New with FAP and due to have surgery in June

Hello!

I just found this forum today and I'm happy to see that I'm not really the only one out there with FAP. I'm a first generation diagnosed in 2014 and currently 20 years old. I'm happy they caught it early for me to not have complications later on in life but I feel a bit lost. I go to Memorial Sloane Kettering for treatment and I'm thrilled to have some great doctors that know what they are doing and I trust them- but I still feel like I don't have the whole story. I've never met anyone with FAP and with the surgery coming so soon I was hoping I could have some advice or tips about anything. Its a one step colectomy / J-pouch surgery.  It kind of scares me honestly but I know its much better than the latter. So feel free to share your experience if you wish, I have also proposed a few questions so feel free to answer if you have a moment to spare, and I really appreciate it! (I promise I'll get to reading all the posts in the FAP forum after I prepare for some midterms!!)

Did you have issues with loosing or gaining weight after bowels returned to normal after the surgery?

How long after could you walk regularly or exercise?

How has it affected abdominal muscles and core if at all?

Are desmoid tumors something to be concerned about? (doc said its 1/5 chance)

Is it safe to assume I'll be ready to head back to college in late august if the surgery is the second week of June?

 

Sorry for the bombardment, I'd just really appreciate any and all feedback. Thanks!

Original Post

First of all, WELCOME! Glad you found us.

Secondly, educate YOURSELF and be your BEST advocate! I'd strongly suggest you goto a few sites, such as Mayoclinic.org and look here

http://www.mayoclinic.org/dise...inition/con-20035680

To get a good understanding of our lovely genetic mutation and what some possibilities are with it.

I just saw this, had a moment to respond quickly and will be back later.

Also there is no such thing as 1/5 chance of desmoids........desmoids come about due to genetics and where the mutation is and also each person's body is different, so I don't (personally) agree about saying 20% of us get them.......it could be more or less, but, yes they do occur and can occur.

In any event, make sure and educate yourself...........don't overdo it, do small portions at once because you'll overwhlem yourself.

We are all here for you!

Charlie

Hello and welcome to the forum. I too am still new to all this. I was diagnosed with FAP in 2014 had surgery feb 2015 and takedown may 2015. My whole family has FAP but I was told from childhood I would not have it thanks to genetics tests. My life has been turned upside down by this news and the events that go along with it. 

My advice is to not worry about desmoid tumors until you must. You can make things worse by worrying all the time. My mother and one of her sisters and their mother all had tumors. My aunt did radiation which helped, my mom did chemo which stopped their growth, and grandma had them cut out each time they came back until she died from all the surgeries. It is not something you should stress over as this can exacerbate other issues and make you miserable. Try to take life one day at a time and be patient with your body. I had so much stress surrounding me during my surgeries it is a miracle I lived through it, granted that is in great thanks to all my doctors for fighting when my body was too weak to do it myself. If I have learned anything from this disease and it being in all my female family members it is that no one has the same experience. You may have the surgery and bounce back to normal like nothing happened or you could be like some of us and have issues that seem unbearable from beginning to end. The question is do you have faith that your God would only give you what you can handle with his help? That is where I faulter, I do not have the faith I once did that would have had me sailing through these issues as if they were nothing. I deal daily with pain, and so much that I feel I can not handle. I have issues remembering that I have made it through so many harder times than this. 

Do the research and learn about your disease but do not let it scare you until your body gives you a reason to be afraid as this will make the small bombs seem smaller and the large troubles easier to manage.

best of luck to you!

Chuckus posted:

First of all, WELCOME! Glad you found us.

Secondly, educate YOURSELF and be your BEST advocate! I'd strongly suggest you goto a few sites, such as Mayoclinic.org and look here

http://www.mayoclinic.org/dise...inition/con-20035680

To get a good understanding of our lovely genetic mutation and what some possibilities are with it.

I just saw this, had a moment to respond quickly and will be back later.

