision to heal without sutures/staples, it will stay that way until the scab is gone...they don't usually stitch it towards the end...and that is okay, I've had many of those and you just have to change the dressing less towards the end.

I would definitely call your doc, you shouldn't be running a temp and have all that pain.

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/26/2009 8:18 PM (GMT -7)   
I had my 2nd surgery on Christmas day. It's been 9 weeks. I'm still in pretty good pain. I'm not a drug addict, so I'm not just saying that for drugs. (but I feel slimy when I take them) and I'm almost out, so I'm kind of scared, but I don't want to ask for more, b/c I want to get off of them b4 I do become an addict.
My surgeon said the pain is normal for everything I went through. He said it was a mess in there.
BUT I'm not running a fever.
Definitely call about that.
I agree with Ohio about the incision. If they left it open (to drain, I'm guessing) then it will probably have to heal closed on it's own. The hole where my old ostomy was, was left open to drain. and then closed on it's own.
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; 1/15/09 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."


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/27/2009 8:48 AM (GMT -7)   
Chassity,
You had major surgery and are still in pain, so you should call your doctor's office and ask for a refill. If you weren't in pain, you wouldn't need them, so don't worry. If it makes you feel better, you could ask them to call in a refill for a smaller amount, so you only get what you need, and there won't be any extras around.
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/27/2009 11:50 AM (GMT -7)   
Chassity--I ditto Cecilia...I, too, have had to ask for more when recovering. They might ask a few questions, but you did just go through A LOT! Answer them honestly and don't feel bad about taking them...

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/27/2009 8:47 PM (GMT -7)   
As always, Thanks for your support guys!
I was in pain at work today, and they were questioning me about why I was still on pain meds. I said "Because I'm still in PAIN!"
they asked if I could just take tylenol? NO. this is way over tylenols head.
Then I started to feel even worse about still needing to take them. I do hate that I still need them.
Until I read your posts. You know more than anyone what I'm going through.
I know I'm just too hard on myself. I need more patience.

Sorry Kimlin to take over your thread.
How did your Dr.'s appt. go today? What did they say about your incision?
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; 1/15/09 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."


kimlin08
Regular Member


Date Joined Feb 2009
Total Posts : 46
   Posted 2/27/2009 9:17 PM (GMT -7)   
Dr appointment didnt happen......I feel much better and had a massively big urigation this morning......called the office adn im to go on Monday at 10...i really think i have had gas or its just where im eating so much better.....and i really hope he dont sew me up......that is if it wont make the scarring worse by not.......Im sure there will be a scar.......im just one day good and two bad.......Im so afraid when they do my cat scan the place in my abdomen (abcess which couldnt be gotten to with out surgery but was very small had grown.....its deep in my abdomen and they think it should be left alone unless it grows.....maggie
Maggie in tennessee....coping


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 2/28/2009 8:48 AM (GMT -7)   
Maggie - just wanted to say I'm thinking about you and wishing you much better days ahead.

Internal healing takes time. As I posted, I had 4 solid weeks of pain every day, every minute. Later I was told this was internal healing taking place. All I know is it was there, constantly. I could dull it with Tylenol but never really take it away.

By week 5 it began to subside. Didn't go away completely but there were hours when it was just - gone.

I think by week 6 or 7, I noticed longer pain free periods.

Time can be so hard to speed up. But time does ease the pain. Healing doesn't take place overnight, my surgeon said. This is why I say my colon surgery was much more painful than childbirth ever was! And I had thought nothing could be more painful than childbirth! Now, no matter what a doctor does to me, I just say - oh the absolute worst pain of my life has already happened, do what you have to do to me......they do smile and then reluctantly go about their work (whatever it is). LOL

Hang in there.....we are all here for you!
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!


RITAS
Regular Member


Date Joined Feb 2006
Total Posts : 140
   Posted 2/28/2009 9:07 AM (GMT -7)   
I don't think they'll sew you up. I had an open wound that they left to close on its own as well. They consider them dirty wounds if they are not close during surgery. I was in pain for about 4 months after my surgery. Keep in mind ur healing from the inside out and ur insides also have to learn to take their new place in ur body. I always called and asked for more meds. They would question me but they know I wasn't a druggie..haha. Bottom line is hang in there things will get better just keep ur doctor updated on how ur feeling and ur fevers.

Good luck!!
Rita
Crohn's Free Since April '06
Total colectomy/ileostomy April '06
Reversal July '06
Bowl resection/ileostomy July '07
Bowl resection/Stoma repair June '08
6ft. intestine left
Currently trying to learn about the "new me"


kimlin08
Regular Member


Date Joined Feb 2009
Total Posts : 46
   Posted 3/2/2009 6:16 AM (GMT -7)   
 Just a update on my pain..... goy severe sunday am so i went to the er where they took me right ib not like last time when i waited 4 3 and a half hours.....the dr who had saw me before remenbered my situation and sent me directly for c t scan that was after i drank the contrast stuff....Good News..........nothing showed up on my scan....they say the pain im feeling is normal pain...they gave me dimarol in my i v and i got relief and no pain...this am the pain and aches are here so i guess i have to quit rushing things and take this a day at a time......thanks for the advice and support......maggie

Maggie in tennessee....coping


pepperann27
Regular Member


Date Joined Dec 2008
Total Posts : 147
   Posted 3/2/2009 11:20 PM (GMT -7)   
I would think that having a temp. would mean an infection of some sort
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!
"Don't worry about failure, worry about the chances you miss when you don't even try"
 


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 3/3/2009 5:22 AM (GMT -7)   
maggie - time can move very slowly when you want it to speed up. How well I remember this internal, 24/7, pain you are experiencing. My initial colon resection/cancer surgery, gall bladder removal, creation of a temporary colostomy, took almost 5 hours. My surgeon jokingly called me the Blue Plate Special of that surgical day. Had the impression there were interns looking in on the surgery too. Lovely. It was also implied that when colon surgeons have a challenging surgery such as mine (my tumor was very low in the colon), they open you up, lift out your intestines and lay them aside on your stomach, while they work "below". When the resection is complete and finished, they "pack" you back up and replace your small and large intestines the way they were lying before surgery began. They can't always get things exactly the way they were before surgery but usually they do. Also when a surgeon touches the intestines, they shut down. For days. Everyone kept telling me that your intestines hate to be messed with. This is why every single time a nurse came in my room, she/he listened for active, good bowel sounds. To make certain things were progressing as they should.

All of this manipulation wreaks havoc on your GI tract. The work must be done though. And you do recover.

But it takes a lot of time to heal and recover.

I know you want to rush this but time is the beast here. The best you can do now is keep walking every day (we eventually bought a treadmill for this purpose). Other exercise might be out, but slow, steady walking really does help get you back on the road to recovery. Good nutrition, vitamins, etc. too. Lots of water also (6 glasses a day is ideal).

And well, curse it if you want - but time - really does the trick.

Hang in there.....
Mary
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!

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