Home five days after a total colectomy

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Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted 4/22/2011 7:48 PM (GMT -6)   
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
Diagnosed 1987 with lower left colitis. Hospitalized often. Mega toxic pan colitis Dec. 1999. Total colectomy April 2011.

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 4/22/2011 10:13 PM (GMT -6)   
If you haven't been told already it is of the utmost importance to keep hydrated and drink a lot. It is better to sip and not consume a lot all at once. Always have a bottle or glass of water nearby.

Protein is most important to help you heal. If you can't eat much which also happened to hubby, I made him slimfast shakes that give a total of 15 grams of protein. Have one or two of them each day to get some protein in you if solid food isn't doing it for you at the moment. I use one of those tupperward plastic containers that are marked with the ounces. Put in the 8 oz of milk and one scoop of the mix - shake it up and you can drink from that container too. Fill with water to shake & rinse when done...........a very easy thing for hubby to do when I am not around and he is too lazy to fix something to eat or not that hungry but at least gets some nutrition in him and it takes all of a minute.


When you are up to it - there are a lot of different threads here. Read through some of them to get some good info to help you out. That's what I did to try to get up to speed a bit. However any questions you have will be answered by the regulars who are so helpful.

Only 4 months for my husband and we are still learning but doing very well overall too. The newbies have to be prepared that there is a bit of a learning curve but in time once you find what works best then that is what you'll use and stay with. The trial and error with the UC for all those years and the trial and error with this is a piece of cake in comparison we think!

Hang in there - day by day. Get stronger and focus on the positives and you will find it gets easier. Good luck and take care.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

pswift520
Regular Member


Date Joined Sep 2010
Total Posts : 91
   Posted Yesterday 10:28 AM (GMT -6)   
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.

Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted Yesterday 11:56 AM (GMT -6)   
Thank you both for your suggestions. It is odd but protein shakes is all I feel like ingesting. I try to eat small portions of chicken breast and rice but it looks so unpleasant I have to force myself to eat it.

run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted Yesterday 7:46 PM (GMT -6)   
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. :-)
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

Daffodil
Regular Member


Date Joined Nov 2010
Total Posts : 90
   Posted 4/25/2011 11:06 AM (GMT -6)   
Good Day to All!!
 
I went in on March 23rd for a regular dr. appt. with my Great GI dr. and expected him to "fix" it, like he always has...I was dehydrated, constipated badly, and very ill. Anyway, long story short, I two days later had a colectomy, ileostomy, hysterectomy, and a diagnosis of ovarian cancer. Wow, when I woke up from surgery on March 25th, I didn't expect that one. I stayed with my parents for a month, but am now home!! And might I add, so very happy to be there. (I am a 51 year old confident, self assured, wonderful lady who has zero confidence in this bag and not much more in herself now)
 
Anyway, I am now a month out from surgery. I have had one round of chemo. I will take 6 total. The first week was not bad at all. Just extreme fatigue and emotions all out of kilter. HOWEVER...the bag has given me fits. Sometimes it stays on good for 4 days, and then sometimes only 12 hours. I don't know what I am doing any different those times. My stoma has gone from 1.75 inches to a 1 inch now. I measure each time with the templates that come in the box of bags. I left the hospital with Hollister one piece. I am now trying the Sensura by Convatech.
 
I won't try to ask too much information, but I am curious about a few things.
 
  1. What do "newbies" have to offer me as the best piece of advice.
 
  2. Did you have to try different bagging systems before you found the right one?
 
  3. Do you stand up or lay out a bit when putting on a new bag? (my stoma opening is kinda low
      and it seems to leak out around the bottom and lower sides.)
  
  4. Also, I do have some skin irritation. I use stoma powder, tried the skin gel protectant wipes
      but they irritated my skin. I also am not using the paste, or "caulk" as it doesn't come off and
      the adhesive remover was most painful.
 
I will close with the fact that I LOVE the whole concept of this new appendage. I was miserable with UC and had lots of accidents, couldn't enjoy social things, wasn't comfortable going shopping.
I am thrilled to be on no medicines. (had tried them all, even Remicade) I just want the bag to work.
 
Thanks in advance for any advice, tips, or laughs you want to send my way!! Hope everyone has a great day!
 
Fondly,
Mollie

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 4/25/2011 11:54 AM (GMT -6)   
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....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Daffodil
Regular Member


Date Joined Nov 2010
Total Posts : 90
   Posted 4/25/2011 12:16 PM (GMT -6)   
Thank You!! Thank You!! Thank You!!
 
I love the advice!!

stripey
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Date Joined Feb 2011
Total Posts : 1059
   Posted 4/25/2011 3:54 PM (GMT -6)   
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.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted 4/26/2011 11:18 PM (GMT -6)   
Thank you for al of the caring and good advice. I apologize for not replying sooner. My wound opened up and the doctors have decided to just let it heal as is. It looks horrbile but they don't think I am strong enough for any thing else.
The moldable wafer has provided a nice tight seal for me. My abdomen is very uneven because of the reopened wound. I have been trying different brands and one by hollister is the most comfortable with me but it isn't working well with the oen wound dressings so I use one by convatec.
I am trying to sneak in as many calories as possible with the diabetic boost. Each day is better than the one before so there is a little improvement to cheer about!
Diagnosed 1987 with lower left colitis. Hospitalized often. Mega toxic pan colitis Dec. 1999. Total colectomy April 2011.

Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 4/27/2011 7:44 AM (GMT -6)   
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.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

andorable
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Date Joined Jun 2005
Total Posts : 981
   Posted 4/27/2011 8:23 AM (GMT -6)   
Just wanted to welcome you, and glad you found this site as it is full of great advice and support. I am 2 years into my ileostomy and with the help of the wonderful people here I am now doing it all with ease. Changing my appliance only takes me about ten minutes and haven't had any leaks since the early days when my stoma was still changing size once the swelling went down.
So far all the comments made are all great advice and theres not really anything I can add to that , but as mentioned take advantage of free samples and you will find what suits you best, the mouldable wafers are a fantastic idea as they do fit snuggly around your stoma. I was very surprised to hear they let you out of hospital before you were eating even a light diet. They wouldn't let me out until I was able to do that and was shown a few times how to sucessfully apply my appliance and they weren't prepared to let me go until I had done it in front of them a couple of times on my own and was able to shower myself and so on.
Any questions at all this is the place to come, my surgery was also done due to emergency as I also had non stop accidents and was extremely sick and would not have made it without the surgery and feel fantastic now but still on meds as I developed RA as well as having the crohns/colitis. Take care and keep us posted on your progress.
Perhaps try eating some yogurts, and drink some sustagen to keep your strength up until you are able to get onto a diet of some kind
All the best
Doreen

Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 277
   Posted 4/27/2011 1:23 PM (GMT -6)   
Try the Evansville Ostomy News.  Great insights.

Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted 4/27/2011 9:07 PM (GMT -6)   
Blue heron,
Thank you very much for sharing your story. It really helps to make me feel a little more normal and not as scared. Due to extended unemployment, we lost our COBRA coverage and do not qualify for medicare or the Oregon Health Plan by $16 of too much unemployment. The care I receive is definitely not what I would have received with insurance. Wound vac was denied due to the expense. Even so I am very grateful to be have received any help and to still be alive.
It sounds like my wound looks the same as yours. That makes me very hopeful that everything will turn out fine. Your description of the split top loaf of bread is perfect! My stoma is too close to the open wound to easily seal. I have had a couple incidents of cross contamination from both wound drainage and the bag leaking under the seal and into the wound but cleaned and changed everything immediately.
I use stoma paste to fill in an area where there is a big dip next to the wound, followed by the Eakin Seal. I cut the bag stoma opening off center so that I have as little of the bag adjacent to the wound as possible. After I started doing that I stopped having any contamination problems and the wafer seal sticks really well.
I am very sorry that you had to go through so much pain and physical challenge. How far along are you in your recovery? Thank you again for making me feel better.
The Ostomy book has been helpful but it did not have as much scientific information as I would like.
SZm
PS I live above an island that blue herons live in. The last time I rowed by I counted 18 herons. We have a young male who likes to come and stand in our garden. Their wing span is a little scary when they fly about 2 feet away from me and my skul.
Diagnosed 1987 with lower left colitis. Hospitalized often. Mega toxic pan colitis Dec. 1999. Total colectomy April 2011.

Post Edited (Subzeromambo) : 4/27/2011 9:12:37 PM (GMT-6)


Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted 4/27/2011 9:16 PM (GMT -6)   
I am doing better on eating solid foods and getting my appetite back. Thank you for the warm welcome and good advice.
SZm

windy city
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Date Joined Dec 2010
Total Posts : 607
   Posted 4/27/2011 10:09 PM (GMT -6)   
Subzeromambo,

You will always feel tremendously better than the day before. I myself, like you, was SHOCKED! My total colectomy was elective, July 2010. Severe diverticulosis throughout and from mid2009 til surgery, 8 infections. Had ileorectal anastamosis, was OK. 5 days later, had my 1st bowel movement and the rest was a nightmare. The anastamosis came apart, and it lead to abdominal sepsis. I was moved to ICU and was told I had a blood clot. I was rushed into surgery and an ileostomy was performed. Due to the blood thinners, the wound opened. And more infections but 5 weeks and almost 40lbs lighter, I came home against the wound care nurse and social workers recommendations, they wanted to place me in a nursing home for a month because I live alone with 2 small children. I was in shock, depressed and wasn't prepared for this.

I'm upset with myself on prior ostomy knowledge. I had no idea prior to surgery what a stoma looked like, what the appliances where, not a thing. The appliance never stayed on more than 4 hours until over a week later I purchased a moldable wafer and that took care of that, 7-10 days wear. 5 months later, the presurgery weight I gained back, so the abdominal insicion creases were deeper and I had to stop using the paste and switch to Eakin seals,10 days wear. Also use the AL sure seals to keep it down as, near the wound, it lifts. Now use a belt too.

