I remember months ago when things were great and i hardly noticed anything, but over the past month i'd rather not even leave the house. I constantly have to go when i'm out whether i've eaten or not. I'm absolutely sick of it. I'm sick of waking up 12 times a night to go or if i don't wake up having accidents nightly. I''m sick of not being able to laugh or stand for long because i have accidents so easily. I'm sick of not being able to do the things i used to because i get so frustrated having to run to the bathroom all the time now. I'd say i go about 6 times in school 8 times after and overnight another 6. At least with the bag if i needed to wait a little beforegoing to a bathroom to empty it i could. And i could stand up for long periods of time and i don't know.I just feel like i will never be a normal teenager. I feel like I'll never be able to casually drink with friends or be able to have sex when i'm older. I'll never be able to go hiking or rock climbing or skydiving like i planned to. I've become so depressed. I didn't leave the house this weekend.I don't want to depend on immodium to make me half normal. I just feel like crying right now.


Alicia

Hi Alicia,

I'm so sorry you're feeling so down! Have you been scoped for poucitis? If it's not that then maybe it's time to start taking stool thickeners (if you aren't already) such as imodium, lomotil or even try metamucil wafers?

I really wish I had a magic wand that could put everything right for you...

Hang in there, hoping this might just be a little blip that's easily put right.

Take care

Shell

Oh Alicia, As a mom I hate to hear a beautiful young girl be so down. There are things you can do to feel better, even if it means taking things to help it along. First, have you been checked for pouchitis or cuffitis? I remember seeing posts from you saying that things were great. This may just be a bump in the road. My daughter had some and now she is through all that and living a wonderful life. She was diagnosed with cuffitis and had to do some suppositories and cortifoam and take pentasa and when it all got under control she still takes the pentasa for maintainence. When she would have frequency, she would take codiene to get through long college classes and when she wanted to go to concerts and things like that so she didnt need the bathroom so often. I am not promoting codiene, if immodium works then that is a better option but in the beginning that is all that worked for her. Today, years later the immodium works for her. She did a cross country car trip from NY to California, she jumped out of an airplane, she goes camping, she did a semester of college in Europe and so many other things I cant list here, but you get the message. Your life is not over, you just need to find out what is wrong and what will work for you. So if you have to take stuff to be 'normal' so be it. Right now my daughter is a flight attendent, takes her pentasa and now she takes immodium to get through her long flights. It will get better, hang in there, just find out what the problem is and work with it. You dont seem like the kind of girl that will let something beat you down, I know you are like my daughter and you will SURVIVE. She was your age when it all started also and now she is about to be 24.

Have you seen your GI/Surgeon? Could be pouchitis like Shell says.

Alicia - are you on antidepressants? (I KNOW I sound like a pusher.....) That should help the depression and it might also help the frequency.

Don't think that taking imodium regularly means your pouch is a failure. You may have to take it to make things bearable for you. If you're not now taking it regularly but randomly, you might want to try the regular thing to see if that helps. If you feel imodium isn't working, talk to your talk about lomotil. It works differetly for some people. Also, try keeping a food diary for a while. Start cutting back one type of food at a time to see if maybe you're having a difficult time with it right now - like dairy or caffeine or sugar or wheat products. If you find an offending food, eliminate it for a while and then reintroduce it back into your diet. I know this isn't the answer you want. And it doesn't seem fair that you can't live your life how YOU want to live it right now. But this surgery can take up to a year or longer for things to settle in. So you might want to give it a bit longer.

BUT(!!!) if you really feel that your quality of life is not what you want and you want to return to an ostomy, then you do it. If you do decide to return to an ostomy - maybe you can try a temporary one and then try hooking things up at a later time. There are quite a few people here with permanent ostomies or K-pouch or BCIR who love having it compared to the problems they had with the j-pouch. I'm sure you can get lots of support from them - JillM, Shell, Les, Karyn, and of course Shaz.

If you're able to, give it a little more time. I'm so sorry you're going through this just when you were doing so well.

And go have that scope to see if it's something else. Oh yeah - and crying is a good thing once in a while.

kathy

I'm so sorry you are struggling. Try to find some solutions to the immediate issues so you can clear your head and make more permanent decisions when you aren't in the throes of feeling crummy and upset. If you haven't seen a counselor you might want to and as Kathy said antidepressants can be helpful.

Like Kathy said - I'm happy to talk if you decide to go for a perm ostomy. I've loved having mine - truly I have. I've hiked, kayaked, gone swimming, traveled and had a baby...all things I couldn't have done with my j-pouch. My ostomy has given me my life back and I just don't think about being sick any more.

If you haven't consulted another surgeon about your troubling situation and you've tried all the medical interventions without success (such as meds for pouchitis, etc.), I'd seriously consider making an appointment with the pros at Cleveland Clinic....Dr. Fazio, et al. It would be worth the trip for him (them) to have a look/see and advise you before you decide to do anything "drastic" such as go back to an ileostomy (permanent or temporary). I'm hoping it's an easy fix for you and you just have to find the one doctor who has the answer! Best wishes.

Hey Alicia

I’m really sorry to hear about your current situation, especially after how excited and happy you were when you’d finished up with all your various surgeries.

