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Am I crazy for not wanting a J-Pouch?

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Posted 8/23/2017 9:41 PM (GMT 0)
So I'm definitely not at a point where I'm considering surgery yet but there is a high likelihood it will happen eventually (hopefully not till I'm old!). Regardless, I believe it is important to research your options and be fully informed so if that day comes (particularly in an emergency situation), I will be prepared and know what I want.

I'm under the impression that for someone who is young-ish and has UC, it will pretty much always be recommended that they go for a J pouch. After researching my options and talking to people who have ostomies and J pouches, I genuinely cannot imagine wanting a J pouch ever. I get that there is supposedly no urgency with a J pouch but I have no desire to have diarrhea 4-10 times a day for the rest of my life - that wouldn't be a whole lot different than my life now.

Am I crazy for wanting a permanent ileostomy *if* I have to have surgery? Is there something I'm missing?

I suppose I should add that I'm a pretty relaxed person when it comes to body image - I'm not too worried about how my stomach will look or finding a partner who will be okay with an ostomy bag (I'm of the opinion that if they had a problem with that, they aren't the right person for me anyway). I do worry about the smell/noises/dehydration, but not so much the body image aspect.

Additionally, I worry how well a J pouch would function for me since I have backwash ileitis...
Posted 8/23/2017 10:45 PM (GMT 0)
My understanding is that you go between 4 to 6 times a day...if I had to have surgery I would go for ileostomy because im not in my forties anymore and couldnt do with problems with it, like chronic pouchitis. At your age though I would go for the j pouch.
Posted 8/23/2017 11:57 PM (GMT 0)
I don't think you're crazy. There are people who opt for the ileo and live very well with it. I wanted a jpouch because I didn't want to buy supplies for the rest of my life, plus, having the bag, when it's full of either output or gas, is not the easiest thing to hide. Imagine a balloon under your shirt. I like that, the pouch, even if it's full, there's nothing to see. If you have inflammation in the terminal ileum, I would definitely be scared about a jpouchs function - but I'd ask a surgeon or GI about the implications and not assume the worst. The other thing to remember is that if you get a jpouch, and you ever end up reverting to a ileo, you lose the pouch, which means shorter distance. The ileo allows you to keep the most if you never opted for the pouch. The end ileo is also slower moving, the gas is less (mine was still ready to bust by the AM), the consistency is better... it's more predictable than a loop. Not sure about the function of an ileo after having a pouch removed. My jpouch, for me, is the easiest of all. I don't think about it much at all. I had a end, and a loop. The loop was the worst. Life with the ileo, isn't all rosey, there are some bad things, like emptying 4-8x a day, consistency is generally loose, the odors are pretty wicked. The supplies aren't just wafer and bags, it's rings, drops, wipes, odor sprays, water bottles to rinse the bag, there can be involuntary noises at inopportune moments, leaks, carrying supplies... it's all personal preference. Some people do not find the ileo to be inconvenient at all. If I had stuck with mine, I'd be just fine.
Posted 8/24/2017 12:35 AM (GMT 0)
There's pros and cons to each. An end-ileo is one surgery instead of 2-3 but requires an appliance and has the potential for leaks, blockages, and loud noises. A j-pouch is more surgeries, has no appliance, retains continence and removes urgency, and risks pouchitis in some. Certainly partial lists but the point is know your pros and cons to each and weigh the list based on your own priorities.
Posted 8/24/2017 3:43 AM (GMT 0)

