Hi everyone,

I am 10 years post takedown (2006) and the first 5-7 years were ok. I was able to travel all around the world working and pretty much ate what I liked and lived normally. I still had 4-5 BMs a day and I am sure had bad times which I didn't dwell on, so my memory of them is dim.

The last 2-3 years though have been progressively getting worse and I am restricting my diet, avoiding obvious food like onion and lactose. For the past 6 months though, I have been dealing with pain and discomfort and I am on a daily dose of 6 to 8 x 2 - 500 mg Paracetamol + 30 mg Codiene to counter the pain, supplemented by slow release Oxycodone, now day and night, as well as the Immodium and other drugs to minimise output, both solid and otherwise. I am living like I was with UC for the 22 years prior to my surgery, taking a cocktail of drugs just to live a normal life.

I am now committed to going back to a permanent ileo, but my doc wants to leave the J Pouch in, in case I want to reconnect later. However I understand there will still be some output from the pouch in terms of mucous etc, but no actual poop.

There is a lot of positive stuff here and I am encouraged by this, knowing that life will be better afterwards,  however I would like to hear from anyone who has had a bad experience from the reversal of the j pouch, along the lines of leaving the pouch intact as opposed to removing it entirely and joining the Barbie (and Ken) butt club. Also what about adhesions after the reversal, as I am told this is where a lot of my pain is coming from now.

My doc was  reluctant to do this for the past couple of years, but has now relented and will do it when I set a date. I just want a balanced opinion from those who have actually been through it!!

Thanks for all the posts so far, and I want to do this within a month or two.!!!

Original Post

RD-

Others can describe their experiences with pouch removal or bypass, and I pointed out elsewhere that "simple" adhesion surgery might be worth trying.  I'm concerned that your paracetamol dose sounds dangerously high to me, if you're really taking up to 8 grams per day. Please discuss with your doctor, and please don't drink *any* alcohol while on such doses. A failing liver is much worse than a failing J-pouch.

Also, what is the average recovery time after removal? I am told 2 weeks of rest and then 6 weeks of easing back into it. I cant afford to have 2 months off, so I am inclined to take 2-3 weeks and then take it slowly. Can anyone share their experience?

 

RD, glad your jpouch behaved for so long, but sorry for the turn of events. Regarding jpouch removal surgery, 2-3 weeks and then taking it slowly sounds about right but may vary according to number of adhesions, laparoscopic vs open surgery, complications, etc. You will be on pain meds with hopefully great pain management (Percocet worked well for me.) It also depends on the type of work you do and how much rest you can get during your job. There's a lot more info about this under "Ostomy And Skin." I think you'll find it helpful.

Richard, I just had my perm ileostomy last year but didn't remove the pouch since I was too sick at the time.  I was determined to remove it at first but now I'm ok with keeping it for a while.  Until it gives me real trouble.  Yes, I have some mucus from the bottom. I can control it ok now but at first it was a little odd.  I have also pooped from my bottom and the dr says that is pretty common on occasion also.  Occasionally I feel the same pain as I had when it was in use but it's never as intense as in the past   Overall I'm extremely happy with my health with the perm ileo and j pouch still in tact   

 

I also would like to hear the experience of those that have the j pouch removed and how long it took to heal.   

RDSmith posted:

Also, what is the average recovery time after removal? I am told 2 weeks of rest and then 6 weeks of easing back into it. I cant afford to have 2 months off, so I am inclined to take 2-3 weeks and then take it slowly. Can anyone share their experience?

 

 I had my pouch removed November 9th 2015.

I went back to work in the middle of February.  About the 13th.

I could have gone back sooner at least 3 weeks sooner but I was definitely not in a hurry to go back.  I have been at the same place of employment for 29 years so I relished the time off. 

So... That said even going back 2-3 weeks is a bit early.  Especially if you have it removed because it will most likely for you be open surgery.  It was for me.  But I healed amazingly fast compared to the prior  surgeries.  I was feeling really good at about a month but it was still painful and I was not going to rush back to work.  I have a very physical job.  Lifting...twisting... Pulling... So I wanted everything to be healed as to not hurt anything when I went back. 

2-3 weeks is not enough time.  I don't think.  But you may think differently at that point. 

As for living with a bag.  Not as bad as everyone thinks.  Just another way to poop.  And that's what a pouch is.  Mine was worse than the UC prior so this is a blessing to be out of pain and all the other stuff.  It's sewed up and I don't miss that at all.  Thought it would be weird but it's not.  Feels... Normal.. That's where all my pain was... From there up into my pouch.  As soon as it was gone nothing but relief.  Never did I think I could be "normal"  again.  This is as close as I am gonna get and to tell you the truth.... It's pretty damn good. 

