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Colectomy 27 Dec - advice/caution

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Posted 12/29/2018 9:29 PM (GMT 0)
Great progress! Walk as much as you can for as long as you physically can. Happy for you!
Posted 12/30/2018 2:29 PM (GMT 0)
Home now. Well, I think all the residual effects of the surgery drugs have completely worn off and now I'm feeling everything. Wow. Those first two days were very deceiving. A little blood along the stitches, is that something of concern? Also a little around the stoma when I changed the bag. Also having a hard time standing straight. Lots of pulling in my abdominal area. Anything I should be watching for?
Again, thank you all.
Posted 12/30/2018 5:37 PM (GMT 0)
I had little blood but I had a 42 stapled vertical incision plus stoma. Just dab it with gauze or tape gauze to it. Discharge/blood from stoma/wound is common. Where are your incisions?? Yea don't stress stitch/stapled area out. Let that heal properly. Don't need to stand straight up. You like watching football?? Watch football today if yes. Relax and take it SLOW. You just had a body organ removed
Posted 12/30/2018 5:38 PM (GMT 0)
Have u set up visiting nurse??
Posted 12/30/2018 6:42 PM (GMT 0)
Were you given any pain meds?
Hope you do have a visiting nurse coming....and that your recovery will go smoothly.

q
Posted 12/31/2018 2:41 PM (GMT 0)
Jay how are you doing???
Posted 12/31/2018 3:14 PM (GMT 0)
I seem to be on a downslide. Yesterday was really bad. Pains all over my body including lower back and thoracic area. I also had/have really bad nausea, and my stoma output was very low but got better. Didn't go to ED, but I might today. Still lots of pain and 'cause of the nausea, I have no appetite or desire to drink. Not good. Pain meds ain't helping much either.
Well, I knew recovery was going to be tough, but it's a lot harder going thru it then preparing for it.
So, how long should I expect to feel like absolute crap? Should I not go riding roller coasters at Hershey Park tomorrow? ( just kidding).
Again, thank you all.
Posted 12/31/2018 3:28 PM (GMT 0)
Keep in touch with your stoma-nurse. Yeah once you come off of the initial IV pain meds, it hits you like a freight train. Hopefully the pain prescriptions they give you are fine, if not then give them a call. The first week or so can be rough. It gets much easier.

Recovery is a process. No instant-gratification.
Posted 12/31/2018 5:48 PM (GMT 0)
Jay after 3rd surgery i had blockage from too many painkillers.I had to go back into hospital for 36 hours bc of this so they could open up my intestine.Wasn't fun but not too difficult.Besides that i had no issues after surgery 1 or 2.Yea without an IV u need fluids and some solid food.Don't play with fire,if u keep feeling like crap then get back to hospital.We are not in the greatest shape after surgery to be taking 100 % care of ourselves.Very careful with pain meds,i didn't even take as many per day as prescribed but they blocked me up-Lucky me huh.Call surgeons office and tell them whats going on.Let us know what your doing now[going to hospital?]??? and how your feeling now???
Posted 12/31/2018 6:58 PM (GMT 0)
Champ is right. Don’t mess around if your not getting output and feeling nauseous. Call the surgeon and let him know. I got sick after 3rd surgery when I got home. I was super dehydrated and had to get readmitted. I spent another week in the hospital getting everything to wake back up and start absorbing fluids. So glad I went back in.
Posted 12/31/2018 8:09 PM (GMT 0)
Hi I couldn't stand or walk straight the first few days. I purchased an ostomy belt to help support the stoma as I felt it was weird as the bag got heavier. Now the stitches have disolved and everything is fine but I still like the belt for comfort.

You need to be patient with yourself.

Keep hydrating. How is your output now? Have you vomited?