notsosicklygirl said...
I don't think you're crazy. There are people who opt for the ileo and live very well with it. I wanted a jpouch because I didn't want to buy supplies for the rest of my life, plus, having the bag, when it's full of either output or gas, is not the easiest thing to hide. Imagine a balloon under your shirt. I like that, the pouch, even if it's full, there's nothing to see. If you have inflammation in the terminal ileum, I would definitely be scared about a jpouchs function - but I'd ask a surgeon or GI about the implications and not assume the worst. The other thing to remember is that if you get a jpouch, and you ever end up reverting to a ileo, you lose the pouch, which means shorter distance. The ileo allows you to keep the most if you never opted for the pouch. The end ileo is also slower moving, the gas is less (mine was still ready to bust by the AM), the consistency is better... it's more predictable than a loop. Not sure about the function of an ileo after having a pouch removed. My jpouch, for me, is the easiest of all. I don't think about it much at all. I had a end, and a loop. The loop was the worst. Life with the ileo, isn't all rosey, there are some bad things, like emptying 4-8x a day, consistency is generally loose, the odors are pretty wicked. The supplies aren't just wafer and bags, it's rings, drops, wipes, odor sprays, water bottles to rinse the bag, there can be involuntary noises at inopportune moments, leaks, carrying supplies... it's all personal preference. Some people do not find the ileo to be inconvenient at all. If I had stuck with mine, I'd be just fine.

Thanks, NSG. This is all really helpful insight.
Posted 8/24/2017 10:22 AM (GMT 0)
Having had an end ileo, and now being a j-poucher, I second NNSG's comments. There's nothing wrong with wanting an ileostomy rather than a j-pouch. I was really happy with my ileo, and if I ever had to go back to it I would be fine. But I definitely prefer having a j-pouch.

With the ileo, I didn't like the feeling or look of the bag being too full. It gets heavy and isn't easy to hide when it fills up. So I used to empty mine about 10 times a day. Those bathroom trips were quick and weren't a major inconvenience, and they weren't *essential* like in my UC days. If I needed to I could easily put it off for long periods, but it did mean having a pretty full bag stuck to my side. Compared to UC it was a minor inconvenience though. Once I was in a good routine with daily bag changes, and found a product combo I liked (particular bags, barrier rings, barrier spray, removal spray, skin wipes etc) it took about 10-15 minutes every morning (with my wife's help to get the barrier ring on) to change my bag. Compared to UC it was a huge liberation.

With the j-pouch, even when it's really full it's not uncomfortable in the way that wearing a full bag is. I now visit the bathroom 4 times a day, rather than 10. In the morning when I woke up with the ileo, I needed to get to the bathroom right away as the bag was always fully inflated (and I had a couple of accidents while sleeping, where the bag filled too much and came off - not the nicest way to be woken up!). When I wake up with the j-pouch, I am in no particular rush to empty it. My morning routine is pretty non-eventful and easy now. I sit on the toilet, empty, and get on with my day.

I was always thirsty (and craved salt) when I had an ileo, but don't have this with my j-pouch. I think that's probably because my ileal effluent (the liquid stool that would otherwise have firmed up in your colon) left my body right away into the stoma bag. Now, that liquid stool goes into my j-pouch, sits there for much longer, firms up a bit, and (I'm guessing) enough water gets absorbed for me to feel well hydrated.

Comparing a j-pouch bowel movement to diarrhea isn't really accurate. Diarrhea with a colon means something is wrong - you've got a virus, bacterial infection, a parasite, active IBD, etc. Even a watery j-pouch movement isn't really comparable to diarrhea: you are healthy, you don't have any urgency. Not all j-pouchers have very liquid stools. I've had my j-pouch for about 11 months now, and (especially if I take psyllium husk supplements) my stools are usually soft but otherwise quite well formed.

If you do end up needing surgery, you'll need to decide in advance whether you want your ileostomy to be permanent (in which case they will remove your rectum in its entirety, and there's no possibility of j-pouch surgery in the future). I thought I would like a j-pouch going into my first surgery, but was also open to trying out life with a stoma. I had a sub-total colectomy (removal of large intestine but leaving a large enough rectal stump to keep the j-pouch option open). Had I chosen to make the stoma permanent, I would have needed another surgery to remove the rectal stump (because of the cancer risk there) anyway.