Also there is no such thing as 1/5 chance of desmoids........desmoids come about due to genetics and where the mutation is and also each person's body is different, so I don't (personally) agree about saying 20% of us get them.......it could be more or less, but, yes they do occur and can occur.

In any event, make sure and educate yourself...........don't overdo it, do small portions at once because you'll overwhlem yourself.

We are all here for you!

Charlie

(Sorry in advance if I'm replying wrong)

I really appreciate you taking the time out to reply to my post! I feel like I have educated myself from medical websites but this is the first time I've found a place with real experiences from people. Oh I've already had to experience advocacy, I first went to Yale where they said I was fine and ripped out my IV, meanwhile I had a hemoglobin of 5 at the time and could barely stand without feeling feint. So my parents and I demanded further tests, lo and behold I was diagnosed with FAP and IBS. Yale made the entire experience just a disaster so personally I don't recommend anyone to go there for treatment. They also wanted to get my colon removed around 35 and that seems a bit like testing fate.  

About the desmoids, I actually have a PDF from my doctor going into detail about where the mutation is, so I'll experiment to see if I can find out where the desmoid mutation occurs (I'm no geneticist but hey worth a shot).

Yea, I have at times overwhelmed myself to the point of being way too worried and now I'm trying a different approach to see how others have been doing with this instead of too much research that is often daunting.

Thank you so much!

Jenn 

MandiG posted:

Hello and welcome to the forum. I too am still new to all this. I was diagnosed with FAP in 2014 had surgery feb 2015 and takedown may 2015. My whole family has FAP but I was told from childhood I would not have it thanks to genetics tests. My life has been turned upside down by this news and the events that go along with it. 

My advice is to not worry about desmoid tumors until you must. You can make things worse by worrying all the time. My mother and one of her sisters and their mother all had tumors. My aunt did radiation which helped, my mom did chemo which stopped their growth, and grandma had them cut out each time they came back until she died from all the surgeries. It is not something you should stress over as this can exacerbate other issues and make you miserable. Try to take life one day at a time and be patient with your body. I had so much stress surrounding me during my surgeries it is a miracle I lived through it, granted that is in great thanks to all my doctors for fighting when my body was too weak to do it myself. If I have learned anything from this disease and it being in all my female family members it is that no one has the same experience. You may have the surgery and bounce back to normal like nothing happened or you could be like some of us and have issues that seem unbearable from beginning to end. The question is do you have faith that your God would only give you what you can handle with his help? That is where I faulter, I do not have the faith I once did that would have had me sailing through these issues as if they were nothing. I deal daily with pain, and so much that I feel I can not handle. I have issues remembering that I have made it through so many harder times than this. 

Do the research and learn about your disease but do not let it scare you until your body gives you a reason to be afraid as this will make the small bombs seem smaller and the large troubles easier to manage.

best of luck to you!

Hi!

I'm sorry you were miss diagnosed in childhood and now have to deal with this. Imagine me never hearing of this before and on top of it being the first in my family! Joking aside, I too feel like I'm in the same boat. Instead however, it has kind of worried my mom a lot and I feel like I'm the one that has to be strong for her rather than worrying much of how I feel about the situation.

I'm sorry youv'e had such a rough experience through all of this. I imagine every experience is different and thankfully mine was caught really early, but I still feel weary about the surgery. Also weary for the changes to go on in my body since I'm really active, and my boyfriend has a fear of blood and scars so hes going to have to just get used to it. Honestly, over the years I'd say I have to a degree lost faith. My brother had leukemia at a young age, and members of my family have a multitude of medical issues, and none of these issues are genetically or feasibly connected to each other.  Sure something must be out there, but for a god to create everything in the universe and create parasites that only feed on human hosts making children blind, and many more scary things in this world, it makes you kinda wonder. Sure it may sound kinda horrible but the moment I had in a way banished the idea I suppose, the more I in a way began to love life and the future. I know its not a popular opinion but its how I see life and with everything life throws at me I suppose its easier seeing it as a random act then someone thinking I can handle so many horrible things. So thats my view. 

