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Ostomy/Incision Pictures (Somewhat Graphic)
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hannahleigh89 posted:
I don't know how well this will work but I'm gunna give it a shot. I'll take some more when my mom gets home in different clothes so you can see how it looks under a variety of things. This is the type of stuff I've been wearing at home since before the surgery, although the shirts I wear a little looser now.

I decided to include one of the incision too, but don't be frightened. I want to actually show you how small it is. It's hard for me to believe they pulled my colon through that opening. Yours won't be open like that though. They had to reopen mine when I went back to the hospital a week or so later because it got infected, but when I first came home, it was glued shut and I didn't have any problems with it until the pocket of infection built up behind it. It didn't even hurt that bad, and it still doesn't hurt as bad as it looks like it does.



And the squeamish had better look away. Here comes the incision.


The bandaid on the left of my abdomen is covering up the hole where they had the drain tube inside me after the surgery. I was having to use gauze 4x4s folded over and taped because there was still fluid coming out, but it has scabbed over so now I just use a bandaid. I also had an incision in my belly button that became infected, but now it has almost completely healed, which is exciting. I may try to put my belly button ring back in soon.

Hopefully these help a little bit. Like I said, I'll try to get some more in different clothes (like a pair of jeans and a cute top) and I'll tuck it in and all that to show you how it looks that way. I just can't get the right angle to take them so I'll have to wait until my mom gets home, lol.
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mindyj1971 responded:
Now THAT'S an incision! It looks so sore in the picture, but it also looks like it is trying to smile:)
I'm gonna have to remember to start ordering the opaque bags instead of the nasty clear ones. I always forget when I place my order and end up just re-ordering exactly the same thing. Yours looks much more attractive!

Hugs to you!
Mindy
 
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hannahleigh89 replied to mindyj1971's response:
I also noticed that it looks like it's smiling, lol. And yeah, the opaque bags are much nicer. I feel less gross now, lol.
 
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arbob2 responded:
God bless you Hannah. You are indeed one of a kind. Your pics tell all of us so much and we appreciate it. So many questions and your pictures really shows us clearly. Some of us may have to have this done and if so, you' ve shared this and it means a lot.

Thanks. You're special, no doubt about it.
 
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Louise_WebMD_Staff responded:
Wow-thanks for the pictures. The last isn't how I pictured it but good to know.
 
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tw33ti3 responded:
Hannah, you are an angel for posting your pics for me. It looks like your incision hasn't even healed yet and now I feel bad for even asking you do such a thing...... I almost cried when I saw the pics.... not because it looked horrible or painful, but for your loving heart to go through such trouble for a stranger. Thank you so much for sharing, from the bottom of my heart. The reason for my late response is that I have just been emotionally unstable and cried my eyes out for the past few days....

The pouch is much bigger than I'd imagined. I didn't think the bag will go all the way below the waist. How do you keep it tucked under the pants? It's hard to imagine.

I can't thank you enough for all your help and support. You are a sweetheart. Please take care of your self.

Hugs,
Jamey
 
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hannahleigh89 replied to tw33ti3's response:
When I'm at home, I don't tuck it in. But when I'm out doing stuff, I just keep it fairly empty. It feels gross stuck against the skin on my leg, but I think that's just because it's been so hot here lately. They do make smaller bags, I think. They come in two standard sizes I think, 10 inch and 12 inch. And then they have smaller ones for special type things. Like, they make small ones that you can use if you want to go swimming or have "intimate moments." I think they also make a cap you can put on, but I have no idea how that would work because it certainly wouldn't hold very much. I'm looking for a link now that shows the different kinds they have. I got a book from the hospital when I left to help me pick which ones to order.


Found one!
https://www.edgepark.com/information/education/ostomy/

I use the Sur-fit autolock two piece drainable ones by Convatec. And you're very welcome for the pictures, I certainly don't mind. The incision looks worse than it is, most days. I mean, sure it hurts, but it's not so bad. And like I said, it wouldn't be like that if I wouldn't have gotten such an infection. They opened it up because they needed a way to get all the infection out, and I'm not really supposed to let it heal. I have to keep gauze and stuff packed down in it so that it has to heal from the bottom up, so it's going to take a while.