Richard. 

Hi everyone

thanks so much for your replies, very helpful. I should have mentioned my job, I am an IT consultant, so the heavy lifting is restricted to my laptop, and twisting, turning etc is limited to my vigorous keyboard skills and coffee habits.

when I had my first surgeries I too had been employed at the same place for a long period and they were very accomodating in terms of a return to work. Possibly trying to avoid a compo claim, but I will give them the benefit of the doubt because that hadn't even entered my mind until they joked about it much later. I am now working elsewhere and have limited leave available, hence my need to return asap. I would love to take a 2 month break and watch GoT all over again, but bills need to be paid etc...

I am currently working from home a lot, and hopefully will be able to continue that after the reversal, but I may need to travel interstate in Australia, which entails a 90 min car ride to Sydney airport and then 90 mins in the plane, and then taxi/car rides in Melbourne. My wonderful wife would be able to accompany me to carry bags etc and drive if necessary, so the effort on my part would be minimal.

So what I am hearing is that after 2-3 weeks pain management is the key, so not a million miles from my current situation, minus the porcelain bus rides. I am not stupid either so if I wasn't up to it I definitely wouldn't rush back. I have to have that discussion with my employer so perhaps they will surprise me and we can arrange for leave in advance...

thanks again, and if anyone else has more info would love to hear it, especially from down under!

 

Richard. 

I guess all of it depends on how difficult the surgery is for the surgeon and you.  And no one can answer that.  You won't know until it's done.  I had mine a short time and it came out easily.  As for having one for over a decade I would only guess it's gonna take awhile to get out.  Now if that affects your healing I don't know.  I can only go by what I went through.  If you are having similar trouble as I did no matter what you will find relief in the end.  

If you have a desk job I would only guess also.... It would be like healing at home.  Just sitting around anyways.  But even as easy as mine was at 8 weeks I could have gone back but I would only be doing harm to myself if anything happened.  And I look out for myself before I do the company I work for.  Paycheck or no paycheck.  I went out on disability and fortunately I have a union job where my union has disability payments.  Not much but it was better than nothing. 

Richard. 

Since there are a number of factors involved, it is hard to determine how difficult surgery will be.  In my case, my j pouch was in for 30 years and my surgeon had to deal with many adhesions when he removed the pouch.  The surgery went well even though it took a bit longer than “normal”.  Leaving my j pouch in was not an option due to high grade dysplasia in the anal canal.  I am now 3 years post-op and have had no trouble with adhesions.

 I opted to get a BCIR (modification of a k pouch) instead of an ileostomy based on quality of life issues, and that was the best choice for me.  I do not mean to imply that an ileostomy is a bad choice since other posters with them have expressed satisfaction similar to mine.  It’s just nice that there are options available and there is plenty of information about them on the internet. The first several days post-op were rough (pain), but that quickly improved to where I was off pain meds when I left the hospital.  My return home took 12 hours by plane (including a plane change in Atlanta) and car and I was out doing things (without lifting) after I got home.  I am basically retired, but continue to do financial consulting part time from home.   You will tire fairly easily following your surgery, so go easy for a while.  Best of luck to you!

Bill

Hi everyone

I saw my surgeon yesterday and we have agreed an operation date of 25 June. After this I will be pouchless and with a permanent ileo. I feel confident and quietly calm even though this is a big decision. I know I will feel better and life will be better than it has been for a long time.

Thanks to everyone for their help and support, and I expect I will be back with my own post op stories soon enough.

 

Richard, wishing you the best of luck and a speedy, smooth, recovery with few to no complications. There are several of us who have been through this process. There may be a few bumps along the way but we can help you and you will get settled. Feeling "confident and quietly calm" is a very good sign!

Lambiepie posted:

Richard, wishing you the best of luck and a speedy, smooth, recovery with few to no complications. There are several of us who have been through this process. There may be a few bumps along the way but we can help you and you will get settled. Feeling "confident and quietly calm" is a very good sign!

Lambie said it best. 

If you are having alot of pain and problems this will help. 

Life is good on this side. 

I hope when you join us you will see. 

Takes some getting used to but I got used to it fast and have not felt this good in decades. 

Good health and a quick recovery to you Richard. 

From Richard! 