I also wish you the best of luck in your travels, and good health. 

SIde note, meditation has significantly helped me in my life and it may help you as well!

I understand having a different idea than others about why certain things happen and what helps get through the rough spots. I try to take other peoples opinions and religious sights when I give advice. As most people are christian and believe their god give them only what they can handle, this is why I said this. I mean no offense. I am of other beliefs but find no comfort in my beliefs during all these trials. I hope you have more comfort than I do in your faith. Things will eventually get better for us all we just need to push through the hard parts to get to the brighter sides of life again.

My child is the biggest help I have found in all these issues. She is the only thing that helps me push through until I feel better between the bouts. She smiles and the sun shines through the dark and dreary clouds. I hope you find something that will help you through. Remember when you are going through pain that we have been there and we want to help you as much as we can. If you ever need someone to talk to more specifically please feel free to pm me and I will give you easier access to me. Having a friend who understand what you will go through does help. My younger sister went through everything five years before me and I wish she were around more for helping me to push through but she has decided to take herself out of my life and take away the only person who I know that understands the j-pouch and all the possible outcomes. I would love to have someone else to talk to and to mull things over with.

Good luck and do not feel you have to be strong for everyone around you. When you feel you can not handle anymore of being the strength for your mom or anyone else please feel free to contact me. I will be here for anything and everything I can. Do not be afraid to tell your mother you need her to be your strength for a little while and that you are afraid. I was terrified when the surgeries were coming up. The only person I had was someone who hated me and yet she put her hatred and fear of what would happen to her brother aside for me and was my strength. You are going through a lot and it came out of no where and it is expected that you need to break down from time to time just as a way to relieve the stress even. 

It sucks that your family went through all that with your brother and now you all have to deal with this. 

Oh please I mean no disrespect to your beliefs either! Its simply the way I feel about things but that doesn't mean at all its the right way to live, but rather has helped me in a way to live my life. 

That makes me so happy to hear you have someone that makes you feel that way! It must be wonderful having a daughter. I'm actually a sophomore in college and way too young to even think about that yet. My boyfriend has been with me since the start of all this and honestly I can see myself spending the rest of my life with him (which may sound childish). He's been with me through thick and thin and even though all this is going on, I'm the happiest I've ever been in my life. I really appreciate your offer and I may take you up at some point. I'm so sorry your sister did that, I know all too well what its like for family (my case extended) to take the rug out from under your feet of having family to rely on. The only extended family I speak to anymore is my grandfather who is not as good with his memory in his old age. From experience, if she had done that its probably for the best so you don't have to deal with rejection or toxicity repeatedly. Through the years of dealing with rejection from one entire side of the family I realized they weren't really there for me from the beginning and honestly my life is so much better off, so I hope this is the case for you. 

Oh thank you so much, its been really hard since the diagnosis with my mom and all and you are definitely right . Oh my gosh thank you so much I really appreciate it and your kind words. After I get my footing with the surgery and all, I hope to return the offer to you as well. It would be really nice to chat with someone going through similar experiences and all. And yes, it all certainly has been troublesome but i feel as though I have been through worse and that I can make it through this. The pain of the surgery is something thats still daunting to me though but physical pain is temporary.

Thank you for everything!

In all honesty the pain from surgery was very bareable. The worst part was when they force you to get up and walk around after the surgery. I felt as though if I stood up fully it would split me open but they try to get you to stand straight for the fact that it makes it less painful as you heal. The more you walk the easier it is and the faster you heal. The medicine they give for the pain works very well. Just remember that you want to introduce new foods very slowly so that you know when something does not sit well with your new body arrangement. Listen to the advice of keeping away from raw vegetables for a while. I craved them so much but it hurt more because I didn't wait. Stay away from watermelon unless you spit out the fruit after sucking the water from it as it makes a large mess in your bag and can block you up too easy. Keep yogurt close at all times as it really does help with the smell. There is so much to learn and adjust to. Try starting to make some of the small adjustments now so it is a bit easier on your body later and easier on your mind. 

