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Crohn's Disease Forum » Surgery » Stoma Subforum » How common is a Colostomy with Crohns?


07-14-2010, 08:45 PM   #1
EthanPSU
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How common is a Colostomy with Crohns?

Before I came to these forums I had no idea what a Colonstomy was. But after reading through I see quite a few of you have had one and now have a Stoma. I was wondering how common and why is a Colonstomy performed with a person with crohns?

The only reason I ask is because I don't think I could deal with it right now in my life or really at all. It would probaly destroy my confidence. I am very impressed how all of you are dealing with it and I enjoy reading about how you guys are doing.
07-14-2010, 10:01 PM   #2
GutlessWonder86
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Ileostomies and colostomies are usually given to pts. when all other avenues of medical therapies fail. Having an ostomy is not the end of the world. Folks w/CD get their lives back. While surgery is not a cure, at least there is some relief & the person can return to their daily activities such as swimming, traveling, dating, exercising, etc. The Crohn's & Colitis Foundation can offer more information or the United Ostomy Association of America can. FYI--Ileostomies are most common for crohnies as the entire colon is usually affected by the illness.

I've had my ileostomy since I was 17. I no longer live in the bathroom and my illness is under control by taking Entocort. I'm extremely active w/CCFA and the local ostomy chapter where I live plus I do hospital visits for crohn's pts. & their family members who have questions in regards to care and maintenance of the appliance. Nobody knows you have the bag unless you choose to tell them. Attending a support group is very beneficial b/c you learn what's best to wear after surgery, what kind of bathing suit looks good on female or male ostomates, what kinds of veggies to avoid as they cause blockages, you can talk to vetran ostomates who've traveled and even climbed mountains (I met an 86 yr. old woman who did just that!!! truly amazing).

I managed to appear on a local morning show yrs. ago w/a local surgeon discussing Crohn's disease and ostomy information plus I had written an article for the Ostomy Quarterly. That drew attention to IBD & assisted many pts. in deciding whether or not to have surgery before it was too late & it became an emergency type situation.

Feel free to ask me any questions and I'll do my best to assist. Take care.
07-14-2010, 10:13 PM   #3
Jer's Girl
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Good post gutless!
07-14-2010, 10:39 PM   #4
Nyx
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I had a colostomy, and I love it!!! It was an emergency procedure, but turned out to be the best thing that's ever happened to me. I have my life back. As mentioned above, I can swim, travel, exercise, do normal things without worrying about where the nearest bathroom is. It's fantastic. I'm even starting college (again) this September.

Any questions, feel free to ask
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Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

07-14-2010, 11:44 PM   #5
kello82
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ethan you could deal with it. dont ever doubt that you arent strong enough to handle something. k?

eveyone pretty much covered the technicalities here, an ostomy is usually one of the latter options one is faced with. for me, i had no other options left literally so thats where mine came in.

lets put it this way though, in the months leading up to my surgery decision and surgery itself, i might as well have been dead. like really, i did nothing but sleep, rest, and space out. was running to the bathroom 25+ times a day, most of the time not even making it there. i remember so many times cleaning the bathroom floor at like 4 am, looking back, it was such a sad existence.
so compared to that? any negatives associated with an ostomy seemed like nothing and so i went for it.

now unforseen complications and crap aside, it has improved my life. i get to live again you know? not as much as i want to yet, but far better than that misery of never going farther than from bed to bathroom. no more 4 am cleaning poo off the floor either! wooooo.

its very strange how something can turn from being what you want to avoid to what youre excited for. SO strange. but i remember years of feeling like the ostomy would be terrible and then finally feeling like it was what i needed. what i WANTED no less.
just time and circumstance i guess, changes everything.
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07-14-2010, 11:57 PM   #6
Jeff D.
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Ethan, if it came down to it I know you could deal with it. I've had several years to contemplate having one and I'm so happy I finally got an ileostomy. It has helped me regain my confidence since I don't feel like I constantly have to go to the bathroom. Now I just empty my bag once in a while when it gets full and it takes less time than it used to take me just to go to the bathroom. I go 4-8 times a day, depending what I eat and how much, compared to 10-20 times a day which I used to.
07-15-2010, 01:32 PM   #7
CDDad
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Hi Ethan,
A very interesting question. I started poking around and found this article:
http://findarticles.com/p/articles/m...1/ai_14803041/

It says about 15 to 20% of people with UC will require an ostomy. It did not mention a percentage for Crohns, but maybe it's less since not everyone with Crohns has the colon involved??

Another statistic mentioned is that Colostomies account for 65%, and Ileostomies only 20%. (the other 15% are urostomies).

Other internet sites indicate that about 80% of people with Crohns will require surgery at some point in their lives. But, there are many kinds of surgery - most not leading to an ostomy.

Good luck - hopefully medicine will keep you out of the operating room!
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3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
07-15-2010, 02:31 PM   #8
Claire617
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I think it's best to always get a second opinion if your consultant ever says it's your only option. I was so ill my doctor said last Jan I think it's time we take the whole colon out and you'll be with a colostomy permanently, I was devastated!
Then I saw a string of doctors in his team whilst admitted into hospital who all agreed it was unnecessary, and I just had the ileum taken out which sorted everything!

However when it was a prospect reading these guys posts from these guys didn't make it sound like completely the end of the world
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07-15-2010, 02:52 PM   #9
EthanPSU
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Thanks for the answers, I think I could deal with it later in life, just not now. But hopefully will not need it.

