Hi ostomates,

My appt in April was changed to a phone appt and they decided they couldn’t give me an opinion without seeing me. It looks like they will finally get me in to see 3 different doctors in mid-July. It will be a GI, a colorectal surgeon, and one who specializes in hernia repair.

Based on the phone consultation, I’m afraid they are going to advise removal of the rectal stump. I am quite nervous at the thought of having that surgery. 

Can anyone who has had this surgery tell me first-hand what to expect. The good, bad, and ugly. I think going in with as much knowledge as possible will make me less apprehensive about the appt. Thanks in advance!!

Liza

@squeakyandliza

When I had my operation two years ago, I had both my anus and rectum removed. I had a shot of morphine to my spine. so that for a few days, I felt no pain in that area. It took about a month for my wound to heal where I was sewn, and I had to sit on a waffle pillow for about the same amount of time. It will be uncomfortable for a bit, but that's about all. The hospital did have me using a foley catheter for a while, but as soon as you leave the hospital, I would strongly advise seeing a urologist to see if you can self-cath at home. After I did that, I was able to urinate on my own after a month of self-catheterizing.

I hope this helps. Definitely, get educated on the procedure. Each circumstance is different and each person reacts differently to the meds and anesthesia that are given. The more knowledge, the more power. 

 Good luck and God bless,

Stella

@sjlovestosing

Thanks Stella. It sounds a bit scary to me, but I definitely appreciate knowing what to expect. 

This may be an odd question, but where exactly do they sew you up?  And why do you need a catheter after leaving the hospital?  Are you unable to use the toilet?  Which leads to other feminine issue questions. Ugh. 

Did it help with any problems you were having?  Also have you noticed any long term effects?  Anything that you can’t do, or things that are more uncomfortable now?

Thanks Stella, and anyone else who can share their experiences or just advice. 

Hi Liza, My surgery was like Stella’s, and I didn’t really have much discomfort once I got home (in the hospital I had a portable pain pack) - didn’t sit directly on that spot for quite some time, however. I sometimes sat on a c-shaped neck pillow that I had around the house, with the open end to the back. The nurse recommended short warm soaks (10 minutes)  in shallow water in the bathtub a couple of times a day, which felt good. LL

@squeakyandliza

They sewed up the hole where the anus was. I've heard this sort of thing being referred to as "Barbie butt".

I think I was unable to feel the urge to urinate because of the operation being extensive - having a colostomy, plus having those parts removed. That may not happen with you. Again, don't be afraid to ask questions of your surgeon before hand.

I forgot to mention in my last post that I was on the foley for three months, which my urologist told me should have never happened. The nurses should have had me self-cathing by the time I left the hospital. Also, my urologist told me that it is not uncommon to have those nerves stretched or accidentally cut with this type of extensive surgery, which explained why I was unable to feel the urge to go for almost two years - she said it would take about that length of time for it to heal completely. I just had to make sure that I would empty out on a regular basis. It took me almost two years, however, before I actually was able to feel the urge to go. Thankfully, I am back to my old self where that is concerned! 

Stella

@sjlovestosing and Liza, forgot to say - I didn’t have a catheter.

Stella and LL, thank you both so much for sharing your experiences with me!!

Posted by: @sjlovestosing

They sewed up the hole where the anus was. I've heard this sort of thing being referred to as "Barbie butt". 

Stella, I know how ridiculous this might sound, but when I kept seeing “Barbie butt” I was envisioning everything being closed up, like butt cheeks being sewn together. I have to admit it has been giving me great anxiety. 😂 Thanks for clarifying.

Hello Tony...

I would love to share my story. I'm sorry I didn't see your post earlier. I will write it all down, and post it in the next few weeks. I do have a lot to share, and I'm sure, others might find some comfort in knowing they are not alone...

Yours Truly...

VeganLady...

I'll chime in here to say that I too have had my rectum and anus removed and I couldn't be happier about it.  

A year and a half after the emergency removal of my colon I had parastomal hernia and an incision hernia.  Since they both needed to be repaired it was also a good time to evaluate whether to give me a J pouch or make my ilostomy permanent.  Turned out I had too much disease (Crohn's) in my rectum so we went with the removal.  My recovery was swift and  painless enough that less than two years later I don't remember many details.  I now don't have ANY portion of my GI with inflamation and that is really liberating after 35+ years with the disease!  I do occasionally have what I assume to be "flair ups" where I have low energy and pain in my joints but honestly it could be attributed with the weather as much as with Crohn's.  I've always been sensitive to the barometer taking a nose dive.

@braveness23

Thank you so much for sharing your experience. It is encouraging that it was so un-traumatic that you don’t remember the details. 

I’m glad that you are so happy with the outcome!!

@squeakyandliza I remember everything that happened to me. I am sorry but I lead a very busy life but when I get the opportunity, I will write my story, and share with you...so much to tell.

Vegan Lady...