Relax after and do not push yourself too hard. Push hard enough only so that you improve but do not over do anything. Rest often especially if you can not keep your fluids down. Start drinking more water now and adjusting to less sodas. Also after be careful with the different juices as after the surgery grape and apple juice may increase your output. Keep grape juice on hand in case of blockages, this is a trick my mother tried to tell me but did not tell me until after I had had my first blockage. The blockages are terribly painful but they can be prevented and undone easily with the excess amounts of grape juice. Chew your food very well and into very small bits. Take your time chewing to ensure that the bits get small enough to not cause blockages. 

On the other side please remember to let your family and friends to help you and to make your life easier. As the doctor's orders will be that you do no chores for several weeks make sure you follow these orders. I made the mistake of going back to working around the house too early and sending myself to the hospital. 

Oh my surgery is actually one step, just j-pouch, no stoma bag. 

Also that puts me a lot more at ease about dealing with pain! I'll definitely be careful of foods, as it is its hard for me to work anything through my body. I think its moreso my fault for being vegetarian but I do eat fish on occasion.  I also don't drink sodas or eat much bread because it tends to make me very uncomfortably bloated, I've actually been in a way trying to prepare myself for the last year to make it easier on myself but I do eat a lot of uncooked veggies which will have to change. 

I'll be careful about blockages as well. Thanks for the tip about grape juice! Also, do you happen to feel blocked up by having dried fruit? I love dried fruit but I'm slightly worried about that now and if I should avoid it in the future. 

Oh haha I'll be sure to make that clear to my family! That's probably one of the best perks to come out of this. Oh gosh I'm so sorry to hear, that must have been scary. I'll definitely take it easy then. About 3 months after the surgery I'll be heading back to school, did you experience much issues around that time? I've heard from those that have gone through the surgery but for different reasons had said it starts to be a bit more regular around then. 

Jenna,

Not much time to reply, but, wanted to reply briefly. I see your surgeon is telling you he plans to do it in one step, which is great. BUT, word to the wise, be prepared that due to unforeseen circumstances your surgeon may have to give you a temporary ostomy. Sometimes when they open you up, they find things or reasons they have to give you a temporary ostomy. Just be prepared, there's always a chance they cannot do it in one step. Just a little word of wisdom, I've seen folks who were told the same thing and it turns out they have to have a temp ostomy. My surgeon told me to prepare for 2 step, but, he was going to try and do it one step........and I wound up with a temporary ostomy..........it happens and I don't want you to be blindsided if that happens.

Charlie

Charlie,

(I'm replying from my phone currently so I can't exactly elaborate much)

Thank you so much for warning me of this, I certainly hope I won't have to deal with that as I expect to return to school in the fall. Due to medical issues I'm already a semester behind my projected graduation date. From your signature, did your is to my last 4 months? And should I prepare myself for possibly not going back that semester?

Thanks!

My surgeon told me that they always do it with a temporary ostomy. They told me they have to do this so that the incisions have time to heal before the stool passes past it. The temporary ostomy has to be there for 3 months for healing processes. 

Mandig,

I actually spoke to my mom who had talked to my doctor earlier addressing these concerns, and at MSK they apparently only do 2 step if the patient is in a critical form of condition and for someone my age it is rare they have to do the 2 step. Also my mom says that's the reason she chose MSK in the first place so while I will prepare myself for the inevitable, from what my doctor has said and previous patients it (hopefully) seems they are able to do it in one step so I will keep my fingers crossed!! Of course I will heed all your warnings and I understand it is a possibility, it seems to me from what I have been told that they do one step surgeries for someone with my characteristics and whatnot. I appreciate all of your concerns and I certainly hope my doctor is right! Just so I wont have to worry about bumps in the road for going back to school.

Thanks!

