Met with surgeon, yesterday. Anyone have these problems with your Ileostomy Stoma?

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CrohnieCJ
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   Posted 3/9/2011 9:00 PM (GMT -6)   
 
I met with my surgeon yesterday to talk about a permanent ileostomy.   I was so ready to get it scheduled for summer and be able to get on with my life.
 
He wanted me to be aware of a problem he might encounter with creating my stoma. 
 
I am rotund and have an apple shape with a big belly.   He told me that people with my body type could have issues with their stoma.
 
He said that it is harder to create a healthy stoma in the overweight patient because the blood flow may be cut off for too long during surgery and it could cause the stoma to die off and turn black.  Then he would have to cut it off and pull it out farther and re-do the stoma.   He made it sound like it could happen over and over again.
 
Also, he said I could end up with a retracted stoma.
 
It appears as though the terms might be "Ischemic" and "Necrotic" in reference to the stoma turning black and having to be redone.
 
Anyone have this happen?  
 
I was so disappointed  cry  
 
Thanks, CrohnieCJ
 
 

summerstorm
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Date Joined Aug 2006
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   Posted 3/9/2011 11:18 PM (GMT -6)   
i havent heard of the necrotic thing, but i do know it's harder for heavier people because of skin folds and such. Maybe you could see how much weight he thinks you need to lose before he thinks it would go better?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Christine1946
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Date Joined Aug 2008
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   Posted 3/10/2011 10:34 AM (GMT -6)   
     My surgeon never mentioned anything, but the ostomy nurse who used to come to my house said she had a few overweight patients who had complications such as those you referred to.

stripey
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Date Joined Feb 2011
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   Posted 3/10/2011 10:45 AM (GMT -6)   
Like with any surgery if you are overweight it can cause complications. Looking at some of the stoma helpsites they do show that patients who are overweight or carry excess weight around the stomach can have problems with invert stoma and loosing stoma amongst skin folds. Also as stoma is pulled through muscle wall the more muscle and tissue it has to go through the more problems it could cause.

Best thing would be to reduce weight before op, you have few months and this can give you good start before op.

Unfortunately, I have no personal experience as I have problem maintaining body weight and I have other problem, if get too skinny as stoma about 3 inches from hip bone, the wafer can have problems sticking as hip bone juts out.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

blueglass
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   Posted 3/10/2011 11:52 AM (GMT -6)   
I don't have much experience with this issue either, but my surgeon mentioned several times that it's a lot easier to do surgery on thin people, saying that mine would be easier. I asked how many heavy people there were w/IBD, since it's always hard to keep weight on when I'm sick...... but she operates on a lot of people with cancer too.

So sorry you had this disappointment, and I hope you can work it out one way or another. I'm sure it's not trivial to just take off weight.

run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 3/10/2011 12:02 PM (GMT -6)   
I have somehow never experienced any significant weight loss with my IBD...I have to fight to take it all off the old fashioned way! At any rate, my current weight is the reason why my surgery will be three steps instead of two (well, that and steroid usage). My surgeon did not have concerns like what you mention, but he did indicate the surgery is more difficult when the abdominal wall is thicker. I'm not too concerned because I've lost 50 pounds in the last six months and plan to continue on that path to lose 50 more and get to my goal weight (I go to Weight Watchers). Are you well enough right now that you can wait a little bit for surgery? If so, it might be worth it to put it off a few months and see if you can lose some weight. I highly recommend Weight Watchers...it's a very sensible and healthy approach and I've had a lot of success with it. Even losing five or ten percent of your body weight makes a big difference in the overall picture.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery scheduled 3/22/11
http://life-takes-guts.blogspot.com/

CrohnieCJ
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Date Joined Jan 2011
Total Posts : 423
   Posted 3/10/2011 1:47 PM (GMT -6)   

Thanks, everyone :-)

I am feeling better today about the visit and am thankful I have a surgeon who cares and I do trust him.   I would need to loose around 50 pounds to be at my goal weight.   Since, I was not planning on surgery until June, I am going to really work hard at reducing and maybe look into July or Aug.   The way I see it, even 25 -30 pounds would help.  

I woke up this morning with an inner peace and resolve about my decision to have a permanent ileostomy and feel that it is what I am supposed to do, regardless.    My surgeon could not give me any percentages, only that it could happen. 

I have chosen not to try the Biologic's.  The way I see it, the rest of my life would be nothing more than infusions that probably won't work for long anyway,  other expensive drugs,  2-day preps for colonoscopies at least twice a year,  periodic stretching of a stricture in my rectum which contributes to my incontinence, thousands of dollars every year to keep on this road to nowhere.   Not to mention just waiting on cancer to show up.  I am done.

This place is wonderful and I am so thankful for all of you kind people who have ''been there'' in one way or another.

Post Edited (CrohnieCJ) : 3/10/2011 11:58:04 AM (GMT-7)


Christine1946
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Date Joined Aug 2008
Total Posts : 5975
   Posted 3/10/2011 3:23 PM (GMT -6)   
     To give you an extra boost toward surgery.  I will repeat the words my GI doctor said to me after my second infusion of Remicade, which, by the way, seemed to be working at the time....."Chris, I am so thrilled Remicade is working for you!  If it can give you 15 yrs in remission before you develop Lymphoma, it will be worth it."
     Now, I ask, how would you respond to that????  Is he trying to tell me something here???  What a freakin moron!
     Well, maybe it was a blessing in disguise that Remicade failed after my third infusion.  So did Humira.   I gave surgery a LOT of thought, but am sooooo glad I went through with it.  Now I won't have to worry about the lymphoma...lol.  UGH!