If you haven't done this yet, it might be a good idea for you to meet some ostomates and j-pouchers in person. Talk to them about their experiences and lives post-UC. Before I did that, I leaned towards getting a stoma (for the same kind of reasons you mentioned): I was afraid a j-pouch would be like UC-lite, and thought the stoma seemed like a more definite way to get rid of urgency. I met a couple of j-pouchers for coffee, had a very open chat about the surgeries, their daily lives now (and the specifics of what bowel movements are like with a j-pouch). Meeting them really changed my perspective.

Post Edited (Albannach) : 8/24/2017 4:28:32 AM (GMT-6)

Posted 8/24/2017 11:52 AM (GMT 0)
Gas output with a stoma becomes much reduced after the first few months - something j-pouch patients never get a chance to experience. After the first year I wasn't even waking up with a bag full of gas in the morning anymore. But it doesn't happen overnight or in just 3 months. It takes about a year to 18 months for your bowels to 100% optimise themselves to the new setup; there is a lot of re-learning that the bowel nerves have to do and it's an automatic process which can't be hurried up.

If you're not a majorly gassy person pre-op, chances are you won't be one post-op. At least that was true of me and my ileostomy. The bag ballooning up underneath clothes was rarely a problem for me as well.

People who have j-pouches don't have ileos for long enough to completely adjust to them, physically or mentally, imo. My stoma nurse told me it took most people about a year to really get used to having a stoma. A brand new way of going to the toilet is a lot to get used to, when you're an adult. It took me a long time, although in my case that's not surprising.

Albannach said...
I met a couple of j-pouchers for coffee, had a very open chat about the surgeries, their daily lives now (and the specifics of what bowel movements are like with a j-pouch). Meeting them really changed my perspective.

Don't you think, though, that the people who put themselves forwards (or are put forwards by a nurse) to meet you are pre-selected in advance to be people with good outcomes? I met somebody with an ileostomy before I had my ileostomy surgery and she was happy with it. But one person literally doesn't mean anything. Two people literally don't mean anything. It wouldn't be that hard to find two people with bad outcomes. I'm not trying to put people off j-pouch surgery, but reassuring people that j-pouch surgery is gonna be unicorns and rainbows because you and one other person you know had a great outcome is a bit short-sighted. End of the day, all surgery is a risk - and that includes ileostomy surgery, too.

Post Edited (NiceCupOfTea) : 8/24/2017 6:02:57 AM (GMT-6)

Posted 8/24/2017 2:08 PM (GMT 0)

Albannach said...
If you do end up needing surgery, you'll need to decide in advance whether you want your ileostomy to be permanent (in which case they will remove your rectum in its entirety, and there's no possibility of j-pouch surgery in the future). I thought I would like a j-pouch going into my first surgery, but was also open to trying out life with a stoma. I had a sub-total colectomy (removal of large intestine but leaving a large enough rectal stump to keep the j-pouch option open). Had I chosen to make the stoma permanent, I would have needed another surgery to remove the rectal stump (because of the cancer risk there) anyway.

Thank you for your insight Albannach. This is something I was not 100% clear on - would I have to have a loop ileo if I went for the j pouch option? It sounds like you did an end ileo with a rectal stump to leave the j pouch option open - this is an attractive option to me. I was afraid that if I went with the "keep the j pouch option open" route, it would mean I have to have a temp/loop ileo - but it sounds like that is not the case?
Posted 8/24/2017 2:56 PM (GMT 0)
Surgeons can give you an end-ileo, and they can leave the rectal stump in place while you decide exactly what you want: keep the end-ileo or go j-pouch. Just two things to be aware of:

1.) You cannot wait indefinitely to decide if you want a j-pouch or not, as your sphincter muscles will weaken when not used, which would lead to incontinence when a j-pouch is later attached. The surgeon will tell you how long you have, maybe 6-months, likely not a year.

2.) While you have a rectal-stump, you still have active UC inflammation within that limited area, so that stump will bleed and produce mucus that you will pass via sitting on the toilet. Sometimes Canasa suppositories are used treat that, if it is bad enough to warrant them.

