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Hello all, time to catch everyone up with my daughter's progress. She just came home from Cleveland Clinic, k-pouch surgery. She is doing all intubations, wound care...herself. Can you all help with these questions?
An inch of incision has opened up and she is now dry packing this. Has anyone else experienced this? Any suggestions?
Can distilled water be used in place of saline for intubation and wound care?
Have any of you attempted to get social security benefits due to inability to work or work regularly?
Help with gas pain?
I am sure more questions will pop up. As you all experienced, she is in much pain. Meds barely touch her discomfort.
Any advice would be much appreciated. And Cleveland Clinic was wonderful-but only kept her for 12 days-removed staples I feel too soon (hence incision opening). Concerned mom.
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Hi Art Mom,
Wow!What a big step.
I will try to answer as best I can. The incision opening, if not 'normal' is very common...it means that there was some sort of infection or collection of fluids under the scar and it is better for it to come out than to build up even more. It will drain. She needs to keep it clean, using either betadine solution and/or saline and clean gauze pads (they used tuile gras on me which is guaze dipped in vaselin so that it doesn't stick)...In the old days I used to boil water for 10 mins and let it cool and then use it...Also boiled the instruments that I used...now they have disposable everything so you can do either. You can get a bag or saline from the local hospital and it will do for a week.
For the gas pain I just walked as often as possible, didn't use straws, chewing gum or pop and ate mostly protiens like roasted chicken and fish.
It takes time but the pain slowly gets easier to handle...they took me off the morphine drip at day 5 and put me on tylenol 2...I had a script for 2weeks worth and then nothing but tylenol.
Just keep her hydrated and active as possible without overdoing it. Not too much sitting up strait...more reclining or standing but not leaning forward and no bending or stretching.
That's it for now...hope that this helps
Sharon
Debbie,
Thank you so much.
Be careful, there are 2 types of Betadine, Red and Yellow (or at least here the bottles are those colours)...find out which one is to be used on open wounds...they are not interchangeable. My homecare nurse would squirt a it directly into the open wound and then squirt a tube of saline in after it to clean out the wound, then pack it with the gauze...if it is under an inch then you don't need to pack it, just cover it up with clean gauze and tape it down...if it is over an inch then they may want you to pack it and cover after...I alway approached the edges to eachother during healing to prevent it for ending up looking like the San Andea Fault!
I used Steri-strips for that or something called 'wellington ties' I think...they look like strips of tape that you attache to the skin with shoe laces attached that you tie together on either side. It is great for bigger wounds that need approaching.
Just in case.
By the way, these things can go either way...they get closer and heal or can open up a bit more so be ready for both cases...either way they do take a while to heal.
Sharon
Hi Art Mom, I too went to the Cleveland Clinic (k-pouch surgery with Dr. Deetz), in May of this year, had surgery on Friday the 4th and came home Saturday the 12th (removing staples the day before I left) that was only 9 days and I didn't have any incisions that opened up but we all heal differently but where my old stoma was that they closed it took the longest to close and heal up. As far as the water goes, they told me if it was safe enough to drink that you could use it to intubate with. I too have lots of gas cramps, it was worse right at first, has gotten a little better but having No bag hanging off my tummy makes the gas cramps a little more tolerable! I hope my answers have help some, I wish her all the best! grandma64
My incision opened up after I came home from the cleveland clinic. It was hard keeping it clean due to the leaking around the tube of the constant drainage bag. My insurance covered a visiting nurse to come in twice a day to pack the wound and change all the dressing around the tube. You might want to see if a visiting nurse is covered/available. I felt so much better just knowing the care didn't fall only on my shoulders. It took a few weeks, but the incision finally closed. The first few weeks are the hardest, but tell her to hang in there, it gets wayyyyyy better. Also once you don't need to intubate every 2-3 hours, you start to feel like you can live a normal life. Good luck! Did she have her rectum removed and closed off? This wound took much longer to heal. I would say it took mine almost three months, but then it was great.
Thank you all! Rosie, yes, she had her rectum removed. She has said this is very uncomfortable, leaking, pain....So good to hear this all gets better. How did you all do with pain meds? Luckily, we have been able to get all meds in liquid form. What do you all do about keeping electrolytes in balance? I read in another discussion that some of you purchase salt tablets from REI (have magnesium, potassium...also). Any suggestion for adhesive remover other that the type bought from ostemy suppliers? Thank you for all your help.
Art Mom,
The best (and cheapest) adhesive remover in the world? Baby oil. Put a few drops on a cotton or gauze pad and rub gently...comes off in 5secs...as for electrolytes? I didn't need much because a) I am a very good and varied drinker: herb teas, diluted juices, homemade lemonaide, seltzer water with lemon, shweps(sp) tonic water (great for those leg cramps)...plus I had a veggie juicer and loved carrot/apple or carrot anything (add herbs for extra vitamins)...and B) I took a good multi vit with extra minerals on top of everything else.
Keep her moderately active but do not allow her to overdo it. When active you feel the pain a bit less...I do not remember much about the bottom end closure pain (I had already had over 10surgeries down there so I think that I was both numb and relieved that it was over).
Keep up the smiles and laughter and it will be fine.
Sharon
I had a incision that opened at the top and bottom and a old stoma site that had to close on its own.
My friend is a visiting nurse who helped me along after I returned from CC with all the packing stuff. She stressed to me getting in the shower and letting the water run on the wound. It won't hurt it. As far as adhesives, there are different tapes available, if that's what you need remover for. I can only use 3M paper tape because it is least caustic to my skin. The wound does heal, unfortunately, it might take longer than you want.
I strongly advise against any carbonated drinks. If your daughter has cramping, V8 is a great source or potassium, OJ will work to.
One thing to remember is when you begin to feel better, you have to also remember there was major replumbing done and you have to slowly increase activity. But, I walked, several times a day short distances just to move. It does help.
Hope she feels the benefits soon.

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