1 week postop. So happy but losing will.

Hi, this is one of my first posts so sorry if I do something wrong! Tomorrow for me will be one week with no colon! I was diagnosed with UC three years ago and ran the gamut of drugs (everything from remicade to Prednisone to even cyclosporine). My colon had to go! And I cannot tell you how amazing it is. There are actually moments where I feel no pain. Something I hadn't even imagined was possible. But I do have a temporary ileostomy. And while I would never go back to before, I guess I'm just concerned that its going to be impossible to hide this bag from the world. I haven't worn anything except a robe since after surgery. Any advice on how to make myself feel pretty even though my poop is collecting in a bag at my waist? Haha. I know it wounds silly that I'm even worried about that when people are suffering so much. But tomorrow is my 25th birthday and I don't want to think I'm ugly for it. Thanked again for all your support. This website Is the only way I have survived for 3 years.

Ekta

Thanks Marianne. The home nurse is coming for my first pouch change at home today so I think it'll be good for me to get a look at it at home and get comfortable with that. I know its a process that takes getting used to. I'm trying to take it one day at a time. How long after surgery did you find yourself on pain meds? I hate taking them because they make me so nauseous, but the pain is just too much. Im still taking percocet every 6-7 hours. Was that normal for others 1 week post op?

I didn't go out much when I had my temp ileo, mine was also placed even with my belly button on the right. When I did leave to go to the doctor, or the store I would either tuck the bag into high waisted panties and pull my jeans over those, or I would wear a really tight under shirt and fold the bag up towards be and no one could tell. They also make under garments for ostomies. I never bought any because mine was only temporary like yours.
I'm glad to hear you are mostly pain free! That's great!
Just a small side note, depending on the type of surgery you had, tight clothes may irritate the incision. It did for me

Best of luck!!

morethanuc said...
Thanks Marianne. The home nurse is coming for my first pouch change at home today so I think it'll be good for me to get a look at it at home and get comfortable with that. I know its a process that takes getting used to. I'm trying to take it one day at a time. How long after surgery did you find yourself on pain meds? I hate taking them because they make me so nauseous, but the pain is just too much. Im still taking percocet every 6-7 hours. Was that normal for others 1 week post op?

I had a home care nurse come to and it helped me a lot with building my confidence about doing the appliance change. I was on pain meds for a good 6 weeks because I had some complications after surgery with infection and I was in a lot of pain. Percocet made me nauseous then my doc changed me over to Vicodin and that didn't upset my tummy. If the Percocet isn't agreeing with you, ask to have it switched to something else. If you are in pain, don't feel bad about taking the pain meds. That's why they prescribe them. No need to be in pain. Feel better!

Happy birthday! You are doing so great so far. It is a hard adjustment for everyone. I was so excited about surgery and did so much reading and preparation, but I still cried the first time I had to change my wafer myself. It's overwhelming and it's more than OK to feel overwhelmed.

You will find your own personal ways of camouflaging the pouch I'm sure. Sometime I'm sure that someone is looking at me and noticing the bulge of a bag under my clothes, but all of my close friends and family have assured me that they don't see it. Truth be told, I still examine myself quite closely in the mirror before I go out in the morning and I can't see it either. As far as feeling pretty goes, I was so relieved to see that I could still wear a lot of my favorite dresses (even though it is too cold for that here!). Except for sheer white tops and jeans where the waistband hit at exactly my stoma location I have found a way to wear everything I did before. Your abdomen is probably still swollen a lot so don't feel discouraged if your clothing doesn't fit comfortably at the moment.

I have so much respect for you going through UC and surgery during med school!! I would love to chat more if and when you are feeling up to it... my email address is in my profile.

Once the swelling goes down and you can wear clothes again without them hurting, you won't be able to see the bag. I haven't found anything I want to wear that I couldn't. I don't use special underwear, I just wear two pairs. The boyshorts or hipster kinds, and keep the tail of the bag tucked under them. Also, if you tape the top of the bag to your stomach it won't flop over. You won't be able to do that until your incsion is healed though.
You will feel pretty again, I promise. One thing I can tell you, which sounds crazy, is put your make up on and fix your hair, even if you aren't leaving the house. It will make you feel more human.
And look at those pics on photobucket, you won't be able to see a bag in a single pic.

Firstly, Congrats on going through with the op, I am sure you will begin to love the bag as you realize what a new lease on life you have and that your quality of life will begin to improve day by day. I had my ileostomy (permanent) in Sept and I had all the same concerns as you regarding the bag. I was pleasantly surprised to see that I wear most of my old clothes (except some of my jeans if there waist band is at same spot as stoma). I bought 4 stealth belts - cost me a fortune and think after the swelling went down i wore them for maybe 3 weeks before they irritated me. Firstly they are extremely costly, secondly, I found that they kept rolling up and creating a bulge under my clothes which was even more noticeable that the bag and it was really uncomfortable, thirdly they made me hot and sweaty and just basically uncomfortable. I stopped wearing them and opted for spaghetti strap tops instead either on their own or under other tops if the type of material shows the bag too much. If I wear high waisted pants then tight top isn't even necessary but if I wear low cut jeans or pants then I wear the spaghetti strap tops.

Take care and good luck with your recovery!
Lolly

I do have another, slightly awkward question. But I figure, hey you guys have probably seen it all! My output has thickened considerably since discharge, which is probably just because I'm eating more solids. But things don't really fall to the bottom of the bag. Is that normal? I have to kind of squeeze the bag like toothpaste to empty. Also normal? I'm just concerned that output sitting in and around my stoma all day is increasing risk of infections and things. I've tried the thinning foods (had 4 glasses of Apple juice yesterday) but it hasn't really changed things. Thanks again for all your help. Sorry if this is a TMI kind of question. Hope everyone is feeling hopeful, happy, and great!

Ekta

Oh boy, talking about output is definitely not TMI here!

I also had very thick output post-op. I drank a lot of apple juice just like you are doing. One reason that your output is so thick right now is that the foods on the GI soft post-op diet are thickeners. Over time as you introduce a greater variety of foods your output will thin out, most likely.

There is only a risk of issues occurring with output collecting around your stoma if it pushes underneath the wafer (this is sometimes called "pancaking" -- picture it in your mind and you'll understand why). I did have some issues with this as first, which caused minor skin irritation where the output touched it under the wafer, but haven't had any trouble since I added a barrier ring (I use the Hollister Adapt Ring, many others here prefer the Convatec Eakin Seal). The barrier ring is a soft sticky ring that is safe to touch the stoma and won't "strangle" it like a too small wafer could. It's stretchy like silly putty so you just have to stretch or mold it into the appropriate size and shape for your stoma, then snug it up right against your stoma before placing the wafer. This prevents output from sneaking in between the wafer and your skin, most of the time at least! Ask your WOCN about it if you have any issues with output seeping under the wafer.

I always have to squeeze output from my pouch like a toothpaste tube, I believe this is normal :)

Last thing is that sometimes if you are having trouble with thick output sticking to your stoma it can help a lot to put some air into your bag, which allows the output to drop more freely. Hard to do in public, especially if you're wearing snug clothing that would show a lump from a puffed up bag, but when I'm lounging at home I frequently put air into my bag to keep things flowing freely. You could also try using some pouch deodorant/lubricant to help things along.