I'm going to make a post later, introducing myself and what not... but ever since my diagnosis, I can't help but obsessively google all the possible outcomes of the JPouch Surgery. The ones I'm seeing the most of is the Infertility, and potential for C Sections.. I'm supposed to be getting this surgery ASAP, and am totally not ready for kids - I'm 20 - but I think I'd want to have kids before I get it... Advice anyone?
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Yes, j-pouch surgery affects fertility. Ideally, you postpone surgery until after your childbearing years. But you also have to consider your risk profile, and that varies with the type of FAP you have. You do not want to risk your life over this question, and I am sure your doctors will advise you.
One thing that some patients do is to have a colectomy with end ileostomy, leaving the rectum in place for a future j-pouch after childbearing. It is the rectal dissection and creation of the j-pouch that causes most of the scarring that affects the reproduction system. But, how willing are you to live with an ileostomy that long and can you safely leave your rectum in place?
Finally, another issue is the question of whether you want to have biologic children in the future, now that you know you have the FAP gene. No right or wrong answer there, but something to mull over.
These are very difficult questions that you probably never expected to have to ponder, especially at your young age. I wish I had answers for you.
Jan 
Hey Jan!
Yeah its really difficult to even start to comprehend. I'm really too young to try and think about kids right now, I am just about to jump into a career, still living with my mother, and to be honest I like to party and have fun and I'm not ready to give that up yet to become a parent. There's so much i still want to do before i have kids and now its starting to feel like a now or never thing
On top of that there is that incredibly difficult 50% chance I'll give my children all these experiences and choices I'm dreading now.
I have looked into invitrofertilization - there's a process of picking and choosing emryos that do not carry my FAP gene... but some how it seems a little morbid to look at a dish of 5 potential babies and deem some of them not good enough because they're 'defective' even though I myself am defective as well.... And here i was 6 months ago worrying about what outfit I was going to wear to the bar and now i have to worry about every second of the rest of my life debating on some life changing situations
Ignorance is bliss, eh? I sense you will be having a sobering session of introspection and setting prIorities. If you are married, perhaps you can freeze embryos for later. But, there are no perfect solutions.
I think most just go with the surgery and hope for the best later. Someimes that is the best you can do. We cannot control everything or predict the future.
Good luck sorting it out!
Jan
Hey, I know I'm a little late to the posting, but I thought I'd offer my two cents, as well.
Like Jan said, it's important to know what state your colon is in. I had my colonoscopy in November 2014 (age 21) and my GI doctor said I had a year or two before my polyps became cancerous. Rather than risk it, I had my surgery that following January. Now, the guy who did my laparoscopic surgery also messed with my ovaries. I don't remember exactly what he did, something about pinning them in place or a little higher, but he said it shouldn't be too difficult for me to have children, if I come to a point where I do want to be pregnant. (I, personally, have always been more partial to adoption.)
If that's the only major drawback for getting to 25 cancer-free, I'm happy with it. But I didn't really think about it because I've never wanted to be pregnant, regardless. Not saying that won't change, but at the time, it wasn't much to consider. Especially in the grand scheme of things, you know? That's where my mind was at, anyway.
My best advice for timing the surgery is to do it while you're still healthy. If you wait until you have problems, the whole process--surgery, recovery, absolutely everything--will be much more difficult for you. If the doctor didn't sound very concerned, maybe said you have ten years before you really need to worry, then don't worry yet. Worry when they tell you to worry. But don't put it off for too long.
Hope this helped at least a little. Take care!
Leah
Hi FapQueen,
I guess that I had a totally different experience but that was nearly 40yrs ago.
I was 18 and had gone through over a dozen abdominal surgery for my conditions which included a colostomy at 2 and bowel resections and reconstructions.
No one was talking about fertility back then...it was not their concern. Their concern was keeping me alive and functioning. I did talk to an Obs-Gyn at 12 when I was panicked about sterility and her suggestion was to worry more about what they were giving me (drugs, x-rays and treatments)...there were no gene tests, no MRIs, no Scans so everything was x-rays with high radiation.
No one talked about the surgical complications, inflammation or scar tissue.