The wound was packed with a calcium/alginate liner that when the drainage absorbs, turns into a gel like material. No drainage issues and it took 7 weeks to close...not too long. Just with the ileostomy always leaking and it going in the wound, I was scared but thankfully nothing happened as I was cleaning my wound right away. No wound vac, I'm a single mother and active and didn't want the cumbersomeness of it, despite the fact I had it in the hospital. I healed like a 'top slice of bread' too. My 7year old daughter calls it a 'butt' when she catches a glimps of me. What can I do but chuckle at that..it does!

As for strength, I couldn't stand more than 2 minutes. Couldn't walk out of the house until day 3. Layed down until day 5 for the ostomy/wound care. People brought me food, I didn't even want to look at it. But I forced myself to have chicken soup, maybe 5 spoonfulls, every couple hours. Drank water like a FISH ALL day!!! After I ate, had half or hopefully all of the Ensure bottle, with each meal. At day 3, got an aid to give me a shower & walked half a block. Later that day, little longer. Next day more. Everyday I kept thinking of just 2 days back as I couldn't 'do that or this'. On day 8, got my kids back, drove, took them to school, able to baby step walk them, went grocery shopping but asked for assistance. But I did it. I was determined to get my life back, I missed my kids as they were with my exmotherinlaw for all that time. But after 3 weeks, had a mental setback. Had to mourn what had happened. 2 months prior to surgery, my father died and I was his caregiver, it was a slow death, so I was full of emotions. I have my days, but I'm much better without my colon. Now I have to mentally prepare for my takedown.

I wish you nothing but the best and you will get there. Happy for this site, wish I would have found it sooner. :-)

Christine

Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted 4/28/2011 11:37 AM (GMT -6)   
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

windy city
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Date Joined Dec 2010
Total Posts : 607
   Posted 4/28/2011 1:03 PM (GMT -6)   
SZM,

I am so happy to hear that you are getting stronger as each day passes. You seem alot like me, knowledge means power and strength. I could have kicked myself that my "always come prepared" attitude failed me when I needed it the most. How gullible of me not to gain the knowledge of what a possible ostomy would entail. I was in unknown territory.

Yes, everyones pace is different, and your improvement will be everso encouraging and you will be so happy when your able to accomplish everyday things again. Each obsticle you will face will give you such joy when completed.

Thanks for being worried for me, nice of you. If I take time to breath, I ponder too much. But I've changed, I appreciate everything I have more so. I'm saddened that I'm only 38, always had health ailments, divorce, and losing both parents very painfully. Lately I've pushed all those "selfish friends' out of my life. I've had an awakening and want positive people to be by my side. People that are compassionate, patient, thoughtful, etc. People like myself with my core values and passions. I would rather walk through life alone than have any more ill-tempered individuals calling me friend. Before, I felt pitty on myself, and my children an obsticle, now-it's my kids have given me more than I could've ever given them. It's their childlike innocence that has given me faith and strength. Funny about life, but if we want improvements of any sort...they do come! Email me if you have any questions/concerns or just to chat! (((((((Christine))))))))

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 4/29/2011 5:57 PM (GMT -6)   
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!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11

Post Edited (betsaronie) : 4/29/2011 6:01:28 PM (GMT-6)


windy city
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Date Joined Dec 2010
Total Posts : 607
   Posted 5/1/2011 3:17 PM (GMT -6)   
Dear Subzeromambo,

Thinking of you and wishing you further improvements. I understand that your having issues with insurance and I'm so sorry but hope to help as you don't need to deal with financial burdens as you are trying to recooperate. I'd like to send you a care package of my leftover wound care supplies. I have 3 boxes of 5 sheets in a box of the calcium/alginate wound care. You cut in little strips (length of wound and about 1cm in width, cut going around sheet like your peeling an apple in a circular motion)until you've filled your wound. You have to see how much you need, maybe not the entire sheet at first and every few days you'll be using less. You can change every day or every other day. If you wait more than 2 days, it does smell. You clean it inside and around outside during dressing changes with sal***er & an all purpose gauze. You then put a ABD pad on top and tape along all edges. This stuff heals very quickly and absorbs drainage and doesn't stick. about a month later or when wound is more than half closed, you can put an all purpose 4 x 4 gauze on top (open gauze sheet length wise and double up to overlap) instead of ABD and tape along top...helps to breath. Then when the wound is almost closed, you don't need the calcuim/alginate. Just once a day a antibiotic ointment (bacitracin) inside and around outside and gauze sheet (one sheet now) to cover. Was going to give my supplies to a nursing home, but feel that you would benefit more so. Email me if interested.

Subzeromambo
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Date Joined Sep 2009
Total Posts : 1143
   Posted 5/2/2011 9:23 AM (GMT -6)   
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
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Date Joined Sep 2009
Total Posts : 1143
   Posted 5/2/2011 9:36 AM (GMT -6)   
Windy city,
Thank you very much for your kind and generous thoughts. My wound care supplies are taken care of by a compassionate care non-profit. Some of the supplies such as silver nitrite bandages kill bacteria while absorbing any extra liquid. It makes a very compact dressing and looks very high tech.
I have a freelance assignment to do today. I don't know how painkillers and editing are going to work together. Wish me luck!
SZm

Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 5/2/2011 12:04 PM (GMT -6)   
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!
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/201
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