Share Facebook
Crohn's Disease Forum » Surgery » Stoma Subforum » Crohn's and stoma... why?


09-08-2012, 07:15 AM   #1
sanni
Senior Member
 
sanni's Avatar
 
Join Date: Sep 2012
Location: Finland

My Support Groups:
Crohn's and stoma... why?

So basically that is my question. If you have crohns how did you end up with a stoma? Is it a temporary one or is it a permanent one? Why do you have it and how do you deal with having one?

I have to say... about 6-7 years ago if someone would have asked me about a stoma my reply was that Crohns patients dont get them. Its a treatment for ulcerative colitis. Only reason a crohn petient wold get one (in my opinion) was that there had been a complication in a surgery. I now knoe thats not exactly true.. even I still would say that crohns + stoma is an unlikely combination.

My story: In 2006 in result of an operation gone bad I got a temporary stoma. After my operation (on a friday the 13th ) my stiches connecting the two ends of my intestines that a part inbetween was removed did not hold. Reson being my low health and lack of nutrients and because of those the wall of the intestine was weak. On monday they re-operated me and cleard up the sepsis and I ended up having a stoma. It was closed up 5 months later but for me it was such an positive experience that when I again had an operation in 2008 I asked the surgen if a stoma would be an option again. He said they dont really do stomas "on demand" that only if there is medical reason for it would I end up wit one again. I was lucky (in my opinion) and I did end up wit a new stoma and now it is a permanent one I will have for the rest of my life. Reason I got it again was the surgeon was afraid the situation of 2006 would repeat.

I have short gut (with les then 5'10 small intestines left) so my stoma is extreamly active. I must drink a lot to keep my hydration in balance but drinking = running to the toilet. For me after the close op of my first stoma in 2007 I was entering a rally bad time. All I had was a messed up stomach and diarrheah all the time. It was so hard after the 5 months of having a stoma and feeling good. With it atleast I had some controll of WHEN i had to use the toilet. And I could wait some minutes if needed. So in 2008 when again I got a stoma I desided I would not give it up and in 2010 they removed the "extra" large intestine that had become extreamly inflamed from not being in use and I now only have my own height of intestines. About 1/4 of what i had in 1995 when my first operation was.

So whats your story to having a stoma?
09-08-2012, 08:35 AM   #2
Samboi
Senior Member
 
Samboi's Avatar
 
Join Date: Jan 2012
Location: Australia

My Support Groups:
I have a temp stoma due to uncontrolled active CD in my rectum and anus.
The inflammation was so bad I could not poop without the aid of morphine - it was awful.
Active disease is now back under control thanks to Humira.
My bum has healed and is ready to return to active duty.
Reversal on the cards for Dec 2012 or Jan 2013.
__________________
Dx - Crohns Disease - 1992
Ileostomy - Jan 2012, Reversed Aug 2013
Pred works, all else seems to fail
Trying Vedoluzimab - running out of options
Neupogen
09-08-2012, 01:06 PM   #3
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Crohn's can present anywhere but plenty of us have it in the colon and rectum. Mine has only been in my colon so far, and that's how I ended up with Stan.
__________________
Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
09-08-2012, 01:36 PM   #4
sanni
Senior Member
 
sanni's Avatar
 
Join Date: Sep 2012
Location: Finland

My Support Groups:
I love it how some of you give names to your ostomy. Thats fun.

I gues if you have your crohns in the colon it would be a great solution. One doctor of mine once said that sometimes crohn can be very specific to one place and once it is removed there is a chance it wont re-acur. For me it was the end of the small intestine and joining to the large intestine. I suppose now I dont have them so my crohns is gone too. Or Humira is working for me.

Samboi, Glad humira is helping you. I am also on it and seems to work. Just wish it had been available to me 10 years ago.
09-08-2012, 02:41 PM   #5
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
I didn't mention the expletives I use in FRONT of Stans name on occasion! I'm still trying for a reversal this year. I've got all my colon but the sigmoid so I hope it should be ok!
09-09-2012, 05:27 PM   #6
littlefreebird
Senior Member
 
littlefreebird's Avatar
 
Join Date: Jun 2011
Location: belfast, United Kingdom

My Support Groups:
i thought the opposite sanni, in my opinion all the people that i know that have crohn's roughly 50% of them have a bag because their disease just became either too agressive or just was not responding to meds.

i have a permanent bag because for 11 years i had crohns in my colon, no meds worked so it made sense to remove it and here i am symptom free and enjoying life!
__________________
"We're all in the gutter, but some of us are looking at the stars."

Crohn's since 2000 (aged 10)--> full colon & rectum removal 2011.
09-10-2012, 10:42 AM   #7
sanni
Senior Member
 
sanni's Avatar
 
Join Date: Sep 2012
Location: Finland

My Support Groups:
i thought the opposite sanni, in my opinion all the people that i know that have crohn's roughly 50% of them have a bag because their disease just became either too agressive or just was not responding to meds.
I am starting to realize this. Here in finland I dont know anyone with crohns AND stoma. Atleast a permanent one. It seems even if the large intestine is removed the small is just joined to the rectum. Ofc its a much smaller population here. Thats why I have moved to this forum now. I cant find support in our local forums anymore.