Thinking of you - 30 year j pouch here with FAP - you cant do it and it will not ruin your life at all...you may go through some ups and downs with adjusting, etc. and that is to be expected...they have improved the surgery enormously since I had it 30 year ago...people are doing better and better with the new surgeries.  I agree with whoever said not to worry about desmoid tumors etc. - (easy to say) - you can worry yourself sick with all this stuff. Most people who get the pouch live many, many years and have great lives - myself included.  I have had problems here and there throughout the years...but I am thankful for the pouch.  Good luck and know you can come here to this wonderful forum for support!

Thank you for replying Angie!

I in the past have worried myself sick, before going to college i took the semester off because i was going to have the surgery. a few weeks before we thought it would happen my doctor told me about desmoids and this was the first time I heard of them! (This was roughly 6 months after being diagnosed and everyone told me to not search the internet or I'd worry myself). It scared me a lot, but wasn't the reason the surgery would be rescheduled a year later. I certainly hope I will live many years. I hope to travel in my mid 20s and have children in my late 20s. Figure I'll try have some fun before anything drastic can crop up. 

 

Oh also everyone I almost forgot there's this new thing called CRSPR! Search it when you get the chance! Scientists have developed basically a virus that can search for bad cells with mutations and with RNA it works to replace the genetic mutated part of the cell, in our case FAP. One of the first subjects to be tested was also an FAP patient and it is now cured from their body, no more worying about all the bad side effects that are apart of FAP. I have no idea what this could mean for those already with desmoids but hey, its worth a google search. My mom just told me about it yesterday so I haven't done much research but I will update! Its also something not currently in the US I believe because it uses stem cell research which I don't believe is permitted here.

 

Interesting information!  I always hope for future generations this will happen!  My mail had a type - can't was supposed to be "can" - as in "can do this!"  My surgery happened at age 23 and I'm 53.....  My father had it at age 52?  more or less and is now 79.  Sister had it at age 18 and is now 48 - all of us have had great lives - obvious ups and downs that come with living....but overall, we have been blessed.  I hope the same for you!!  There will be some tough days - but that is really true for anyone at certain points in life - people get illnesses and have to cope - and lucky you - you got handed FAP!  We handle a lot of this with enormous amounts of humor in my family.  It really does help.  I did all kinds of things with my pouch - travelled abroad, went back to school to get a masters, ran a lot, ate pretty much whatever I wanted - learned what to be careful with over time, taught high school and then became a counselor, married, on and on - a full life with friends and family...a job, etc. - and you can do it too! You have one magic thing on your side - time and youth!  Your body heals so much better when young and you are full of determination to let nothing stop you!  (or at least I was)....as corny as it sounds, attitude is everything.  I need to take my own advice right now as I've felt a bit bad recently - not sure why - but whatever it is - you just deal with it the best you can.  Proud of you and know you are definitely NOT alone - we are here!

Jennga posted:

Charlie,

(I'm replying from my phone currently so I can't exactly elaborate much)

Thank you so much for warning me of this, I certainly hope I won't have to deal with that as I expect to return to school in the fall. Due to medical issues I'm already a semester behind my projected graduation date. From your signature, did your is to my last 4 months? And should I prepare myself for possibly not going back that semester?

Thanks!

There was 4 months between surgery and ostomy takedown/reversal. There is no specific timetable, it all depends on how your body heals. Some people heal faster than others. Not trying to be vague or whatnot, just honest. No 2 people are alike. The "standard" or what is told as the "normal" is 3 months, but, it could be 2 months or it could be 5 months. You can go back, just because you have a temporary ostomy doesn't mean you can't goto school, just be prepared that your getting ready to go thru a big surgery and your body will take quite some time to recover.

