For people with ostomies

Firstly, congrats on the surgery!

Secondly, yes, I had major issues adjusting. I had definite Crohn's, so the j-pouch was ruled out from the start - however, my surgeon left the rectum in, thus leaving the possibility of an ileorectal anastomosis. (ileum-rectum connection). But like you, I also had to treat it as though the ileostomy could have been permanent.

I didn't cope with it well, at least for the first year and a half (had the stoma for 2.5 years in total). However, a couple of things made it considerably harder for me: first, I'm autistic, so I'm already highly resistant to change; second, I was traumatised from years of illness & pain, emotionally abusive parents (who I was living with, making it a million times more difficult), and difficult withdrawals from oxycodone and prednisone (particularly the oxy! Wasn't even on it for very long, but I developed excruciatingly sensitive skin as a result).

I complained an awful lot about the stoma on the UC and Ostomy boards in 2013/14. I was envious that I couldn't have a j-pouch and couldn't accept my stoma. I also had regular panic attacks about supplies - mostly running out of them, particularly after the zombie apocalypse.

The good news is that after about two years - probably a bit less in fact - I had become fully acclimatised to my stoma, physically and mentally. For the first year, I was dealing with leaks, bag filling with gas during the night, trying out different bags, etc. Eventually all those teething problems were sorted out - leaks became a thing of the past, I had found a setup that I was happy to stick with permanently, and I could sleep throughout the night every night without needing to get up to empty the bag. Mentally as well, I had adapted: the stoma had changed, without me even noticing, from something I regarded with disgust to a neutral body part.

You might wonder why I went on to have a reversal then; I wonder that too to be quite honest. The answer is pretty simple though; I had a reversal because I could - after a couple of years had passed, my surgeon was happy to do it (she wouldn't consider a reversal during the first year). Whilst I would be lying if I said I missed the stoma, I most certainly do miss not being on any Crohn's meds, being able to eat a wider variety of foods, having less pain, etc.

Anyway, I do think that if somebody like me could get used to living with a stoma, then literally anyone can. People's experiences vary wildly - I've known some people on here accept their stoma straight away. According to my stoma nurse, it takes about a year on average to get used to having a stoma. Apparently those who have elective surgery adapt faster than those who don't. I don't think that was true of me though; I kept on regretting my decision to have surgery, which was stupid - it was only elective because I was on high dose steroids. Would have been in your boat if the steroids didn't keep me afloat - they didn't heal my colon by an iota, though, that was the funny thing.

Apologies for rambling, but hope you can find something useful/comforting to take away from this post. I do recommend counselling if you can get it.

I would like to firstly say that I am excited to see you healthy again. Beyond that, having a stoma seems to be different for different people. I do not have a perm ostomy, but I think I could have if it was my only option. I have seen people here, who didn't need to opt for perm ostomies, opt for them, and move on with life like nothing changed. I've also seen people struggle with the change. The thing you need to remember is that you don't need to decide right now, you can have the first step and move forward when you're ready. I can understand the fear of "what's next", especially in the case where you're not sure about the diagnosis. At the same time, if you read my story in my signature you will see that I felt so well with my ostomy that I wondered if moving forward with the additional surgeries was the right move. In reality, after the loop, I had no more indecisiveness, I just knew I needed a solution because my loop was hell, but the end ileo itself was pretty darn easy.

I think you just need to take it one step at a time. If you're sure this is where you're headed, and you're sure you need an immediate solution, you will wake up after your first step able to eat, drink, go home, live life, gain strength... that will be a huge change for you. i wish this wasn't the necessary outcome, but for me, it was, and I am so thankful to be done with it all. I can only hope you will have the same situation and never look back. xo.

What I want more than anything, is to wake up and just feel that festering piece of body tissue gone... just the absence of it, I can only imagine the relief. I am not looking forward to the post-op pain (I'm a wuss when it comes to pain), and I'm not sure I'll be able to psychologically handle seeing my stoma and ostomy at first.

Really, this is not elective for me. It's life and death. I have been in utter torture for the past 2 months. I feel like if I don't do this, the pain will eventually erase my personality and I'll have no life purpose anymore. I can't allow that to happen.

I'm a 26 year old male who played baseball/softball his entire life and worked out on a regular basis. At first it's tough I can't lie but the quality of life was 10x better than with UC. I couldn't leave my room next to the bathroom let alone my house for months on end. I was able to go to punk shows, Pittsburgh Steelers playoff game, minor league baseball games and a bunch of other awesome stuff. Even bowling was out of the question with UC
You get to appreciate the little things in life again. I was even able to get a girlfriend after I vowed to not talk to any until after my takedown (couldn't help myself she's amazing)...yes it's weird but you get used to it shockingly quick and start to see how much better you feel. I just finished my j pouch surgery on Monday. Everything seems to be great but if for whatever reason I need to go back to a permanent end ileostomy I will deal with it and accept it. Best of luck! It all is what you make of it

My experience, a 3 step jouch surgery, a jpouch removal and return to permanent ileostomy. I'm curious if you are doing a two step or three step, as if you do the two step you end up with a loop ileostomy which is harder to deal with than simply an end ileostomy, and an unfair comparison.

The human being can adapt to almost any situation, you will too. I personally found the Ileo to be a small part of my life, rather than my life such as when UC is in a major flare. After about 6 months I adapted and there is no feeling there for me, I feel as if the appliance is a natural part of my body

I personally believe you can subliminally influence your mind to think a certain way, thus I listen to positive, reinforcing forms of audio, such as motivational speakers and this has really helped me through.

Post Edited (Virdent) : 5/17/2018 9:43:23 PM (GMT-6)