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Proctocolectomy - Please Help

Posted by sliced+diced, on Thu Apr 18, 2019 11:29 pm

Hi, I am new to this site, and joined because I have a permanent end ileostomy due to a small bowel transplant in 2009. Since then I have had 8 additional related surgeries and am now being scheduled for a complete proctocolectomy in May. I am trying to find the right post op pillow, with a budget of about $65.00 USD. I have read a lot about how not to use a donut pillow, and I can't afford a ROHO so I was wondering if anyone had any other suggestions. Also, other any words of advice/wisdom would be greatly appreciated. Thanks!

Reply by Puppyluv56, on Fri Apr 19, 2019 2:53 pm

Slided+Diced ( haha don’t we all feel that) 

I have no experience in this but certainly wish you the best with your upcoming surgery! 

Please write back to let us know what you find out works best and how your surgery goes! 

Speedy Recovery,


Reply by Bigboredave, on Fri Apr 19, 2019 9:29 pm

Hello Diced,

When I learned that I would have to have this same procedure due to becoming periodically sick from the stub and the little remaining bowel that was attached, I was filled with great trepidation and dread.  However, after the surgery, I was pleasantly surprised on how little discomfort I was experiencing.  I basically recovered in my recliner during the day and was quite comfortable.  I had purchased a innertube that inflated to the approximate size (wheelbarrow tire) I thought would be comfortable but didn't need it at all.  Of course this was me and maybe I was just fortunate, so I wish you all the best and good luck.  DAVE


Reply by EvaJean, on Sun Apr 21, 2019 9:17 pm

I was surprised by how little pain I was in after my proctectomy. I hope the same is true for you! I tried to stay in a reclined position as much as possible especially for the first week or two. I did get a cushion from Target, it was in the automotive section. It’s a gel car seat cushion and it was under $20. I used it for my wooden kitchen chairs, and once I started going out and about, I took it with me anywhere I knew would have uncomfortable seating. 

Reply by mamatembo, on Tue Apr 23, 2019 8:29 am

I would suggest calling your hospital's Department of Colorectal surgery and ask to speak with your surgeon's stoma nurse. Find out from her if the hospital furnishes an air pillow after surgery. I know my hospital did because they wanted to get me up, sitting and walking ASAP. Mine was about 20" x 20" and had 13 "dimples in it. If they do not furnish an air pillow, ask if the nurse could suggest the proper one for you for the type of surgery you will be having. Hopefully the hospital will furnish one for you on day 1 after surgery. I used mine for about a month post-op whenever I would be sitting for any length of time and until the pain went away. I hope you will be as fortunate as I was in having one given to me.

Reply by Sasquatch, on Tue Apr 23, 2019 12:29 pm

I was given a waffle cushion after surgery, it was all I needed, and only for a few weeks.  My surgeon reccomended not using a donut cushion, to keep gentle support on the wound.  Don't worry the pain is not as bad as you might think.  I was back to a physically demanding job in just over a month, with nothing to worry about but building my strength back.

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