Posted by: Blaze

You said J pouchers also have to worry about other things, does that mean J pouchers also experience blockages just like ostomy patients?

According to this older study (interestingly enough, coauthored by my surgeon!), there is a risk of blockages still :  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1422415/

Quite a few variables influence that risk, and I'm not sure if the rates have come down since that study was published (I would hope they have!). 

Posted by: VeganOstomy

Posted by: Blaze

You said J pouchers also have to worry about other things, does that mean J pouchers also experience blockages just like ostomy patients?

According to this older study (interestingly enough, coauthored by my surgeon!), there is a risk of blockages still :  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1422415/

Quite a few variables influence that risk, and I'm not sure if the rates have come down since that study was published (I would hope they have!). 

I have to ask you for your honest opinion about something. You mentioned you had no option to go for a J pouch but given the chance to go for it knowing what you know today about both the J pouch and the illeostomy, would you go for the J pouch or stick with the illeostomy?

A question is going around my mind for a while now but what makes it more likely for a patient with illeostomy to have blockages? Is it more likely to happen with someone who has Chron's for example or it doesn't matter which illness you have (Chron's, UC, FAP etc.)?

Hi Blaze, From my own experience I have an ileostomy because of crohns and I have never had a blockage (yet) The question about j-pouch or my stoma!! the straight honest answer........... My stoma, I will add in here that I want you to see that I can only give you my experience of an ostomy so you can make a balanced decision. their are many folk who will have a happy experience of the j-pouch. I Had a complete fit when an ostomy was first talked about. "Threw the toys out of the pram" How the heck would i live with that. then when i calmed down reality hit me. Lying in bed under weight and with a butt so red and sore i couldn't, sit and getting blood!! well its not that great! Have a look at Erics journey and the interviews with different ostomates. You cant see me ( ye really don't want to lol) but just take a look at their videos.

Posted by: Blaze 

I have to ask you for your honest opinion about something. You mentioned you had no option to go for a J pouch but given the chance to go for it knowing what you know today about both the J pouch and the illeostomy, would you go for the J pouch or stick with the illeostomy?

I actually answered this question during one of my presentations! You can watch my response in this video at the 17:40 mark:

But the motivations for going with a reversal can really vary from person to person. 

If I was having a lot of difficulties with my ostomy, I might be more motivated to look at a reversal. Likewise, if my ostomy supplies were unaffordable, perhaps a j-pouch might be a better option. Too many variables to say one way or another which option is the best, but each patient must educate themselves of the risks and benefits of each, and then make a decision from there.

Posted by: Blaze 

A question is going around my mind for a while now but what makes it more likely for a patient with illeostomy to have blockages? Is it more likely to happen with someone who has Chron's for example or it doesn't matter which illness you have (Chron's, UC, FAP etc.)?

Blockages happen for many reasons, but a common reason why ileostomates are more at risk vs. someone with a colostomy is that the stoma and the portion of bowel leading up to it in an ileostomy tends to be narrower when compared to a colostomy. It's normal to see ileostomy stomas that measure 30mm and colostomy stomas that measure 50mm+.  Imagine passing the same volume of output through each hole and you'll realize why ileostomates are told to really chew up their food!

Thank you very much for your answer, I guess I will have to accept that it might become hard to live after surgery.

Hi Blaze, Their is no doubt things will change and adjusting will take time. But life will return to normal and will be better. While think out your options is good don,t over think the problems.

Yes I know I am overthinking the problems, I do tend to do that, it is just that I do not really see much to be positive about at the moment but thank you for being so kind to me!

Hi Blaze, Just want you to see if an ostomy is the road you go that its workable and very normal, most ostomates will tell you that some times you forget the bag is their!! All the emotions you are going through are normal. I am a born worrier and most of the things we spend time thinking might happen never do.

