Seconding that soap or shampoo won't hurt the stoma but make sure the area is rinsed thoroughly - if there is any microscopic bit of residue left on the skin from them it could cause leaks or issues...
Is this the first time you've actually had the pouch looked at since takedown? I know you said you had problems with strictures in the beginning, right?...
Hoping all goes smoothly for you! You deserve it!...
It's inspiring to read your story and everything you've been through. What an unbelievably strong person you are. Is the concern about the infections during another sugery just due to your experience...
Congrats to both of you! And thanks, as always, for sticking around here and sharing your stories and experiences. You (and everyone else here) were both more helpful to me during my surgeries than...
By "reassurance that everything else will work 'fine'", I'm assuming you mean with your penis like you mentioned in your first post? There is a risk that nerves will be damaged with any of the...
Have you had any blood work done lately? Any chance you've become slightly anemic? It could also be the pouchitis, and if you're having any absorption or dehydration issues that could definitely...
I tried doing kegel exercises but they didn't seem to help me much during the first week post takedown. Maybe I just didn't start doing them early enough. I've never really used the barrier creams...
Don't have much advice in the bags or the odor, unfortunately, but wanted to second what NCoT said with regards to depression and the cognitive issues you're having. There were days post surgery when...
Congrats! Glad everything has worked out and you're doing so well!...
Like the others have said this is great to hear! I hope it all goes well and you can put this all behind you!...
I used to take immodium with my loop ileo and it really didn't do anything at all for me. With my end ileo, and even now with my jpouch, it tends to really help as far as firming things up in a...
As scary and frustrating as it is to need yet another surgery/hospital stay, etc hopefully you can finally get some relief after this and actually enjoy some of your summer after the major healing is...
Don't really have any advice for you, just wanted to say that I'm sorry for all you've been going through and hope your doctor can figure something out soon....
I always sat on the toilet to empty, with my pants pulled all the way down, as kneeling just always seemed awkward and a little too close to it all for me. As others have suggested, I would sometimes...
I agree about not relying on immodium in those early weeks, however I think it did prove to be beneficial for me in getting through the initial onset that first week. I was having similar issues,...
Do you think it could be some type of partial blockage or obstruction? Has everything with your output been normal?...
I used a stealth belt a lot when I had my ileo. It really didn't make a difference wearing the bag sideways. I'd try to leave at least a little bit of slant when swinging the bag around (I wore a...
Are you sure it's fluid retention in the pubic area/surgical site? My stomach/abdomen was lopsided and sort of bloated looking (and at times would even hang/droop over my waistband If I was wearing...
Sorry you're going through all of this. I can't imagine having gone through everything involved with these diseases while still in high school. I commend you just for getting up everyday. As I'm sure...
I never really had any gas pains per se, but I know others have posted about them being pretty unbearable at times. For me the first month or so the majority of the time I went to the bathroom after...
Good to hear, glad she's doing well!...
Agree re: the exhaustion. It was a lot less of a miserable wanting to crawl inside a hole and never wake up exhaustion and more of a weight being off of my shoulders kind of relief and now I can...
It could be a few things. Like Keith pointed out, it could have to do with the prednisone tapering. Another medicine related cause could be painkiller withdrawals - were you taking/have you been...
I always brought my own thing of hand sanitizer to keep on the table by my bed. It was incredibly helpful after my first surgery when I wasn't getting up out of bed much those first few days but...
I'd second the others when saying do what you can to rule out any type of blockage or partial obstruction. About a week after I was discharged after my second surgery (which I had no real problems...
My hair occasionally fell out during my worst of flares, and then about three months after my first surgery it got really bad (as in it would clog the drain and the water would be up to my ankles...
Are the appliances you're using from a new box/recent order? It could be you've just been sent a bad batch. It's also possible that after using the same setup for so long her skin has just gotten...
I always (mostly) slept on my left side. I would sometimes also rotate my bag a bit around the snap on part (I wore a hollister two piece) so that things would definitely run down towards the bottom...
The removal of the jp drain doesn't hurt at all, but is a bit of a weird sensation. It almost feels like that feeling you get in your gut when going down a drop on a roller coaster, only the rest of...
I had three step, so my experience is probably somewhat different with regards to healing times and pain, etc than those with two steps. As far as NG tubes, those are only given when there is a...
So sorry to hear of all your trouble. It does sound like your doctors are at least in the process of getting the ball rolling so the hardest thing right now is just waiting for them all to coordinate...
This is completely untrue. This board alone is full of discussions regarding post op issues and the mental stresses that come along with them, be it for jpouch, end ileos, cancer related issues, and...
I had an illeostomy as opposed to a colostomy, so my experience might be a little different. What kind of pain are you having exactly? Is it pain on the skin from stool coming into contact with it,...
I had a similar experience to buckeye with my second surgery. Was only in the hospital for 6 days. I was expecting it to be as bad as or worse than my first surgery but it really wasn't for me at...
I know there have been a few people here that were dilated post op (and I think at least one or two almost immediately - within a week or so - after). I'm sure they'll chime in soon. Sorry you've...
What do you mean about feeling worse after surgery? In what way? The surgery and recovery process isn't fun, but I can say that after my colectomy despite all the pain I was in, I didn't feel like I...
I've been having some minor issues ever since my colectomy. For a while I'd get bad red patches on the side of my face. I remember about 3 or 4 weeks post op I started shedding ridiculously. It was...
Sorry, I thought I responded to this the other day, but I guess it didn't go through. I haven't had any significant trouble emptying since takedown. There are still times in the morning where I'll...
Sorry about all of the issues you've had. I wish I could offer something more. This has all been going on for the full 14 years? I'm assuming they've ruled out all the basics - cdiff, cuffitis,...
Yeah, I don't understand the cramping part either. Is it up in your abdominal area? I remember having some spasms and discomfort occasionally before my takedown, but it was really low - down around...
I think that's definitely something you can ask your doctor about. I don't blame you for being concerned, vomiting is unpleasant enough as it is and you've certainly been dealt an awful hand....
You've gotten some great answers that pretty much covered everything already, but I figured I'd add in some stuff from my personal experience too just for the heckuv it: Did you have a NG tube in...
Yeah the mirror was a bit of a joke. I didn't realize it had a cover over it until AFTER my final surgery. The entire time I thought it was like trying to see your reflection on a piece of aluminum...
Eva, I think you're talking about the one that's included in the hollister sample kit. It looks like a mini trapper keeper almost, right? It also had a mini mirror inside and two mesh pockets on...
Christine, I know you were asking blueglass, and her answer is probably different, but I had mine done because of issues with my pathology results after my colectomy. They basically wanted to double...
Everything you said makes perfect sense. I'm sorry for all that you've been through, but as others have said things will get better. Getting used to the stoma can take a lot of time, but it will...
I would bring back up supplies just in case. I had my scope done at the hospital where I had surgery and KNEW they had the same appliances I used and getting a back up from them was still a hassle....
I had one with my end ileo. Like smd I was completely knocked out and woke up not really feeling a thing other than anxiety (I had only had my ileo for a few months and other than my surgeon and the...
Any specific reason for not wanting to try biologics other than the idea you're "delaying the inevitable"? Honestly, if my experience had been similar to yours, I would have still been holding off on...