Ileostomy Stoma Photos
by Mark on Sunday, June 29, 2008 5:51This entry is filed under: Ulcerative Colitis
Instead of Providing you with ONLY photos of Mark’s Temporary Loop Ileostomy, we’ve started asking others to contribute their stoma photos. Now, please note, these are Loop Ileostomies, which means that they are likely temporary. There are other types of ileostomies like end ileo, we do not have any pictures of those.
Below is Ashely, she was about 21 years old when she had surgery, in 1 week she found out she had UC and then she was in surgery. Here she is showing her stoma, and her after the reversal her scar:
Here is Ashley’s scar after she had her “takedown’ surgery so she lost her stoma and now has a J-Pouch. Ashley is awesome and a real inspiration, here are her other photos Ashley’s Photos.
These posts might also help out:
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Eric says:
June 29th, 2008 at 11:38 am
I have an end illeostomy and it is temporary.
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mdhilton says:
June 29th, 2008 at 5:59 pm
Eric,
Thanks for the clarification. Do you know why some people get a temp loop versus a temp end ileo?
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bellyluv0sofine says:
June 30th, 2008 at 6:13 am
Thanks so much for sharing. I am due for this same surgery soon and I am concerned about the scarring as I am a belly dancer by hobby. Looks like your surgeon did a very nice job.
Carmen
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Eric says:
July 2nd, 2008 at 2:17 pm
It seems that those of us who have a “temp loop” were healthy enough going into surgery to have the 2 step process. Whereas, those of us who have the “temp end” — like myself — were really really sick. I was suffering from Toxic Megacolon (sounds like a bad nintendo game, eh?) and therefore had to have the 3 step process 1)remove colon, apply end ileostomy 2)make pouch and apply another end ileostomy 3) connect it all together. For me, surgery was not an option, it was a life and death issue. Thanks for raising these issues, I was interested in the difference and didn’t really understand it either until I started reading and thinking about your posts.
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Carter Sturdivant says:
July 7th, 2008 at 1:59 am
I’ve got some photos of mine. I just got home today from the hospital. I had my takedown operation. How can I upload the pictures or should I e-mail them?
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mark says:
July 7th, 2008 at 2:23 am
Carter, sounds like your surgery went well? That is awesome that you’ve got pictures you are willing to share! This is great because we had so many views on Ashley’s photos which indicates to us that others are in need of realistic images. If you email the pics to us, we will post them a thread: mdhilton@gmail.com
Also, if you can include any clarification text that will help make the pictures more clear to someone new, we have many people reading who are just learning about surgery, so we are trying to not scare them but help them understand through information. Maybe share your story some, your age, how long sick, the flavor of your disease, etc…
This is great! thanks for sharing.
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tammy says:
August 22nd, 2008 at 4:20 pm
Hi. Ive been trying to read and see everyones comments on surgery. I again am a 40yr.old thats worried about what the scars look like too. Seen several types of scars so I was hoping for women they do, do a bikini cut. The only thing now is just found out yesterday I am getting a hysterectomy since Im gonna get my colon out my GYN suggest go in take my woman parts too. How scary is that? I dont have a blog or anything but I would like peoples to email me and tell me some stories. I think Ill be getting my surgery sometime in Sept. beamers68@hotmail.com is my email love to hear from someone.
Scary in PA
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Mary says:
August 22nd, 2008 at 9:03 pm
Tammy,
You may want to share your story with the other women on http://www.jpouch.org
There is a whole section forum for Women’s Health & Pregnancy that you should check out. I bet you’ll find others that can relate with your situation.
wishing you improved health through your journey,
Mary
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Gil Knafelc says:
October 21st, 2008 at 2:02 am
I just had the first surgery where they removed my large intestine and made an ileostomy and and a temporary stoma. I got diagnosed with UC when I was 11. I lived in pain for 5 years. When my sergin took out my colon, he said it was the worst one he’s ever seen. My mom gave him a disposable camera to take into the OR and he got a few pictures of my large intestine! Im going to have the J-pouch surgery in a few months, and when I recover from that, I will have another surgery to “turn the J-pouch on” and reverse the stoma! I don’t care what anyone says about my bag. Even if I had to live with it the rest of my life and there was no J-pouch, I still would have done it. MY UC IS GONE! Im 16 years old and UC has put me through hell and back. I have documented my entire surgery and plan to make a website. These pictures and knowing there are other people out there really helped. Thank you!
[Reply]
Megan says:
October 24th, 2008 at 8:24 am
Gil,
You are much to young to have had so much reality already, but you do sound like you’ve got a great future. It is great that you are going to pay it forward by putting out your story on a blog.
Do tell us when you get blog up and running and we’ll make sure to let our readers know your story is available. Since UC affects so many young people it is great to have the story of young people surviving and moving on with their lives!
Keep in touch!
Megan
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Jeane says:
January 7th, 2009 at 10:43 am
Thank you so much for being so brave to share. YOu are a lovely girl and your scars will fade in time. Who did your surgery as I am in theprocess of consults now.