I had my j pouch removed after a 30 year run on December 6. The surgery took 6 hours, alot of scar tissue to dig through. I felt great, no pain, didn't use the pca pump more than 12 times in 24 hrs so I asked for it to be discontinued. I was home in 4 days and only took one percocet a day for a week then stopped as it was not needed. The biggest issue I have is allergy to almost all the ostomy systems and products. My stoma is lopsided and is leaking under the barrier rings and or flange/wafers causing multiple appliance changes and excoriated skin. I know I need a revision, I cannot live with this stoma as it is. My surgeon says NO. I find it unacceptable that after 30 years of doing these surgeries a dr can't make a decent stoma and it is more than one Dr who has these results not caring one bit about the patient's quality of life being adversely affected. I am looking for a local surgeon who will be sympathetic and do a revision sooner than later. I am 5 weeks post op and very weak, not gaining weight, I lost 6 pounds since surgery, I am 96 lbs, 5'6". The convex appliances hurt my stomach which is still very bruised, not swollen. This makes movement very difficult. I am staying in bed more than I want to but I am not sure if I am expecting too much. I do what I can but then I am exhausted, empty a dishwasher, shower, wash and dry my hair, start a load of laundry, simple meal prep for myself, it all wears me out. I had to go to the lab and nearly passed out there. If I leave the house it has to be under an hour and I need to remember to take snacks and gatorade. I had similar issues with my last temp ostomy 2 years ago, revision was done in less than a month die to retracted stoma. I know I will eventually improve but at 66 it is getting more difficult to bounce back.  I can't imagine going to any job after 2-3 weeks. This recovery could take months and up to a year. My first ostomy did 30 years ago and I was only 33. I have never come across a Dr who is truthful about the recovery time. I realize we are all different and I hope others have better recovery experiences because at the moment I would say this is not quality of life. I don't believe in sugar coating what might be. Not meant to scare anyone considering this but go in with eyes wide opened because we all have different outcomes. Stoma nurses, once known as Enterostomal therapy nurses no longer have the same training, they are grouped under wound care and WOC nurses are certified with little training in stoma care. It is like the blind leading the blind since I know more than 6 nurses who I saw since my surgery. Hospitals and nurses also use the worst products, good products cost too much. Coloplast is by far the best. Better filters, nicer pouches, no gas blowup. I sleep through the night 5-6 hours. I use a peri bottle to clean the pouch which is much better than just wiping with tissue paper. I am emptying ever 2-3 hours because the weight of the pouch pulls. It also depends on which pouch I have on, I am at the mercy of samples at the moment until my medicare resolves the quantity issues, I purchased and returned several boxes trial and error trying to find the one that feels good and meets my criteria. One day I changed 28 times in 24 hours due to leaks, no one told me to use convex and flat appliances were not working as they did with my last stoma. I am hoping now a convex trio silicone barrier ring will allow me to revert to flat appliances. Next change I will know if it works. I don't do the crusting technique since  I am allergic to all prep products, I do use a bit of powder to absorb moisture. Sooner or later I hope to have a better stoma and a better quality of life. I am not patient but I have no choice at the moment. I hope my experience helps others figure out what is best and that there are options in products that some nurses and drs will not tell you about.

Hi Woodstock,

Firstly I feel for you with your problems, it sounds like my last temp ileo before my J Pouch in 2006. Since my reversal surgery in 2016, I have had 2 revisions of my stoma, because of the poor spouting and excoriated skin. After my last revision the surgeon said there is nothing more he can do surgically, due to the amount of scar tissue I have inside.

I have resigned myself to the stoma as it is, with a downward spouting aperture, and managing the skin as it starts to deteriorate. I do a change daily when Scott (our current Prime Minister in Australia and my name for my stoma) is least active. Luckily we have a generous PBS here that pays for most of my supplies, so I am able to change regularly.

I clean the area with a adhesive removal wipe, shower with no appliance, washing around the area with normal soap and rinse thoroughly. I then apply a skin lotion cloth on the peristomal skin, use a barrier spray immediately around the stoma and then apply a convex ring and then the convex appliance.

For 90% of the time, I am reasonably comfortable, however there are times when I have excruciating pain if the appliance is leaking or not fitted properly. I also have a small area just in the lower portion of the stoma that can be quite painful too, but if I fit the appliance just right, it is bearable.