Well, it is certainly a very depressing time, and you cannot really imagine let alone know how life is going to be after surgery does not matter which way one goes and not knowing what it is going to live with myself after surgery is what makes things really bad. Researching things actually made things worse for me as I got more depressed and sad by each (possible) "issue" I have found honestly. I mean the possibility of impotence (we want more kids...), or bladder issues, blockages, hernias, not even being able to hold my son because I can't lift anything pretty much or go to shopping and watch my partner do everything because I can't lift... and so on these are things that scare me a lot and I do mean a lot, to a point where I wasn't sure if I want to do the surgery at all even though I know that is not an option. At the moment I honestly cannot imagine my life being happy after surgery but I do hope it will be, before my illness and all this I was a very happy person now I am just a shadow of myself and the diagnosis and the image of my future does not help me either. I am sorry for being so downed and depressing but this is how I feel right now.

Posted by: Blaze

Thank you very much for your answer, I guess I will have to accept that it might become hard to live after surgery.

And it might be easy.

There are risks to everything, including not having surgery. 

You're far more likely to meet someone who hasn't had problems after surgery than those who have, and most of the issues that do come up end up being temporary. 

Your surgeon will be the best person who can tell you whether your risk for complications are high or not. 

And while I do believe there is value in hearing about the experiences of others who have gone through one of these surgeries, you're probably getting a very skewed representation because most people who haven't had any trouble are living their life and likely won't be found online in support forums. 

I wrote an article about ostomy product overload, but I think information overload applies across the board 😉

@veganostomy I got the same conclusions on my own but it is good to hear it from others. Those who have no issues with the appliance or their illness anymore probably do not bother to come online to support forums so this is something I have to be aware of.

I agree I have to process so many information it seems really complicated to live with the bag and I do feel like living with the bag might make one always have to care about it and because of that you always think about bathrooms, or your illness and so on, it seems almost as if you cannot just live your life and not think about your issues because you are forced to focus on them due to wearing a bag. Then again this is how it seems at this point, you probably know better than I do.

In one of your videos you mentioned using the stealth belt pro I think and you said you like to wear your bag sideways but that makes you empty it more often? What are the benefits of the belt during the day? Do you use any accessories at home and if yes then why?

Posted by: Blaze

I do feel like living with the bag might make one always have to care about it and because of that you always think about bathrooms, or your illness and so on, it seems almost as if you cannot just live your life and not think about your issues because you are forced to focus on them due to wearing a bag.

One analogy I use, that I think many people can relate to is this : I have poor eyesight and rely on glasses to be able to do many things comfortably and safely. I don't like wearing them and sometimes they do bother me (they fog up in the winter and are uncomfortable sometimes), but they certainly don't keep me locked up at home and they allow me to enjoy life. 

Now, replace glasses with an ostomy bag and you'll understand more about how I feel about it. 

In one of your videos you mentioned using the stealth belt pro I think and you said you like to wear your bag sideways but that makes you empty it more often? What are the benefits of the belt during the day? Do you use any accessories at home and if yes then why?

I say that you need to empty more often simply because any accessory like that tends to either limit the capacity of your bag or creates some pressure on the bag. That's not to say that I'm in the bathroom all the time when I wear this belt - some of my most active days are spent wearing it. 

This article may help to answer other questions about it :  https://www.veganostomy.ca/horizontal-ostomy-bag/

If I'm not wearing a support belt then I almost always wear a pouch cover since my bags are clear. 

Thank you very much for the detailed answer. It is a bit overwhelming but I will try to process it.

Lots of folk have to use some form of aid during their life time, From glasses, prosthetic limbs, wheelchairs. A girl I know who is an ostomate her husband is a diabetic. she always says she has less trouble managing her ostomy than he does managing his diabetes. My own wife is a type one diabetic since 12 years old. when her blood sugar goes to low its no joke and boy it knocks her side ways for hours afterwards. A guy I worked with lost a leg in an accident, he took an ulcer on the stump and was of work for months as he could not wear the limb. While the bag takes getting used to its no less of an issue than a lot of life changing aids.