And I def agree with the seconn opinion thing. This one doctor that I dont like told me I needed to be put back on a high dosage of pregnisone and repeat what I have been doing for years and hasnt worked. I went to another doctor and they submitted me to remicade....Best decision ever

Again, thanks for the answers.
07-15-2010, 07:53 PM   #10
GutlessWonder86
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just to educate everyone: a colostomy is when you still have your colon and a portion is removed and a part of it is used as a stoma (opening) to drain into a pouch. The output is still formed and you can control it and use a closed end pouch most of the time.

An ileostomy is when THE ENTIRE COLON IS REMOVED and a part of the small intestines is used to form a stoma to drain into a pouch. The output is that of toothpaste or sometimes water depending on what you eat. You can use a closed end pouch for a short time for swimming, exercising, or intimate moments but then you have to change to an open end pouch as the stoma is constantly going.

So whenever you mention that your entire colon is being removed, you are NOT getting a colostomy but an ILEOSTOMY. The correct terminology for the removal of the entire colon is a colectomy. Hope this clears up any confusion for newbies as well as vetran crohnies alike. Have a great weekend!!
07-15-2010, 08:26 PM   #11
katiesue1506
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I thought an ileostomy was just removing the ileum, a colostomy was removing parts of the colon, and a colectomy was removing the entire colon.
07-15-2010, 08:42 PM   #12
GutlessWonder86
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Now you know. When you've been an ileostomate for over 23 yrs. like myself, you learn a lot of terminology.
07-15-2010, 08:55 PM   #13
Jeff D.
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It doesn't mean that the entire colon is removed. I have an ileostomy with none of my colon removed. What I have is a loop ileostomy and they can do the same thing with a colostomy.
07-15-2010, 09:06 PM   #14
GutlessWonder86
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So you have a loop ileostomy with your colon still intact??
07-15-2010, 09:07 PM   #15
GutlessWonder86
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I was taught that an ileostomy is given for most CD who have had a total colectomy. In rare cases some pts. have temp ileostomies where their large colon is put to rest for a short time and then they are reconnected.
07-15-2010, 11:40 PM   #16
kello82
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im pretty sure the terms "colostomy" and "ileostomy" only refer to the formation of a stoma. the "ostomy" part of that means stoma, same as in tracheostomy and urostomy.
the prefix "colo" or "ileo" refers to what part of the intestinal tract the stoma is made from.
the ileostomy is formed by the ileum being brought thru the abdo wall and made into a stoma, and a colostomy is formed by part of the colon being brought thru the abdo wall and made into a stoma.

now, in most cases of any type of ostomy, some type of "-ectomy" has occured as well. a "colectomy" is removal of the colon and a "proctocolectomy" is removal of the colon AND rectum. there can also be "partial colectomy". just as in the ostomy terms, "ectomy" refers to the removal of SOMEthing, and the prefixes "colo" and "procto" specify what. this is also apparent in terms such as "hysterectomy" and "appendectomy".

SO a colostomy and a colectomy are two totally different surgeries. for jeff and i, we both had ileostomies with no -ectomies of any kind. neither of us had any parts of intestine removed from anywhere. for merrywidow for ex, she had an ileostomy AND colectomy. yes these two surgeries are done at the same time so they kind of get called one surgery, but really there are two diff procedures there.

dont quote me on all that, but im fairly certain thats the case. surgical terminology DOES follow a pattern, but is still rather confusing. prefixes and suffixes and crap......

Last edited by kello82; 07-15-2010 at 11:50 PM.
07-15-2010, 11:52 PM   #17
Jeff D.
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Kelly you are 100% correct. I couldn't say it better myself.
07-16-2010, 08:07 AM   #18
Jer's Girl
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I also have an ileostomy and haven't had a thing removed yet.
07-16-2010, 09:29 AM   #19
Nyx
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I have a colostomy and haven't had the rest removed yet either.
07-16-2010, 11:21 AM   #20
acg101
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--------------------------------------------------------------------------------

Hi Ethan,


I had my permanent Total Procto Colectomy 6 days ago and I am recovering at home.
I can share with you that it was not fun BUT the BEST decision of my life already.

For years I fought to keep my colon. I tried every medication possible, eastern and western medicine, herbs, diets, you name it.... AND suffered from occurences of severe pain, bathroom runs and it took over and controlled my life. The side effects from the meds alone was a roller coaster ride.
Nonetheless, I suffered and maintained a somewhat reasonable life.

One day I came across this site and met wonderful people like Cindy,
and Joe and Jeff and many others and came to a realization of embracing the surgery alternative.
Although I am not even a week post surgery, I can tell you that I LOVE my life better now and it will get only better with time.


Good luck - I hope you explore all options that will keep you out of the operating room!
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-Best wishes - Dan

1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
07-16-2010, 01:35 PM   #21
Jer's Girl
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Dan, the longer you have it, the more you will love it, or at least appreciate what it has done for you. Having this surgery has been the best decision (and often the only choice) for many of us. Good luck! I hope you have a speedy recovery.
07-16-2010, 01:44 PM   #22
GutlessWonder86
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Dan, I wish you a speedy recovery!!!
07-16-2010, 02:34 PM   #23
Nyx
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Glad it went well Dan Welcome to the club!
07-16-2010, 04:25 PM   #24
acg101
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Thank you all for the good wishes. I am determine to make it the best experience. I do have some set backs but who doesnt...
07-17-2010, 01:11 AM   #25
Jeff D.
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I'm glad it went well Dan. Take care, rest up, and follow doctor's orders.
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