If things don't work out or you get diagnosed with Crohns would you go back to the ileostomy? I see some people are on biologicals again after going through all the surgeries. I can't see myself back on biologicals because I've been through them and I was at the end medically hence I got the surgeries. I've even heard of a person who had 5 (!) j-pouches created and it doesn't work for this person at all. I'd happily go back to the bag. What about you? 

Original Post

I know what you mean. I never wanted an ileostomy again but when my j-pouch failed I didn't want to have another one created or biologics.  So to me it wasn't the worst thing to do... it was 3rd from the last thing I wanted to do. I don't care what they call it but cuffitis is UC and I think pouchitis is also an IBD. 

I relied on people here that told me a permanent ileostomy is much easier to handle than a temp one.  They were right. 

Although my j pouch has not troubled me, I have had issues with chronic small bowel obstructions and peri-anal abscesses and fistulae.  If things got much worse I would definitely go back to an ileostomy.  My original ileostomy after my colectomy gave me my life back so I have good memories (minus the blowouts).

I wouldn’t go back to an ileostomy if you paid me. I hated it. In fairness though, I don’t know if ileostomy products have gotten better from when I used them 25+ yrs ago. At the time I had my ileostomy, I worked in the professional world and hated the uncontrollable gas, smell, and bloating of the bag. I had many experiences with the seal leaking around the bag as well. I was meticulous in putting the bag on, my husband would even help me to make sure it was centered, dried, etc. I wouldn’t eat 6 hours before a change out. I wasn’t comfortable having sex with the bag either and yes, I bought bag covers, but it didn’t make me feel any better. I didn’t do very well psychologically or physically when I had an ileostomy. 

Although my J-Pouch is not perfect, I’m one of those who was diagnosed with UC and after surgery path tests showed Crohns. So yes, I deal with pouchitis, but as time has gone on, it is less and less. And yes, I have fistulas, 3 of them. But I find them easier to deal with than the bag. I feel much better physically and mentally with the J-Pouch. 

I do keep myself in shape with exercise and I eat everything in moderation - I do not have any food issues. I very rarely take any meds and if I do need something, an Aleve calms everything for me. I take some vitamins, but never probiotics, they mess up my system bad. 

The one thing I can say from being on this board is, every body is different. This disease is so unpredictable and the complications from it are different for everyone. I take one day at a time and thank God for every day I’m here, even on my bad days. 

Recurrent high-grade dysplasia and a malignant polyp in the anal canal made J pouch removal necessary for me. The surgeon who I saw for a second opinion recommended an ileostomy, but this was a procedure that I strongly did not want for its associated issues. 

I was fortunate to do my research on options and locate an excellent surgeon in Florida who gave me a BCIR.  I have had this procedure for 6 years and have had no problems with it.  It (or the closely related K pouch) would be a good option to consider if your efforts to save your J pouch are not successful.  I wrote an article entitled “Researching My Options” that appeared in the Spring 2019 issue of The Phoenix magazine (sponsored by the United Ostomy Association of America).  This article was posted with their permission on the Quality Life Association’s web page (www.qla-ostomy.org) under the “News” key and might assist you with the decision that you are faced with.  This web site also provides additional informational information about the bagless alternatives to the conventional ileostomy.

 

I have been diagnosed with Crohns after having my j pouch created.  At the beginning, when my  body was adapting to the pouch, I was ready to go back to the ileostomy; however, now that my pouch is older and more adapted (13 this month), I wouldn't want to remove it. Things are not always wonderful having a j pouch, but they weren't always wonderful before the pouch either.  

After being here awhile and reading alot of posts your question will come down to each individual.  

I wish. In hindsight now of course.  I would have went straight to an end ileo.  But my experience is different as is everyone here is different.

Some are good with dealing with a pouch that acts up. 

Some like Bill found another solution.

T.E. Found an end ileo works well. Like I did.  Sure we all have things we will have to deal with no matter which way we go. That's the part we all have to come to terms with. 

Whatever we decide to live with we will always have issues small or large. 

I've been having blowouts for two days. I think it stopped 

But it's the only issue I have and it's only because I ate too much of something.  Lol.  Cheese.  Dang cheese will sneak under that wafer almost every time.  Or I missed a step putting it on.  But it doesn't hurt. Just have to change.   It happens occasionally but not enough to worry about.   It's part of my decision. And I know it  will happen from time to time.  

Your question will get a large range of answers.  

Me. Mine would be yes.  Of course I already have one so I'm biased! 

Richard. 

Mysticobra posted:

After being here awhile and reading alot of posts your question will come down to each individual.  