And funny enough it was probably easier because I worried about the present and not the future. I worried about my health and getting well and healing and not about what would happen to me 5 or 10 or 20yrs later.
I tend to cubbyhole things into chunks of time. What do I need to do now to be healthy? What will I need in 5 years, 10 years...?
It makes decision making easier.
Unless I have an urgent medical matter then I do not worry (too much) about it, I put it into the 6 month or 6 year box.
So deal with what is urgent, your health, your life and your colon...I find that the rest sort of falls into place as time goes by.
Just my way
Sharon
LeahD posted:Hey, I know I'm a little late to the posting, but I thought I'd offer my two cents, as well.
Like Jan said, it's important to know what state your colon is in. I had my colonoscopy in November 2014 (age 21) and my GI doctor said I had a year or two before my polyps became cancerous. Rather than risk it, I had my surgery that following January. Now, the guy who did my laparoscopic surgery also messed with my ovaries. I don't remember exactly what he did, something about pinning them in place or a little higher, but he said it shouldn't be too difficult for me to have children, if I come to a point where I do want to be pregnant. (I, personally, have always been more partial to adoption.)
If that's the only major drawback for getting to 25 cancer-free, I'm happy with it. But I didn't really think about it because I've never wanted to be pregnant, regardless. Not saying that won't change, but at the time, it wasn't much to consider. Especially in the grand scheme of things, you know? That's where my mind was at, anyway.
My best advice for timing the surgery is to do it while you're still healthy. If you wait until you have problems, the whole process--surgery, recovery, absolutely everything--will be much more difficult for you. If the doctor didn't sound very concerned, maybe said you have ten years before you really need to worry, then don't worry yet. Worry when they tell you to worry. But don't put it off for too long.
Hope this helped at least a little. Take care!
Leah
Hey leah! Thanks for your reply. I really appreciate everyone else's views on this. I still have yet to get my follow up from my first scope- doctor is pretty much MIA right now...����
I just signed a contract for a year at a high end spa that I love working at.. I am afraid I will have to wait at least a year to conifer surgery. Also haven't talked to my boss... but I plan to quit smoking, and I have started eating better and stay hydrated by drinking sports drinks as I run around doing clients all day ... hopefully that helps haha.. thanks for your reply. I guess I will really need to get on it!
skn69 posted:Hi FapQueen,
I guess that I had a totally different experience but that was nearly 40yrs ago.
I was 18 and had gone through over a dozen abdominal surgery for my conditions which included a colostomy at 2 and bowel resections and reconstructions.
No one was talking about fertility back then...it was not their concern. Their concern was keeping me alive and functioning. I did talk to an Obs-Gyn at 12 when I was panicked about sterility and her suggestion was to worry more about what they were giving me (drugs, x-rays and treatments)...there were no gene tests, no MRIs, no Scans so everything was x-rays with high radiation.
No one talked about the surgical complications, inflammation or scar tissue.
And funny enough it was probably easier because I worried about the present and not the future. I worried about my health and getting well and healing and not about what would happen to me 5 or 10 or 20yrs later.
I tend to cubbyhole things into chunks of time. What do I need to do now to be healthy? What will I need in 5 years, 10 years...?
It makes decision making easier.
Unless I have an urgent medical matter then I do not worry (too much) about it, I put it into the 6 month or 6 year box.
So deal with what is urgent, your health, your life and your colon...I find that the rest sort of falls into place as time goes by.
Just my way
Sharon
Thank you for your input! I guess I can't really advance in my career if I end up with cancer. I struggle with focusing on the little things in life - Obsessive Compulsive Personality Disorder. I plan things and over think everything but you are right.. my health needs to come before everything else. Thank you ❤
FAPqueen posted:LeahD posted:Hey, I know I'm a little late to the posting, but I thought I'd offer my two cents, as well.
[...]
