Struggling with Ileostomy Issues and Surgeon Advice

Went to see my surgeon due to having my ileostomy refashioned in August 2024.

Fast forward to now, my ileostomy has completely retracted, and I am struggling massively with leakages due to poor placement and blockages.

My surgeon has advised that I basically cope with it, and if it gets too much, then it will have to be relocated. I wake up every morning with a burst bag, I have blockages frequently, and due to my stoma being so retracted, the output bypasses the original exit and goes through the other part of my stoma. I have a loop, so I have two ends, which is then causing backup elsewhere. Am I being dramatic or….

Hi

No, I don't think you are being dramatic in the least. Have you considered getting a new surgeon? Second opinion?
I am sure another surgery is not a welcome option, but what you're having to deal with day in and day out would drive me crazy.

I wish I had more to contribute. Perhaps more seasoned folks on here might be able to help. I have a colostomy, but I know these retracted stomas happen to both.

Hope you can get some relief soon!

I haven't actually thought of a second opinion, but I just feel like I shouldn't have to manage waking up every day to a bag leak because of the poor placement and retraction.

"Bit annoyed"...???...I would be "very annoyed" if that were happening to me.

Time for some independent professional advice.

V.J.

I agree!

I was just thinking another surgeon might be of the opinion that he or she could pull the stoma out some so you wouldn't have to deal with a retracted stoma and all the hassle that is causing. Did your surgeon mention this to you?

However, if poor placement is also an issue, it might not matter.

Living with Your Ostomy | Hollister

I agree, you are not being too dramatic at all! I would say you are already at the point where it's too much to cope with. I hope you can find another surgeon who will help you. Good luck and keep us posted.

Terry

I'd recommend two things:  (1) see a new surgeon, and (2) see a malpractice attorney.  

G-Day Ashton,

Totally agree with all that has been said. Start looking today for a new surgeon that has your health in mind and not one that seems too occupied to look after yours.

I also remember you were having a problem with dehydration; I hope you're getting that under control as well.

Sending you good vibes,

IGGIE

Yep, you're not happy, go elsewhere; you are entitled to good care, not to be neglected.

If I were you, I'd be a bit more than annoyed; I'd be downright angry. You may have to have it relocated to fix the problem. I had my ostomy relocated and haven't had too many problems since then. I consider myself lucky. I had my first ostomy in a very bad location; it was at my waistline, and I couldn't wear a bag to save my life. I got it relocated, moved up, and now I can wear a bag and rarely have leaks. So you might go with a relocation to see if it improves things. It's better than living with blockages. Those are no fun at all.

I think everyone is saying the same thing. First step, see a new surgeon. Second step, as Henry put it, see an attorney. This goes beyond incompetence. It just sounds lazy.

Just cope with it?!?! I’d like to punch that doctor’s face and see him cope with it. Move on asap, even if it means shifting to a different medical center with more doctors/experience/resources. 

I would also be extremely annoyed, not to mention the frustration and feeling overwhelmed. I would try seeing an ostomy/wound care nurse to see if she can fit you with something better and might also be able to give you some recommendations for seeing another surgeon.

I sure hope you can get this under control. Good luck.

Connie

I think it's because I had a colostomy, 9 months later an ileostomy, then a year later my ileostomy was refashioned. But if they didn't keep putting them in poor placements, surely this wouldn't happen. The scars from my previous surgeries are too close to where the bag flange needs to stick, so it doesn't actually stick and causes the leak. Having a stoma already makes me really self-conscious, and the fact that it constantly leaks is making me feel worse...

You should not have to live like this. Surgery is always scary, but it sounds like relocation with a new stoma is going to improve your life a lot. Get a new surgeon who is a little more compassionate.

Sounds like you need a better surgeon. The stoma is supposed to stick out one and a quarter inches. I've had my ileostomy for 54 years. I had my stoma moved from left to right several times because of hernias. Blockages are usually caused by kinks in the intestines. Get a better surgeon and a lawyer. Good luck.

You need a new knife man/woman to sort it out. Are you waiting to have a reversal or internal pouch, as you have a loop stoma?

No, it's a permanent thing, so like I've said, why not just give me the end?

Ashtonillo, this is so sad, and the surgeon's response is sad. There are better surgeons worldwide. I don't know what medical insurance/coverage pays for in the UK and how transferable it is, but I would be looking! Plus, what company handles your appliances? Definitely get them involved.

I understand what you are going through . I had a big hernia and when the doctor finally decided to fix it she cut 6 inches more off my stoma and replaced it . But she cut it too short and now it is flush with my skin and I have leaks all the time . I went back to see if she could fix it and she said no . 

That doesn't sound good at all. I definitely would not wait. Keep us updated.

Sorry to hear that, but I'd get a second and third opinion to find a solution.

Hello Ash,

Under the British NHS, you have the option of a second opinion. My own suggestion is to 'do your research' and find a well-respected colorectal surgeon who has good feedback on his/her reviews and take on board the advice before deciding your next step. Sometimes it is good to be proactive. You can do the best for yourself in respect to your GP, who may just have a default referral. One does not know, for example, why your stoma has been placed in the particular position it has. Sometimes there can be very specific reasons, and it may take a very experienced surgeon who has tackled a re-sitement/repair of the type you need for your situation to be remedied.

Do not give up. Self-advocate. DO YOUR own RESEARCH. Your GP is honor-bound to refer for a second opinion.

Stay strong and take steps to alter your own circumstances.

Good luck.

Best wishes.

~ ~ ~ ~ ~ waves from the UK ~ ~ ~ ~ ~

Keep pushing, Ashton.

IGGIE

I agree.

Get another surgical opinion from a colorectal surgeon.

Feel so bad for you. As hard as it is, a second opinion is a good idea. And as hard as it may be, it can't hurt. I'm praying for you.

I too have the same problem of retracting; it's so frustrating waking up in a pile of your own poop! I'm sorry to hear your surgical team won't help you.

I would definitely be asking for a second opinion due to what it does to your quality of life. I call them poop days, but if it starts off in poop, I have a very bad day dealing with having a stoma.

Hope things get better for you!

I'm in the Northeast of the UK. I was having regular blockages and ended up going to a different A&E on Christmas Day a few years back. A follow-up phone call from a doctor who listened to me for 40 minutes explaining the problems led to her referring me to a surgeon who 'dealt with difficult cases.' An 8-hour surgery has given me my life back.

You need to find a doctor who will listen properly.

I'm so sorry it's such a rough journey, and I use Coloplast hard convex xx.