I had a total colectomy with the same terribly painful night, only my perforation wasn't finally caught until I was almost dead. It took 2 1/2 weeks for them to notice the herniation and perforation that I had. My abdomen was the size of a woman 6 months pregnant. My breathing was labored and shallow, I was non-responsive and had just been moved to ICU. They drained 4500cc's off my belly. Finally, my husband called in the best intensivist known, who saw a fluid level on one of the CT scans. I was rushed into surgery, given 2 pints of blood, and a temp ileostomy. I spent the next 2 weeks in ICU and another week in the hospital with WBC's 40,000, plts well over 1,000,000, and alk phos in the 500's. I had to wait 4 months to have my ileo reversed but I'm glad I did. My reversal was 2/6/06 and I'm feeling fairly normal now. 6 weeks has been the marker for most of us to feel "back to normal"
I had breakdown around my stoma and we used calcium alginate, and it healed fine. My stoma stuck way out so I didn't need a bar. It sounds like you need a barrier between the bar and the skin to protect it and let it heal. I lost 27 pounds, I went home from the hospital with the ileostomy and a feeding tube/pump because I wasn't eating well. By now, I've gained about 10 lbs back. I'd like to not gain any more. The feeding tube gagged me so bad that I finally made my husband pull it out. Little my little I started to eat. I eat whatever I want now. I know that certain foods don't set well with me, like chinese food and brussel sprouts. But it's been trial and error.
A couple of things that I wish someone had of told me: You will get through this! This too shall pass! You're doing a great job and hang in there. My husband might even have said those words, but he hasn't been through this, so he can't know. I have been there, I've got the scars. You can believe me, I understand.
Cathy, thank you for your response. I've just returned from the surgeon's office and he's scheduled the reversal for June 21, assuming everything is ok with the barium enema I'm having the week before. He said the ET nurse could remove the bar because he doesn't think there's any real benefit to leaving it at this point. My concern is that the stoma is already so flat that we'll have problems getting a good seal with my pouches.
It sounds like you had a horrible time. My case was very similar except I was lucky that they found the perforation right away. I was told prior to surgery that I may not make it out alive. After years of working as a nurse, I knew that statement wasn't made lightly.
Hopefully if the bar is pulled we can manage to find something to keep me from leaking. I will not be returning to work before the next surgery ( I'm a clinical director with hospice) so at least I won't have to deal with this while I'm working.
Were they able to do your reversal through the stoma or did you have another incision? My surgeon says he won't know until he gets me in surgery but there's the possibility that he will have to re-open the larger incicsion in order to reconnect everything. My current incision starts a few inches under my breasts and ends around my bikini line (around 12 inches or so). I really hope he doesn't have to re-open that incision.
Thanks again for your response. I appreciate it.
Hi Chertuc, Well between you, Cathy W and I, we make a regular little scar group huh? Keep you're sense of humor. It will help you through this. My story is similar to yours and Cathy W's, except they found my perforation of the colon the day after they did the colonoscopy to try to find out where I was bleeding from for the last couple days. This was in October '05. It may have been caused by the air that they use, who knows, and I don't blame the G.I. Doc. No doubt I was pretty damaged anyway in there after 15 years with U/C. Anyway, they did the subtotal colectomy on my and told me also about 6 months before I could have the reversal. I also had an ileostomy that had a plastic hoop in it to keep the stoma from dropping back down, but they took that out after about three weeks. All was fine. Then in February (because my gall bladder was acting up also) they decided rather than open me up two more times, just do the reconnect and give me a new ileostomy while it healed.
They went in through the same incision as the first, reconnected me and pulled the small intestine over to where the first ileostomy was and gave me a new stoma so it would drain into the bag while the bottom part healed up. This was all well and good except they really had to pull it and as a result, my stoma was in a convex type position, and yes, it was a booger to bag. In fact, while I was in the hospital, it started to leak on a Saturday. Fortunately I had taken some of my own supplies with me, and of course no Stoma nurse was on duty, so I sat on the toilet showing the nurses on the floor how to put on a bag. It was crude and didn't fit well, but got me through a couple days. Then of course, the skin became irritated because it wasn't a tight fit and we had to clear that up with some sulfa. Anyway, to make a long story short, I went to see a good Stoma/Ileostomy nurse and she fit me with a convex wafer and bag, a one piece. It also had belt that connected to it for added security. Heck, that thing was not coming off no matter what. So take the time to find someone that knows the products, and they will fit you right. Convatec made this one, and there's about 100 plus styles out there.
Now back to the reversal. It's not bad as they just disconnected the second stoma, sewed it up, tucked it in and gave me two sutures. This allowed the opening to fill with scar tissue, and the final scab fell off a week ago. I am currently in week 5 of post take down and starting to get the feeling of controlling my movements, and experimenting with different foods. Like Cathy W said, and she helped me through my first miserable weeks. It is trial and error. Looking back, my worst night was when the movements first came after surgery when everything woke up. Just be prepared and have some good cream to put on the bum when you start moving. Head off the butt burn if you can. Now that I am in week 5, I feel I'm turning a corner. I had a good dinner, steak and rice with garlic toast last night and not trotskys after that. A good sign. It all just takes time.
It will work out for you, and we are all here for you when you need an ear. Like Cathy W said, people can tell you all they want how sympathetic they are, but unless they've been through it, they don't know. God bless and keep us posted. Phil
You're right about the incision Cathy. We discussed it yesterday and he said he would prefer to make a smaller incision next to the stoma but depending on scar tissue, he said he may have to open the original incision. That incision is very large (around 11 or 12 inches) and I'd like to avoid having the entire incision re-opened but whatever makes it easier for him is ok with me.
The rod was removed yesterday and I had my first leakage problem last night. I was afraid it was leaking from under the flange but I'm wearing a 2 piece appliance right now and it had just come loose at the bottom. Regardless, it upset me quite a bit but my husband helped me get things cleaned up and the bag back in place. He has been absolutely amazing throughout this ordeal. When I was still too weak to empty and rinse out the bag, he would help me when the aides didn't respond quickly enough in the hospital. I am very blessed to have someone with such a great attitude.
I'm also very grateful to those of you that have responded to me. I found this site when searching for information about my condition and it is truly a wonderful source of support and information. Even though I am a nurse and supervise about 100 other nurses, the inforomation I'm getting from this site has helped me tremendously.
Chertuc, I know that you don't want the surgeon to go back in through the initial incision, but everyone told me and it was true that the second time around isn't near as bad as the first. Probably because you are more prepared for it. You aren't prepared for crap when they do it emergency. Glad to hear you are getting your bag under control also. Your husband is an absolute doll for helping you out. I was also blessed with a wonderful wife you really helped me, especially with the second stoma as I couldn't see it to put the wafer and bag on. It was even difficult with a mirror, so she did it for me each time.
Like I said, when you get a chance, get ahold of a good stoma/ostomy nurse, and they are worth their weight in gold. Nothing against the regular nurses, they just have very limited experience with them and don't have occassion to keep up with what's going on. After they did my reconnect, I was in the hospital recovering and I had a regular parade of nursing students and medical school students that would come into my room, check out the stoma and the whole deal. One of the nurses asked before that happened, and I told them they were more than welcome and I talked to one student for about an hour about it. He had so many questions. After you lose your modesty, it's not that bad. Hang in there. Phil