Struggling with Take-down Surgery - Seeking Advice

I have Crohn's disease and I had my colon removed in 2015. I had an ileostomy bag from 2015-2020 and I got the take-down surgery because I thought it would make my life better, but it's made it so much worse. My diet is the most limited it's ever been, my body produces an unknown substance that burns whenever I go to the bathroom, and I essentially feel extremely uncomfortable. I've been essentially miserable for two years and am currently begging my surgeon to give me another ostomy bag. I'm wondering if anyone has had a similar experience and if you have any advice. <3

Hello smusa2015.

I don't have your problem, but I am looking forward to the replies as it is a great question and could be quite an informative thread

 

Best wishes

Bill

What's take down surgery? Pardon my ignorance as this is all new to me. I'm sorry that you're having troubles.

Thank you for your post. I am so sorry you are suffering and wish the best for you. (Virtual hug here)
Many folks on this site (including me) struggle with the choice to have an ileostomy reversal. Those who have experienced a successful reversal rarely come back to "report in". Although my ileostomy was an emergency due to a large cyst which was removed, I was supposed to be reversed a couple of months after my surgery. Due to delays, those months became years. At first, I was very discouraged and anxious to get reversed. Fast forward (not so fast) 2 years later, here I am still toting a bag. For me, your post has again helped me to believe that I have made the right decision regarding a reversal. Justbreathe

I also had a "temporary" ileostomy. Reversed. Not good. Now permanent. TGH advised me to tell others not to do a reversal. It usually does not work.

Hi Smusa, I'm sorry you're suffering. I went through exactly what you're talking about. Due to ulcerative colitis, I had a temporary ostomy while my J-pouch was being created (I'm assuming that's what you have now?). Three surgeries later, I started using my J-pouch for the next five miserable years. Sometimes it worked fine, but I mostly needed a lot of medication to stop the constant pouchitis and cuffitis. I began missing out on things in my life and being consumed with pain and not knowing what kind of a day it was going to be again. I spent a year writing down all the pros and cons of opting for a permanent ostomy, and it became so clear to me what I needed to do. I've had my permanent one with Barbie butt for almost eight years and have never regretted it. I got my life back. Please let me know if you have any questions. I'll help in any way I can.

I got Barbie-butted in March of this year, after pouchitis ever since 2016 - J-pouch was created in 2015, and my first stoma experience was 2013-2015. I feel like I can now take my life back, and not be ruled by my medications. I've healed nicely, I actually healed very quickly, luckily. I'm currently in the process of job hunting, so we'll see what comes of that!

Hi Smusa, I'm sorry to hear of the suffering you are going through. I have an ileostomy, and was given the option of having a reversal. From all the research I have done, which has been confirmed from reading comments from people on this site, it seems that people with colostomies tend to have pretty good odds of reversals being successful. People with ileostomies, not so much. I decided against it, and have been comfortable with my decision. I have a good quality of life, and don't want to take the chance of making things worse. The main reason I decided against reversal is due to the output issue. People with ileostomies have very caustic output that is hard on the peristomal skin. I just imagined that output coming out of my anus, and the kind of affect that would have on the skin around the anus. It seems obvious that irritation would be inevitable, and probably pretty bad and chronic. This has been borne out by reports from members on this site. At least with an ileo, you can protect the skin around your stoma with the flange fitting securely and no skin exposed. How would you protect the skin of your anus? As much as surgery is a pain, both literally and figuratively, you might just want to consider having your reversal reversed. I'm not sure why you are having to beg your surgeon for the surgeon. Perhaps get a second opinion? I wish you all the best of luck going forward. Please keep in touch as I'd be interested to know how things work out for you.

Terry

You're totally fine. It's just when they take down the ostomy to reconnect your intestines back to your rectum. So you poop from your behind again lmao

Hi delgrl525. You made a lot of good points. Unfortunately for me, I made the decision to get the reversal when I was still in college, so it wasn't the most informed decision. I only got the ostomy for the first time when I was still a teenager, so I was concerned more with superficial things. I was young and I probably should've waited, but the timing to have a surgery just happened to be right after college, so I made the arrangements and went for it. The surgery also wasn't explained to me in that way. It wasn't until recently that a doctor described it as "having an ostomy in a different direction" and I think if it had been explained to me in that way initially, I probably would never have gotten the surgery. Also regarding the begging, it's not so much that I'm literally begging, but it seems that they're hesitant, despite me complaining about this pain and discomfort for two years now. I hate having surgery, but I don't see another way out of this endless suffering other than getting an ostomy again. I've been talking about getting the reversal reversed for over a year now. Thank you for checking in!

I wish you all the best of luck! <3

Thank you for your concern. I didn't have an ostomy community when I first started going through all of this and I really wish I did. I probably wouldn't have gotten the surgery if I'd heard more from people who've actually had the experience and not just listened to doctors who've never had Crohn's or colitis. I'm glad that my post gave you even more perspective -- it's what I wish I'd had in my teens/early 20s when I was making the decision. I'm not an expert, but in my experience, it seems that you've made the best decision for yourself to keep the bag, especially if you've been able to regain control of your life.

Smusa, it might be that your surgeon is hesitant to reverse you to an ileo because you're young and they have their own biases about having a bag and body image, etc. even though they've never lived in our shoes, pain and all. After my first surgery, I told my surgeon that I could stop there and live with my ostomy. He basically said, "Bite your tongue! You're young and don't have to live with a bag!" And I was in my forties, not even as young as you. I think they project their own feelings and attitudes on us and don't hear that we're in crisis and pain. You may have to be more forthright and say, "I cannot live like this anymore."

I so agree with what you are saying. Surgeons are only human, and have their own biases. And Smusa, when talking to your surgeon, make sure you are not minimizing what you are going through. Only you know just how miserable things are for you, and you need to express that honestly. Maybe something like "I can't live this way anymore"?

Terry

Yes.. like Terry stated, let the doctors know that you are always in terrible pain and cannot live a normal life. If they do not listen, find a more compassionate, knowledgeable, experienced doctor that can make a successful change. Take care, dear..