Thanks,
Jeane
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Megan says:
January 7th, 2009 at 12:08 pm
Hi Jeane,
Ashely is indeed a lovely woman and actually, Ashely was the first stoma Mark and I saw prior to his surgery. She had posted a few pictures on http://www.jpouch.org forum and it was from there we got the idea to document Mark’s surgery. Anyway, Ashley may not get back to you, she is happily living a very full life as a college student in Canada. I don’t know her doctors but I am pretty sure it was all done in Canada.
Megan
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Eric says:
January 22nd, 2009 at 3:41 pm
I had emergency surgery about two years ago to remove by large intestine due to UC. I lost an astonishing 65 pounds and luckily stayed alive. Doctors tried everything they could do until the only option was surgery in Cleveland Clinic. My surgeries, like you all know, left some really deep physical scars. I was wondering if anyone had any remedies or tricks to help the scars to heal along quickly and go unoticeable. I was really into athletics and had a great set of abdominals and never worried about wearing a shirt. I am sooo happy to be alive but the scars still suck. I know its definently something that would not go away with out cosmetic surgery…but I would rather not go under the knife again. Any ideas????
Much Appreciated, ERIC esemels20@hotmail.com
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Jamie Reply:
May 13th, 2010 at 7:43 am
Eric, though I am by no stretch of the imagination, a dermatologist, I have had wonderful results with Mederma. Though it is a bit pricey and takes several weeks, I have noticed significant lightening of my surgical scars along my knee.
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kenia says:
April 11th, 2009 at 7:29 pm
i’ve just had leostomy reversal about 2months ago. my problem is that I have diarreah all the time even though I’m takeing lots of medicine for it. Will it ever get better as time goes by or is this now part of my life.
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Mallory Reply:
July 13th, 2010 at 8:59 am
Kenia,
I had my final reversal done in Dec. 2008, and had the same issue for the first few months while my body adjusted. I think it is mainly a matter of healing time, and learning what sorts of foods your “new” system tolerates best.
For example, my stomach has trouble digesting meats, so I eat a TON of vegetables…if I’m not careful, this can cause major diarrhea. I’ve learned that the problem lessens when I eat small amounts of veggies at a time, and if I eat them with more starchy, “heavy” foods, such as a potato or bread product (bagels work wonders for me). Lettuce, spinach, and iceberg lettuce in particular, pull WAY too much water into my pouch, so I eat these very sparingly.
Also, do you use Metamucil, Benefiber, or anything like that? I find that the powder can be helpful in adding bulk, particularly when eating starchy foods.
Hope this helps!
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Bill Shaffer says:
November 2nd, 2009 at 10:48 am
I`m going in tomorrow to have mine reversed.I Had the surgery 2 months ago, it went quicker than I thought.I`ll keep you updated.
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Mark Reply:
November 4th, 2009 at 8:36 am
Bill – that is great news about your quick reversal time. I could have had mine at 2 months but opted for 3 because of work issues. It will be great for you to just get your jpouch and learn to live your new and healthy life. Please let us know how you are doing, and we are here if you need anything adjusting to your new pouch.
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Teneille says:
June 28th, 2010 at 7:15 pm
Ashley, You ROCK!!!! Thanks for the photos. I am a Nursing Student Grad and was researching and saw your pictures. Thanks a lot. Teneille
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sergio says:
July 25th, 2010 at 9:39 pm
I have UC for 4 years now.I’m on Asacol and Azathioprane,i don’t eat process food,spicy,or lactose.I only drink water.I don’t have simptoms,i’m feel pretty well,but i considered to have the surgery.Is the Jpouch a bag inside your body?,if it is.,Do i have to change the bag after move your bowls?.Where the excrements go?.Sorry for my grammar,is because i’m from Spain.I will apreciate some information,thank you very much and keep the hard work
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Mallory says:
July 25th, 2010 at 10:35 pm
Sergio,
A J-pouch is actually created out of your small intestine inside your body (no bag on the outside, though you might have a temporary ileostomy bag between surgeries). The J-pouch should work like your large bowel; no bag or anything to change, and you would be able to just go to the bathroom like anyone else. If you are doing well with medicine, though, then you should probably hold off on surgery unless you start having really bad symptoms.
The jpouch.net site you’re on now has tons of info about the surgery; you can find a good picture of a j-pouch here: http://www.jpouch.net/2008/09/02/jpouch-images/
Hope this helps!
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sam says:
September 10th, 2010 at 7:47 am
I had my large intestines removed three weeks ago and am having the bag reversal surgury in 28 days. My problem with this is that l am having serious depression. Some moments l feel fine like l’m the same me just go to the bathroom differently, other times I feel empty,numb, and sad. I hate the bag and can’t wait to be back to normal. Has anyone else had this problem and does it get better?
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Christman Reply:
September 10th, 2010 at 8:24 am
Depression is a serious issue – you should consult both your surgeon and your family doctor about what you are experiencing. I had many of the same feelings leading up to my surgeries, during my bag-sentence, and after reversal. I was put on an anti-depressant and it really helped. The absolute worst thing you can do about this is not doing anything at all.