And actually the situation described above is what you get with surgery 1 out of 3, if you are determined to need 3 steps to a j-pouch. The dreaded loop-ileo would be step 2 in a 3-step surgery. The loop-ileo would be step 1 in a 2-steps toward a j-pouch.
Posted 8/24/2017 11:54 PM (GMT 0)

iPoop said...
1.) You cannot wait indefinitely to decide if you want a j-pouch or not, as your sphincter muscles will weaken when not used, which would lead to incontinence when a j-pouch is later attached. The surgeon will tell you how long you have, maybe 6-months, likely not a year.

Well, this one is news to me. It didn't happen to me, and I had an ileo for 2 and a half years. Is that 'cos I went back to using my own rectum rather than a j-pouch?

iPoop said...
2.) While you have a rectal-stump, you still have active UC inflammation within that limited area, so that stump will bleed and produce mucus that you will pass via sitting on the toilet. Sometimes Canasa suppositories are used treat that, if it is bad enough to warrant them.

I had this. Was told it was diversion colitis and that biopsies showed no signs of Crohn's. I really wonder now though ¬_¬
Posted 8/25/2017 1:13 AM (GMT 0)

NiceCupOfTea said...
Gas output with a stoma becomes much reduced after the first few months - something j-pouch patients never get a chance to experience. After the first year I wasn't even waking up with a bag full of gas in the morning anymore. But it doesn't happen overnight or in just 3 months. It takes about a year to 18 months for your bowels to 100% optimise themselves to the new setup; there is a lot of re-learning that the bowel nerves have to do and it's an automatic process which can't be hurried up.

If you're not a majorly gassy person pre-op, chances are you won't be one post-op. At least that was true of me and my ileostomy. The bag ballooning up underneath clothes was rarely a problem for me as well.

People who have j-pouches don't have ileos for long enough to completely adjust to them, physically or mentally, imo. My stoma nurse told me it took most people about a year to really get used to having a stoma. A brand new way of going to the toilet is a lot to get used to, when you're an adult. It took me a long time, although in my case that's not surprising.

This is also great insight - thank you, NCOT. The adjustment period is not something that is talked about enough, I think.
Posted 8/25/2017 4:38 AM (GMT 0)
I also didn't know there was any rush to get reconnected, but i didn't wait very long regardless. I used my butt muscles even when I had my end ileo since i had my rectum during that period and I had to pass stuff most mornings. My surgeon did tell me kegels can be helpful for strengthening, but I've never had a problem clenching. Maybe when I had an active flare and something terrible brewing, but that's all in the past.

With my ileo, I didn't have it long enough to really get through the adjustment, but I've always had gas issues. Even with my pouch I have more gas than most people i'd imagine. therein lies my problem. Ileo + gassy isn't the best combo. There are worse things in the world, like worrying about pooing yourself.
Posted 8/25/2017 4:52 AM (GMT 0)
That's very true, NSG.

I would say I was a less-than-averagely gassy person prior to UC. Basically never had gas unless I ate lactose. However, I'm pretty gassy now with UC (aren't most UC-ers?) so I don't know how that would impact things...
Posted 8/25/2017 12:30 PM (GMT 0)

noodlesnoodles said...
This is also great insight - thank you, NCOT. The adjustment period is not something that is talked about enough, I think.

No problem. Everyone is different, but I was still struggling with my ileo at the 3-month mark. It took me about a year just to find a setup that I was completely happy with and that didn't cause any leaks. For me, I liked the Salts bags but after about a year I made a switch to Coloplast Sensura, because the Salts wafers (the bit which sticks to your skin) were too prone to coming loose after 2-3 days of wear; I liked them as bags, but the Coloplast ones had more secure wafers. Also, it's worth nothing that the stoma doesn't settle into its final shape until a few months after surgery (it usually shrinks). So what works 1 week after surgery probably won't work 6 months later.

I was passing mucus and occasional blood, so maybe that's what kept my sphincter muscles active, I dunno. But I deffo wasn't incontinent after reversal; I had urgency but with rectal inflammation that's to be expected.

