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, hair's 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!
Hope Filled
Mar 10, 2024 2:53 am
Beachboy
Mar 10, 2024 3:08 am
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 you're told... nothing gets accomplished. Doctors will send you home with an aspirin.
The squeaky wheel gets the grease.
Good luck.
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M
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CrappyColon
Mar 10, 2024 3:19 am
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 appointment with my surgeon, and the doctor 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.
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warrior
Mar 10, 2024 3:48 am
Very interesting thing going on here. Thank you for sharing.
First, welcome. You are in the right place.
Second, after three years of your surgery, there should be no pain.
You need a second opinion ASAP.
I had no pain from my stump, but I believe it and the rectum were killing me. Had surgery in Oct 2023 to remove it. Large intestine could not be saved in 2016. Removed it.
After six years of trying to control the bleeding and mucus, the stump had to come out.
I had no chance of reconnecting.
So if you have a good chance for reversal, why in the world would you do it if the stump is filling with scar tissue? Or possibly so inflamed it's Crohn's disease? Or cancer?
Fudge that. Get it checked.
Consider Barbie butt surgery and a permanent ileostomy for better health.
I'm right beside you, rowing in the same boat, kiddo.
Past Member
Mar 10, 2024 2:00 pm
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.
How to Get Back to Fitness After Ostomy Surgery with Ryan | Hollister
