Living with a Loop Ileostomy - Seeking Advice and Personal Experiences

Hi,

I am really conscious about my body image with the ileostomy. I have not had an intimate life since stoma formation.

I have active perianal disease, a large amount of liquid (0.5 - 1L of white yellowish see-through liquid) from the rectal stump (the part of the colon that has no food going through). So, I have to empty the stoma with a high stoma output and poop water 7-10 times a day on average.

Doctors advise for a permanent stoma and moving the stoma from my right-hand side to the left for better absorption. I want none of that.

I want to have my stoma reversed at all costs.

Has anyone else had the symptoms described above, has anyone been able to reverse successfully and manage things thereafter?

I understand what's in my best interest medically, but I cannot neglect my psychological well-being at the cost of it.

I need some feedback from people that have dealt with similar situations.

I am 32, single, and I do not want to compromise on personal life and relationships because of how I look.

I had a long response typed up, then I had to look something up and had to start over. 🤦‍♂️ Anyway, here's a shorter version... Have you looked into having a Ken butt and getting a Kock pouch?

Hi Alex

Never heard/read about it. I understand this is an alternative to a traditional external pouch. I do have high output 2-3L/24h. Not sure what the max capacity a K-pouch can hold or if this is something doctors here in the EU can do.

It can be a last resort option if reversal fails. Definitely less apparent and easier to camouflage.

Thank you,

H

You're welcome. There's probably a reason your doctor is advising a permanent ostomy. 🤷‍♂️ I'm just guessing your doctor believes that a reversal will either 1) not be possible or last because of your condition or the parts of your body that have been affected by your sickness, OR 2) if reversed, your sickness comes back and/or the issues you'll have (running to a bathroom a million times a day, wearing a diaper, accidents, etc.) will be worse than having to empty an ostomy bag. 🤷‍♂️ For me, I'd much rather have an ostomy than be sick, crap my pants, etc., just so I don't have a bag. Anyway, good luck on getting yourself back to a better normal that you want.

You really need to research to discover what might be possible for you and your unique situation. And like you mentioned, is it available in the EU?

If you got your wish and got a reversal, how's that going to work with perianal Crohn's disease? Medication can help, but there's no cure yet. Medications lose effectiveness over time.

AlexT is correct. At a minimum, get rid of the rectal stump via Ken Butt surgery. Try for a k-pouch.

You want reversal at all costs. No one's experience here will change your mind.

So, get it reversed and see what happens. Maybe you can handle it with medication for a while.

My Ostomy Journey: LeeAnne | Hollister

Hi,

Did your perianal area heal? I have a loop illeostomy due to perianal disease. My rectal area healed quickly, but I’m not sure if I can get the ostomy reversed. My surgeon will discuss this with me soon.

Hi, sorry I just saw this. It did not. My large and small intestines appear to be in remission. I had a colonoscopy a few weeks ago. The rectum is still friable and stenosed. The plan is to put me on infliximab at 4-week intervals and use budesonide foam. Once improved, restoration will be considered.