I wish. In hindsight now of course.  I would have went straight to an end ileo.  But my experience is different as is everyone here is different.

Some are good with dealing with a pouch that acts up. 

Some like Bill found another solution.

T.E. Found an end ileo works well. Like I did.  Sure we all have things we will have to deal with no matter which way we go. That's the part we all have to come to terms with. 

Whatever we decide to live with we will always have issues small or large. 

I've been having blowouts for two days. I think it stopped 

But it's the only issue I have and it's only because I ate too much of something.  Lol.  Cheese.  Dang cheese will sneak under that wafer almost every time.  Or I missed a step putting it on.  But it doesn't hurt. Just have to change.   It happens occasionally but not enough to worry about.   It's part of my decision. And I know it  will happen from time to time.  

Your question will get a large range of answers.  

Me. Mine would be yes.  Of course I already have one so I'm biased! 

Richard. 

Hi Richard thanks for answering. May I ask what kind of cheese specifically? 

Andrina posted:
Mysticobra posted:

After being here awhile and reading alot of posts your question will come down to each individual.  

I wish. In hindsight now of course.  I would have went straight to an end ileo.  But my experience is different as is everyone here is different.

Some are good with dealing with a pouch that acts up. 

Some like Bill found another solution.

T.E. Found an end ileo works well. Like I did.  Sure we all have things we will have to deal with no matter which way we go. That's the part we all have to come to terms with. 

Whatever we decide to live with we will always have issues small or large. 

I've been having blowouts for two days. I think it stopped 

But it's the only issue I have and it's only because I ate too much of something.  Lol.  Cheese.  Dang cheese will sneak under that wafer almost every time.  Or I missed a step putting it on.  But it doesn't hurt. Just have to change.   It happens occasionally but not enough to worry about.   It's part of my decision. And I know it  will happen from time to time.  

Your question will get a large range of answers.  

Me. Mine would be yes.  Of course I already have one so I'm biased! 

Richard. 

Hi Richard thanks for answering. May I ask what kind of cheese specifically? 

Any cheese. I swear any cheese slows it down to a crawl. I tend to tuck the end of my bag in and if I'm sittin g down of course it's folded and that prevents it from going down and put pressure on the top half and poof. It squeezes between my skin and the wafer. I usually spot it as soon as it happens. I have a taped wafer and can see it happening.  But. Any cheese does it. So I'm careful when I do eat it. I still eat it but limit what I take in. And keep an eye on it. Potatoes do the same thing to me. Nothing else so far does it. 

Richard. 

I am now considering going back to an ileostomy.  I have to make this decision which has been recommended by  two different colon and rectal surgeons.  I now have a j-pouch which is causing me much pain and my quality of life has been affected.  I have had this j-pouch for 32 years.  

I can't help remembering all the problems I had with my ileostomy.  I'm wondering if they are better now.   My questions to persons who have gone to an ileostomy from a j-pouch, do they leave the j-pouch and put the ileo directly to the stomach?  I'm told this is a much easier surgery and removing the j-pouch can cause many complications and possibly infections.

Any information would be greatly appreciated. 

Although I did not opt to get an ileostomy when my J pouch needed to be removed, perhaps relating my experience would be helpful.  I had my J pouch for 30 years and had 3 operations.  Undoubtedly, those surgeries were a factor for creating numerous dense adhesions that made J pouch removal more difficult for my surgeon.  It is not an easy operation and some people find that it can take quite a while for their bottom to heal. I had no problems with this and no infections developed. I would not recommend leaving the J pouch in because future problems could develop with it.  Some people have had their anal sphincter retained with the thought that they may want to try another J pouch in the future.

Although many people have had good results with ileostomies and there have been improvements in the appliances, I decided to get a BCIR (very similar to a Kock pouch) based on the quality of life it offers. This procedure does not require having an exterior bag and avoids many of the issues that those with conventional ileostomies can have.  There is a high success rate with these procedures and they have a high degree of patient satisfaction.  There is considerable information about both of these procedures on the internet.  It does not surprise me that your two surgeons recommended an ileostomy and likely did not mention alternative options.  Many doctors are not aware that these procedures exist or may have outdated and inaccurate information about them.  If you have interest in considering these options, I would suggest that you contact a surgeon who does them to see if you would be a candidate to get one.  Please feel free to send me a PM if you have any questions.

Bill

I first was just diverted from using j-pouch to an end ileostomy and 6 months later had my j-pouch removed and still used the end ileo. I could have saved an operation if I'd had the j-pouch removed during the first surgery like the doctors recommended. My j-pouch didn't get better during the 6 months inbetween surgeries.