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 3/10/2011 4:30 PM (GMT -6)   
chroniecj so glad you are comfortable with your decision!

The goal body weight, is that what the dr told you or what one of those BMI charts says? I just ask because according to mine i need to still lose about 20lbs and at that i would be sickly looking. It even has me listed close to obese, i wear a size 8 pants i'm hardly obese, lol. Sometimes those aren't really all that accurate. I think its more important that you be healthy, and if you can lose some that would be great and would really help you recover better and make the surgery easier. Try starting on some light exercise, even walking a quarter mile a day or something. If you're up to it, the "insanity workout" will drop the pounds off FAST, but its really really really hard.
good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 423
   Posted 3/10/2011 4:53 PM (GMT -6)   

Christine, there are no words to respond to a comment like that from your doctor.  Unbelievable.

 
summerstorm, that is my own goal weight.   I am 5 foot 2 and 125-130 is what I felt worked for me.  I am sure it is more than the charts recommend.
 
We have a 1/4 mile driveway with incline, so once this Ohio weather breaks, I am going to try to walk down and get the mail every day.  We shall see . . . .

stripey
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Date Joined Feb 2011
Total Posts : 1059
   Posted 3/10/2011 5:39 PM (GMT -6)   
Glad you feel more at peace with your decision today. Think of it as a means to an ends, the way to get a better quality of life and look at the weight loss as a pre cursor to that as well. The better in shape you are before the surgery the quicker you will recover and start living your life again.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 3/10/2011 6:25 PM (GMT -6)   
I think finding peace with the surgery can sometimes be the hardest part...glad you found it :-)

Don't try to walk down your driveway tomorrow...if you are in NE Ohio you'll have snow mad I'm watching it fall right now and the weatherman said it wouldn't start until later!!!!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 3/10/2011 6:29 PM (GMT -6)   
We're getting snow here in C-bus, too. :-(
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery scheduled 3/22/11
http://life-takes-guts.blogspot.com/

Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 3/10/2011 7:12 PM (GMT -6)   
Christine, I cannot believe your GI doctor said that. You will never get lymphoma from an ostomy pouch after 15 years! I don't get some GI's negative attitude towards surgery.

ChronieCJ, I too decided that I didn't want to go the biologic route, and my reasoning was very similar to yours. I did an Remicade infusion to end a flare and avoid emergency surgery, but I never intended to be on it long term. Though that one infusion did hold me in remission until surgery, the side effects were horrible for me so it would have never been a long term option for me anyway.

I had the opposite issue weight-wise, I had lost so much in the hospital that I had to try to put on as much as possible before surgery. I bet though that with your goal in mind, you will be able to lose the weight.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 422
   Posted 3/12/2011 11:00 PM (GMT -6)   
Christine1946 said...

<font color=#0000ff> Now, I ask, how would you respond to that???? Is he trying to tell me something here??? What a freakin moron!


the lymphoma...lol. UGH!


Christine! HA! Is the GI who said this in New Jersey?!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/13/2011 9:45 AM (GMT -6)   
     Enigmawrap...where else? rolleyes     He wanted to see me after my operation.  I went to him for twelve years.  Do you think he even asked my surgeon how the operation went when my surgeon phoned him? Nope.  All they talked about was my prednisone taper.  Here's a guy who was practically family.  I was soooo sick and going to him just about monthly for two years following my hospitalization in 08.  We were constantly on the phone.  He was upset that I chose surgery and not more meds.  I had an appointment with him scheduled a month after surgery.  He never phoned, nor did anyone in his office, to ask how I was progressing.  I asked my surgeon if it were necessary to go to my GI doctor and he responded that not unless I was having upper gastric problems....so....I cancelled my appointment with my GI and haven't been back since. 
     I suppose not nice to say...but since I am a Jersey girl....screw him!

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 3/13/2011 5:50 PM (GMT -6)   
It's not like everyone on remicade gets lymphoma either.... if I recall correctly, I was told my risk increased tenfold -- from 1 in 20,000 to 1 in 2,000. So, Christine, besides your gi doc being rude, hurtful, massively unsupportive and the like..... well, he was also just irresponsibly wrong on the details.

I am grateful for how closely my gi doc and surgeon work together..... clearly is not a given. Hope you have better care now.

jimmysue
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/5/2011 1:30 PM (GMT -6)   
Am wondering how Chronie fared w/ surgery & how you're managing your ostomy.  My husb is similarly-shaped to you, it sounds, an apple-shaped rotund man, but very tall.  He's a few weeks post-colo-rectal surgery, has a new iliostomy, and is struggling with keeping the appliance in place without leaks.  It's a football-shaped  "innie" placed deep in a in a skin fold, and has divets on each side that are lower than the rest of the skin.  However he lost about 50# before his surgery, and another 40 # or so after.   Unfortunately weight loss doesn't totally do away with folds in the skin ....  Even when the ostomy nurse at the doctor's office installed a bag, it leaked before he was up off the exam room table. 
 
We're struggling thru ostomy h-e-double-hockey-sticks right now ....
 
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