J-Pouch. To have OR not to have

BenB posted:

Hope you all had a great Christmas

I'm back with another question

This one is for the blokes regarding a catherer. The idea of something going up my penis worries me more than the actually operation. Is it done when you're awake or knocked out by the anesthetic? & if it's done when you're awake, does it hurt either going in or out? Gives me goose bumps just thinking about it 

 

I thought the same.  It was going to be terrible coming out.  Nope.  Never had one before.  Didn't know what to expect.  Just a slight burn and that was it.   Had to have it put back in while awake.  But I think it all depends on who is doing it.  Experienced or not experienced.  I think the woman who did it was experienced.  No pain either way. 

I also think that the longer it's in the more I  may cause problems.  Mine was in for five days.  

Just my experience.   You'll have other things to worry about.  This is minor.  I was actually glad to have it.  Can't get up anyways. 

Richard 

I agree, never had a catheter before, they inserted it while I was out cold (I had the choice of being awake... but who would choose that??)  

id heard it hurt when they remove it, but actually barely felt anything.  maybe a light scratching sensation that was over in 1.5 to 2 secs.  Ive heard it depends on how much lube they use and how long the tube is in for.  My tube was in for the max (3 days).  I was reluctant to have it removed because I didn't want to get out of bed for a pee (I was soo weak). 

In short, the catheter is the least of your worries.  Even if it did hurt, its only for a very short time (seconds), but in many experiences it doesn't hurt.

I like to remind myself with this sort of stuff, that some people actually get a kick out of it and do it for fun!  Not my bag, but kinda puts in in perspective.   Same with enemas and some of the other weird stuff we sometimes have to go through

Your smart to do your surgery while your health is "good" and not on death's door, that's for sure.

Having said that, I have FAP/GS which is different than UC/Chron's........but just the same, I have a J Pouch. I love it and have had ZERO issues with it since 2005 when I had surgery. It took some adjustment and over time things have only improved. Early on I kept a "diary" of food that I ate that gave me issues, I stayed away from problematic foods (for me) and over time reintroduced them, again. Some are still problematic, some aren't. There are some foods that I simply won't eat because, honestly, I'm just not going there because they are hard to digest to begin with, then complicate that with no duodenum (me) and multiple abdominal surgeries and no colon, well it just isn't worth it to me.

If for some reason, my j pouch didn't work out; I'd be fine with a perm ostomy. It sure beats the alternative!

I opted to go for the J Pouch for 2 reasons. First is because I owed it to myself to give it a shot, if it didn't work out I could always goto a Perm Ostomy. Secondly because I wanted to try and be as "normal" as possible if I had the chance. So far it's worked out most excellent and I've never for an instant regretted my decision. You can always get an ostomy IF your j pouch fails, but, if you start out with an ostomy and try to go the other way, from what I've seen that doesn't work.

Whatever your choice or decision, best of luck!

Chuckus posted:

Your smart to do your surgery while your health is "good" and not on death's door, that's for sure.

Having said that, I have FAP/GS which is different than UC/Chron's........but just the same, I have a J Pouch. I love it and have had ZERO issues with it since 2005 when I had surgery. It took some adjustment and over time things have only improved. Early on I kept a "diary" of food that I ate that gave me issues, I stayed away from problematic foods (for me) and over time reintroduced them, again. Some are still problematic, some aren't. There are some foods that I simply won't eat because, honestly, I'm just not going there because they are hard to digest to begin with, then complicate that with no duodenum (me) and multiple abdominal surgeries and no colon, well it just isn't worth it to me.

If for some reason, my j pouch didn't work out; I'd be fine with a perm ostomy. It sure beats the alternative!

I opted to go for the J Pouch for 2 reasons. First is because I owed it to myself to give it a shot, if it didn't work out I could always goto a Perm Ostomy. Secondly because I wanted to try and be as "normal" as possible if I had the chance. So far it's worked out most excellent and I've never for an instant regretted my decision. You can always get an ostomy IF your j pouch fails, but, if you start out with an ostomy and try to go the other way, from what I've seen that doesn't work.

Whatever your choice or decision, best of luck!

Very good reply. 

I went into this thinking the same.  I agree with everything you said.  Of course we have different problems to start off with.  But I agree with you on how to go about it. 

Be as healthy and strong at the start.  You never know what will happen.  And be dedicated afterwards.  I was so messed up I couldn't get myself dedicated afterwards.  I was healthy going in but absolutely wiped out afterwards.  It took everything in the strength and stamina part out of me.  So going in healthy is important. 

If all goes well you will be healthy and strong enough to get by. 

I too wish you the best. 

Richard. 

I agree with CHUCKUS and MYSTICOBRA on being healthy when you get the surgery.  I took a whole month off of work before my surgery so I could just rest, eat well, gain some weight, and exercise a little.  

