I am a FAP patient and I will have my colon and rectum removed. My doctors want me to go for the J pouch but because I could develop polyps in there and also because of all the possible complications/issues (explained below) that could come with the pouch I am thinking about going with an end ileostomy which for some might sound stupid but the less surgery the better for me and it seems to grant a more stable life "outcome" then the J pouch which could fail before I die, giving me more trouble at a later age or even before. But ileostomy has its own issues as well and my concerns are explained in detail below which makes it really hard to decide. This is why I am in need of help from you because doctors do not have to live with a pouch be it internal or external, they have no experience with using them and living with them. You do, and this is why you could give me real help in deciding what to do, this is why I turned to you. Thank you, everyone, who reads my post be it the short or the long version!
Long version (full story):
Hi! I am new here and I really need help, English is not my first language so please forgive me if my English is bad. I have so many questions and doubts, honestly I am in a dark place right now. I have been diagnosed with FAP (Familial adenomatous polyposis) a few weeks ago, I have hundreds upon hundreds of polyps in my colon and a few in my rectum as well as some polyps in my stomach (not sure what is going to happen with these yet). The doctor said that my colon and probably my rectum has to go because I would have cancer in the next 5 years with a 100% chance. I am not ready to die and I also have a beautiful little boy and an amazing partner and they need me. You could ask why I am in a dark place if I have such an amazing family but it is me, I was always a bit negative, maybe because of my illness I do not really know but I tend to be too negative at times and this is the case right now as well.
They help me so much, without them I do not really know how could I even handle all this but the truth is that we do not know much about what my life is going to be, we do not even know if I should go with J Pouch or an end ileostomy. I asked my doctors in two hospitals about my worries but honestly, they pretty much want me to accept what they tell me without questions and they are pushing me towards J pouch. You might know the feeling when you ask a question from a doctor and he says "Ask anything you want!" but you see his face telling you that he does not really want to answer you...
Before I continue I also have to mention that I have a couple of amazing friends too, who have been with me along the way and they helped me a lot!
So we did a lot of research online but the internet is a tricky beast as you may know. First, as my doctors advised me to go with the J pouch I was happy since it seemed my life would be more or less the same as it is now, 3-6 BMs a day (I was hoping to get a better result but I can live with that...), some diet, and more liquids because of the dehydration, it all seemed pretty good until I started looking after the possible issues, complications and then asking a few questions from my docs. The possibility of incontinence or just simply soiling myself, the pouch not working properly, having to wear adult diapers, adhesions, not being able to sleep through the night because I have to go to the toilet, always having to fear where the next toilet is (which I can actually use...), pouchitis, cuffitis and so many other even life threating complications that I was beginning to question if I really want to go with the J pouch. Also, if at some point I want to get rid of the J pouch, well that is not an easy thing to do, not at all, big surgery with a lot of possible complications.
I think it is time for me to mention that I really handle being in the hospital or at a doctor very very poorly, I am so stressed and fearful that it does make me at times hard to bare, I am not an easy patient, I am trying to handle it better but with little luck. Originally my dream was to never ever have surgery and die of old age but that is obviously not going to happen now. Simply put I fear everything related to sickness. Maybe it a childhood trauma, I really do not know but it is a fact, so this indeed factors into my decision as well since I want to have the least amount of surgeries.
With J pouch that would be the very least 2 surgeries for me but if something goes wrong as I read a lot of stories here and on other forums and youtube and so on this count could go up way higher.
Also since I have FAP, there is a really high chance of me developing polyps in the pouch as well, maybe I could get 5, 10 or maybe even 15-20 years out of the pouch without issues but I am 35, which would mean that around the age of 55-60 I would have to go through this hell again and who knows how it would end at that time.
I immediately started looking into what alternative options do I have. K pouch is kind of the same story as J pouch, although I could control it to a degree myself, my illness could attack it as well, lot of possible complications... long story short I put this idea on the shelf for now, it is good to know that unlike with the J pouch I can go back to the K pouch if I can't live with an ileostomy while if I pick end ileostomy I can never really go back to J pouch anymore unless I leave everything in place for it (I guess?) which means that there will be stuff coming out of my butt as well as my stoma which doesn't really sound fun to me at all, I need fewer things to worry about not more.
So I started looking into end ileostomy. My body image is not really an issue for me, I learned to live with my illness which made me "weird" in others' eyes, going to the toilet a lot of times, being pale all the time of the blood loss, not arriving on time most of the time, not going out often, not traveling etc. well a bag on my side which can be hidden is not that big of an issue to me really compared to that I thought. I have to add I never liked this way of life, I was a very happy and very active guy before my illness but my fear of hospitals and my illness took over me, I let them which is my failure and I have to live with that and I do hope after the surgery I can change this and this is also kind of my goal, to live a happy and active life, my partner misses the old me too and I want my son to see me happy not like this.. BUT, my biggest fear was always that I soil myself...now you can imagine when I read about constant leaks, ostomy pouch falling off of me whether it is me not securing it properly or the adhesive giving in to hot weather or something else, not being able to sleep safely because of the possibility of leaks and blowouts (I am also sleeping on my tummy so I would have to get used to sleeping differently or squash the bag overnight which isn't fun as I read about that too..) and whatnot, not being able to sleep through the night because I need to empty at least once (although this is something I could accept I think), blockages which are terrifying to me (but I know that can happen to J pouchers too), not being able to safely travel, hernias thus not being able to lift anything (again I know this goes to J pouchers too but I want to be able to help my family with shopping....) and so many other things it would be an even longer post if I listed everything. So I am quite sad right now because I thought the stoma could give me an outcome where I would have a chance of not fearing my illness anymore 8besides my stomach polyps) and be happy and sort of free again...
And lastly about the barbie butt surgery...since I am thinking about an end ileostomy and I do not want to have two "holes" to manage (butt and stoma) the choice of closing my butt was obvious but again I read so many bad things about it (not being able to sit for a long time, bleeding and so on) and the fact that my work requires me to sit at least 8 hours a day doesn't make it better either and I want to go back to work as soon as humanly possible. Maybe someone could give me hope that it's not that bad?
Anyways I wrote all this down in hope to get some kind of help in making my decision, and maybe help me see my future in a better light, to be able to get out of this dark cloud I have around me right now. How is life with a J pouch and how is it with a stoma? Is it really that bad? Will I regret not going with a J pouch if I pick end ileostomy? Please help me get to a better place. Also, it would be nice to be able to get help from those who have FAP and went with either a pouch or a stoma, to know what their experiences are since this disease is quite a bit different from inflammatory diseases.
I would like to thank everyone who took the time to read my story, I wish everyone the best of health and a happy life!
Last edited by Blazee on Tue Oct 02, 2018 12:46 pm; edited 1 time in total