Hey leah! Thanks for your reply. I really appreciate everyone else's views on this. I still have yet to get my follow up from my first scope- doctor is pretty much MIA right now...����
I just signed a contract for a year at a high end spa that I love working at.. I am afraid I will have to wait at least a year to conifer surgery. Also haven't talked to my boss... but I plan to quit smoking, and I have started eating better and stay hydrated by drinking sports drinks as I run around doing clients all day ... hopefully that helps haha.. thanks for your reply. I guess I will really need to get on it!
Hang on, so the doctor did the colonoscopy and found enough polyps to diagnose FAP (are you a first generation?) in July, but has been hands-off since then? I'm trying to remember how my process went. My grandpa passed FAP to my mom who passed it down to me. My mom (@TrishD on here, if you ever need post-surgery/in-hospital/recovery advice! She's fantastic. I flew through recovery, thanks to her) knew all the right questions to ask, and I was too affected by the anesthesia to focus. I do remember receiving the diagnosis as soon as I was awake, and my mom said they took biopsies of my larger polyps (clipped a few others so they wouldn't grow). I don't think we heard back from my GI doctor after that. She would have called us back if the biopsy showed cancer. She then referred us to a surgeon she works closely with, but other than that, we never heard back from her.
So that could be why your doctor has been MIA. Especially for doctors who don't specialize in FAP or who have never encountered it, if they find the polyps, give you the diagnosis, and don't find anything cancerous in the biopsy, they seem to leave it up to you to do the rest.
So my mom called our insurance company straight away and told them what was going on with me. We scheduled a meeting with two different surgeons (always good to get at least a second opinion. Probably best to get a third opinion, as well, when you don't know exactly what you're dealing with) and I chose the surgeon I was most comfortable with. He happened to have seen a couple of FAP patients, including my mom a few years before my surgery; she had Pouchitis and he fixed her.
The point I'm trying to make, and I'm sorry I get so wordy, is that the doctors might not get back to you at all because cancer didn't show up. But if they did give you the diagnosis, it's pretty much up to you to decide where you go from here. If you do want to take a year and get settled in your job, I'd say call your doctor and ask how pressing the polyps are. If your doctor says you can go a year without having your colectomy, that's ultimately up to you! But work should give you the time off, regardless, especially if you explain what FAP means. You'll be out of commission for a few months, though, because stomach surgeries are some of the toughest to bounce back from. Walking with holes in your stomach is difficult enough, but I imagine giving massages and other typical spa jobs use a significant amount of stomach muscles. Just time it as well as you're able, and don't be afraid to call your doctor or your insurance's nurse hotline if you have questions
Hey leah
Well they gave information to my aunt (she was the one who came to pick me up) then they called me one at while I was in school and left a message saying I had an appointment the next day but I couldn't make it so I tried calling back repeatedly and no one answered and hasn't answered since. Really frustrating because in the follow up letter I got a ill sternum said they removed polyps and what not and that they recommended surgery
And it's grandpa with FAP》mother with FAP》 me with FAP
I got the blood test and tested positive
FAPqueen posted:Hey leah
Well they gave information to my aunt (she was the one who came to pick me up) then they called me one at while I was in school and left a message saying I had an appointment the next day but I couldn't make it so I tried calling back repeatedly and no one answered and hasn't answered since. Really frustrating because in the follow up letter I got a ill sternum said they removed polyps and what not and that they recommended surgery
And it's grandpa with FAP》mother with FAP》 me with FAP
I got the blood test and tested positive
That does sound frustrating, I'm sorry. I think you should try to find a specialist near you, or at least a surgeon who's dealt with FAP before, and have your GI doctor forward everything to them.
And I forgot to mention earlier, but hydration is super important and I'm glad to hear you're working on that now! Dehydration is a huge post-surgical problem, but my mom and I love Nuun. You drop a tablet in water, tastes great, hydrates, has electrolytes, all that jazz! There's also GI Revive, which my GI doctor recommended, but I think that's more expensive.
Update time:
I finally got my follow up. I need the surgery yesterday. I'm on the waiting list for surgery for next year - J-pouch.
Never thought I would be asked" would you like to freeze your eggs?" at 20 years old. It blows. Don't know how to feel about anything at this point
But invitro looks like my only option for having babies... I am losing my bowels at 20 and I don't want my children to lose theirs even younger
