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Posted 4/3/2015 10:39 PM (GMT 0)
Hi there! I am just wondering if there are any other young people with stomas on here....?


I'm 22 and had emergency surgery to untwist my bowel last October and got fitted with a temporary ileostomy. Still waiting for it to be reversed.


What are you stories? turn
Posted 4/4/2015 1:45 AM (GMT 0)
Hey! I'm 19 and had a stoma. I have a jpouch now. My reversal surgery was about 6 weeks ago and I had my temporary ileostomy for about 2 months. Have you set a date for reversal yet?
Posted 4/4/2015 8:58 AM (GMT 0)
Hello!
I'm 25 and have an ileostomy. I got it last December after being sick for a year with Ulcerative Colitis. My surgery ended up happening very quickly, I was going in for a sigmoidoscopy & to speak with a surgeon for the first time; before they even did the scope I was told that I was being admitted, and my colon had to come out ASAP.
My ileostomy is permanent, I'm not having it reversed.
Posted 4/4/2015 9:54 AM (GMT 0)
Hey Amanda, what's a jpouch? Are you recovering well from your surgery?
I haven't had a date yet but it should be sometime in the summer.

Hi superblanks, sorry to hear your surgery was so sudden. How are you recovering?

BW
Posted 4/4/2015 10:14 AM (GMT 0)
A jpouch is internal. I think of it like an internal bag sort of. It is a pouch made to hold stool that is made up of part of my small intestine. They removed my whole colon, so the jpouch is part of my small intestine that is now basically functioning as my large intestine. Recovery has been slow but is going pretty well. Everything had to relearn what to do basically and so it has been difficult at times but I'm getting there! I've had some pain with cramping and spams that I think is mostly still gas pains but I emailed my surgeon about it and he said it is still normal and should subside soon. Overall I'm doing very well though. I needed my surgeries due to colitis and at this point I am off all medicines including steroids, so if all I still have is some cramping pain then I see it as a win! Have they told you what they plan to do with reconnection yet? Are they doing something other than a jpouch?
Posted 4/4/2015 10:31 AM (GMT 0)
Ah right, how does it empty then? I'm glad to hear that your recovery is going well and like you say if all you're having is cramping (which may be down to wind or something) then that is a bonus!

Well my situation is a little different to most peoples on here I think. I have mental health issues and last summer I self harmed by swallowing some objects, a few months later after loads of pain and getting dismissed by a hospital loads of times I went to a different hospital and needed emergency surgery as my small bowel had twisted and been brought into the large bowel and had perforated. I think it is just going to be a normal reconnection, the surgeon says that it should be a simple procedure and there should be no complications. So fingers crossed! I have to be free of self harm for 6 months before he will operate though so I have 5 months to go!
Posted 4/4/2015 1:28 PM (GMT 0)
Oh wow! I'm sorry you had to go through that. I can't imagine being dismissed by doctors to the point where the surgery is emergent! I hope you are doing much better, those 5 months will be here before you know it! It empties just by going to the bathroom normally. I am basically back to as "normal" as possible since I now go to the bathroom as I always used to! So did you only have a section of colon removed and they are going to just reconnect the parts of colon you still have? All of mine is gone which is why they needed to make the jpouch.
Posted 4/4/2015 2:00 PM (GMT 0)
I'm recovering quite well, thanks. I felt like it was taking me a long time to recover, but physically I'm nearly back to normal now - I've gone on holidays even & can go out & do most normal things that people my age do! I still get a bit of pain sometimes, mainly after eating a "normal" sized meal, but I saw my nurse last week & she said that it's still quite normal and it should settle.

I'm sorry to hear about your situation, and that you had to go through all of that. I hope that you are managing with your stoma ok, I know it can be hard to accept it, I'm having some issues with that.
5 months will come around in no time! And it's good to know that your surgeon thinks the reconnection should be a simple procedure, hopefully that will give you some reassurance when the time comes!
Posted 4/5/2015 6:40 AM (GMT 0)
Hi everyone I'm Julia! I also had an ileostomy for about 5 months and just had it reversed in January. I got very sick over the summer and all the doctors I went to told me I had a virus. Finally I found a doctor who was able to tell me I had ulcerative colitis and my colon was very very damaged. My body did not respond to steroids that usually help reverse the uc so I met my surgeon in August and after being admitted for a few weeks he told me he wanted to take my whole colon out within a few days and put an ileostomy in. It was quite a shock and I definitely struggled with the idea for quite a while I hope that you are adjusting much better than I had and know that it gets easier! Reconnection is also very exciting and worth all the struggle in the beginning.

Post Edited (juliamb94) : 4/5/2015 12:50:56 AM (GMT-6)

Posted 4/5/2015 6:45 AM (GMT 0)
Also forgot to mention my reconnection in January was by J-pouch, and they let my old ileostomy site close up so its just a scar now and I am back to mostly normal bowel functioning. I'm still testing the waters with foods and what I can and can't handle.
Posted 4/5/2015 1:40 PM (GMT 0)
Hi Julia! Your story seems pretty similar to mine. Except I did respond to steroids but it was the only thing that worked. I was steroid dependent which is why I needed my surgery. I had my reconnection in February so I am a little behind you in recovery for that. Hope all is going well for you!
Posted 4/6/2015 1:12 AM (GMT 0)
I think I may have been steriod dependent too-every time they tried to take me off them, I would get extremely sick again so they had no other choice but surgery! I think I may have had my ileostomy a bit longer but I had so many complications they reversed it early. Did you lose a lot of weight when you got sick? I lost about 30 pounds but haven't been able to gain any of it back no matter how much I eat. I was curious if you had any luck or tips for that and hope you are recovering well also :) I know it's one day at a time but it slowly gets easier.
Posted 4/6/2015 2:18 PM (GMT 0)
I lost a little bit while I was sick. Then I got on steroids and gained a lot! I was in remission for my surgeries so after the surgeries were done I lost about 35 pounds which a lot of it was just bloating and prednisone weight that I lost when I stopped taking it. I haven't gained any back since then either so unfortunately I don't really have any tips for that. I'm sorry!
Posted 4/6/2015 4:52 PM (GMT 0)
It's okay! Just nice to know there's others going through the same thing who knows what it feels like. If either of you ever have questions or need anything let me know!
Posted 4/15/2015 1:57 AM (GMT 0)
I'm 27 and just had the first of two surgeries... Pooping into a bag for the next 4 months. BLAH. I wrote a blog about my experience. Take a look.

Mattee66/Wordpress.com
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