I haven't yet gotten the pictures of it in regular clothes because my fever has come back and I've been feeling crappy the last few days. If it doesn't go down and I don't start feeling better by Wednesday, I have to go back to the doctor in town and have more blood work and stuff done. I'm just hoping I don't get stuck back in the hospital. Anyway, I'll try to get those pictures to you soon to try and help ease your mind. I know it looks awful, but I promise it isn't that bad. Even with the extra problems I've had from the infection, I still feel better than I did before surgery.
 
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mindyj1971 replied to hannahleigh89's response:
Hannah, just wanted you to know that I have ordered specialty ostomy undergarments from a company called OstomySecrets. They are snug fitting undies that have an extra "layer" of material inside (kinda like a kangaroo pouch) to hold your bag. It keeps the pouch from laying directly on your skin and provides soooo much more support than regular undies. They also have shorts and pants and I just found another site that had jammie pants! They look so comfy! That has been my biggest complaint before I got these items....when the bag starts to fill you can feel it pull and it made me nervous because there is no support with regular clothing and undergarments! Now everything is kept close to my body and nothing is just hanging there. I feel so much better when wearing these items:) The material is kinda like bathing suit material, just to give you an idea. You should check it out.

Hope you are doing better by Wednesday!
I tapered my prednisone by another 5 mg today and for the first time in months I am running a fever:( I have also had some pain in my stoma, so I just know that things are getting stirred up in there again! Gonna try to stick with the taper, though!

Hang in there!
Mindy
 
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hannahleigh89 replied to mindyj1971's response:
I don't think I could wear the underwear, but the wraps might be helpful. If I was going to have mine longer, I would definitely order one to see but I'm going to have to decide if it's worth it or not. It's not something you can really hand down to someone else when you're done with it, lol. I don't know anybody else with an ostomy.

Having support would definitely be good though. I find myself holding it in my hand when it starts to get anywhere close to full to keep it from pulling, and I know it's gross but I can't help it, lol.

I hope your taper goes well. I hate that you're having so much trouble with it.
 
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hannahleigh89 replied to mindyj1971's response:
I showed my mom the wraps and she thought it was a really good idea, so she went ahead and ordered me one, lol. Whenever it comes in, I'll let you know what I think.
 
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mindyj1971 replied to hannahleigh89's response:
I have a wrap, too. I love it, and I think you will too. I was doing the same thing you were, holding on to that stupid bag when it filled up. Even though I knew it wasn't going to just come off of my body from the weight of it, it sure felt like it could! The horror of thinking of that thing exploding all over the place was enough to have me holding on to it until I could get in to the bathroom, too. Oh, the adventures we go through!

Hope you like your new stuff. I'm not sure if you are one to wear summer dresses, but their was no way I could wear anything like that before I had this new apparel. It's even good to wear with baggy sweats or just comfy pants and such!

Let me know what you think:)

I'm having a much better day so far with my taper. I think I just needed to get caught up on some sleep. No fever today....yet! YAY!!

Talk soon-
Mindy
 
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hannahleigh89 replied to mindyj1971's response:
Me either! 98.4. Lowest it's been in a while. But I finished my cipro today so I'm hoping it doesn't come back now that there are less antibiotics...
 
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tw33ti3 replied to mindyj1971's response:
Hi Mindy. How are you doing w/the taper? I've been on humira for the past 6wks and it hasn't helped a bit if not made it worse since I couldn't be on predinisone at the same time. So we've given up on humira completely and I just started taking prednisone again 2 days ago and I feel like a new person again.... I call it the miracle drug. Works like magic for me.... can't believe how quickly it kicks in and stops the diarrhea. I have an appt w/the surgeon on Monday to go over details and am trying set up w/another one for a second opinion. Maybe even go for a third? I think I'm in panic and can't think straight at this point .

Well, I'll take it one day at a time for now. Today is a good day because my 7yr old is back in school! My 4yr old girl is an angel when her bro is not around . With prednisone in my system, I think I can finally get some chores done around the house today . Take care and let's talk again soon!

