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J pouch or end ileostomy as a FAP patient, please help

Posted by Blazee, on Tue Oct 02, 2018 9:10 am

Short version:

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
Reply by Puppyluv56, on Tue Oct 02, 2018 11:51 am

Blazee, you certainly have a lot to think about and I have a Colostomy so the J Pouch-v- end ileostomy I have not a clue but i did have a high grade cancer in my rectum and it was gone with three rounds of chemo that were pure hell! I can tell you that the surgery to close the rectum for me was not that bad. I had other extensive surgery at the time and it seemed the least of my worries. It does feel funny because of the flap. Like not really a part of your body but that gets better as time goes on. I was able to sit all the time. I just had to be very carefu to sit slow and a little to the side so I did not pull on the staples I had. As for having to change a pouch, find a restroom, etc. you get good at it! I really think finding the right product for your body and lifestyle is he key to confidence when going out and it took a while for me to find that but I did! I just had surgery in April 2018

Reply by Blazee, on Tue Oct 02, 2018 12:35 pm

Puppyluv56, first of all, thank you for replying to me, I realize that my post is very long and it must be a pain in the...pouch (?) to read but I had to write down everything that bothers me and keeps me up at night.

On a more serious note, I am young and I cannot bear the thought that I can't go to work as I normally would, or go out with my family or friends and these sort of things without the fear of having an accident or worse. The illness took a lot from me already and I say that while I do know that some of you suffered way more then I did, had to endure way more then I had to/will have to and still have to endure a lot more then I do and I wish everyone the very best and I do think you are all amazing for fighting through whatever illness you have but in my world these are big issues for me.

Sleeping is another issue, I cannot go on for very long without having a good sleep and I do realize the pouch could cause me huge issues in this department because if I am feeling stressed (like now) I can barely get to sleep so if I have to get up often I probably won't get much sleep at all and then I am going to be useless.

About the sitting issue, I already missed more than a month of work, I do not know how long my workplace will tolerate it, they are very understanding but its a company after all and they need me working even if they say otherwise, so I want to go back as soon as possible not just because of this but because I miss being there. I am very lucky in a sense that my really good friends are also my coworkers and if I can't sit through a work day I won't be able to work simply put. On the other hand, having to care for two holes is way worse than having to only worry about one...

 I also know that it is not easy to give advice to others simply because age does matter too. Younger people tend to have more demanding/active lives and their needs might be different than those who are older, retired from work and so on. Because of that, I do wonder how my younger age will affect everything related to the quality of life for me. Please do not take this the wrong way. What I mean is that someone who retired and is mostly at home, for example, have fewer issues of changing/emptying the pouch or going to the bathroom with a J pouch more often than a younger person who has to be away from home all day working, attending meetings, traveling etc.

Mentally I am a mess so that is another issue for me, handling accidents will not be easy for me doesn't matter which way I go. If it happens once or twice a year I can live with that but if it happens weekly or even daily, that could make me go crazy really fast. That is something I know I can't handle, at least not for long.

As for finding the right product, well it is going to be a challenge. At the moment I do not even know where to get advice from in my country/city, I do not know what products will I be able to use etc.

Once again thank you for reading my post and I wish you the very best!

Reply by Puppyluv56, on Tue Oct 02, 2018 7:05 pm

Blazee, 

THat’s what this site is all about. You can vent , share what scares you, share your experiences and hopefully bond with others that have been there or is going there soon! 

I agree that at your age, your fears are a little different than mine but 60 IS the new 30 and I don’t feel a day older than I did  when I was 30 except I no longer have to work so hard. I cannot imagine working right after my surgery but I do have an active life and am the event coordinator for a Cancer Foundation that usually get many hours of my day but . There are mny on here that have had an Ostomy for up to 50 years and each have lead a full life so we learn to adapt to whatever is thown at us! You will find your way as you go and the hospital will have an Ostomy to direct you in the very beginning. You will choose a medical supplier. I use Edgepark Medical800-321-0591. They will file to your insurance for you once you set up an account! They will not send you sample but because they are just the distributor of the supplies but you can Google Convetec, Hollister, and Coloplast. That is three of the big companies. Call them and ask for samples of their one piece and two piece pouch systems. Also ask each for barrier strip, lubricant deodorizer. The hospital should give you enough to get you to your first order arrives. The ones I were given were Convetec one piece and I had a lot of trouble with them and it drove me crazy until I tried the Coloplast one piece, IT was great. I them progressed to a two piece and love I think even more. Always wear the y strips for extra protection. You can order up to three months supplies at a time but don’t do. Order one month T a time until you find the combination of products that work for you! Don’t worry about the process of finding all this stuff! Your hospital will help you along .You May want to asknifnyour town has an Ostomy support group! Mine does but I have not gone. There is no reason that once you find the right products that you cannot donall the things you currently do, maybe even more since you have had so many problems. Always here to help!