Great explanation, Charlie.  In my case, I had the surgery, had 2.5 months, as was back a work in my second year of teaching high school.  It was not easy, but I was determined.  My younger sister had surgery at same time and was in between high school and college - she made it to college and did it.  I agree that no one is "the same" and hopefully your 1 step will go really well...obviously, it takes a lot out of you (insert laugh here) - and yes, it takes time to regain your strength - perhaps more than you think...I would expect weight loss (most people going through something like this lose weight) and to be very, very tired - this is "NORMAL" post op for something like this.  I had great pain meds and pain was not an issue.  Your young body will help you recover...as I said earlier, that is the strength you have in your corner.  Charlie is doing a good thing - it's not to worry you - it's to help you adjust your expectations - lower them a bit - then, if things all go according to plan, it will be fantastic and on you will go - but if there are hiccups - you won't be so shocked and "why didn't anyone tell me this could happen" - surgeons are notorious for saying the best case scenarios and in their eyes - that's often all they do see for the most part - the final outcome - a hiccup or two along the way may be really hard on you and your planning, but to them...a few months pass..you are on the mend, and all is well.  It's all about perspective.  You are in excellent hands, you are determined, young, and none of us out here with pouches years and years later would be here without them....we've done well overall and you will too!

Sorry I haven't had time to reply lately!

Angie, thanks so much for your reply, I'm so happy you were able to do so much and have the j-pouch! I've always thought of this as a huge lifestyle changer aside form diet and bathroom habits so its a bit of a relief for me to hear the wonderful news. 

*Sidenote about the CRSPR- apparently scientists at this stage do not recommend undergoing the procedure as there have not been thorough studies on the effects, effects of embryos, and  whatever else. Kind of odd that they have gone into human trials and done the procedure on quite a few people. Granted, some were in critical condition and this happened elsewhere, not in the US. My doctor at MSK had never even heard of it even though there was a large meeting/event discussing it in DC.

Thanks Charlie! Yea, thats definitely the truth about healing, I just hope I'm on the faster end of that spectrum! Okay that's good then, I had figured that an ostomy may mean more bed rest than I'd like and would make it difficult to go to classes, but since that may not be the case, that's great! I'm recently getting over Mono and finals are coming up, I've found myself sleeping 10- 13 hours a night lately compared to my usual 5 or 6 which is great since I'm getting the rest my body needs but I have a lot of work to catch up on!

I never thought of it that way Angie about the doctors perspective, thanks for clearing that up for me. I certainly hope it all goes according to plan! Especially with the healing process, I'd like to go camping in the end of August - if my body can handle it that is. I've been wanting to go camping in the summer for the past 2 years and got some equipment for Christmas haha so we will see but either way I wouldn't be disappointed.

Thanks guys for your words of wisdom, concerns, and help through this! It's nice to know there's quite a few of us out there (even though I wish there weren't in a way, but we will all get through this!)

You are going to do really well - attitude is so much of it - and I was super scared - but also super optimistic - as in - "this isn't going to get me down" - and that helps a lot.   You WILL get through it and you will be amazed that you can have a perfectly "normal" life - whatever that is  The anticipation is hard - it was better once it was over and I had that behind me - after about 5 or 6 months post op, I really didn't think about it a lot  It became my "new normal" and I did great for many years - I have a few ups and downs now - but I'm 53 - oh God - 54 in a week.  So, that's just aging and things get a bit more difficult to deal with - which is part of aging for everyone.  Your can do attitude is going to carry you a long way!  We are cheering for you.

I'm so glad you've gotten so many responses! I know I'm a little late to the game, but I'll offer my two cents, anyway. I had my surgery done when I was 21 (I'm 22 now). I did it during winter break and missed the first week of class because walking tired me out too much. Plus, my bladder was minorly punctured during surgery, so I had a catheter and I my JP in after being released from the hospital. I didn't want to go to class like that, on top of having to be wheeled around by my mother.

I went from 115 to 97 in the hospital, but I gained it back with diet and exercise. My weight has been stable and I haven't been going to the gym, no issues losing or gaining. 

