Hi everyone, my name Natalie and i am from the UK, i hope its ok to come on here?
I am now 17 and i got the ileostomy when i was 16. Its not been a full year yet but i am maybe looking to have the J-pouch op. But i still have no idea if i want it!!! I am soo mucked up in my head. I was getting on fine with having a stoma for a while but these past few weeks i feel really confused and really close to tears all the time. I don’t no if its just being a teenager or if its to do with the stoma. I am seeing the surgeon on 2nd of may to talk about the pouch. I think the only reason i wouldn’t get it done is having to go back to the toilet loads of times a day. I was told to start with i could go up to 10 maybe more maybe less..I am worried about accidents and stuff. Are you able to control it? Can you hold it in? That’s all i worry about. I just have this metal picture in my head, with me going to college a few weeks or so after the final op and needed to 'go' and not being able to hold it! And its a 30 min bus ride with no where to 'go'. I only had UC for a few months before it got really bad but I had 2 accidents at home! Luckily I only ruined my PJs.
Sorry i have gone on a bit..i just need to speak to others as i have never met anyone that i know of with a pouch and the first person that i kno of with a ileostomy was the ambulance man who came for me last week at college.

Natalie, it is perfectly fine for you to read and post here. This is a wonderful site with many helpful members.

I had my surgeries when I was 21, not too far off from your age. Personally, and this is just an opinion, I think having these surgeries at a younger age works in your favor. Younger individuals seem more resilient and seem to heal quicker. I had my two surgeries, took a semester (spring) off from university to heal, and then resumed classes the following semester (fall). Surgical experiences and results will vary, but I never had any accidents immediately after takedown (I've had very few in the 13 years I've had my J-Pouch, and they have been my fault for pushing my limits), was able to "hold it" (I made myself, or else the frequency would have been similar to my UC episodes) and am satisfied with my pouch given the circumstances.

I, based on personal experience, would give yourself some time to heal after your surgeries. It is quite an adjustment to one's body and life and after going through such an ordeal, it only seems logical to allow yourself time to heal. I'm sure that is not the easiest thing to hear (temporarily postponing university or life's goals), but in hindsight, I'm glad I gave myself time to heal.

Good luck.

Hi Natalie!

I, too, had my surgeries at a fairly young age, 21. I didn't feel comfortable with having an ostomy so I had no doubts about trying the jpouch. I am now 2 months post takedown and I have been working full time as a PhD student since four weeks after surgery with no problems at all! So, I think you have very good chances to enjoy your college years if you choose to proceed with the surgeries.

I never even needed much time to heal. But, of course, everyone responds different to surgery. I do have some minor issues - a little bit of pouchitis and irritation of the rectal cuff. But I am optimistic and trust that I will find the right medication that will keep my pouch healthy. In spite of the problems I have only had a few accidents (mostly when I try to hold it for to long or try too hard to fart) and I can postpone my BMs until I have the time to go.

That is my experience so far with the jpouch. But it's still very new and perhaps my answer will be different a year from now. That's the time it takes to adjust.

Good luck with your deciscion!

Sofia

Hi Natalie,

I'd just like to offer a very warm welcome to a fellow Brit.

You couldn't have found a better place for information, support and friendship and there are quite a few in your age group here too. Whatever questions come to mind just post them on here and you will get a wealth of responses.

Good luck for your appointment on the 2nd of May. Let us know how you got on.

Take care.

Shell

I am a bit older than you, but was still in college when UC put that on hold. Basically, I lost 2+ years of my life to that garbage. I had the pouch done as a three-step. I just had the take down about two months ago. I am nearly as active as I was before the UC now, although I have cut out some of the more abusive stuff. I can eat about 75% of the foods I would like, and haven’t had any problems during the day. I found that even though I didn’t have any problems with the end-ileo, it did affect my psychological well being. I cannot even imagine dealing with that stuff at your age, as I know that I was not emotionally developed enough to handle it when I was that age.

The way I see it is this. Youth is on your side and you’ll never know if you don’t try. Although this is an oversimplification you can always go back if you really need too. Several of our members have, and are doing well with that choice. I would say go for it.

Natalie, Welcome to the site. You will find many answers you are looking for here. Everyone here at this site is great support. As for making your decision I think you should give it a try. You lose nothing by giving it a chance and gaining a lot. I am sure an ileostomy for a female at your age is tough. An anti-depressant may help get you through this rough time. I took anti-depressants to help me through my surgeries and it helped. Everyone has different results after their surgeries. I can go frequently, but if I take meds it drastically reduces the amount. I also can hold it for hours if I have to. So do not be afraid to ask questions as a lot of people here have been through everything you could possibly dream up!

Natalie

Hi I'm from the UK too. I had my surgeries when I was 21/22 so a bit older than you but (and I say this despite having had some problems) I have never regretted having them. You're probably at the point now where you're fed up with it all and probably having good health back is a relief.

If it makes you feel any better, I have never had any control issues (and I suspect probably the younger you are the less likely you are to get them).

I go to the toilet a lot more frequently than a 'normal' person but then so what? At least I'm not in constant pain and I'm not feeling weak because I'm digesting food properly. It's just a minor inconvenience you can learn to live with.

Try not to get too worked up about the choice - go and speak to your surgeon and make the decision then. It may be that you might be better just deferring any further surgery until you settle down a bit and let yourself recover mentally from what you've been through so far - why don't you ask the surgeon about whether that's a realistic option when you see him.