Candy

Reply by Blazee, on Wed Oct 03, 2018 10:34 am

Candy, thank you again for the kind words and the reply. Unfortunately, I have no idea how things will work in my country since I am located in the EU we have things working quite differently most of the time but I do hope everything will work out since I want to live and I can't stress that enough, I WANT TO LIVE, I love my family and I am not ready to give up on life even if this illness got me close to giving up at certain points. It is not going to be easy with my illness even after the surgery it will haunt me probably for the rest of my life and of course my little boy may be also affected by it which I am terrified of, I do not know how I would handle that, I would probably hate myself forever if he would have to suffer like I had to/have to, but this is out of my control at this point and all I can do is pray to god that he will be healthy and free of my illness.

Now to another topic. Of course I went to the other side too where J pouchers talk to each other and I read through that forum too and what I noticed is that even after many complications and really hard times they had to go through, they are still very happy with their pouch while ostomates tend to hate/dislike the stoma and the hurdles that comes with it (leaks, sleepless nights, blockages etc.), please tell me there are people who are actually happy with their life as an ostomate? I need to know that not everyone feels bad being an ostomate, that life with the external pouch is not as bad as it seems from the overall picture I got from going through the forums for days. :( All I keep seeing is that everyone tries to get rid of the external pouch as soon as possible and I am here alone who thinks that my life could be better with an ileostomy instead of a J pouch, and feeling so so very stupid because of this.

I do understand that this is again a very tricky situation since if your life was really terrible because of your illness before the stoma (Chrons and UC is a terrible terrible illness and can be the worst hell for some if not most as far as I see and I so much wish all of you the very very best!), the issues coming with the stoma might seem heaven compared to it to you but my illness while it is really bad I do think I had it way better than those with UC or Crohn's. I had a constant urgency to go to the toilet unless I managed to take my mind off of it somehow (usually work or my lovely family helped me with that), 3-6+ BMs a day, constant fear of what if... and where the next bathroom is in case something would happen, stressed all the time because of this, having bloody stools a lot, sitting for hours on the toilet but still I think that UC and Chron's is worse, can be way worse because I managed to live a relatively normal life until a couple of months when the illness hit me hard. I am worried that to me it could be worse having a stoma than with the illness and all that comes with it, granted seeing what J pouchers go through sometimes they have it hard as well if not harder at times. Anyways I would really like to know if there are ostomates who are actually and honestly happy with how they can live with an ileostomy, and forgive me that I am pressuring to hear from those who have ileostomy but colostomy seems to me like a whole another world since you can irrigate, only empty 2-3 times, no watery stool etc. which can make it a little easier to bear with it, BUT I may be wrong here so again please forgive me if I am wrong I am writing based on what I saw in the last couple of days reading through the forum here and to me it seems colostomy might be easier to handle. That doesn't mean at all that I think its easy to live with a colostomy, not at all but compared to ileostomy it seems easier.

Huh I guess I had some venting to do this time, forgive me if I said something that in any way offends you but my feelings are all over the place right now and I barely see the light at the end of this dark tunnel at the moment and this is why I am asking the above questions. I need hope badly.

Another long post, you all might hate me by now but feels good to put everything I feel and think in writing. Thank you to those who read it and I do hope you understand that I have no intention to be rude but instead I am trying to express my feelings honestly and if I am wrong please please please correct me!

Reply by Puppyluv56, on Wed Oct 03, 2018 2:36 pm

I certainly understand! I too believe that a colostomy is easier to live with than any other type Ostomy. Irrigating is no picnic and I still have output during some days and it has never been hard stool but like yours very much watery. I am sure no one wakes up thinking I would love to be an Ostomate but many of us wake up thinking thank God for being a Ostomate because otherwise we may not be here at all! There is a point of acceptance an thenyou jump in to find how to live with it! Is it what I would have chosen..NO! Is it easy?..NO  It only calls for a lot more planning on our part but 99% of the people I know does not know I have a Colostomy! In my case, I make it a need to know basis because other than here, I keep my health very private. Even from family. They all live out of state so did not see me with no hair from Chemo or throwing up constantly or in bed recovering from surgery with drainage tubes hanging out and a Foley cathayer

Reply by Ewesful, on Wed Oct 03, 2018 4:03 pm

I have FAP and have a permanent ileo....it perfectly easy to dealwith and was not going to be a choice anyway so I decided right from the start to make the most of it. I did not have to deal with removalof the last few inches of the rectum becausetheyhad removed so many other organs and there was not and has not been any signs of issue there.  My surgeon does a special type of ileo...instead of a raw edge joined directly to the stoma, he cuts into the intestine and sews it to the skin-- almost like a u shape and he stated that that this is pretty foolproof in use  and care--- free of infections etc.

 

I am 5 yrs out now and sofar so good-- 

Reply by Blazee, on Wed Oct 03, 2018 4:22 pm

Ewesful, thank you for replying, but I cannot even imagine how that stoma looks like and why it is foolproof. Could you please explain? :)

Reply by Ewesful, on Wed Oct 03, 2018 8:41 pm

i know  the only difference is the cut end versus a  controlled cut 

the results would be the same I think except the controlled opening can exactly match the stoma skin slot.

also ask for the wrap that is used by up to date Dr's to prevent adhesions....They are no fun and cause a huge amount of complications.   I was one of the testers and can guarantee the benefits!

 

i will keep you in my prayers and wish you the very best!

