Severe Rectal Stump Pain

I’ve had my ileostomy for 3 years today! I haven’t been one of the lucky ones whose quality of life has improved. I’ve suffered from severe rectal pain since weeks after my surgery. I’ve been told it’s scar tissue, a few other diagnoses to see if one stuck. To me this stinks, my health has deteriorated, malnutrition, malabsorption, hairs falling out, teeth are bad… I’ve tried everything and nothing helps. If I was a surgical candidate I would have a reversal or have them remove my rectum. Period! I’m so tired of chronic pain every day! 

If possible, and maybe you've done it, get a second or third medical opinion.  What's the main reason you're not a candidate for Barbie butt surgery?  

I've discovered over the years... YOU must be your own advocate.  You must be a "pain in the ass."  If you are passive, and do as your told.... nothing gets accomplished.  Doctors will send you home with an aspirin.

Squeaky wheel gets the Grease.

Good luck.

Are you near any teaching/research/university hospitals? May I ask the reason for your ileostomy? Did they say why they left the rectum intact? Do not settle when it comes to your health. In another group I’m part of I recommended my surgeon to someone who wanted to get another opinion from Cleveland Clinic. She was able to get the appt. with my surgeon and the Dr told her that it was a complex case and it was presented before the medical board. She had to travel, but she got the help she needed. Mayo Clinic would be closer to you. Don’t settle for the medical team who is allowing your health to deteriorate. 

very interesting thing goin on here.thank you for sharing.

first..welcome. you are in the right place. 

2nd..after three years of yur surgery , there should be no pain.

you need a second opinion asap.

i had no pain from my stump but i believe it and rectum were killing me . had surgery oct 2023. to remove it.  large intestine could not be saved in 2016. removed it. 

after six yrs of trying to control the bleeding and mucus , the stump had to come out.

i had no chance of reconnecting ..

so if u have a good chance for reversal why in the world would u do it if stump is filling with scar tissue? or possibly so inflamed its  chrons  disease ? or cancer? 

fudge that. get it checked. 

consider barbie butt surgery. and a perm. ilio. for better  health..

im right beside u rowing in same boat kiddo..

 

 

Hi there,

What is the reason for your Ileostomy? And a better question is are you  passing mucus and sloth? If not the pain could be from mucus buildup in your rectum .

I iterate - further medical oppinion would be helpful!

BW

Jayne