I know things must be tough going at the moment but please don’t be hasty and give up on the pouch before you’ve considered it thoroughly. Although a perm ostomy is a viable option, you are still so young, would you really want a perm ostomy forever without first looking at all the options available. It does seem peculiar that you started off so well and now have begun to have all these issues. 20 BM’s a day is excessive and Stells suggestion that it may be a case of pouchitis or cuffitis seems logical. Get in and see your GI/Surgeon ASAP and hopefully there is a simple explanation and a course of antibiotics will sort it all out and you’ll be back to your old self again.

I know its hard too see the light when your down but hopefully this is just a small blip and soon you will be doing all those adventurous activities like skydiving, rock climbing, hiking etc ……………………………We all love your big smiley face in your photo and don’t reckon a glum face would suit you half as much …………………………Here’s keeping my fingers crossed that this all gets sorted and that big smiley face is back again soon.

Hang in there and good luck

Clive

This has been on my mind for a while, and this seems like a good post to express it...

Believe me, I understand counseling someone to consider all options and think carefully about permanent or life changing decisions (I did so myself earlier in this thread). However, I think we as a community need to be careful about making people think there is something wrong about going to an ostomy or other alternative solution.

There are a lot of people in the world nad healthcare who put pressure on people to try anything and everything before giving up the pouch. Obviously, each indiviudal needs to try everything and anything they are WILLING to try but at a certain point, some people just decide enough is enough. And, whether that happens at the age of 17, 30 (as in my case) or 60 doesn't matter as long as it is what the individual wants.

Again, I'm not saying that these decisions should be made quickly or without serious thought and consideration of all the options and possible complications. But at the end of the day, each of us has a goal to be well enough to enjoy the quality of life we want, no matter how we get there. I fear that we could be making people feel like failures if they aren't willing to go to extremes to save the pouch.

I ask that everyone remember that what might seem unacceptable to one person may be the saving grace of another.

JillM-
Amen to that. I love my life. The ostomy has given it back to me. There are far worse things. None of us are quitters.
Paul

I know how you feel about not wanting Imodium to rule your life, when I first had my ostomy I wouldn't take it and that caused HUGE problems. I've had a Jpouch for 8 years now and after about 4 years I stopped taking immodium or anything. Sometimes your body has to get used to everything.
But I do understand about the accidents; I still have problems myself and I still have all those concerns about intimacy that you do.
I hope things get better for you; they have for me but I still have accidents and probably always will...hopefully just not as often.
I really hope you get things straightened out, whether it's going back to the ostomy or adjusting to this.

And I a(wo)men Paul's amen. Jill thanks for pointing this out. It needs to be mentioned every so often. There have been people on this site who have been advised NOT to get an ostomy no matter how much pain they've been been in. There was a young member here who really wanted to go back to an ileostomy because she was having such a horrid time with her j-pouch. She was 19 years old as I recall. Her surgeon REFUSED to perform that surgery. Shame on him. And Jill had to fight to return to her ileostomy. What is wrong with an ileostomy? Absolutely nothing. I guess I'm particularly incensed with medical professionals who hold such negative opinions about ostomies. I have to make the assumption that they have never ever been close to experiencing the pain or agony or being housebound because of a less-than-even-close-to-functional j-pouch.

BTW - if my j-pouch failed to perform I'd have no qualms about returning to an ileostomy. For me (and this is only my opinion), trying a K-pouch, BCIR or any other method just wouldn't be attractive. I know what life is like with an ostomy and it was darn alright.

kathy

I'll second what Jill and Kathy have said! I would definately have gone back to an ileostomy much sooner had it not been for pressure from, not only my friends and family (with the exception of Frank) but also from the medical profession! I'm not saying my life is perfect with Wee Willie (though we do rub along quite nicely for the most part) but it's a damn sight better than it was with my disfunctional j-pouch and all the "butt" issues that went along with the pouch or UC!

This should always be YOUR decision and we are all here to give you the pros and cons so that you can make an educated dicision!

Whatever you decide we will all be here to support you.

Take care

Shell

I’m not sure if it was my post that has been perceived as anti-ostomy, but if it was then I apologise, as this was not my intention.

I was not generalising and sure if someone is having lengthy and debilitating issues with their pouch and its is having a detrimental effect on their life, then offcourse a return to an ostomy is a viable and logical option.

However the opinion’s I expressed were in response to this post only. I’m not an avid user of this forum, so I’m not sure if I’m in possession of the full facts but it was my understanding that Alicia has not had the pouch connected for that long and originally things were going well but now she is encountering some problems. All I was saying was don’t be too hasty and give up on the pouch straight away, go see her GI/Surgeon and get this checked out, as there could be a simple explanation like pouchitis or cufftis. If this is the case then it could be sorted and her pouch function could improve again. If it is more complex and is going to be cause for concern then yes for sure look at all the other options, ostomy, kock etc etc.

I have had an end ileo and a loop ileo in my time, and adjusted to both well and have found this exceptable. However I would do everything in my power to save my pouch. Is that right or wrong, hey its just my opinion.

The purpose of this forum after all is to express opinion, and then the author of the post can take those opinions and make their own mind up, which I’m sure Alicia will do.

Again sorry for any accidental insensitivity or negativity that I may have shown.

Whoa everybody slow down, Alicia get yourself checked out like others have said maybe you have a simple case of pouchitis. Get yourself to the doc and hope that a round of anti-biotics gets you back on track. Have you ever had pouchitis or cuffitis before? I hope its just a matter of like that. But you have to find out. I hope your feeling better soon and I'm sorry your having these problems. I'll keep you in my thoughts and prayers.

Laurie