What is ED?
Posted 12/31/2018 9:32 PM (GMT 0)
Andina think he meant E.R
Posted 1/1/2019 9:44 PM (GMT 0)
Jay let us know how your doing when u can
Posted 1/2/2019 2:24 PM (GMT 0)
Still not doing so great. Output seems ok now, but I still have little appetite and I've got weird pains where I wouldn't have thought such as sharp pains in my lower left side and intense pain in my left shoulder and neck area when I walk (*** with that?). Oh, and my stoma is so close to my incision that I have to cut part of the adhesive to avoid overlap. Problem is, it's not creating a good seale and waste is getting out.
All a major pain in the was, but is so mild compared to what some of you have gone thru. You are very strong people, that's for sure.
No home care yet. That's the problem with having a procedure this time of year. Hopefully I'll be able to get someone over today.
Given all the other crap I've gone thru, I know time, tolerance, and smarts will get me on path. The journey just sucks.
If I may end with a funny, I think I've disproven an old saying "nothing is impossible". Well, the last few days, I've done absolutely nothing.
Thanks for your support.
Posted 1/2/2019 3:20 PM (GMT 0)
Not having home care is not acceptable, my hospital wouldn’t release me until they could confirm that there would be a home nurse visiting me within 24 hours.

You need to call and make sure that you get your point across on how necessary it is for a visiting nurse. Call the hospital, surgeons office and your insurance company.

Some of the pains that you’re mentioning could be from the anesthesia (I had shoulder and arm pains for a month).

What supplies do you have? We might be able to give you some pointers.

If your output slows then you’ll probably need to cut back on the pain meds. You do not want a blockage (vomiting). Stay hydrated and walk a lot.
Posted 1/2/2019 4:18 PM (GMT 0)
Jay didn't social worker/nurse come to see you in hospital about Visiting nurse??? All 3 times I was in before I left I got a visit setting up visiting nurse. That's a PRIORITY for u today. Get that scheduled. Do u have visiting nurse service Phone #? I had same issue with seal/bag. It overlapped on my incision. My nurse showed me few tips to get it to adhere good and not have it on incision. Takes time. Not a perfect science. There will be accidents. Just take deep breathe and relax as often as possible. It's a big adjustment for us all. You'll be fine. Let us know about nurse. Find out how many visits in year you get??? We're giving u homework for today(didn't expect that did ya?). Yea nurse thing is important. Get that all figured out today. Get back here and let us know how you did
Posted 1/3/2019 2:45 AM (GMT 0)
Jay how was today??? any better?
Posted 1/3/2019 4:26 PM (GMT 0)
I’m sorry to hear you’re having a rough time. I was in bad shape the first week I was home after the first surgery. I was weak, had sharp pelvic pains and the incision pain was killing me. I took the max daily amount of Tylenol and ibuprofen but no narcotics. It started getting better after about a week.
I will echo the suggestions about the visiting nurse. They will be your best resource..especially caring for your stoma. Hopefully, you can get a handle on that and stop leakage. Good luck!
Posted 1/4/2019 2:39 AM (GMT 0)
How are you doing? Any update? Hopefully you can get a nurse to go to your home and check on you and help you with the pouch. It gets a lot easier, the beginning is tough for sure. I had weird pains all over, my surgeon said something about blood pooling, it would cause a sharp pain in my crotch area. Awful. It did go away relatively quickly at least. It takes time. Let people take care of you. Don't lift anything heavy, even over a few pounds, don't push yourself. Just relax and heal.
Posted 1/4/2019 3:49 AM (GMT 0)
Were you only in the hospital for 3 days for your jpouch creation surgery? I was in the hospital for 22 days for that surgery, I had ileus, a kink in my ostomy and super high output.

It’s a tough surgery. Let us know how you’re doing.
Posted 1/4/2019 8:56 PM (GMT 0)
Hi Jay,