Also, I've just remembered a conversation with a woman in hospital who had had a temp ileo for Crohn's. This was in 2012, a few months before my first surgery, when colectomy surgery was looking likely for me. She reassured me she hated her ileo at first but by the end she was completely used to it. I don't know if it was a loop or end ileo, but she had it for about a year. I'm quite sure there are people who never adapt, but most people do, even if they don't consciously try: it's just human nature to get used to most things after a while.
Posted 8/25/2017 2:53 PM (GMT 0)
I think if you have no issues about body image it comes down to what NSSG said. You'll always need supplies, which is a full box, and you need to travel with spare supplies in case of a leak. If you go hiking, you better bring a extra set of bags, wafers, scissors, rags, wipes etc. with you. Same with grocery shopping, anything you do. Now it's not "needed" but if you have a leak during those moments, you better hope you have a spare set of supplies.

Also, remember you'll always have a wafer stuck to your body. Imagine a big bandaid stuck to your stomach at all times. I personally felt this while moving around, also the skin can get irritated and painful depending on how your skin reacts, if the wafer is cut wrong it too will cause excess output to touch your skin and burn.

Just a lot of things to consider.
Posted 8/25/2017 3:46 PM (GMT 0)

NiceCupOfTea said...
Gas output with a stoma becomes much reduced after the first few months - something j-pouch patients never get a chance to experience. After the first year I wasn't even waking up with a bag full of gas in the morning anymore. But it doesn't happen overnight or in just 3 months. It takes about a year to 18 months for your bowels to 100% optimise themselves to the new setup; there is a lot of re-learning that the bowel nerves have to do and it's an automatic process which can't be hurried up.

If you're not a majorly gassy person pre-op, chances are you won't be one post-op. At least that was true of me and my ileostomy. The bag ballooning up underneath clothes was rarely a problem for me as well.

People who have j-pouches don't have ileos for long enough to completely adjust to them, physically or mentally, imo. My stoma nurse told me it took most people about a year to really get used to having a stoma. A brand new way of going to the toilet is a lot to get used to, when you're an adult. It took me a long time, although in my case that's not surprising.

Albannach said...
I met a couple of j-pouchers for coffee, had a very open chat about the surgeries, their daily lives now (and the specifics of what bowel movements are like with a j-pouch). Meeting them really changed my perspective.

Don't you think, though, that the people who put themselves forwards (or are put forwards by a nurse) to meet you are pre-selected in advance to be people with good outcomes? I met somebody with an ileostomy before I had my ileostomy surgery and she was happy with it. But one person literally doesn't mean anything. Two people literally don't mean anything. It wouldn't be that hard to find two people with bad outcomes. I'm not trying to put people off j-pouch surgery, but reassuring people that j-pouch surgery is gonna be unicorns and rainbows because you and one other person you know had a great outcome is a bit short-sighted. End of the day, all surgery is a risk - and that includes ileostomy surgery, too.

I didn't actually meet either of those j-pouchers through a nurse. One was a friend who simply happened to have had the surgery. The other was someone I met through a mutual friend (who knew I was headed for UC surgery). Neither has had a perfect outcome (tough surgeries and recoveries, pouchitis issues) but both are doing really well overall and are glad for the surgery.

Seeing someone else's outcome doesn't have any bearing on how you will fare in surgery - agreed, and we probably don't need to have that conversation again in this thread. But their experiences are important. That's why we're posting here, to connect with other people who are going through similar stuff (or who have been through it and want to help others in some small way). I was glad I had the chance to talk to two others in person, who had been for the same surgery in the same hospital, to hear what it had been like for them. Their experiences of j-pouch life were also different, and they were honest enough about the challenges. Like I said, talking to them changed my perspective.
Posted 8/25/2017 7:10 PM (GMT 0)

Bull101 said...
I think if you have no issues about body image it comes down to what NSSG said. You'll always need supplies, which is a full box, and you need to travel with spare supplies in case of a leak. If you go hiking, you better bring a extra set of bags, wafers, scissors, rags, wipes etc. with you. Same with grocery shopping, anything you do. Now it's not "needed" but if you have a leak during those moments, you better hope you have a spare set of supplies.