It made a big difference on my recovery process. My weight was about average when I had the surgery.  

But I lost some weight during the recovery. So, if I didn't gain some weight prior to the surgery, I would have been incredibly thin and weak.

Being strong before the surgery made a big difference.

I've been in pain from them removing a catheter, but mostly no pain, and it's a quick two seconds.  The only time I had pain is a new doctor just pulled it out.  But, I think they can somehow relieve pressure or make it smaller or something?  Anyway, on most occasions, not a big deal!

The catheter is held in place by a little balloon inside the bladder, protruding from the wall of the tube. It must be fully deflated before the catheter is removed.

Weird, i couldn't even feel the catheter when in, and actually liked it cos i could keep my fluid high and not struggle to the loo every 30 mins!  Removing it was a very short sensation of like 2 secs. I wouldn't even call discomfort, just a sensation.  I guess everyone is different, but the trick is plenty of lube and to relax.  Perhaps there are different size catheter tubes and maybe the people that had pain had one that was too large? Maybe skill of the nurse is a factor too?.  I think asking for pain meds is overkill tbh, unless you have a water infection or had issues before.  Catheter coming out is the least of your worries, don't give it a second thought.

Hello ladies and gents, received some great news today. The histologist (the person who looks at the biopsies) couldn't see any signs of Crohns Disease, is confident I have UC. Was also told that they might be able to do my surgery in 2-steps instead of 3. I still have not decided if I want the J-pouch or not but I'm over the moon that it is an option.

One thing that I forgot to ask when I was on the phone to my GI was if they do the 2-step, how do they make the ileostomy? By that I mean they normally have a small bit of bowel poking through the abdominal wall, if they make the end of the small bowel into a reservoir what do they do then?

Pain in the ask when you think of questions after you have finished speaking to the person, always happens 

If you go for the pouch the give you a temporary ileo.  Which I believe does not involve the end where your pouch is.  They cut higher on the intestine and poke it through.  Now the temporary ileostomy are a bugger to handle.  At least for me.  I never had control over it.  Such as leaking and stuff.  I have an end now and it's no problem compared to the temp.   

Someone could clarify what I said.  I am by no means an expert in this.  Even though I had one.  I was going through so much I didn't pay attention and didn't care. 

Richard. 

It's a loop ileostomy. It comes out of the side of the small bowel, which also continues on to the pouch.

Thanks Scott. 

ah that's right, I had completely forgot about the loop ileostomy, makes sense now.

I have been looking around on lot, on different sites, blogs, forums etc..
The average amount of times people seem to go to the toilet with a J-pouch is around 6, does that seem about right? To me that still sounds like a lot

Obviously everyone will have a different result but that seems about the average

6 times per day is supposedly the ideal target which Surgeons consider to be good/normal. However, I tend have 3 or 4 BMs per day, sometimes 2 or 3 but never less than 2 and rarely more than 5.

Once completely recovered, you wont even notice when or how often you use the toilet, I don't even think about it, unless I've had an accident, leakage or I decide to make a note due to a forum question like this; My toilet use with the J pouch is nothing compared to use during a UC flare up.

Not counting peeing, I can go for a few hours between toilet use; today, I've only had 1 BM and it's 4pm; my last BM was yesterday at around 11pm.

Whats the urgency like? That's what concerns me the most. If I'm in a queue or something like that and there's people in front of me, no where to go etc.. having an "accident" in public. The idea alone is terrible.

3-4 times a day sounds really good, if I could get a similar result id be happy but I guess only time will tell. I've still got to have the operation yet 

i can hold for a long time... it just get progressively more uncomfortable.. its like a cramping that gets more and more severe. 

Depending on the day, how much I ate etc, I can hold for hours if required..... I wouldn't choose too though because there is a discomfort level involved

hth

I am in the same ballpark as Strange, as far as frequency and I am 6 mos. post takedown.  I don't get urgency so much as when I have to go, I feel pressure and an uncomfortable feeling, but this is only if I can't  get to the bathroom in a reasonable amount of time, mostly because I am on the road with my job.  I believe the last time I went was last night at around 10:00 and it is around 1:30 today and just beginning to feel the pouch is ready to empty.  I was especially careful in the beginning and followed low residue diet, kept hydrated, and then slowly introduced more foods.  I am now beginning to introduce more fresh fruit into my diet as well, pears, melon, and berries.  Though, I have had berries for a little while, mostly with crepes!

I have no need to hold it; when I need to go, I go in my own time just  like I did prior to the removal of my colon; no cramps or discomfort either.