My stoma was also next to my belly button incision so I had to cut that side of the wafer so it didn't sit on it. I actually wore my wafer turned partially sideways so I didn't have to cut so much off. And I had leaks until I started using the convex wafers. I had a nurse for the first week after surgery but mine weren't much help. I watched a lot of you tube videos to help myself with the bag and I learned a lot. Take it easy as the first few weeks are rough. Good luck and keep us updated.😉
Posted 1/5/2019 1:32 AM (GMT 0)
Jay how u doing???
Posted 1/6/2019 5:05 PM (GMT 0)
My apologies for not responding earlier, but I just got busy with family and trying to deal with the daily ups and downs.
Nurse came last Wed and I've seen her twice since. She's been great. It seems that a lot of people have overlap of the adhesive with their incision. With leakage, doesn't that cause a concern with infection? Some areas of my incision have split a bit and is draining a little. Nurse told me to keep an eye on it. Don't want to have to deal with wound care.
Meds don't seem to do much. Anyone have issues with Gavapentin messing with their head?
Not sleeping much. I have to deal with the bag a number of times thru the night.
Still have pains and and very weak, which I'm told are very common. So, I guess I'm following the well travelled path.
Lastly, anyone use the removable bag system? Is there really an advantage or convenience to it?
Well, even though I still feel like crap and am worse off now than prior to surgery, I know I'm moving in an upward direction where before it was only down hill.
Hope all are well.
Posted 1/6/2019 10:13 PM (GMT 0)
Don't get too caught up with worrying, things will heal and get easier. Getting up a few times a night is probably a lot, but at this point, you're so new to things, it may be normal. I'd ask the nurse. Has she had you try any products other than the ones you left the hospital with? I left in a sensura system or something, but my nurse came with a bunch of other samples. I also went on all the sites, coloplast, convatec, hollister, I actually have a big list i can paste below. You can go to these sites and request samples as you please. The nurse is great when you're healing, but once you adapt, you will want to try things yourself and not have them over your shoulder telling you what to do. My nurse helped me a ton, but my stoma was short and I needed convex. I learnt that from the nurse at convatec when I called for supplies. I personally preferred the 2 piece systems with the detachable bags myself. The benefit of that is, once you get the wafer on, and it's secure, you can swap the bag out. My wafer would last 7 days or so with my end ileo. With the loop, i was at a loss. I had no luck getting anything to work as intended. The 2 piece is good because there are different types of bags, bigger and smaller. You might benefit from a bigger bag when sleeping if you're getting up multiple times... It's all temporary, so keep your chin up!

Pouching
https://www.coloplast.us/about-us/coloplast_samples/Ostomy_Stoma_Pouching_Samples/
https://www.convatec.com/ostomy/
https://secure.hollister.com/en/samplecheckoutpage
http://nu-hope.com/Sample_request/pouches.html
http://www.bbraunusa.com/products.html?id=00020743040000000504
http://www.clinimed.co.uk/Order-Samples.aspx
http://www.marlenmfg.com/request-a-sample.php
https://cymedostomy.com/samples.html
http://www.securitusa.com/order-samples
http://nu-hope.com/Sample_request/pouches.html
http://www.peakmedical.co.uk/pages/view/complimentary-samples.html
http://www.pelicanhealthcare.co.uk/sample-form-pouches/
http://www.salts.co.uk/en-gb/order-samples.aspx
http://www.ostomyezclean.com/free-pouch-samples/
http://wellandmedical.com/distributor_location/the-americas/

Skin Protectants, Rings, Adhesive Remover, Odor Prevention & Elimination, Lubricant
http://www.eakin.eu/sample-request.aspx
http://www.ostomyessentials.ca/samples/
http://sns-medical.com/free-samples/
https://torbot.com - website under construction but products available on various online retailers
http://trioostomycare.com/product-range/request-a-sample/
http://www.nascent4u.com/freesamples/index.php
http://www.ostofresh.com/contact-us/
http://www.alpglobal.com/Free-Sample-Request.html

Vents
http://www.kemonline.com/content/Contact

Disposal
http://www.bagitaway.com/

UK
[email protected] www.dansac.co.uk Use our FREEPHONE 0800 581117 to call our dedicated Customer Services Team for free samples and product information.
http://www.opus-healthcare.co.uk/
https://www.oakmed.co.uk/sample.asp
Posted 1/6/2019 10:18 PM (GMT 0)
Oh, another thing, you shouldn't get any output on the incision. The wafer should be secure. How close is it? You might be able to use a sheet of some sort to cover the incision too, but air is good for healing so I think cutting the wafer down and letting the incision breath might be helpful. You really have to keep an eye and let your surgeon know if you're concerned. When do you follow up again?
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