Also, remember you'll always have a wafer stuck to your body. Imagine a big bandaid stuck to your stomach at all times. I personally felt this while moving around, also the skin can get irritated and painful depending on how your skin reacts, if the wafer is cut wrong it too will cause excess output to touch your skin and burn.

Just a lot of things to consider.

Two bags, two rubber seals, a couple of folded up kitchen towels, an adhesive remover, and a few wet wipes were all I needed, and I could keep them in a small pouch barely bigger than the size of a purse.

As for always having a wafer stuck to your body, you get used to that, just like you get used to glasses, hats, shoes, belts, etc. For the first few months I had the occasional desire to tear off the wafer and go 'free', but even those fleeting moments eventually disappeared entirely.

Albannach said...
Like I said, talking to them changed my perspective.

Maybe.

The way I see it is this: if you're the one in a million who has a bad experience, how does anyone else's good experience help you? If you'd gone on to have a bad experience, would you be praising those j-pouchers for "changing your perspective" right now?

Post Edited (NiceCupOfTea) : 8/25/2017 1:16:13 PM (GMT-6)

Posted 8/25/2017 8:00 PM (GMT 0)
It really is all perspective. Some people love being free of worry & the ileo gives them freedom, and enables them to focus on things that matter more than pooping. I notice a lot of people with children really couldn't care less about having an ileo, because there are other things in life of importance to them. My perspective of UC was pretty bad compared to some people's. I used to feel like I was unable to make plans, unable hold a job, be away from a toilet, I always felt like an accident was imminent. For some people, they don't worry about all that, and they just live their lives. Some people don't even mind pooping themselves once in a while, or wearing diapers daily. Some people have pooped in bowls in their car, or on the side of a road somewhere. I remember reading about people who fashioned porta-potties in the back of their vans and stuff... Imagine I had to drive a van because I might poop myself? That would be a nightmare to let my entire life be controlled by this illness. For me, I felt like the only way out was surgery - even an ileo would be much better than worrying about not being able to support myself or having accidents and wearing diapers. Attaining remission and waiting for the next bout was no consolation. Twisted perhaps, but that's my perspective.
Posted 8/25/2017 8:24 PM (GMT 0)
nssg - That's all entirely valid. You didn't want to carry on the way you are and I completely understand that. I wouldn't particularly want to wear diapers or drive around in a pooper van myself. Your own perspective/experience is valid to you, quite rightly.

What I don't understand and probably never will is why people set so much store by other people's experiences. Just 'cos two people have a j-pouch or an ileo doesn't mean that the two people will experience them exactly the same way. In the end the only thing which really matters is whether you like having a j-pouch/ileo or not, because you are the one who has to live with it - not anyone else.

I'm getting a bit solipsistic I suppose, but it's just how I see things.
Posted 8/25/2017 8:56 PM (GMT 0)
Why are their product reviews on sites like amazon or testimonials on websites? It's because we want to feel informed from those who have got it, and often reinforce that we are making a good decision. There's always anxieties and uncertainties in a decision, and it helps to hear it from other's perspective (and not just those who are making a living by selling us a service). We anticipate the same sorta experience as others have had, when we get it ourselves. Maybe it is not realistic to anticipate that, but it is definitely what we do.

Certainly, we know that only good testimonials are going to be listed, but that does not change our interest in reading them...

Certainly reviews on products on Amazon have caused me to buy something or conversely not buy something before. And yes there are those who fake reviews on major websites (post fake good reviews and delete bad reviews), so they are not always truthful.
Posted 8/25/2017 10:40 PM (GMT 0)
I think other people's experiences are comforting, especially when they are overwhelmingly positive, but yes, of course, you have to consider that one person's idea of what is positive, may not match your idea. It's of value if it helps to set your mind at ease, or helps you understand what to expect. On the other hand, it's important to come to terms with your own personal expectations. I am sure there are just some people who would never be happy after surgery & if that's you, don't do it... and no one can tell you if it's you. I read so many people's stories prior to having surgery, and I didn't feel like they were all that relevant to my experience for some reason. It was still good to see people explaining the steps, what works best for them, what was difficult, easy... It's interesting how when it's actually you, you understand things so differently.