I gues having your large intestine romover when having crohns just makes you hope it wont come in new places. I know I hope mine wont ever come back since with short gut I cant aford to lose any more intestine.
09-11-2012, 03:14 PM   #8
Jandeacs
 
Jandeacs's Avatar
 
Join Date: Sep 2011
Location: brighton, United Kingdom
My bowel was completely blocked , in febaury last year I haD A HEMI-COLECTOMY , the surgeon said my bowel was like a piece of leather , really flat about 5 inches of it , i had been very ill prior to it , constantly on steriods , but i moved home and got lost in the system , then had to have it done again as it kept blocking ! now that is Pain !! its supposed to be temporary to give my colon a rest , there is no Crohn's in my colon , but it is inflammed , the stoma did not make much diffrence to cRohn's symtome , ie , Dx I think you call it , depending on my diet ,but because its in the bag its easier , but gets very sore around it .. I really need to know if anyone else has had a reversal ???? I dont know much about it so would appreciate some input , as well as gall bladder removal , Can Anyone HELP ???
__________________
Hold Hands Lets walk Together Jan
09-11-2012, 03:26 PM   #9
Samboi
Senior Member
 
Samboi's Avatar
 
Join Date: Jan 2012
Location: Australia

My Support Groups:
I have an ileostomy and had mt gallbladder removed about three weeks ago.
Feel great - best I have felt all year.
Feel free to pm me if you want.
09-11-2012, 03:29 PM   #10
Jandeacs
 
Jandeacs's Avatar
 
Join Date: Sep 2011
Location: brighton, United Kingdom
I would love to Samboi but I dont know how to .. lol
09-11-2012, 08:08 PM   #11
CrohnsHobo
Senior Member
 
CrohnsHobo's Avatar
 
Join Date: Nov 2009
Location: San Diego, California
I had a subtotal colectomy, because of multiple strictures (9 cm opening) due to scar tissue from 17 years of active disease. The stoma was temporary. Only ever had Crohn's in my colon.
__________________
Diagnosed in 1996
Currently on: Nothing!
Colostomy surgery 4/24/12

Past Failed Treatments:
Prednisone
Remicade
Asacol/Lialda
6 MP
Cipro/Flagyl
Humira
Methotrexate
Cimzia
Azothiropine
Entyvio
Augmentin
Stelara
09-12-2012, 01:34 AM   #12
maria
I love you God.
 
maria's Avatar
 
Join Date: Jan 2012
Location: van, Washington
Mines from UC. Mine had to happen because I was bleeding and in pain and meds wouldnt help me. I think from stress. I got it Feb 14 of last yr got my jpouch created June 14 of this yr. next week sometime is when I'm getting my takedown.
__________________
Ileostomy from UC but doctors are now thinking crohns. Since Feb 14, 2011


I want to find a friend here in vancouver, washington with a stoma... I feel lonely.
Trying to stay gluten free.
09-20-2012, 07:56 AM   #13
Jaano711
Forum Monitor
 
Jaano711's Avatar
 
Join Date: Apr 2012
Location: South Australia

My Support Groups:
Hi scanning,
I've just had a permanent stoma done for crohns. I've called her 'miss piggy' as she is a little noisy and demanding. I have short bowel as well and pre ostomy was dashing to loo in excess of 30 times some days. It is so nice to not have to run off to the loo all the time.

I have to admit I am still having some post op hiccups, but once they are all sorted I am looking forward to having a much better quality of life.
Cheers janette
__________________
__________________________________________

: Janette


I meant to have Jano as my user name, but did a typo!
09-20-2012, 10:52 AM   #14
Downnvrout
 
Downnvrout's Avatar
 
Join Date: Aug 2012
Location: Long Island, New York
I suffer from crohns in both my large and small intestines. This last flare affected both. I had a resection on May 15th of this year and knew right before the surgery that I would have a temporary ostomy when I woke up. I don't remember if my surgeon told me it was going to be an ileostomy (which is what I have) because I was so sick and on such high doses of dilaudid but I do remember him saying that the ostomy was to give my bowel a break... My reversal is scheduled for October 10th.
02-03-2013, 01:01 AM   #15
debbie261
 
Join Date: Oct 2012

My Support Groups:
I have had Crohn's for 20 + years and it caused rectal cancer,radiation and chemo wrecked my insides so that is why I have a colostomy.Mine is not working well so I am having a proctocolectomy and ileostomy.I really stress seeing your Doctor asap if you have a lot of anal problems like abscesses ,or any strange growths there.I thought my problem was just another weird crohn's side effect but my daughter made me go to my Doctor and thank God I did,they caught my cancer at a stage 2.I was told that all the abscesses over the years caused the cancer.
02-03-2013, 07:09 PM   #16
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Thank god you went to the doctor Debbie, its so easy for us to blame everything on Crohn's or UC and just put up with it. Godd advice to everyone to get things checked out.
this is my second stoma (ileostomy) and both have been to allow bowel rest after resections. My crohn's is mainly in the small bowel and causes lots of abscesses but I've also had throat and anal abscesses. i also have short bowel syndrome now due to the amount removed in resections.
__________________
Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
Reply

Crohn's Disease Forum » Surgery » Stoma Subforum » Crohn's and stoma... why?
Thread Tools


All times are GMT -5. The time now is 09:08 AM.
Copyright 2006-2017 Crohnsforum.com