Right now I am feeling like nothing in my husband's or my life can go easily, smoothly, or the way we want. At every turn in the last 3 years there have been road blocks and obstacles. Since my major UC flare in Jan 07, life has been crazy. I was sick (while in an intensive graduate program) from Jan 07 until my first surgery in Oct 08. Since my take down in November 08, I have had what I thought was chronic pouchitis. I have been on antibiotics non stop since then, and every time I started to come off them, things got worse. Keep in mind, Charlie and I were originally thinking we would be trying to have kids shortly after the take down. . .so much for that thought. Then in March of 09, Charlie lost his job, and we are down to my salary. . .which has also put the pressure on me to have to keep this job despite the days that sometimes I feel like I need to go on disability I feel so miserable. We have been fighting with my colorectal surgeon, trying to find answers or help, but continually got put off by his fellows and residents. So finally I decided to start getting second opinions in St. louis. When they all realized they had no answers for me, they sent me to cleveland clinic. Thank god for cleveland clinic which is fabulous. They figured out what is wrong and now all my symptoms make since. Turns out i have an extra long, torturous, prolapsed pouch that is kinda like a kinked hose and thus pressure, stool, and bacteria are backing up behind it. . .thus causing my constant small intestine infections. (the cleveland clinic doc thinks my j-pouch was created wrong in the first place. . .so at least I know all of this is not my body's fault. So it is good to have an answer, and i thought there would be a simple fix. I thought they were simply going to be able to revise my current pouch with a fairly simple surgery and we could move on with our lives.

In the mean time, Charlie was asked to interview for a job in Bethel, CT. It is a very small town without much around it including no one we know and no jobs in my field (all of my family, Charlie's family, and our friends are here in St. Louis). It is a dream job for him, but it could mean less salary than what i am currently making, and I can't find any job leads for me out there. Which means we would be moving to a place with a higher cost of living with less money to pay for this. And even if I did find a job, I can't imagine it will be as good as the one I have hear. The job I have is very close to being a dream job for me. . .I don't think I will find something else that compares. Plus, we just bought a house here in November 08 so selling it 1 1/2 years later is not going to be easy and will definitely cost us.

OK. . I ranted about all that just to mention that our lives have been on a rollar coaster for the last three years. So today, I get an email back from the colorectal surgeon at Cleveland clinic with the answers to all of my questions. Turns out they think a pouch redo is the most probably option and the plan for that would be a three step surgery with 6 months bewteen the first two and 3 months between the second two meaning 9 months with a temp ileostomy ( I really don't know if I can deal with that). Plus, the real kicker of it is that he thinks I should then wait 3-6 months to even try to have kids. Since I already know that i don't ovulate on my own and will have to do fertility treatments, it will likely be a good 2 years before we are pregnant. Since Charlie is 41 and I am 30, I am beginning to get concerned. Not to mention, every single one of my friends is currently pregnant or just had a baby. . .and I am not exaggerating. . .really everyone single one. Even my sister in law is pregnant with twins which will be their 3 and 4 kids.

I am really frustrated and hurt and kinda numb to all that is happening in our lives right now. I so badly just want to be that cute family that is happy and pregnant or with the new little baby in our arms. I just want something to be easy for us. Why can't that happen?

I know that people have it much worse off than me and I feel bad for even complaining. .. at least I have an incredible, supportive, and understanding husband. At least I can get up and go to work every day. But today, at this moment, I just feel sorry for myself. I know time will heal and I will have more character and strength after getting through all of this. . .but sometimes I just want to yell "I have all the gosh dang character I need!!!!!" You know what I am saying?!

Thanks for listening. . .I feel a little better already.

This message has been edited. Last edited by: fissa,

Hey there,

First of all, you don't need to apologize for venting. It sounds like you've had quite a rough time, and it's perfectly understandable that you're frustrated and fed up. Whenever you feel like you're starting to get a handle on things, more obstacles seem to pop up out of nowhere. You have a good attitude, and it's good that you recognize that things will get better in time. You'll look back and realize that you've become a more compassionate and empathetic person because of it.

With regard to your dilemma over the redo surgeries and having kids, I think doing what's best for you (i.e. ensuring your own health) has to be your top priority. I know you know that. If you have to wait a couple years before trying to have children, try to think of the delay as your taking the time to get healthy so you can be the best mom you can possibly be.

Speaking of Connecticut, it's not all that bad here. It's not the most exciting area, but it is an excellent place to raise a family, and the schools are top-notch.

Keep us posted about what you decide to do.

All the best to you,

Jon

How frustrating!! I know this may sound a little silly but last year I had so much stuff going wrong that I finally gave up and started expecting the worst so I wouldn't be so disappointed all the time. My time has pasted I (knock on wood) have not had any bad luck or bad things happen to me since the end of December. I hope your time is coming too where things start to get easier. When you need to vent thats what we are here for cause noone will totally understand unless they have been thru all the physical trama our bodies have let alone the emotion aspect of it. Keep us posted I hope it goes well!

I hear you loud and clear! I wish I could wave my magic wand and make everything better, but I lost it several years ago... I, too, have all the blankety-blank character I need. I think many of us do. If nothing else, we can all pretty much top anyone else's story, which can come in handy while at a cocktail party full of obnoxious people!

Gin

I know you don't look forward to having an ileostomy, but why not think about actually having it longer than was recommended and trying for your baby during that time? As I recall, baby-making may go smoother while you have an ostomy.

Having a baby and then having the remaining two surgeries may help you get up and out of the hospital faster as well - so you can get home to the new person in your life.

I know this wouldn't be ideal. And on the other hand, two years isn't as long as you think. It will go very quickly (not as quickly as you'd like, I know).

kathy

I just wanted to add that it doesn't matter what all your friends are doing, it's YOU that counts. You are 30 and young, most of my friends conceived either naturally or through IVF way into their late thirties, with partners being over 40. The pressure we put ourselves under is huge and I'm sure that pressure will stay until you have children, but for now, there's every reason to be positive. Sort out your health first, that's the most important ...and yes, more ops are awful, temp bags aren't fun, but you know it'll be worth it, you have to look beyond sometimes.
Lots of love and positive vibes x