Home five days after a total colectomy

Perforated bowel followed by emergency surgery. No prep given on what to expect, how to live with this, what comes next, ext. Doctors and nurses are being very helpful but I would like a good overview of everything. I have looked at a lot of web sites. What is missing is really good medical descriptions plus good common every day facts. Does anyone know of a book that is a good resource?
Recovery is very slow. I still can't walk or shower by myself. I am having a lot of trouble forcing myself to eat and drink. The shock factor still seems pretty big.
Fevers stopped two days ago.
Would appreciate any newby advice

I ditto what was just said. I don't know what I would have done had I not found this site. I found this site and learned so much.
People on here have lived it. They know what they are talking about. Ask your questions, take their advice. In my case what my ostomy nurse said and my home health nurse said none of it worked for me. I learned what worked best for me but finding this site.
Good Luck and come on back and maybe one of these days you will be giving a newby some advice about what to do.

I think the most important thing you can develop in this situation is patience. It takes some time to get the hang of everything and obtain some level of comfort, so you have to allow yourself that learning process. It really does get easier and become a normal part of your life! If you have any specific questions, the people here are wonderful. For now make sure to get plenty of rest, eat what you can to get your strength up, and be gentle and patient with yourself as you heal and adapt. I'm sure there is a bit of shock since everything happened so fast, so don't be surprised if you have some really turbulent emotions once you get a chance to just slow down and take everything in. Do you have home health care to help you with your pouch changes while you are still learning? That was a huge help for me!

Just remember....once you get healed up and strong again there isn't anything you can't do with an ostomy. You can (and will!) lead a full life and you will be healthy.

Subzero and Mollie -- you have both been through a lot. I am a newbie too, but a bit further along than you are. The comments above are all right on target.

I found The Ostomy Book, but Mullen and McGinn helpful. Not nearly as helpful as this site, but sometimes it's nice to have a book.

Here are some thoughts on your questions, Mollie:

1) I have to go with run4 that patience might be the best piece of advice. The same solutions don't work for everyone, and things get better w/practice. If you start out very sick, like both of you did, it can take a while to heal. Be nice to yourself about that, you've been through a lot.

2) Yes, I think most people try different bagging systems. I don't know if I've found the "right" one, but I've found one that works well for me now, and I don't want to mess with it...

3) I stand. There have been other posts that talk about the wafer sticking better if you stand to put it on.

4) People here have different suggestions about the skin irritation. Is it right around your stoma? If so, I'd go for an Eakin seal -- I had some problems there at first, and haven't since I started using them. I am also fond of the sure seals, which I learned about from this list.... they are clear and thin and go around the wafer on the outside to hold it down better and make it more water proof.

Hang in both of you....

Hi, try the mouldable wafers, the don't need cutting to size they just fit snugly around the stoma and prevent leaks and no need for seals or paste. Also skin prep stuff like the powder can effect the time a bag stays on and tends to make it need changing more often.

I would say get loads of samples from the different companies, they all have websites online, cut a small piece of the adhesive bit from each wafer/bag and stick them to yourself and leave on for 4-5 days and see if any allergic reaction occurs. Much better to find out from this way than by using the bag and discover it has irritated your skin around the stoma.

Also check on area of skin away from stoma to see if allergic to all the stuff you are using like wipes, paste, adhesive remover etc. Other people on here have found the bags and wafers ok but couldn't understand why skin irritated and then found out allergic to wipes etc.

Subzeromambo-

Sorry you are having such a rough time with your incision. Mine opened up all the way through the muscle layer two weeks after surgery, and I had to go back to have it closed immediately. The surgeon stitched it back up because the muscle layer was involved and that could not be healed open as it would have left a hole right into my abdominal cavity. The stitched up wound started healing great, but then several week later it opened again-- only this time just the superficial skin layers above my ab muscles fortunately. It continued to get worse, then I got an abscess there and my surgeon discovered I was having a bad reaction to the dissolveable sutures. Had to go back into surgery and have the entire length of the incision opened up and cleaned out, and this time it was left to heal open. I know what you mean about it looking freaky. I had to mentally detach myself when I looked at it, because it didn't seem right to have an open wound that big on my belly. It was 13.5 cm x 3 cm x 1.5 cm deep and I could see the my muscle layer at the bottom. I got a wound vac which helped speed the healing, though it hurt like crazy the whole 6 weeks. But it did heal amazingly well, and now the scar is not too bad. It started filling in with granulated tissue and then sort of zipped itself up from top to bottom. Pretty amazing what the body can do! I remember being incredibly worried that I would get stool in my wound, but that never happened. I was also scared that my appliance would no longer stick well because I have such a big indentation there (my belly looks sort of like a split top loaf of bread) and my wafer overlaps it a bit. So far I haven't had any problems though. Sometimes my appliance peals up slightly on the scar tissue of my incision, but as long as I use an Eakin Seal around my stoma, I am good. The hardest thing was that wound drainage would sometimes make the wafer not stick, but once I got the wound vac, that was solved because it keeps things very dry. Doesn't sound like you have a wound vac, but healing open with gauze works well too. Just takes a little longer. I am using Coloplast wafers now, but also like how the Convatec samples I have tried seem to bend with my incision indentation better. Still trying to decide what appliances to stick with.

I agree with Blueglass that the Ostomy Book is a good one. A bit outdated on some things, but still very informative. Especially some of the chapters that deal with the emotional side of things.

Try the Evansville Ostomy News.  Great insights.