Reply by Blazee, on Thu Oct 04, 2018 11:37 am

Could you give me more info about that wrap? I am interested in what that is, not sure how I am going to bring it up to the doctor so he does not think I am trying to tell him what to do since that would probably not sit well with any doctor but I will figure out a way. Thank you for the helpful information!

Reply by Ewesful, on Thu Oct 04, 2018 1:31 pm

Dr Kerington Smith at DHMC in Hanover NH was the surgeon.   I asked to test anything that would help them and this topic came up.  My surgery was 5 yrs ago .  It has been an amazing feeling to be free of issues.  My sister  did not use it and suffered several attachments (adhesions) a few years earlier ---I doubt it was even available and my father, grandmother, and great grandmother had adhesions and i remember their limitations and pain...  Of course through all that we did not even know of the existence of "FAP".

 

Why not research internal body wraps and or contact the DR and hospital  ---  All my surgery etc has been written up in documents so it is out there somewhere....

 

Dont hesitate to let me know if you need more imfo....

Reply by Blazee, on Thu Oct 04, 2018 2:32 pm

Ewesful, thank you very much I will try to read up on this topic, I am very afraid of adhesions and hernias so this is something that is very important for me! Thank you again for letting me know!

Reply by Jabid, on Sun Oct 07, 2018 6:37 pm

Hi Blazee,

I couldn't be more happier with my PERMANENT colostomy. I was diagnosed with colorectal cancer when I was barely 24 in 2012. I am 6 years past the surgery and nobody can really tell that I survived cancer or have a bag hanging from my abdomen. I admit, the first two years were difficult to get by but it is all about your mindset and acceptance. The sooner you acknowledge and accept your stoma, the better your life would be. 

I read both your short and long versions of the story and as I read along, I could see myself in your story except that I was not given any option. It was straight out an APR surgery for me. I had wished for a sphincter preserving surgery but the doctors threw the idea out of the window rightaway. 

I had struggled with health for a long time, with involuntary bleeding which at times almost killed me as my HB level dropped to as low as 4.2. But my local doctors misdiagonesd me, and the one single polyp I had turned into cancer and spread from rectum and upwards. 


I am now living a full life with the bag on, without any major complications. And oh, my stoma sleeps when I sleep. It is only active when I am awake so that lets me sleep on my tummy unconsciously. But since the surgery, I have got into a habit of sleeping on my side or back mostly. I guess with time you get used to everything. 


I wish you good health and good luck.


Best wishes from FIJI

Jabid 

Reply by Blazee, on Mon Oct 08, 2018 4:58 pm

Jabid thank you very much for the support. I am not sure my ostomy will be as easy to manage as yours since it is going to be an ileostomy and those have higher output but hopefully manageable! I will miss sleeping on my belly :(

Reply by Miniroll, on Tue Oct 16, 2018 5:58 pm

Hello

sorry I’m late to this post & don’t have time to address all the things you’ve mentioned but just to let you know that I had the final stage of surgery for my j pouch a few months ago & life is almost back to normal, except for a small stomach scar, some itching around the back passage if I wait too long before I go (can hold it in for hours if need be) & go to the toilet at least once or twice a night. 

Feel fantastic, so happy I made the decision & much better result than I expected or that I worried about for two whole years whilst trying to decide what to do! No idea why I worried so much! I didn’t have the same condition as you but have had my entire colon & rectum removed

hope it helps to get some alternative feedback 

good luck jenni 

Reply by Blazee, on Mon Oct 22, 2018 2:06 pm

Jenni thank you for replying to me! I would be interested in how many BMs you have on average per day and if you have to do special things after every BM (wet wipes, bidet etc.) to keep everything "okay"?

Reply by Miniroll, on Tue Oct 23, 2018 12:02 pm

No problem!

it depends what you eat, how often & how much! I only avoid soups& lots of raw salad now but generally can eat much more than when I had Illeostomy bag which was risky for blockages.

i would say I go 1-2 times at night & upto 8 in the day but I’m only 5 mths post reversal & they say it takes 2 years to settle down. I use baby wipes at home but not usually when out unless I’ve brought some with me. I use ILEX barrier cream to protect the area. Fragranced wipes really sting!! I did buy a portable bidet for after the op & maybe used it twice! The early days are rough but small baths with Epsom salts in does wonders! & it heals quickly but then I had UC & have no colon or rectum so my issues may be different?

hope this helps & 😉 

Reply by Blazee, on Wed Oct 24, 2018 3:38 pm

Thank you Jenni for the info! 8 during the day + 1-2 a night is a lot wow, even if you can hold it. Of course, my doc said if I go with it I should expect 6-7 BMs a day at minimum so I am not surprised. How can you go out for a longer period of time with that amount of BMs, I have no idea. Do you use that cream after every BM? Do you mean that you can eat more at once as opposed to with an ileostomy or more types of food? As far as I know, J pouch can have blockages too if you are not careful and both J pouch and ileostomy requires a diet, just different types maybe. I won't have a colon nor rectum either so I guess I would experience the same.

Reply by catboost19, on Wed May 29, 2019 2:45 am

If you had rectum removed how did they reopen back there

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