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Mallory Reply:
September 10th, 2010 at 2:29 pm
Sam–
I definitely did experience this, for quite a long time, and I suspect part of the cause was the fact that I had not anticipated having the bag in the first place–my surgeon was going to remove my large intestine, but leave my rectum and other “gadgets” in place, so I had only planned on having one surgery. The surgeon–as well as my father, who came to be with me during the process–spoke to me after I awoke from surgery, but they did not mention the bag. When I pulled up my hospital gown during the night to see my incision, I was horrified to see what I knew, even in my drugged-up state, was an ileostomy. Long story short, I wound up stuck with it for a year and a half, and I was depressed about it off and on (but mostly on) during that whole period. I did not realize this site existed at the time, so I was not in contact with other people my age who had experienced the same things.
Looking back on it, I think it would have been a lot more endurable if I had reached out to resources such as this one, or confided in people about it. After my takedown, I had (and still have, a year and a half later) a number of disastrous health issues that, unlike the ileo, I truly could not hide from people–and I was surprised to find just how supportive everyone was. I am a student at a small college, so it didn’t take long for everyone to notice that I was seriously ill, and everyone was basically bending over backward to help me. I’m very open in terms of discussing my conditions now, and that has been the most liberating aspect of it.
Of course, when you hate having an ileo, like I did, NOTHING is as great as the day you get rid of it, but to make the in-between, really sucky spell more livable, it truly helps to contact people and confide in them (such as what you have done here!), and to know that others have–and oftentimes, still do–experienced similar thoughts and feelings to yours.
Sorry this message was so long, but I hope at least some of it was helpful! You can also contact me via e-mail, even if you just want to vent about stuff–mal.tift@rocky.edu.
[Reply]
Michael R Reply:
September 12th, 2010 at 8:47 am
Hey Sam,
You got to hang in there. I was told two years ago to have the surgery, but I didn’t want to because I was so scared about having my colon removed. My life has improved so much in such a short time (I had my 2nd pt surgery 2 months ago) that it’s impossible to explain. I don’t have to carry a change of clothes in my car, am not worried about having to run out in the middle of meetings at work, and am probably in the best shape of my life. I was not happy about having a bag either, but kept telling myself it was just temporary and counting down the days. Even the bag had it’s benefits over colitis and I’m sure you’ve experienced some of those. My transition was not smooth – I had two major blockages, one that put me in the hospital for three days, and my recovery from the 2nd surgery was a nightmare. I had to be reopened during my takedown so they could fix the kinks in my intestines and the pain during recovery was so intense I had to be put on painkillers given to terminal cancer patients. BUT I kept telling myself it would get better. In recovery I started a list of all the things I wanted to do that I couldn’t do before (or hadn’t done in 10 years) because of my colitis. This helped me stay focused on the positives. I also had read enough terrible stories about people’s colitis experiences on the web to know that my situation was not nearly as bad as what others had experienced. I tried to remember that no matter how bad I thought it was, there were others who had it worse and they made it through to the end. Keep your head up and know that good times are coming, even though it may not feel like it now. The bag is just temporary and it’s just a matter of time until you feel great again. Feel free to talk about your concerns or problems here and we will do all we can to help.
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Terry says:
September 10th, 2010 at 1:55 pm
Sammie, I didn’t go through depression but it is understandable and you do need to discuss with your doctor. Excellent news is that you will have your bag reversal so soon!
I had to wait for 10 months. I want to address the leakage issue: My “wound ostomy/stoma nurse” (available at the hospital) helped me through leakage and other “mechanical” issues. If you have that kind of nurse avalailable, she or he can help. I regarded mine as an absolute saint. Her mantra was to make sure that there was “no poo in the shoe”, meaning no leaks. Also, the companies that sell supplies have help lines if I recall correctly. I had a few leakage issues, changed my bag about every 5 days which was good. I emptied it frequently, never lettign it get more than 1/2 full, and “bleeding off” gas that expands the bag. But there are so many bags and attachment types that you need to find the right ones for you. That’s where the supplier and/or nurse can help. Best of luck to you and congratualtions on getting close to the bag reversal. There will still be challenges but that won’t be one of them! Please keep us posted on your progress. I’ve found this to be a very caring, helpful group, and we want you do do well. Terry
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Individual says:
April 11th, 2011 at 12:21 pm
Why is Ashley awesome? What special thing did she do?
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Jennifer says:
May 29th, 2011 at 11:34 pm
HI thanks everyone for writing al the comments. I am 33 and about to have part of my large intestine removed in a little over a week and have an ileostomy. I am doing my best to stay positive and remind myself that my quaity of life needs to improve and this is the only way. i have had chrons disease for 14 years and the 4 years have been awful. Up till then I felt pretty good. There is hope that my intestine will heal finally and I will be able to have it reversed in the future. I am hanging on to that thought but I am still feeling really sad about the whole thing and scared. I found a support group in my town but what else can I do to move forward after? i feel like I have another long road ahead and im telling you its been a really bumpy year…………
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Relocating to Portugal…
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