Choosing between J-Pouch and End Ileostomy: Seeking Advice

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 careful 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 the 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

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 than I did, had to endure way more than I had to/will have to, and still have to endure a lot more than I do. 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 it's 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, has 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, no 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 I will be able to use, etc.

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

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 are 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 gets many hours of my day. There are many on here that have had an Ostomy for up to 50 years and each has led a full life, so we learn to adapt to whatever is thrown at us! You will find your way as you go and the hospital will have an Ostomy nurse to direct you in the very beginning. You will choose a medical supplier. I use Edgepark Medical 800-321-0591. They will file to your insurance for you once you set up an account! They will not send you samples because they are just the distributor of the supplies, but you can Google Convetec, Hollister, and Coloplast. Those are three of the big companies. Call them and ask for samples of their one-piece and two-piece pouch systems. Also, ask each for a barrier strip and lubricant deodorizer. The hospital should give you enough to get you to your first order arrives. The ones I was 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 then progressed to a two-piece and love it 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 it. Order one month at 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 ask if your 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 do all the things you currently do, maybe even more since you have had so many problems. Always here to help!

Candy

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 also be 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. 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 come 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 (Crohn's 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 Crohn'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 it's 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 it 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!

I certainly understand! I too believe that a colostomy is easier to live with than any other type of 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 an ostomate," because otherwise we may not be here at all! There is a point of acceptance and then you 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 do 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 catheter.

I have FAP and have a permanent ileo....it's perfectly easy to deal with 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 removal of the last few inches of the rectum because they had removed so many other organs, and there 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. He stated that this is pretty foolproof in use and care--- free of infections, etc.

I am 5 years out now and so far so good--

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

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 doctors 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!

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!

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 years 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. 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 doctor and hospital? All my surgery, etc., has been written up in documents, so it is out there somewhere....

Don't hesitate to let me know if you need more info....

Successful, 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!

Hi Blazee,

I couldn't be 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 right away.

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 misdiagnosed 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 gotten 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

Jabid, thank you very much for the support. I am not sure if 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 :(

Hello

Sorry I'm late to this post. I 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 and some itching around the back passage if I wait too long before I go (can hold it in for hours if need be). I 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 I have had my entire colon and rectum removed.

Hope it helps to get some alternative feedback.

Good luck, Jenni.

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"?

No problem!

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

I would say I go 1-2 times at night and up to 8 times in the day, but I'm only 5 months post-reversal, and 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 operation, maybe used it twice! The early days are rough, but small baths with Epsom salts in them do wonders! It heals quickly, but then I had UC and have no colon or rectum, so my issues may be different?

Hope this helps &

Thank you, Jenni, for the info! Eight during the day + 1-2 at 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 a 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, a J pouch can have blockages too if you are not careful, and both a J pouch and an ileostomy require a diet, just different types maybe. I won't have a colon nor rectum either, so I guess I would experience the same.

If you had your rectum removed, how did they reopen back there?