It took me about two months before dancing the Cupid Shuffle didn't completely wind me, if that's good for comparison. Regular exercise probably didn't resume for four or five months, and even then it was very, very light exercise. Walking laps, mostly. I waited for my scars to get closer to my natural skin tone, so I knew everything under the surface was more or less fully healed. 

Stomach muscles: It hasn't effected mine, really. I stretch regularly to make sure the scar tissue isn't too tight. Around the six month mark, if I went a week without stretching out a little bit, my stomach muscles would feel very tight, but I haven't noticed any long-term effects. It's going to take a long time to get your stomach muscles back to where they were, though. They got sliced all the way through. Don't rush the process. I think it was about a year for me before I could do 20 sit-ups in a row (but then, I also wasn't too fit before I went in for surgery). 

As for demoed tumors, every body is different, both with possible future cancers and how the body responds to certain foods. My mom has issues with mushrooms; I have issues with corn. She has issues with dairy, too, and they haven't found polyps in any of her colonoscopies for the last twenty years, but they found two in my second colonoscopy. I'm not concerned about it. The doctor will tell me if I need to worry. It sounds like your doctor just wants you to be aware that removing the colon might not solve everything. It solves the most important thing, the most pressing thing, and that's the thousands of polyps that will eventually turn cancerous, all lining your colon. Other than that, it's up in the air what happens next. Just pay attention to how your new digestive tract interacts with your body. If you're good about your yearly colonoscopies, you shouldn't have anything to worry about. They're good at catching these things. Make sure, though, that they're checking out as much of your digestive tract as possible; FAP affects the thyroid, too, and the esophagus and--I mean, literally the entire digestive tract. If they're only giving you yearly colonoscopies, they might not understand enough about FAP, so you might want to consider seeing someone with more genetic colorectal cancer experience. 

Lastly, you'll be good by August! I was in class about four weeks after my surgery. It wasn't the most comfortable experience of my life, and I was walking veeeery slowly, but it wasn't so bad. 

Hey! I'm recently diagnosed as well, on the aiming list for my jpouch! I'm 20 years old and no offence to any of our older members but it's almost comforting to hear another young person joining the FAP club.  I'm the youngest person in my family to get my surgery so that definitely doesn't help ! So welcome to the club, sorry it's not a cooler club to be in lol

Hope to talk to you!

FAPqueen posted:

Hey! I'm recently diagnosed as well, on the aiming list for my jpouch! I'm 20 years old and no offence to any of our older members but it's almost comforting to hear another young person joining the FAP club.  I'm the youngest person in my family to get my surgery so that definitely doesn't help ! So welcome to the club, sorry it's not a cooler club to be in lol

Hope to talk to you!

I absolutely feel the same way. I'm also the youngest person in my family to have the surgery, but it's only been passed down to one person per generation so far, and I'm only the third. Likewise, welcome! It may be a shitty club, but it's great for post-surgical puns  

If you ever need to vent or talk or have any questions, or if you just want to talk about something else, feel free to message me! I'm happy to connect! 

It's great for you guys to have other young people to talk to - no offense taken by this 54 year old!  I remember being  20 and someone in their 50s was someone on another planet!!!  Plus, so much has changed in terms of how surgery is now often done in one step etc.   We all want to relate to our peer group - that never changes.  Good luck to all young j pouchers and as the years go on - it will get better and better - and then one day, offspring will have the gene edited out or something and no more of this!  Won't that be something!  So proud of young people with a great attitude about this - I forget as I am getting a bit older and a bit crankier - but my positive attitude and youth carried me through and that's what you guys have too.  I had bad days - but if it hadn't have been from FAP - it would have been something else - that's life.  Good and bad, happy and sad, all mixed together.  Going through FAP was in many ways a gift - it does teach you to appreciate the simplest things and to know how thankful to be for progress in medicine/surgery so we can live full lives.  Best to all the young!  We need you to keep this old world a spinning!  Your fresh ideas and new perspective are what keep things moving forward.  Thanks!

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