New to the site - need some advice urgently!

[mlusti1]

Hey everyone - I need some guidance and am hoping you can help. I've been sick for about 8 years now, went through the whole slew of medications and finally ended up in emergency surgery this past March. I had a full colectomy and now have an ileostomy. Because of my condition, what is usually done over 2 surgeries, has to be done over 3. So during the first surgery (as noted above) they removed my colon and gave me an ileostomy. The second surgery was supposed to happen in June, but got pushed back. This surgery will involve the building of a J-Pouch. After that, I'll be in recover mode again and then have my final surgery which will involve a reversal.
I am a teacher and am supposed to head back to work in 2 weeks. Of course, I just got a call this afternoon from my surgeon's office, with a date two weeks after I get back to work. I feel amazing since my surgery - I can't believe I don't run to the bathroom every 2 seconds! What a relief to be able to go grocery shopping and run other errands without having to consider where the closest bathrooms are!! So I feel great, but I really don't want to live with a bag my whole life. I'm okay with putting it off for a little while (I got over the fact that it wasn't going to happen this summer), but I dont' want to say no to the date they're offering me in case nothing comes up for a while. I have 2 major concerns:

1 - That I won't feel as great as I do now, after the second surgery (though my understanding is that the final surgery - the reversal - will be the one that is toughest to adjust to).

2 - Work - I had to take a bunch of time off last year (first in the winter because I had a major flare and was hospitalized), and then for/after surgery to recover. I don't want anyone to be inconvenienced by my taking off from work, especially my students. And I don't hold a tenured or seniority position, so I worry that at the end of this academic year, they'd find someone else (more reliable, with less health issues) to teach and I'd be out of a job.

This whole thing is just so frustrating. It took me forever to decide to go through with surgery (even if it was emergency), and now that I've gone through 1 procedure, I just don't want to be sick again. And I don't want this next surgery to interfere with my life (i.e. work)!

Any guidance, suggestions, advice would be so helpful!!

Wishing everyone only the best and lots of good health.

Thanks!

 

[RFarmer]

Hey mlusti!

Welcome, from a fellow Canadian

It's is frustrating, for sure, to try to balance health and work, especially when put in a situation like yours. I don't have an ostomy, so I can't offer you any advice, but there's lots of people here who can help. There's a stoma subforum located somewhere around here. If you can't find it, just ask someone.

Nice to have you here, glad you're feeling better, and welcome to the forum

 

[mikeyarmo]

Welcome mlusti1!

I am glad you are feeling better now adays, but I am sorry to have to worry about this dilemma you find yourself in.

May I ask why you are against keeping the ileostomy? It seems like you are doing very well with it and I just wanted to know if you even considered keeping it? Lots of people do very well having one and are able to live normal lives in public without anyone even having a clue that the stoma exists.

No one will likely no for sure how you will feel if the ileostomy is reversed.

You of course need to make a decision that is right for you so I wish you the best of luck thinking this through. Hopefully the forum can help give you perspective on people who have had ostomies reversed as well as those who have a permanent one.

 

[xJillx]

Hi and welcome. I am leaning towards what Mike is suggesting. Perhaps you should keep the ileostomy for a bit longer being that you are doing so well. I know it wouldn't be ideal, but maybe you could have the reversal toward the end of the school year?

I used to teach, so I understand your concern with not being tenured and being let go. One of my friends was just let go, because she had a baby before she was tenured. To be honest, your concerns are justified. This is why I would consider putting off the reversal if I were in your shoes.

 

[mlusti1]

You are all so helpful, you have no idea. Thank you so very much!

In response to some of your questions - why I don't want to stick with the ileostomy...Well, I guess I don't have any great reason for wanting it gone, except for the fact that it's annoying. I know it's silly, especially since many people live with it their whole lives. I just get frustrated. I get itchy and can't scratch it! I try to be intimate with my fiance, and (while he is totally supportive and doesn't care) I feel self-conscious. It's just foreign...it's not part of me and I'm not 100% comfortable with it. I want to be happy with myself and comfortable with myself, and this makes it tough...I know I'm strong, for everything I've put up with over the last 8 years. But sometimes I feel silly. Sometimes I feel childish. I don't want to think about the bag. I don't want to look at myself in the mirror (with clothes on!) and see its outline. I want to wear the tightest clothes in the world (not that I normally do!), and forget that it's there!

I don't know...I want to get married without thinking of the bag. I also want to get married without worrying about being sick and having to run to the bathroom. I just have a hard time coming to terms with the whole thing. Meanwhile, I think back to before the surgery when I was SO nervous about the whole thing and about how scared I would be of myself, seeing a part of me sticking out like that. I'm lucky. I am SO lucky.

I'm just frustrated. But so grateful for the miracle that happened on March 26/2011 - the day of my surgery. I haven't felt this good in 8 years and can't believe it. I never thought I'd feel like this. And I'm grateful.

I mean, this second surgery would be the building of the J-pouch. The reversal wouldn't happen until a following procedure. So I just don't know if I should put this off, because it will put off the reversal as well. I just don't know what I want in the end. I'm confused...But I so appreciate everyone's insight and the perspectives you all share with me!

 

[xJillx]

I can understand why you don't want the bag. You are not being sillly or childish. But it sounds like it is responsible for so much of your relief. So, extending having it (though annoying) won't be horrible if needed. It sounds like you just need to decide when the time is right. Good luck!