^^ I also find that if I hold the cramping too long, when I do get to go to the bathroom, I need to pay another visit 5 mins later.. its like I back up and cant fully empty, and it takes time for gravity to do its bit

That sounds great. I understand it's not ideal to hold off going to toilet but obviously if you're in the situation where you have no choice, it's great to know that you could hold it if you needed too

BenB posted:

That sounds great. I understand it's not ideal to hold off going to toilet but obviously if you're in the situation where you have no choice, it's great to know that you could hold it if you needed too

There has never been a time when I've had to desperately hold off.

From my own experience;  I feel the sensation to use the toilet and I can go in my own time, just like I did prior to the removal of my colon.

I agree with most of everybody's comments.  After the complete surgery I still might go to the bathroom a lot, but its not the excruciating, unbearable, life draining, soul crushing, kind of painful dumps that I took when I had Ulcerative Colitis.  In no way is it a normal kind of dump, but its for the most part a non-painful dump.

Benb,

If you think having 6 or more bowel movements a day seems like too much, think of it in another way. For me, it is about the same number that I use the toilet to urinate. I empty both bladder and pouch in the same visit. I can delay a bowel movement for hours, and that has been true since weeks post op.

It is easy to get hung up on the number of bowel movements per day.

Jan

Just an update

It's happening. My first surgery is next week, Monday the 10th. I'm so excited. Going to spend a few months healing, see how I get on with the Ileostomy and then decide what to do about a J-pouch

Collected my bag of goodies which need to be taken for the three days before the operation.

I'm getting there, slowly but surely 

This will be a great test for you having the ileostomy for months.  You'll LOVE not having the pains any more from colitis. I highly recommend using the hospital resources during your recovery especially if you have some problems with the ileostomy bag.  It takes a few weeks for your body to get used to the bag attached to you so USE the specialty nurses at the hospital to find a great comfortable fit.  There are supply companies that will give you free samples and take them!  They are different and try them all to get one that works for you.

I have had my Jpouch for 2 years and have had few issues but I am so glad I did the Jpouch.  

Please keep us posted on your recovery.

This site was such a blessing to find because I too had sooooo many questions.

GOOD LUCK BUDDY

Good luck! 

Well I'm back home after 3 days (step 1 ileostomy), everthing went perfectly other than some trapped air in my shoulder which is causing abit of pain.

Everyone is suprised I'm out so quick but I did my research, I knew the ins and outs of what was going to happen and it's nothing. Have adjusted to it with although it has been 3 threes I'm very comfortable and confident at looking after and changing my bag.

Just going to take it easy now and give everything plenty of time to heal

Thank you everyone

BenB, remember to use the measuring scale that comes with your supplies and measure your stoma in a week, and keep measuring every week until it settles into the size it wants. Your stoma will shrink as your swelling goes down and it will be important to adjust the size of your wafer opening so the hole remains snug around your stoma. I didn't get the best professional care or lessons after takedown and didn't know about measuring, and I developed bad erosion as soon as output touched the skin around my stoma. Good luck to you!

Winterberry posted:

BenB, remember to use the measuring scale that comes with your supplies and measure your stoma in a week, and keep measuring every week until it settles into the size it wants. Your stoma will shrink as your swelling goes down and it will be important to adjust the size of your wafer opening so the hole remains snug around your stoma. I didn't get the best professional care or lessons after takedown and didn't know about measuring, and I developed bad erosion as soon as output touched the skin around my stoma. Good luck to you!

Fortunately I was told about that, have already changed the size twice so far.
Hardest thing I have found is coughing/ sneezing/ clear your nose etc.. all comes from the stomach. I'm sure that will pass in time though

Sending cyberhugs and luck! 

Recovery is going good, bruising is almost gone, the glue on top of the keyhole holes is almost off and stoma is going down in size. No aches or pains part from the small blockage I had. Was destroying a bag of Doritos without drinking much liquid. It's one of those times where you think "ill just have a few" then the packet is completely empty

I'm going to be talking to the surgeon about a J-pouch but if for whatever reason the internal pouch didn't work, I'd be perfectly fine with a stoma. It's a piece of cake to change/look after.

Thanks
Ben

Good to hear you're doing well.  I also feel I could live perfectly with a stoma, if things don't work out with my j-pouch.

Lots of responses Ben, congrats.  This community really helps at all phases of the illness.

Yup, my J Pouch is up and running very well.  I have my life back.  Do it if you can

Coming up to 10 weeks since I had my first surgery, seems like a hell of a lot longer. I'm doing every well, no aches or pains, eating what I want. Going to make some fajitas tonight. It's nice to be able to eat without worrying

Got a meeting with my surgeon next week to discuss the next step. Everything has healed nicely, I'm fit and healthy and ready to go, hopefully he agrees 

My pouch has changed my life. Obviously everyone is different, and only you can decide, but it's worth remembering that a lot of us come on here to the forums to seek help because we have problems, but there are many, many more who don't have any problems and live very happily with their pouches! (I would count myself one of those lucky ones.) Living with a j-pouch has been indescribably better than living with bowel disease. Personally I didn't enjoy having a stoma, but lots of people live with them.