I am doing better on eating solid foods and getting my appetite back. Thank you for the warm welcome and good advice.
SZm

Christine,
I am amazed at what you have gone through and still kept your sense of humor. Being a single mom is hard enough but to add all of these physical challenges plus the death of your father leaves me breathless. You are doing an incredible job of managing everything.
My only worry is that you aren't giving yourself time to breathe and regenerate. My mom, single mother of five and an overachiever, is the same way.
Thank you very much for your descriptions of what you went through. It helps me to know what could happen in the future. I also liked your keeping track of improvements. My improvements seem so slow but by comparing them over a period of days instead of day by day, I do see encouraging signs.
Many cyber hugs,
SZm

subzero that's exactly what happened to me! I have UC and my colon perforated while I was at the hospital. I had a colostomy though for 6 months, they couldn't get all my colon out because I had been open for 7 hours and they just wanted to get the dying portion out. I now have a temp loop ileo and will have it taken down in June to activate my J-pouch.

I had a hard time eating at first too. I had an Ensure 3 or 4 times a day to help out and started eating more after 2 weeks of being home. I didn't get my old appetite back for about 5 weeks though. It gets better, but it helps if think of things in weeks rather than in days. I had an open would too, nothing like yours or Blueheron, mine was only an inch area, but it all fills in eventually. :)
The shock slowly fades too. I cried every day for 2 months. Its ok, emotions are very high after traumatic events and surgeries. You've lost a part of you and its ok to grieve that loss. Coming to a place like this was very helpful for me, as well as letting myself have a pity party every now and then. Just don't forget about the good things in life and that you are in fact still alive and everything gets better in time.
I never bothered to get a book, cause i have this forum! Everyone here was so great in those first few months of problems and uncertainty. Check out old posts, and keep up with new ones and you'll probably get all the info you need. Good luck to you and your new plumbing!

betsaronie,
Thank you for your encouraging post. I am feeling better. Yesterday I took a 45 minute walk in the sunshine! It was hard but it felt so good.
When I was in the hospital before with toxic colitis, the doctors easily identified the problem and stopped me from developing a perforated bowel with cyclosporine. I am trying to figure out why they didn't cientify it and address it this time. Normally it shows up immediately on an MRI. Did you have one before your surgery?
SZm

Subzeromambo- sorry I didn't answer the rest of your questions... somehow I missed checking back into this post. I am now 5.5 months post-op... here is a little timeline of my wound woes to show you healing times:

11/8/2010 initial surgery. Everything went perfectly during surgery. Released on the 5th day.
11/22/2010, Wound opened through muscle layer, went back to surgery and had incision fixed and closed again. Surgeon believed at the time that the incision opening was due to the affects of Prednisone on healing, though now he feels it had more to do with the reaction to the sutures I mention later in this timeline.
12/5/2010 Wound started to open again through staples in small section- only superficial skin layers, minor infection, staples removed and tiny section packed with gauze, hospitalized at same time for 5 days for separate complications involving stomach pain. CT scan reveals large fluid pocket in abdomen. It looks like an abscess, but draining for 4 days reveals no infection. Never discover what caused the fluid, but pain resolves once the fluid is gone.
12/20/2010 Wound appears to be closing well. Still packing tiny section with gauze.
12/27/2010 Wound starts to tunnel- still packing with gauze while in wait and see mode with surgeon. He mentions that I may have to go back to surgery if things don't improve. (Wound tunneling is basically when the skin looks like it is closing, but a tunnel like space starts to form and extend underneath).
1/9/2011 Wound tunneling worsens, and I get a large painful bump at lower end of incision where it looks like it is closed very well.
1/13/2011 Back to surgery. Surgeon opens up entire incision and discovers abscess in wound and poor healing in some areas of the muscle wall due to rare reaction with dissolvable sutures he used in my initial surgeries (he and his colleagues had never seen this with this type of benign suture in all their years of doing surgeries). This was all also causing the tunneling. Area completely cleaned out, offending sutures removed, new ones out of a different material substituted in areas that still needed reinforcement, massive wound (aka shark bite) left to heal open with the help of a wound vac.
2/28/2011 Wound vac removed and silver alginate dressing used on tiny area that still needed to heal.
3/15/2011 Wound finally closed. Last visit with surgeon.
3/15 to present- have been feeling better and better every day! Scar also continues to fill in a bit, so split top not looking quite as bad as before. It will always be there to some extent though. Still, amazingly impressed with how things look now compared to how they did when things were first left open. I wouldn't have thought it was possible.

So, the whole process took about 4 months... twice as long as expected. It was so hard when I was in the middle of it and just wanted to be healed, but when I look back at it now, all these bad things seem to have happened in the blink of an eye. The whole time I was on the wound vac, which ended up being very painful for me for some reason, my surgeon always reminded me that I could go back to packing the wound with gauze at any time if the machine got too unbearable. He felt that packing the wound was a fine choice too, it would just take longer. So I bet you will do fine with that option as well, and it sounds like you are using great dressings. Like I said, I was always super paranoid about getting stool in my incision, but my surgeon reminded me that if I did, it was really no huge deal. He said to just wash it out, and reminded me that some of his patients that had problems with their anal wounds healing after various colorectal surgeries were even more likely to get mucous or stool in their wounds and all would turn out just fine.

Hang in there! It is so difficult I know, and made even worse by the costs without insurance. I can't even imagine. My bills have been a big burden even with good coverage. And you were denied over $16 extra dollars! It makes me mad that health care coverage is so messed up in our country, but at I am very glad to hear that you were able to get some assistance. And you are right about being grateful to be alive. I think about that a lot now and it puts all the other worries in life into perspective. Keep heading out into nature! It helps so much. Even during that four months of healing when I felt lucky if I could walk 1/4 mile, I was so rejuvenated every time I went outside. Now I am back to hiking 6+ miles and even went on an overnight backpack trip with a light load a couple of weeks ago. You will heal up and be able to do all your favorite things again.

I am jealous that you get to be so close to the amazing great blue herons. It sounds like you live in a very beautiful place!