Jpouch vs bag struggle

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NeedUChelp
Regular Member


Date Joined Oct 2017
Total Posts : 46
   Posted 11/8/2017 4:59 PM (GMT -7)   
As some of you know with my recent posts, surgery is the next step for me in this bad flare of mine with no response to any other treatments and no access to a majority of medication because it will conflict with my auto immune hep. I've basically been pointed in the direction of a jpouch automatically, but some connections I've made online with fellow UC/Crohnies have shared the whole "the bag isn't even that bad, I am sticking with it for now" POV. With my huge fears of surgery, I could see myself sticking with the bag to avoid more surgeries/ recovery time as long as I was happy with myself accepting the bag as my new friend on my body(with therapy and some self love, I could definitely see it not being the end of the world!). My question is, say I opt for Jpouch- (mine would be 3-step) and I find my life enjoyable enough after the 1st step with my end ileostomy, Am I able to just stop there? Or if I want to decide on making it permanent, does it require another surgery? This girl online told me she was just "stopping there" but the whole "temporary" word throws me off? Thanks in advance for feedback and answers smile

Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 619
   Posted 11/8/2017 5:06 PM (GMT -7)   
As far as I understand is the type of ileostomy and surgery they do to your small intestine. A temp loop allows for a small connection and the loop is different (the stoma part) so that it’s easy to reverse. The permanent loop (stoma part) is turtle-necked, or so my doc explained to me. A permanent loop is created differently and functions a litttle better long term than a temp loop.

personally, I didn’t like the bag. I’m only only week post reversal surgery and although I’m having a rough time with diarrhea and urgency with my new pouch, I’m still glad thatI followed through with the reversal. The only thing I’m afraid of now is Pouchitis/inflammation of the pouch down the road. Wouldn’t want to go back to the bag but I would if ineeded to.

Hope this helps
Moderate to severe colitis, diagnosed in 2003, hospitalization in 2006, Feb 2017, July 2017 for colitis related complications

Step 1 & 2- ilestomy and j pouch creation surgery on Aug 25
Obstruction - hospitalized early Sept
Step 3 - Nov 2

Medications: Zantac, oxycodine, Tylenol, heparin

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10015
   Posted 11/8/2017 6:45 PM (GMT -7)   
With a 3-step procedure, an end ileostomy would be the first step. You can indeed stop there if you are happy with that. An end ileo can be either temporary or permament, whereas a loop ileo is nearly always temporary. If you are thinking of making your end ileo permanent, then make sure it is situated as well as possible. See a stoma nurse a few days before the operation to measure the best position, taking into account your body shape and the type of clothes you wear. In my case the spot was marked with a black marker pen.

Good luck!
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

NeedUChelp
Regular Member


Date Joined Oct 2017
Total Posts : 46
   Posted 11/8/2017 7:15 PM (GMT -7)   
Thank you!! My question is, if I was going about it as a jpouch then the stoma they would make would be the "temporary end ileostomy" so if it's temporary how would I be able to stop there and avoid surgeries further? How was your recovery from the first procedure, pain wise, complications, etc. Was it somewhat a manageable surgery? It's all so overwhelming to me so I am trying to do as little as possible for now, meaning probably avoiding other surgeries after the first temporarily or permanently

NiceCupOfTea said...
With a 3-step procedure, an end ileostomy would be the first step. You can indeed stop there if you are happy with that. An end ileo can be either temporary or permament, whereas a loop ileo is nearly always temporary. If you are thinking of making your end ileo permanent, then make sure it is situated as well as possible. See a stoma nurse a few days before the operation to measure the best position, taking into account your body shape and the type of clothes you wear. In my case the spot was marked with a black marker pen.

Good luck!

Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1256
   Posted 11/8/2017 10:33 PM (GMT -7)   
I believe the first step is a Temp Loop Ileostomy.They are natoriously problematic and tend to leak because it's hard to fit a wafer on properly . So if you decide to stay with a bag then your stoma will be made into a Permanent End Ileostomy. Google photos of a loop and end Ileostomy and you can see the difference. I have an Permanent End and am happy with it . I have my life back. I have Crohns.
Sugarmarie A.K.A. Poopy Pants

07kr5
Regular Member


Date Joined Jun 2013
Total Posts : 26
   Posted 11/8/2017 10:39 PM (GMT -7)   
Sugarmarie said...
I believe the first step is a Temp Loop Ileostomy.They are natoriously problematic and tend to leak because it's hard to fit a wafer on properly . So if you decide to stay with a bag then your stoma will be made into a Permanent End Ileostomy. Google photos of a loop and end Ileostomy and you can see the difference. I have an Permanent End and am happy with it . I have my life back. I have Crohns.