Cdub posted:

My pouch has changed my life. Obviously everyone is different, and only you can decide, but it's worth remembering that a lot of us come on here to the forums to seek help because we have problems, but there are many, many more who don't have any problems and live very happily with their pouches! (I would count myself one of those lucky ones.) Living with a j-pouch has been indescribably better than living with bowel disease. Personally I didn't enjoy having a stoma, but lots of people live with them.

It's good to see some come in and praise the pouch. More often not .  I wish more would come in with good experiences with it.  

Good to hear. 

Richard 

Mysticobra posted:

It's good to see some come in and praise the pouch. More often not .  I wish more would come in with good experiences with it.  

Good to hear. 

Richard 

Praise the J pouch or praise the pouch as in, a Stoma and external pouch.

 If the latter, I would assume because deep down, regardless of quality of life acheived with a Stoma and external pouch, no one relishes the thought of an external pouch affixed to their abdomen to collect waste.

strange posted:

Mysticobra posted:

It's good to see some come in and praise the pouch. More often not .  I wish more would come in with good experiences with it.  

Good to hear. 

Richard 

Praise the J pouch or praise the pouch as in, a Stoma and external pouch.

 If the latter, I would assume because deep down, regardless of quality of life acheived with a Stoma and external pouch, no one relishes the thought of an external pouch affixed to their abdomen to collect waste.

Internal. 

I don't have an internal pouch anymore. But it's nice to hear when people respond that have one that works! 

No one relishes the external(stoma).  I like mine. Relish is not the right word for me to use.  It is definitely better than an internal.  Because the quality of my life is 100 percent better  than an internal pouch. Which was pure misery.  Stoma is no problem at all.  

If it works. And you get your health back. Ya can't knock it. 

Richard. 

Mysticobra posted:

strange posted:

Mysticobra posted:

It's good to see some come in and praise the pouch. More often not .  I wish more would come in with good experiences with it.  

Good to hear. 

Richard 

Praise the J pouch or praise the pouch as in, a Stoma and external pouch.

 If the latter, I would assume because deep down, regardless of quality of life acheived with a Stoma and external pouch, no one relishes the thought of an external pouch affixed to their abdomen to collect waste.

Internal. 

I don't have an internal pouch anymore. But it's nice to hear when people respond that have one that works! 

No one relishes the external(stoma).  I like mine. Relish is not the right word for me to use.  It is definitely better than an internal.  Because the quality of my life is 100 percent better  than an internal pouch. Which was pure misery.  Stoma is no problem at all.  

If it works. And you get your health back. Ya can't knock it. 

Richard. 

Lambiepie posted:

Mysticobra posted:

strange posted:

Mysticobra posted:

It's good to see some come in and praise the pouch. More often not .  I wish more would come in with good experiences with it.  

Good to hear.

Richard

Praise the J pouch or praise the pouch as in, a Stoma and external pouch.

If the latter, I would assume because deep down, regardless of quality of life acheived with a Stoma and external pouch, no one relishes the thought of an external pouch affixed to their abdomen to collect waste.

Internal.

I don't have an internal pouch anymore. But it's nice to hear when people respond that have one that works!

No one relishes the external(stoma).  I like mine. Relish is not the right word for me to use.  It is definitely better than an internal.  Because the quality of my life is 100 percent better  than an internal pouch. Which was pure misery.  Stoma is no problem at all.

If it works. And you get your health back. Ya can't knock it.

Richard.

It does appear that something is being lost in translation here.

My J pouch is working as it should and has done since takedown; on average, 3-4 BM per day, sometimes 5, can eat what I want and when, always have done, no butt burn, leakage or accidents during my sleep.

My Stoma worked as it should for many years without issues, I was also medication free, well, other than Imodium and I also lead an unrestricted lifestyle.

Let's not kid ourselves, no one would realistically prefer a Stoma or J pouch over a desease free functioning bowel.

Those who choose to remain with the Stoma or those who have no choice, they too would prefer a life without it but unfortutely our illness dictates otherwise

When my colon was removed, once I recovered, I had an exceptional quality of life when compare to the misery of UC and the flare ups, which took months to recover from.

I also endured many personal experiences, I would never have tolerated if I didn't have a Stoma.

After the initial promises of reversal surgery, I was forced to accept my Stoma and told I was not suitable for reversal surgery, back then, the term J pouch was never mentioned.

I absolutely hated my Stoma and use of the colostomy bag, regardless of all its benefits and I hope I never have to experience such a situation ever again;  

if there's ever a time when I must revert to a permanent ileostomy, even with a superior quality of life, I'd still long for a life without it.