Actually, those salts pouches were my favorite. I didn't LOVE their wafers, but the pouch was perfect, not too long & big, but not tiny, folded up. They don't sell them here in the US, but the rep sent me a bunch of samples. I didn't hate the wafer, you're right though, it didn't last long compared to some of the other brands. It was small and never felt quite as "stuck on". I used to wear hollister often, i loved their wafers, but the bag was WAY too long and didn't fold. If it wasn't one thing, it was another. I actually thought it was fun to try the products. I should have kept a log of everything i tried.
Posted 8/25/2017 11:42 PM (GMT 0)

iPoop said...
Why are their product reviews on sites like amazon or testimonials on websites? It's because we want to feel informed from those who have got it, and often reinforce that we are making a good decision.

Products are uniform (unless made by hand and what's made by hand nowadays?) People are not. Massive, massive difference.

I've had surgery and I literally don't know anybody whose experience of surgery is the same as mine. I don't know a single person whose experience of Crohn's is the same as mine. Ditto autism, depression, and my whole life from birth to now. There is nobody else I feel like, not one single other person under the sun.

Whereas 100 million iPhone 7s are all identical.

Edit: Maybe I am a solipsist after all. I feel like I have no relationship to other people in the slightest.
Posted 8/26/2017 12:56 AM (GMT 0)
I guess products are different. Something is either generally well-made or it's not. Restaurant reviews always get me, because people rate all different things. Sometimes service, sometimes food, sometimes delivery, sometimes atmosphere. It's almost irrelevant because there are too many variables. Also, reviews of services, it's the same. There's always someone who hates a doctor or a hairstylist, but you can't gain too much of an accurate idea of the experience you will have unless you do it yourself. Surgery is tough. I didn't really read reviews or meet with anyone. I sort of just jumped in. I didn't have much choice. It was go back on a high dose of pred, or hope for the best.
Posted 8/26/2017 1:14 AM (GMT 0)

NiceCupOfTea said...

Two bags, two rubber seals, a couple of folded up kitchen towels, an adhesive remover, and a few wet wipes were all I needed, and I could keep them in a small pouch barely bigger than the size of a purse.

As for always having a wafer stuck to your body, you get used to that, just like you get used to glasses, hats, shoes, belts, etc. For the first few months I had the occasional desire to tear off the wafer and go 'free', but even those fleet

Ironically, I already probably carry more supplies than that with me (I have a separate bag inside my purse and also a bag in my car and at work); extra pairs of underwear and pants, pads/diapers, calmoseptine, anti-spasmodic pills, heat wraps, hand sanitizer, those "one-drop" poo deodorizer things for the toilet, etc. My "emergency" bag comes everywhere with me.
Posted 8/26/2017 1:24 AM (GMT 0)
No definitely not crazy. The short version of my story is I could have cared less if I ever pooped again and I was so over rectal pain!

I had the benefit of having a temporary loop ostomy for my resection so I knew mostly what I was getting into.

A lot of what NCOT said is spot on for me. I was not eligble for jpouch after my diagnosis changed to Crohns but I could have left my rectum to have the small bowel directly reconnected like NCOT.

Now that I have adapted and have an appliance that works for me I never feel the flange and the adhesive doesn't bother me. My body has adjusted and I only empty 4-6 times in a 24 hour period, sleep through the night, and usually only have gas at night. I've never needed to change my appliance while hiking or at the store, but I'm a woman who almost always has my purse with me so I have a bag and wipes in there just in case.

There are many variables that make it a very individual decision that no other person can understand. I think your decision of what you want is directly related to your disease history, your lifestyle, your body image, your support system, your sex, your personal goals, family goals, and so on.
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