In a 3 step procedure, the first step is an end (i.e. permanent) ileostomy.

When you do 3 steps, I think they always leave the rectum after the first surgery (at least they did with me), so even if you decide to keep the ileo you most likely still need at least one additional surgery to remove the rectum. However, this can probably wait many years before it becomes absolutely necessary.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10015
   Posted 11/9/2017 6:36 AM (GMT -7)   
Yes, 07kr5 is correct. If it was a 2-step procedure you'd skip the end ileo and go straight to having a j-pouch with loop ileo. But if the patient is very ill, malnourished and/or on steroids, most surgeons prefer to do a 3-step procedure to give the patient more time to recover. Removing a colon and creating an end ileo is fairly straightforward and doesn't take very long - my first surgery only took an hour. (On the other hand my reversal took 3 hours and I didn't even have a j-pouch done! No complications either, it was just intrinisically a longer, more difficult, surgery.)


My question is, if I was going about it as a jpouch then the stoma they would make would be the "temporary end ileostomy" so if it's temporary how would I be able to stop there and avoid surgeries further?

A 'temporary' end stoma is exactly the same as a 'permanent' end stoma. A loop stoma is actually physically different to the end stoma. It's hard to explain in words, but an end stoma stops at the stomach, whereas a loop stoma continues onto the colon or the j-pouch. A picture shows it better:

/images.discovertherapies.com/article_images/images/000/000/045/max/loop.jpg?1493684511

Loop stomas are larger than end ones and have two openings instead of one: the top opening is for stool and the lower opening is for mucus/gas. Temporary loop stomas are used to divert the stool away from an anastomosis (i.e. the surgicial join between two bits of bowel) in order to give it time to heal. I have heard of people having loop stomas for years, but usually they only last for a few weeks or months before being reversed. That's probably because loop stomas in general don't work as well as end ones do: they are harder to manage and more likely to cause leaks.

If a person is going to have a permanent ileostomy, or wants to leave the option open to make it permanent, then an end stoma is preferable to a loop one.


How was your recovery from the first procedure, pain wise, complications, etc.

At first it was really easy. The surgeon had done a good job and I had zero surgical complications. I was up and about, and had a decent appetite, by day 2. Unfortunately something really stupid happened, which in retrospect made things a million times worse than they should have been. On the second night the needle in my back for epidural pain relief worked its way out and I ended up in agony for several hours, because thanks to sheer incompetence and bureaucracy nobody could or would get me any pain relief. Me and my parents complained bitterly to the hospital pharmacist the next day and he put me on oxycodone.

Well I'm from the UK so I hadn't even heard of oxycodone, as naive as that might sound. When I left hospital, my GP took over the prescribing of oxycodone. I had no idea what a high dose I was on (nor, I'm guessing, did my GP). Long story short, I got addicted. At some point I belated realised this and undertook my own taper. The whole process was a nightmare from start to finish. While the acute symptoms were much better after 4-5 days, I was still left with horribly sensitive/itchy/crawly skin, depression and fatigue for a very long time afterwards. I also had prednisolone to get off, another drug my body had become dependent on because I was on it so much before surgery.

So, most of my woes that first year after surgery were compounded by difficult and emotional drug withdrawals, not from any physical complications from the surgery itself. My advice for pain relief after surgery would be to take morphine or oxycodone for a few days only and then transition onto something like Tramadol, and then wean off that as soon as you can.

Just to add to something 07kr5 said about the rectum. You can have that removed during the first surgery, but if you are very ill and/or on steroids your surgeon may wish to delay it - mine did. Apparently rectum removal is a much longer and more delicate procedure than colon removal is. The main problem of keeping the rectum in is that it's liable to develop UC or even diversion colitis. You can't pass stool anymore, but unfortunately you can still pass mucus and blood. And it's a cancer risk as well. You should definitely have a talk with your surgeon about the pros and cons of proctocolectomy surgery (i.e. surgery where both the colon and rectum are removed).

