Hi everyone,

I am really in need of support. I am having probably a panic attack but I am extremely anxious and upset. I went from being healthy in December to being post surgery 4 weeks now. None of the meds worked for me. Regardless I went into surgery feeling okay about it, it's been up and down mostly up until I saw my GI and my Surgeon the other day. Now I am spiralling beyond control. I wanted the j-pouch I still do very badly but was told that because of infertility rates in women it might be better to start my family before doing the surgery. I was kind of heartbroken, because I won't be starting my family for at least 5 years. I still have to go to school and save up for a place to live with my boyfriend. I didn't want to live with the bag that long, but if I do the procedure to get my pouch I don't want to regret it and not end up being able to have kids. I'm nervous, scared and depressed because I don't know what to do. That and I keep reading horror stories about jpouches, it may not even work if I get one. They call this surgery the gold standard but all I hear about it problems with it. I don't know what the point is of anything anymore, I just need someone to tell me it'll be okay. I probably need a therapist but I suck at talking to people especially about my feelings, also they are not covered by my insurance and are expensive.

Original Post

Hi coffee...

This must be very stressful for you, to feel so much is weighing on your decision. I had two kids with a J pouch with no problems (I went to an OB who had experience with higher risk pregnancies, and did a scheduled C-section to avoid any problems with vaginal delivery). I had the pouch already for about 10 years by the time I had my first child. Is your doctor talking about infertility due to the J-pouch? or due to the disease? Are you somewhere where you could get a second opinion? 

Make sure you take care of yourself, it takes a while to recover from surgery. Tell yourself you don't have to decide right away and give yourself time to do some more research while you are recovering.

Sending you some support from afar.

My doc is talking because of the jpouch surgery ie scar tissue blocking the tubes. My surgeon hasn't talked to me about it, it was more my GI who cited a study from 2006 about the chance of infertility being 3 times as much. 

I know I should take my time, it is just hard not to have a plan in place. Thank you for the support it means a lot

I understand the stress level and the fear, I think that we all do...

Firstly there is a 2nd solution. You could have your eggs frozen for now. Yes, the put you on hormone shots for about 3 months (sorry, there is weight gain and massive mood swings involved but they go away once you stop the hormones) and then they punction and remove a certain number of eggs and freeze them for future use. Which means that you can have the surgery now and be able to do invitro fertilization later using your own eggs. 

It could allow you the have the best of both worlds. Yes, it is still another procedure and I understand that you prefer to conceive naturally (and you might very well be able to, plenty of women on this site have)...but this is just a sort of insurance policy for you.

By the way, if you come here for advice, you will read a lot of posts from people who are having problems and need help...the vast minority of J and K pouchers...most of the people with pouches, are just too busy living their lives to come and post...so do not take what you read here as a sample of the general pouch population...

Good luck with your decision...take a deep breath, ask yourself one question..."what is my end-game?" What is the result that you want, really? A healthy pouch and a healthy baby...so you can use that as a guide to getting the solutions that you want.



I wish when I had my pouch done they would have been honest about fertility issues. I have had my pouch for 17 yrs and specifically told the Drs I didn't want it if I wouldn't be able to have kids. They assured me I would have no problems. I continued to try to have kids until I turned 35. I always said that was my cut off date. I have been completely opened 5 times and now my uterus is retroverted and lays flat on my Jpouch. They are completely stuck together. 3 yrs ago I had adhesions surgery and the drs said they wouldn't even attempt to detach the 2. It almost gave me a nervous breakdown. Be appreciate that they are being so honest and helpful. 

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