I had my reversal in January after having my colon removed in June of '09. The surgeon said my rectum looked good, so he left it. Once healed, I had the reversal and have had no control issues, and...
I went into the hospital with my hemoglobin at 5.3. They gave me transfusions before they took my colon and now my hemoglobin is back in the normal range - haven't had a transfusion in a...
I had my colectomy & ileostomy last year two days after starting my present insurance. I had my takedown in January of this year with the same insurance and it was covered. I did call them...
minxycat - No, convex barriers and rings can be used if your stoma sticks out, too. My stoma stuck out about an inch, but I still had to use a convex barrier and convex ring to prevent leaks due to...
That's great! I'm almost two months out from my takedown (Jan. 23rd) and butt burn is one of the things I had been worried about. I'm happy to say that I've not experienced it at all! I'm down to...
I'm with NASCARon. I call it a bag. I had gastric bypass five years ago and that's what I call my pouch - that's how it's referred to in that field. I recently had my ileostomy taken down and I...
Hi, all. Sorry I've been MIA, but I finally came home on Wed. (2/3). So far, so good. I had a rough couple days last weekend with nausea and almost ended up with an NG tube. Thankfully, the nausea...
Hi, all. It's been awhile since I've written - and I've read FAR more than I've posted. Just wanted to say I saw my surgeon today for a follow-up and he said everything looked good. I was hoping I'd...
Thanks for the info, Devin. I went into surgery this past June thinking that I would not be able to have a reversal due to a prior surgery I'd had and came out to learn it was still a possibilty. I...
I can vouch for the Sure Seals, too (thanks, NASCARon!). I had my surgery in June and it took awhile for me and my WOC nurse to figure out what would work for me. My leaks would always be under the...
Summerstorm, I just went to website and voted. I also wrote a comment. Keep us posted if you get any response from them!...
Summerstorm, thanks. I'll give the gas-x a try. Whatever I eat seems to go through me pretty quickly, too. Does it help to take it before eating? I don't worry if I'm just home...I can take care of...
Ralph, I have the same problem. I feel like I'm pregnant on my right side with all the gas that fills up my bag. Part of my bag hangs up over any waistband and that's what fills up with gas. I can't...
I drink a lot of the Crystal Lite type drinks and the red ones really affect the color of the output. Purple and blue do, too, but not like the red....
I feel the same way. Sometimes I feel like I've got an IV bag hanging off me. I know it saved my life, but I still have those "Why me?" days. I'm also job hunting, so add that stress and I do have...
Thanks, Hodaya. I'm hoping a reversal is possible for me, too. I have to try! Anyone know if it's okay to post youtube links in here? I ran across a couple humorous son parodies tonight (Colorectal...
LOL - too funny! Although, my stoma (Sybil) could probably blow bubbles if she was in the mood! [hee hee] I don't think it would come out sticky, though. I haven't chewed gum in years, but I know if...
Conmarjo - I had my surgery in June. I feel like I've got most of my energy back, but am sometimes still wiped out. I get together once a week or so and bead with some friends and even just sitting...
Jenise - Thanks. I hope so, too! Christy - I failed all meds. Was on Prednisone for over two years and every time they'd try to wean me off, I flared at the lowest doses. Had a colonoscopy in May and...
I'm hoping to have a reversal. I had my surgery in June and go back to see the surgeon on November. Right now I'm emptying the bag about 4-6 times a day, but would gladly poop 8-10 times a day just...
I was on Remicade for six months. Three days after my first infusion, it started working. I felt almost normal again. I was still on Prednisone at this time, too (finally got off in January). Remi...
My stoma (Sybil) is an outtie, too. Due to weight loss prior to this surgery, my skin is not flat around my stoma, so the convexity is what works for me. I also use a skin cement (Osto-Bond) and have...
I had 41 staples after my surgery in June. I'd never had staples before and wondered about getting them out, too. I went to my surgeon's office to get them out. They didn't numb me, but I hardly felt...
I use Hollister New Image, so I can't help you with other products. I use convex barriers and rings. One other thing I use is a skin cement called Osto-Bond. I put it both on the barrier and my skin...