UCwhat?
Veteran Member


Date Joined Dec 2012
Total Posts : 1037
   Posted 11/9/2017 8:57 AM (GMT -7)   
Over 4 and a half years ago, I made the decision to have surgery, and I really never even considered a J Pouch. To me it made much more sense to do less surgeries, have less risks and be healed and back on my feet more quickly. Like everyone said, you can certainly keep the end ileostomy that you get after the 1st of a 3 step J Pouch procedure, if you choose to do so. And yes, you might have to get your rectum removed in another surgery at a later date if you aren't getting a J Pouch, but it's usually not a rush.

Even though I chose to have an ileostomy from the start, I still had to do 2 surgeries because my surgeon wasn't confident that my body could handle everything at once, because I was so sick. With both surgeries far behind me and having lived with my bag for over 4 and a half years, I don't regret a thing and would make the same decision over and over if I had to.

Do you have any more questions?? I'm happy to help.
6/12:DX Mild Ulcerative Proctitis:quick remission w/1 Canasa nightly
MAJOR Flare began late 11/12
By 2/4/13, UC Severe into transverse colon
Prednisone refractory,little to no relief from enemas or Remicade
3/13/13:Proctocolectomy w/end ileostomy;pathology showed Severe Chronic UC throughout colon
2/26/15:Perineal Proctectomy (all sewn up!)

NeedUChelp
Regular Member


Date Joined Oct 2017
Total Posts : 46
   Posted 11/10/2017 8:06 AM (GMT -7)   
For some reason I didn't get notified I was getting responses to this so sorry for not responding. I understand the difference between the end and the loop, i was just curious if with my temporary end ileostomy, if I wanted to make it permanent and not move forward with the jpouch , if there was something they do to make it permanent but it sounds like they don't. I'm that case where I'm very sick and on steroids so yea I would be doing a 3 step and probably not rectal removal during first surgery just because I'm not 100% sure on what direction I'm going. I understand at some point you would get the rectum removed because disease can still occur there, I just don't really understand why you have to be sewn shut down there as well. Other than passing mucus and blood, it just sounds extremely painful to have your bottom sewn shut . Also sorry to hear about the oxy situation. That is actually ridiculous and it's a real shame that happened during your hospitalization but I'm glad you are ok now and otherwise your surgeries went well.


NiceCupOfTea said...
Yes, 07kr5 is correct. If it was a 2-step procedure you'd skip the end ileo and go straight to having a j-pouch with loop ileo. But if the patient is very ill, malnourished and/or on steroids, most surgeons prefer to do a 3-step procedure to give the patient more time to recover. Removing a colon and creating an end ileo is fairly straightforward and doesn't take very long - my first surgery only took an hour. (On the other hand my reversal took 3 hours and I didn't even have a j-pouch done! No complications either, it was just intrinisically a longer, more difficult, surgery.)


My question is, if I was going about it as a jpouch then the stoma they would make would be the "temporary end ileostomy" so if it's temporary how would I be able to stop there and avoid surgeries further?

A 'temporary' end stoma is exactly the same as a 'permanent' end stoma. A loop stoma is actually physically different to the end stoma. It's hard to explain in words, but an end stoma stops at the stomach, whereas a loop stoma continues onto the colon or the j-pouch. A picture shows it better:

/images.discovertherapies.com/article_images/images/000/000/045/max/loop.jpg?1493684511

Loop stomas are larger than end ones and have two openings instead of one: the top opening is for stool and the lower opening is for mucus/gas. Temporary loop stomas are used to divert the stool away from an anastomosis (i.e. the surgicial join between two bits of bowel) in order to give it time to heal. I have heard of people having loop stomas for years, but usually they only last for a few weeks or months before being reversed. That's probably because loop stomas in general don't work as well as end ones do: they are harder to manage and more likely to cause leaks.

If a person is going to have a permanent ileostomy, or wants to leave the option open to make it permanent, then an end stoma is preferable to a loop one.


How was your recovery from the first procedure, pain wise, complications, etc.

At first it was really easy. The surgeon had done a good job and I had zero surgical complications. I was up and about, and had a decent appetite, by day 2. Unfortunately something really stupid happened, which in retrospect made things a million times worse than they should have been. On the second night the needle in my back for epidural pain relief worked its way out and I ended up in agony for several hours, because thanks to sheer incompetence and bureaucracy nobody could or would get me any pain relief. Me and my parents complained bitterly to the hospital pharmacist the next day and he put me on oxycodone.