Jamey
 
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mindyj1971 replied to tw33ti3's response:
Hi Jamey! Had a horrible taper down day on Monday. Slept very little Sunday night so that did not help at all. I'm on day 3 of 25 mg and that is the lowest I have been in 4 months! Monday was just one of those days that I had to spend in bed. I just hate that....I could not function and for the first time in months I was running a fever. I know that the inflammation was getting stirred up in there since I tapered a little that morning, but I seem to be doing ok now:)
I, too, wish that I could just stay on a teeny dose of prednisone forever. It is the only thing that allows me to feel human. Unfortunately, my bone density scan has already diagnosed me with osteopenia from all of the steroid use, so I know they will not let me continue on this stuff for much longer.
My kids start school next Wednesday and it will be the first year that both of them are there ALL DAY!!! YAY, I finally have my youngest in first grade! She is a pistol and it has been a long summer! LOL! Ready for some peace and quiet! I know that I will be begging for something to do by the 2nd week of September, but there are projects around this house that I have put off for way too long!
I've never been on Humira. My doc did try to start me on Imuran along with my Remicade, but it takes about 3 months for it to take effect and I ended up needing surgery again, so I had to go off of it because it is an immune suppressing drug like the rest of them. I don't know if my GI will want to restart that or not. I will be seeing him in October and I think my choices will be 1) Start Imuran again 2) Take a trip to The Cleveland Clinic 3) Have colon and rectum completely removed and have a permanent ileostomy. Now, if by chance the prednisone does its job and clears things up in there, there is always the possibility of having my colostomy reversed....but I am not holding my breath on that one.
I'm so glad that you are getting a couple of good days in with the prednisone! It is a potent medication. Wish it wasn't so bad for us! Hope that you get lots done and get to have a little fun in there somewhere!

Take care....look forward to hearing from you.
If you ever want to e-mail me, my e-mail address is
mindyosercovel@hotmail.com

Hugs-Mindy
 
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hannahleigh89 replied to mindyj1971's response:
Hopefully with the kids being off to school all day you'll have more time to rest and get your body back to a somewhat healthy state. I know it seems impossible, but we're all pulling for you, Mindy.

I also wanted your opinion on something. I'm going to visit my cousin and her family in Kentucky this weekend. She has two small children (one's three and the other is 18 months or so) and they don't normally stay in the house much. So while we're there this weekend, they have planned for us to go to the Kentucky state fair and then to a water park... Do you think I'll be able to do much at the water park? I know that you're allowed to swim one week after the ostomy surgery, but I have that big open incision... I'm thinking if I pack it real tight, tape it up real good, and shower as soon as I get back to their house to clean it out, I should be fine as long as I don't spend a lot of time in the water. I'm going to look for a new swim suit as the only ones I own are bikinis... And I'm not sure the world is ready for that yet, lol. Although if I can't find one, I did try rolling my bag up and tucking it into my bottoms and I think if I wear a loose tank top over my top, you won't be able to tell too much... So I don't know. I just wanted your opinion, because those babies love to be in the water and I don't want to miss out on playing with them.

My fever is also back, sort of. It's been coming and going all day. And I've been hurting a lot today and my incision is draining a lot more than it usually does. But I also cracked up hard for about half an hour, and I think laughing so hard may have made it drain/bleed more. I don't really know what was so funny, I think I'm just stressed out and tired, lol. My boyfriend has made a habit of showing up around 2 in the morning and asking me to cook something for him, so tonight when he got here, I told him all we had was crackers. And that's all it took. Then he asked if there was anything to drink, besides cracker juice, and that was hilarious for some reason too. And earlier today, I took my fingers while my mom and I were changing my bandaging and made my incision talk to my mom, and it freaked her out and I thought that was hilarious too, and then when I told him about it, I started cracking up all over again.

Anyway, now I'm just rambling. I'm going to go try to wake him up and get him to eat the chicken he insisted I cook for him. It's cold now... It's nearly impossible to wake him up once he's out. Oh well. Hope you're feeling better, Mindy! Along with everybody else.


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