Products I use are:

Dansac - Nova Convex Firm Opaque Pre-cut 6mm 30mm bag
Hollister - Adapt Convex Barrier Rings 30 mm
3M - Cavilon No Sting Barrier Film Spray
Coloplast - Brava No Sting Remover Wipes
Dansac - Skin Lotion Tissues
Hollister - Adapt Stoma Powder (when needed)

I hope your situation improves, and you can find a surgeon who can help with a revision. I used to have a perfect stoma that gave me no trouble, but the last revision has spoiled it for me....

Let me know if you have any more specific question.

Cheers

Richard

 

Hello,

 I am curious on how you are doing now? Hopefully much better?

I am considering going back to the ostomy. I now have a Kpouch for 2 years. Prior 2 Jpouchs. I was told I may have an issue with short gut as I don’t have a lot of small bowel left to deal with. But the issues with the K are just becoming too much for me.

It does seems that we are now facing supply difficulties, shortages, etc. with the K . Just don’t want to have the same with the ostomy.

Again certainly hope you are in a better place than you were in January.

Blessings to you, Jan

When I had my temporary ostomy before takedown, I had a retracted stoma. It retracted deep into its little hole and when stool poured over it, the acidic stool would sit in the recesses, and seep over my skin and under the wafer, causing leaks and many changes of the appliance. I started using concave appliances, and it helped. The one item that healed my bleeding, excoriated skin was Marathon Liquid Skin Protectant. It's by a company called Medline and I believe they sell online, but I also found it in specialty companies that sell health care equipment and supplies. 

woodstock69 posted:

I had my j pouch removed after a 30 year run on December 6. The surgery took 6 hours, alot of scar tissue to dig through. I felt great, no pain, didn't use the pca pump more than 12 times in 24 hrs so I asked for it to be discontinued. I was home in 4 days and only took one percocet a day for a week then stopped as it was not needed. The biggest issue I have is allergy to almost all the ostomy systems and products. My stoma is lopsided and is leaking under the barrier rings and or flange/wafers causing multiple appliance changes and excoriated skin. I know I need a revision, I cannot live with this stoma as it is. My surgeon says NO. I find it unacceptable that after 30 years of doing these surgeries a dr can't make a decent stoma and it is more than one Dr who has these results not caring one bit about the patient's quality of life being adversely affected. I am looking for a local surgeon who will be sympathetic and do a revision sooner than later. I am 5 weeks post op and very weak, not gaining weight, I lost 6 pounds since surgery, I am 96 lbs, 5'6". The convex appliances hurt my stomach which is still very bruised, not swollen. This makes movement very difficult. I am staying in bed more than I want to but I am not sure if I am expecting too much. I do what I can but then I am exhausted, empty a dishwasher, shower, wash and dry my hair, start a load of laundry, simple meal prep for myself, it all wears me out. I had to go to the lab and nearly passed out there. If I leave the house it has to be under an hour and I need to remember to take snacks and gatorade. I had similar issues with my last temp ostomy 2 years ago, revision was done in less than a month die to retracted stoma. I know I will eventually improve but at 66 it is getting more difficult to bounce back.  I can't imagine going to any job after 2-3 weeks. This recovery could take months and up to a year. My first ostomy did 30 years ago and I was only 33. I have never come across a Dr who is truthful about the recovery time. I realize we are all different and I hope others have better recovery experiences because at the moment I would say this is not quality of life. I don't believe in sugar coating what might be. Not meant to scare anyone considering this but go in with eyes wide opened because we all have different outcomes. Stoma nurses, once known as Enterostomal therapy nurses no longer have the same training, they are grouped under wound care and WOC nurses are certified with little training in stoma care. It is like the blind leading the blind since I know more than 6 nurses who I saw since my surgery. Hospitals and nurses also use the worst products, good products cost too much. Coloplast is by far the best. Better filters, nicer pouches, no gas blowup. I sleep through the night 5-6 hours. I use a peri bottle to clean the pouch which is much better than just wiping with tissue paper. I am emptying ever 2-3 hours because the weight of the pouch pulls. It also depends on which pouch I have on, I am at the mercy of samples at the moment until my medicare resolves the quantity issues, I purchased and returned several boxes trial and error trying to find the one that feels good and meets my criteria. One day I changed 28 times in 24 hours due to leaks, no one told me to use convex and flat appliances were not working as they did with my last stoma. I am hoping now a convex trio silicone barrier ring will allow me to revert to flat appliances. Next change I will know if it works. I don't do the crusting technique since  I am allergic to all prep products, I do use a bit of powder to absorb moisture. Sooner or later I hope to have a better stoma and a better quality of life. I am not patient but I have no choice at the moment. I hope my experience helps others figure out what is best and that there are options in products that some nurses and drs will not tell you about.