Well I'm from the UK so I hadn't even heard of oxycodone, as naive as that might sound. When I left hospital, my GP took over the prescribing of oxycodone. I had no idea what a high dose I was on (nor, I'm guessing, did my GP). Long story short, I got addicted. At some point I belated realised this and undertook my own taper. The whole process was a nightmare from start to finish. While the acute symptoms were much better after 4-5 days, I was still left with horribly sensitive/itchy/crawly skin, depression and fatigue for a very long time afterwards. I also had prednisolone to get off, another drug my body had become dependent on because I was on it so much before surgery.

So, most of my woes that first year after surgery were compounded by difficult and emotional drug withdrawals, not from any physical complications from the surgery itself. My advice for pain relief after surgery would be to take morphine or oxycodone for a few days only and then transition onto something like Tramadol, and then wean off that as soon as you can.

Just to add to something 07kr5 said about the rectum. You can have that removed during the first surgery, but if you are very ill and/or on steroids your surgeon may wish to delay it - mine did. Apparently rectum removal is a much longer and more delicate procedure than colon removal is. The main problem of keeping the rectum in is that it's liable to develop UC or even diversion colitis. You can't pass stool anymore, but unfortunately you can still pass mucus and blood. And it's a cancer risk as well. You should definitely have a talk with your surgeon about the pros and cons of proctocolectomy surgery (i.e. surgery where both the colon and rectum are removed).

NeedUChelp
Regular Member


Date Joined Oct 2017
Total Posts : 46
   Posted 11/10/2017 8:17 AM (GMT -7)   
Yes I do have questions! Thank you! So you got your first surgery as just the end ileostomy and colon removed and then got your rectum removed afterwards? Since I am considering how I may feel after step one and if I would be content with stopping there, what is the process of getting the rectum removed in a later surgery? I hear about getting it vacuum sucked out? I also hear some don't have it sewn up? The idea of your bottom being sewn shut sounds extremely uncomfortable since it is such an extra sensitive area, if you wouldn't mind telling me a little about your experience with that

UCwhat? said...
Over 4 and a half years ago, I made the decision to have surgery, and I really never even considered a J Pouch. To me it made much more sense to do less surgeries, have less risks and be healed and back on my feet more quickly. Like everyone said, you can certainly keep the end ileostomy that you get after the 1st of a 3 step J Pouch procedure, if you choose to do so. And yes, you might have to get your rectum removed in another surgery at a later date if you aren't getting a J Pouch, but it's usually not a rush.

Even though I chose to have an ileostomy from the start, I still had to do 2 surgeries because my surgeon wasn't confident that my body could handle everything at once, because I was so sick. With both surgeries far behind me and having lived with my bag for over 4 and a half years, I don't regret a thing and would make the same decision over and over if I had to.

Do you have any more questions?? I'm happy to help.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10015
   Posted 11/10/2017 2:18 PM (GMT -7)   
No worries.

No, there is nothing else they do after the 1st step if you are happy to stay with the stoma. As for being sewn up, if you don't have a rectum and an anus anymore, then I presume it would be a massive infection risk to leave the equivalent of an open wound in your behind. There is one poster on here, Christine1946, who had her rectum removed but didn't get sewn up - the surgeon left her anus in instead. The Crohn's came back there, which has been about as fun as it sounds.

I won't lie: the healing process from a proctocolectomy sounds pretty grim. That part apparently takes a long time to heal. But I'd rather deal with a few months of not being able to sit down than years of untreatable Crohn's in my anus.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15235
   Posted 11/10/2017 2:55 PM (GMT -7)   
I thought Christine had UC. We also had another poster Peace&Harmony who had an anus and had issues and had to have it removed. You have to remember that UC can attack any of the tissue down there, so you would need to continue to monitor that area, and you could suffer from symptoms, and passing of mucus/blood if you leave it - which doesn't sound too terrible, unless it's frequent, or urgent, but i don't see why it wouldn't be both of those things if there were inflammation.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10015
   Posted 11/10/2017 3:14 PM (GMT -7)   
I thought her diagnosis had been changed to Crohn's, but now I think about it I can't remember.

