HealingWell
Search Close Search
☰

17 and waiting to see surgeon

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/27/2015 3:09 PM (GMT 0)
Hello, I'm new to this but I need some advice.
I'm 17 and I have ulcerative colitis, an anal fissure, anal prolapse and chronic constipation. As you can imagine its a lot to take in at this age. I have been sent for countless amounts of tests and they've finally decided to send me to a surgeon.
They're pushing towards a total colectomy. I'm quite scared as I am young.
I'm just looking for any advice/information about how they are and if its the right option?
Posted 2/27/2015 3:39 PM (GMT 0)
Hi, I completley understand what you're going through. I'm 19 and just had my second surgery a week ago. I was diagnosed with UC at 17 as well, senior year of high school ugh! I had a temporary ileostomy for 2 months and now have a jpouch. Is that what they want to do for you or just have a permanent ostomy?
Posted 2/27/2015 4:05 PM (GMT 0)
Hi, oh never!I'm in my last year of sixth form now and I'm struggling to go at the moment. I'm not sure which what kind of surgery im having yet, the surgeon is going to go through all the options in detail first before I decide. Which one did you find better for you? How are you now?
Posted 2/27/2015 4:17 PM (GMT 0)
Well I am not amazing right now only because my last surgery was a little over a week ago, so I am still recovering. I tried the jpouch because it makes you able to not have an ostomy bag permanently and I knew if the pouch failed that I could go back to an ostomy and at least I would've tried the jpouch. The bag takes some getting used to and it was frustrating to deal with at times but still in my opinion was better than the pain and such from UC. Once you have the bag though, you figure out what works best and become better everyday! Now I still have some pain and am going to the bathroom often but I hear it is normal for the first few months after getting the jpouch. So once I am recovered I am hopeful I will feel great and everything will be working well! The recovery process from these surgeries is pretty long and tiresome as they are so major. I had to do it though because I was prednisone dependent for 2 years! Now I am off all meds and just trying to recover from the second surgery so that I can get my life and education back on track!
Posted 2/27/2015 6:04 PM (GMT 0)
I wish you a speedy recovery! Yes that sounds sensible, I'm glad to hear you're benefitting. Im a bit hesitant towards the jpouch as i havent really heard much about it yet compared to an ostony bag. Good luck and get well soon!
Posted 2/27/2015 7:19 PM (GMT 0)
I'm 33 and a teacher and had sub total colectomy in November with view to j pouch next year.

I find the Ostomy bag gave me my life back after months of pain through the UC. It's the last resort but I had to do it to give my bowel a chance to recover.

Speak to your surgeon and listen to his advice. You might only need temp Illeostomy and view to J pouch. I manage well with the ostomy bag and I use the Ostomart hi line belt for discretion so students don't notice.

Stay strong and take all the advice from surgeon.
Posted 2/27/2015 11:16 PM (GMT 0)
Dont let anyone sway you one way or the other regarding ileostomy vs. j pouch. Study them both, then make up your own mind. I think the success rate they tout for the j pouch is way too high, but I have a failed pouch, so of course Im biased. One point to comment on from a previous poster mentioning that if the j pouch doesnt work, you can always go back to the ostomy. Well, its not that simple. J pouch removal surgery will be even more difficult, and possibly more damaging than your original surgery, especially if several years go by from the original surgery. Scar tissue forms over everything, and removal can be exceedingly difficult. I have a failed j pouch which is now disconnected, and an ileostomy. The pouch is so scarred into me, removal is next to impossible, without damaging other things in the process. Just something to be aware of.
✚ New Topic ✚ Reply