I had the exact same thought process, some have it way worse and the bag might seem to be nothing compared to it. It is really hard to accept it but it is manageable. So many people around me keep asking me if I made my decision yet or not and all of them seem to think J pouch is what I am going to go with but I am not sure still, in fact, I am leaning more towards an ostomy. J pouch seems to have so many issues which you cannot handle by yourself while with an ostomy bag you can manage the issues without surgery most of the time. This is not an easy decision, not at all :)

I have to be honest I am scared to death about the pain after surgery, how bad is the pain after they remove your colon and rectum? Doc said he will try to do it laparoscopically but it might be open. Either way, the pain sounds horrible.

Hi Blaze, No surgery of any kind will be without some level of discomfort. Every effort to ease pain can and will be done. I was given morphine which really helped a lot.

Hi, Blaze!

I rarely post, and I don't read here as often as I used to, but I happened to be reading today and saw your post. I'm also a programmer, so I sit all day too.

I was diagnosed with colon cancer in September of 2016. I had one very small cancerous spot, but my entire colon was inflamed, and the doctors said it was just more cancer waiting to happen. I had a colectomy November 11 that year and received an ileostomy. My stoma's name is Pumbaa (like the warthog in Disney's The Lion King movie), because stomas can fart, lol. I kept my rectum, so I can't speak to having it removed; I'm hoping not to have to. My surgeon made me promise to get a proctoscopy every year if I wanted to keep it, so I've been doing that. It's really easy, since there's no prep, because nothing is connected!

I had my surgery on a Friday, took four full weeks off from work, went to my follow up appointment the next Monday, went back to work half days (pre-arranged) the rest of that week, and then full time from then on.

At first my doctor said I wouldn't be a candidate for a j-pouch, but at my follow up he asked about it. By then I'd researched it, and, due to the possibility of being incontinent, I chose not to do it. No diapers for me!

I had a lot more urgency to find a bathroom before my surgery than I do with my pouch. We travel to Walt Disney World for 10 days every year. We've flown once and driven once since my surgery, and I had no problem with either. We also take shorter trips by car, and my husband and I recently took a 5 hour train trip to and from Chicago with no problems.

I do experience leaks more often than I'd like, but I usually catch them before they escape the wafer, so I rarely have soiled clothes. I keep extra clothes at work and in my car, and I've used the ones at work a couple of times. 

As far as anal discharge goes, I had it for a while after the surgery, and I have it for a few days after I'm scoped, but otherwise very rarely. It doesn't ever just come sliding out; it's like having a tiny little BM, and mostly I don't even see anything in the toilet, I just see something when I wipe afterwards. 

I have to empty at night less than half the time. I've always slept on my side, so that didn't change. I've found that Pumbaa like to have a pillow too when I sleep on my left side, so I fold up a hand towel and rest Pumbaa's side on it. (Pumbaa is on my right side, and I have no issues sleeping on my right side.) Frankly, I fall asleep faster and sleep better now than I had in years.

Good luck with your decision!

I forgot to say that (knock on wood), I've never had a blockage. For the first month I was pretty limited in my diet, but after that (with the surgeon's OK), I've been able to eat whatever I want, including salads, which he initially said would be off limits forever. 

I do drink a lot of water to stay hydrated, and, due to this and the need to always have supplies and extra clothes just in case of a leak, I rent an ECV (scooter) at WDW. That way no one has to carry all of my stuff; I just put it in the basket. For other trips, that is not necessary.

I did end up with a peristomal hernia, so I wear a hernia belt except at night. Some guys in my local ostomy support group that have urostomies recommend wearing a hernia belt to prevent getting a hernia. The belts have a hole in them for your pouch, so they are measured based on your pouch, so you'd have to wait until your stoma settles in and you find a pouch that fits you well. I have not needed to have the hernia repaired; it doesn't give me any problems, and repair is not generally recommended unless it does.