I started Remi in December '08. It started working about three days later, but the next few doses it seemed to lose its effect. In May, they upped me to 10mg/kilo and I don't know if that was it or...
I rinse mine out, too. I carry a little travel-sized bottle of water in my emergency kit....
UC Wife - I use Hollister New Image 2-piece (convex barrier and ring). I've tried their moldable ones, but they didn't work as well for me, so I think I'll pass on them. Since I started using the...
Thanks, Ron. That sounds like something I might like to try. I just may order some next time I place an order so I can try them....
NASCARon - So if I understand this correctly, you put your wafer on, then put the sure seal on top of that and then the bag? This might be something I want to look into. I had my surgery in June and...
Thanks, Emma - not a problem. I've reached my insurance out-of-pocket now and things are much cheaper, at least 'til the end of the year. ;) I know there are orgnanizations or hospitals glad to have...
UC Wife - This is great to hear. It's stories like this that really solidify my desire to have a reversal if/when possible. I don't want to wonder some day "What if?" if I don't try it. I don't think...
I use Hollister New Image two-piece. I'm currently unemployed and could use all the help I could get. These things are expensive! I use convex seals and wafers...the flat don't work for me, though....
Well, I'm such a newbie at this (just had surgery in June) that I cover up my pouch when showering. I take a ziploc bag (quart size), leave it zipped, and cut from the zip to the end of the bag (got...
Thanks, Heather. That's exactly what I need! I like the buttonhole extender from Miles Kimball the best. And I'll check out Old Navy, too. There's one just a couple blocks from me. I like the...
Holly - I, too, had pancolitis, but I never really had an urgency problem before surgery. I'm going to have to try some low-rise jeans. I've not always been in a position where I could burp the bag...
Thanks, Liza. Yes, I am so far wanting a reversal, too. I'll keep my fingers crossed for it. The urgency certainly can't be any worse than before surgery! I'm unemployed, too, which is another reason...
I have the same questions as Liza. Do any of you regret having a reversal? How bad is the urgency versus having the ileostomy? I've been on several meds since being diagnosed, ending with Remicade. I...
I just used the Miralax w/Gatorade last week. This was the best one I've tried. Previously I've used the Fleet phospho and Golytely - hated them both!...
I started Remicade in Nov. '08. It worked for me about 3 days later. However, it's not working so good for me now. I started flaring in Feb. with the big D since then, but not a lot of blood. I had a...
Yup, same here. Mornings are the worst for me. I do have some during the day sometimes, though, and usually one or two in the evening. I'm in a severe flare right now. Had my scope last week and...
I got mine through medicalert .org. I have all my medications, illnesses, doctor, and emergency contact listed with them so if need be, someone can call the number on my bracelet and get my info. I...
I had this about three years ago. It was second in line for pain for me, just behind kidney stones. I couldn't even pass by a sunny window with my eyes closed without getting hit with severe pain. I...
I've been on and off of it a couple of times. It takes about 3-4 months to really start working. I've been taken off of it as it lowers my white count. Several months ago I had the TPMT blood test to...
Yes, I've been having quite a few of those days lately. I've been in a 2-month flare and so far nothing is helping. Remicade helped the first few times, but then I weaned off Prednisone in January....
Lou - I was told to take four weeks off after surgery, but I actually took six. It's not that everyone needs all that time to recover, but a lot of it is to get used to your new way of eating and not...
Joy, I'm not offended at all. I hope I never need surgery, either, but if I did I'd end up with an ileostomy and be stuck wearing a bag for the rest of my life. Not my first choice, but the gastric...
Fitzky, you're not the only one who's thought that. I've heard people say those of us who've had the surgery have taken the "easy way out." It's by no means easy. It's a lifestyle change, a forever...
It's not out of the question. I was diagnosed with UC in 2002 and had gastric bypass in 2005. For me, three things had to fall into place - I had to be in remission, I couldn't be on prednisone, and...
Big Dog - The test is called a TPMT, which will show if you have the enzyme activity to properly metabolize 6-MP. It's only done by Prometheus Lab in California. I have been taken off of 6-MP twice...
fate...