Best Wishes Woodstock,  I was fortunate to have 

 

gregl posted:
woodstock69 posted:

I had my j pouch removed after a 30 year run on December 6. The surgery took 6 hours, alot of scar tissue to dig through. I felt great, no pain, didn't use the pca pump more than 12 times in 24 hrs so I asked for it to be discontinued. I was home in 4 days and only took one percocet a day for a week then stopped as it was not needed. The biggest issue I have is allergy to almost all the ostomy systems and products. My stoma is lopsided and is leaking under the barrier rings and or flange/wafers causing multiple appliance changes and excoriated skin. I know I need a revision, I cannot live with this stoma as it is. My surgeon says NO. I find it unacceptable that after 30 years of doing these surgeries a dr can't make a decent stoma and it is more than one Dr who has these results not caring one bit about the patient's quality of life being adversely affected. I am looking for a local surgeon who will be sympathetic and do a revision sooner than later. I am 5 weeks post op and very weak, not gaining weight, I lost 6 pounds since surgery, I am 96 lbs, 5'6". The convex appliances hurt my stomach which is still very bruised, not swollen. This makes movement very difficult. I am staying in bed more than I want to but I am not sure if I am expecting too much. I do what I can but then I am exhausted, empty a dishwasher, shower, wash and dry my hair, start a load of laundry, simple meal prep for myself, it all wears me out. I had to go to the lab and nearly passed out there. If I leave the house it has to be under an hour and I need to remember to take snacks and gatorade. I had similar issues with my last temp ostomy 2 years ago, revision was done in less than a month die to retracted stoma. I know I will eventually improve but at 66 it is getting more difficult to bounce back.  I can't imagine going to any job after 2-3 weeks. This recovery could take months and up to a year. My first ostomy did 30 years ago and I was only 33. I have never come across a Dr who is truthful about the recovery time. I realize we are all different and I hope others have better recovery experiences because at the moment I would say this is not quality of life. I don't believe in sugar coating what might be. Not meant to scare anyone considering this but go in with eyes wide opened because we all have different outcomes. Stoma nurses, once known as Enterostomal therapy nurses no longer have the same training, they are grouped under wound care and WOC nurses are certified with little training in stoma care. It is like the blind leading the blind since I know more than 6 nurses who I saw since my surgery. Hospitals and nurses also use the worst products, good products cost too much. Coloplast is by far the best. Better filters, nicer pouches, no gas blowup. I sleep through the night 5-6 hours. I use a peri bottle to clean the pouch which is much better than just wiping with tissue paper. I am emptying ever 2-3 hours because the weight of the pouch pulls. It also depends on which pouch I have on, I am at the mercy of samples at the moment until my medicare resolves the quantity issues, I purchased and returned several boxes trial and error trying to find the one that feels good and meets my criteria. One day I changed 28 times in 24 hours due to leaks, no one told me to use convex and flat appliances were not working as they did with my last stoma. I am hoping now a convex trio silicone barrier ring will allow me to revert to flat appliances. Next change I will know if it works. I don't do the crusting technique since  I am allergic to all prep products, I do use a bit of powder to absorb moisture. Sooner or later I hope to have a better stoma and a better quality of life. I am not patient but I have no choice at the moment. I hope my experience helps others figure out what is best and that there are options in products that some nurses and drs will not tell you about.

Woodstock,  I was fortunate to have a very wonderful surgeon in 1992 that had helped perfect the J-pouch surgery at the Cleveland Clinc. The day before my first surgery he came and sat with me and measured exactly how the pouch would lie and explained the entire procedure with me. The stoma and the bag he suggested that I use worked perfectly for two years ( I needed time because of a large project I was working on)  I had it reversed in 1994 and I have had my problems with pouchitis, and went on Cipro 500 long term. I am 73 now and doing fine and am off the Cipro now.

I have a lot of empathy for you, because I know if I need mine reversed I have a lot of scar tissue. Please take time to find a surgeon that knows what they're doing  and have a good bedside manner. My guy was fantastic and even called me at home to follow up. Not many really do a good job with this. You need to seek out a good colorectal surgeon. My surgery was at Jefferson Hospital in Philadelphia a great hospital for this surgery. Suggest you contact Cleveland Clinic for more information on hospitals and surgeons - Best Wishes Greg Loomer

Add Reply

Likes (0)
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×