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VeganOstomy
(@veganostomy)
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@jeff Thanks for the update! The hardest part is past you and I think things will only get better/easier for you with time. 

Looks like you've got the summer to look forward to as you recover 😎

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Madrad
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@jeff  Eric is spot on!  Pancaking can occur while being reclined.  Plugs the vent quickly.  Tried different bags, all failed.  Learn to "Belch" the pouch.  I can release the gas from dinner while watching TV in my recliner.  I suggest a rag or old T shirt under, in case you drip.  I never had a drip.


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Madrad
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@jeff  After my proctectomy last Aug, I couldn't pee.  Mayo catharized me 4x's a day.  They say it's very common, post op.  MD put me on Flomax & it started working in 3 days.  Foley can irritate you & problematic after a short time. 

After I got home 20 mths ago, I could walk 2 blks w/a walker.  14 mths later, I did 7 flat mls, no walker.  Rested every 1-2 mls.  My MD always says "Small Steps" will get you there. KEEP HIKING, it's good for your sanity too.


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Jeff
 Jeff
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@madrad I peed for the first time on my own today! YIPPEE!  Got the catheter removed this morning and a couple hours later life became just a little easier.

I'm with you all the way when it comes to walking. 5 days after surgery I got on the treadmill and slowly walked for 1 minute.  Today I did four! Small steps but they are wonderful. :)


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Madrad
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Like Eric said: Summer is coming & the beauty of nature & the skies await you.  Everyday is more progress.  I'm a naturalist/guide for a large hiking club.  After 3+ yrs of disease & surgery, I'm ready to lead again.  Easy hikes now, bigger later on.   Good luck

1617113371-IMG_1521.jpg

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sjlovestosing
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@jeff

When I had my colostomy surgery, I mentioned to my ostomy nurse about Vegan Ostomy. She also had not heard of of, but she did check it out and was extremely impressed. I mention this website to ostomates and non-ostomates alike in hopes that they will also check it out.

Stella


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tim
 tim
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@jeff I hope the walking is still going well.

Small steps, but they all build up. In about 5 months after surgery I was able to walk an hour home after work with no problem. Far cry from barely being able to walk down the hospital corridor and back in the week after surgery.

Hope you're doing well and adjusting.


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Jeff
 Jeff
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Update 4/12/21

Since my last post from March 28th I have had some ups and downs - mostly downs. I was readmitted to hospital on March 31. Two days prior I had a temperature of 100.7°.  Not too bad but I was told if it gets to 100.4 I should call my surgeon so that is what I did.  They drew some blood on March 30. They got the results on March 31 and weren't quite happy - I guess my white blood cell count was off.  So they had me go to the Emergency Department where I was then taken for a CT Scan. What was interesting to me was my temperature never got higher than 100.7.  (side note - I wouldn't have called my surgeon but my daughter has been VERY involved in this whole ride since July and she pushed me to make the call.  She is pretty awesome.)

The scan showed two pockets of fluid.  One was in my abdominal cavity and the other in my pelvic cavity. I went through a procedure with Interventional Radiology where they use a scan to direct them to the location of the fluid. From there they draw as much fluid out as possible before putting in a JP drain.  From the abdominal cavity they drew 60 mL and from the pelvic, 220 mL of fluid. The JP drains went in. One drain when into my abdominal are with the collection bulb on my front side.  The other was inserted through the muscle of my left buttock. This was a very painful process and remained as such the entire time the drain was in. The abdominal drain was removed upon discharge the pelvic drain came home with me.  The pelvic drain made sitting impossible and the only thing I could do was lay in bed for the first seven days in hospital. 

The fluid was sent to the lab and the Infectious Disease department was brought in because they weren't sure what was causing the problems.  I was stared on an IV of antibiotics and pain medications plus an assortment of other oral medications. Three days later cultures from fluids showed a serious bacterial infection.  

The pressure created by the fluid pockets pinched the exit point of my bladder so I had a Foley catheter inserted where it remained for five days. The fluids also resulted in three more CT scans, two x-rays and two ultrasounds to rule out other problems to my bladder, pancreas, kidneys, liver, gallbladder and anything else in the area. I had a major build up of gas which was very uncomfortable and painful. Output from my stoma was negligible for a couple of days but is now all liquid.

I ended up staying for 10 days while problems were sorted out, pain finally became manageable without needing an IV, I could finally drink liquids and not require round the clock care.

This was a really tough stay and was 5 days longer than the one following surgery.  I have been home for two days and require home nursing care to empty the fluid collected from the pelvic drain.  (I live alone plus I can't reach the drain to do the required twice a day flushing). Sitting for more than 30 minutes can't be done but at least I can walk for about 5 minutes at a time.  Other than that I need to laydown and watch Netflix or do something else (I like logic puzzles and they help take my mind off the pain). I am able to shower but I need to cover the drain site. Press n Seal is perfect for this.

It has been a lot to go through but I am still ok with my decision to have surgery.  My physical and mental health took a hard hit but they are both being handled. Let's just hope this is the end of hospital stays for a very long time. :) If it's not that will be ok too because I know I can handle it.

 


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SqueakyandLiza
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@jeff

Jeff,

I’m sorry to hear about this recent ordeal you have gone through. I’m so glad your daughter is looking out for you. I’ve spent too much time ignoring warning signs and possible problems, and it has never really worked out that well for me, so good for you for getting it checked out!!

I too enjoy logic problems!!  But I have to be in the right mood. I also enjoy sudoku and other word/number games/puzzles. Great for passing time. It feels too indulgent to just watch tv, so I’m usually doing something like that at the same time. 😀

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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LLNorth
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Oh, my, what a time you have had - it must feel better to be back home. Wishing you a fast recovery. Hope you are finding things you like on Netflix - I usually read or play on the internet while I watch tv, which means I miss out on about half of each!

Take care, Jeff. 

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


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Madrad
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@jeff Deja vu!  Woke up from 4+hr ileostomy at Mayo.  Ran a high temp & was shaking.  CT showed pockets of infection in low abd.  Surgeon went back in, cleaned it out & put in 2 drainage tubes. Over the 2 wks, I got sick 2 times, again.  Ended up w/5 drains. After 4 wks, down to 2.  I was sent to a rehab center for 4 mths.  Twice they sent me back to Mayo for the same thing.  My rectal stump wouldn't heal & went home w/a drain out my butt.  Miserable!!  One yr later total Proctectomy.   Hang in there, your body is strong.


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sjlovestosing
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@jeff

What an experience - one your probably would not want to repeat! Praying that your healing process goes quickly. 

 

God bless,

Stella


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Madrad
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@sjlovestosing  Thank you Stella.  Seems we all share a Nasty similar experience.  Eric says it takes up to 2 yrs to heal.  I now hike 7 flat mls, 3x's a wk.

Tip for Osteomates w/proctectomy: Bubble plastic in my fanny pack, as a seat cushion.


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VeganOstomy
(@veganostomy)
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@jeff Thanks for the update. I'm sorry that things haven't been as great as they should have been, but I do hope that things only get better from here on out 👍

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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