Found this fairly recent post (scroll to the end). Looks like you were right, but it was probably the fistula which threw me off track: /www.healingwell.com/community/default.aspx?f=33&m=3871157
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

UCwhat?
Veteran Member


Date Joined Dec 2012
Total Posts : 1037
   Posted 11/13/2017 9:08 AM (GMT -7)   
Sorry it's taken me a few days to get back to this! Hopefully I can answer your questions in a way that helps with your decision making process.

So you got your first surgery as just the end ileostomy and colon removed and then got your rectum removed afterwards?

I did have two separate surgeries, but since I knew going in that I was going to have a permanent ileostomy, a bit more was removed in the 1st surgery than would be if I'd had step 1 of a 3 step JPouch procedure. So with that 1st surgery they removed my large intestine, rectum and most of my anus...leaving a small anal stump. The surgeon said I could possibly stay like that indefinitely, but if I had disease return in that area, I would have to consider medication or more surgery....

Since I am considering how I may feel after step one and if I would be content with stopping there, what is the process of getting the rectum removed in a later surgery?

I can't say for sure what your rectum removal surgery would be like, since mine was removed with the 1st surgery. For my 2nd surgery, they didn't open me up at all, instead going in thru my backside, taking out and doing whatever was needed, then sewing it all up. Hopefully someone else can come along and answer if rectum removal can be done the same way or if they would open you up again. I have never heard of it being vacuumed out, but I guess that could be a thing?! The only way I can imagine NOT being sewn up would be a situation like mine, but without the disease returning enough in the remaining anal stump to warrant another surgery.

As far as surgeries go, having my back side sewn up wasn't the hardest one I've been through...but there was some discomfort for sure. I only stayed one night in the hospital, but it was a good few weeks before I could sit normally for any amount of time without A LOT of padding. After a week or 2 I was driving, but not comfortably at first...and WITH cushions. I did have some trouble with the wound healing, but a couple extra visits to the doctor and my willingness to due careful and thorough wound care got me through that just fine. The whole process wasn't nearly as bad as I feared it would be, and I certainly heard my share of horror stories ahead of time!

I hope that was at least a bit helpful....let me know if I can help further smile

NeedUChelp
Regular Member


Date Joined Oct 2017
Total Posts : 46
   Posted 11/13/2017 12:31 PM (GMT -7)   
Yea thanks so much for replying! Definitely helpful. What about the recovery process for that first surgery, how was that, pain wise, etc. Mine would be laparoscopic,mind sharing your first procedure experience?

UCwhat? said...
Sorry it's taken me a few days to get back to this! Hopefully I can answer your questions in a way that helps with your decision making process.

So you got your first surgery as just the end ileostomy and colon removed and then got your rectum removed afterwards?

I did have two separate surgeries, but since I knew going in that I was going to have a permanent ileostomy, a bit more was removed in the 1st surgery than would be if I'd had step 1 of a 3 step JPouch procedure. So with that 1st surgery they removed my large intestine, rectum and most of my anus...leaving a small anal stump. The surgeon said I could possibly stay like that indefinitely, but if I had disease return in that area, I would have to consider medication or more surgery....

Since I am considering how I may feel after step one and if I would be content with stopping there, what is the process of getting the rectum removed in a later surgery?

I can't say for sure what your rectum removal surgery would be like, since mine was removed with the 1st surgery. For my 2nd surgery, they didn't open me up at all, instead going in thru my backside, taking out and doing whatever was needed, then sewing it all up. Hopefully someone else can come along and answer if rectum removal can be done the same way or if they would open you up again. I have never heard of it being vacuumed out, but I guess that could be a thing?! The only way I can imagine NOT being sewn up would be a situation like mine, but without the disease returning enough in the remaining anal stump to warrant another surgery.

As far as surgeries go, having my back side sewn up wasn't the hardest one I've been through...but there was some discomfort for sure. I only stayed one night in the hospital, but it was a good few weeks before I could sit normally for any amount of time without A LOT of padding. After a week or 2 I was driving, but not comfortably at first...and WITH cushions. I did have some trouble with the wound healing, but a couple extra visits to the doctor and my willingness to due careful and thorough wound care got me through that just fine. The whole process wasn't nearly as bad as I feared it would be, and I certainly heard my share of horror stories ahead of time!

I hope that was at least a bit helpful....let me know if I can help further smile
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