She was able to do the first surgery laproscopically but the surgery to remove it has to be open.  The biggest hurdle I had was getting my rear end to heal up but others have had no problem. 

The end ileo is much better than the temp ileo I had in-between the j-pouch surgeries . 

The diverting and then removal surgeries were done at the Mayo Clinic.  I've heard about major problems with the removal surgery so hope you are using a surgeon with a lot of removal experience. 

Sorry your j-pouch failed  

Thank you so much for your response.  It Is very helpful.  Can you tell me what kind of problems you had with the j-pouch after it was left in after your ileostomy?

The colon and rectal surgeon I discussed this with will not remove the j-pouch because he says it is a very hard surgery and I could get an infection.  He said it would not be a problem if the j-pouch was left.  As usual they do not tell you everything.

Any suggestions on where to go for an experienced j-pouch removal surgeon?  I live in Colorado, but I would be willing to travel elsewhere.

 

 

 

I had the surgeries to divert and then remove performed at the Mayo Clinic in Rochester, MN by Dr. Kelli Mathis. There was a patient in Mayo at the same time that because she needed another major surgery because the surgeon that removed her j-pouch on the east coast didn't get it right. That's scary.

The surgery is more complicated than when they removed our colons and constructed our j-pouches. That's because the number of people that need their j-pouches removed is very small. She usually schedules only one surgery on the day she removed j-pouches. I respect your doctor telling you that he wouldn't remove it but I don't think it is to be like that forever. I don't remember why. Maybe someone else on here does.

I don't know about the surgeons at the other locations but Mayo is in Phoenix area and in Florida.  Cleveland Clinic also has similar locations besides their Cleveland, OH Clinic.  There are also excellent surgeons in California but I don't know where. 

Sorry you need this after so long!  

Here is a thought since you are concerned about J pouch removal.  The surgeon who removed my J pouch was Dr. Ernest Rehnke in St. Petersburg, FL.  A number of people like me had him remove our J pouches and create a BCIR.  His office has a package of information about the BCIR surgery and includes a list of over 300 people who you can contact about their experience.  Their current list includes 35 who had their J pouches removed.  While there is no obligation to have this surgery, the information you gain from contacting some of these people may be helpful to making your decision.  The BCIR program website is: www.bcir.com

My j-pouch is not functioning well at all now (it was good for 15 year) but I am holding out against going to an ileostomy.

I had a lot of skin irritation when I had the temp ileostomies, even with my best efforts and lots of advice and consultations from a stoma-care nurse. Ouch! I was glad to be rid of that sore ring of skin on my abdomen when I went to the j-pouch. I do have sensitive skin, though. (No actual skin disorders, but my skin gets red and sore very easily.)

I also found that my personality didn't suit the regimen you need to manage an ileostomy (bag changing, skin care, etc.). For some reason, I found it psychologically burdensome. However, many people deal with it just fine. If my condition worsens, I will have to overcome this mental block – not looking forward to that!

Kushami posted:

My j-pouch is not functioning well at all now (it was good for 15 year) but I am holding out against going to an ileostomy.

I had a lot of skin irritation when I had the temp ileostomies, even with my best efforts and lots of advice and consultations from a stoma-care nurse. Ouch! I was glad to be rid of that sore ring of skin on my abdomen when I went to the j-pouch. I do have sensitive skin, though. (No actual skin disorders, but my skin gets red and sore very easily.)

I also found that my personality didn't suit the regimen you need to manage an ileostomy (bag changing, skin care, etc.). For some reason, I found it psychologically burdensome. However, many people deal with it just fine. If my condition worsens, I will have to overcome this mental block – not looking forward to that!

Ya. 

Coming to terms mentally is a challenge.

It took me a month to fess up and say. This is the way its gonna be. Make the best of it. 

You mentioned the temporary ileo. You cannot compare the two. An end ileo is so much more easier. I've had both and thought the end would be like a a temp. It's not. My temporary ileo was terrible. The end I have is nothing like that. No leaks. Like the temporary. That seemed to leak all the time. I could go seven days without changing. I don't. I do 4 days. Then 3 days. 7 days in a week and I like to change on the same days. 

Richard. 

I 2nd Richard's opinion about end ileo's. My decision to use an end ileo was helped by relying on people here who said it was night and day better. I have sensitive skin too. I did try out different vendor products. They all sent me samples. Good luck 

Kushami posted:

My j-pouch is not functioning well at all now (it was good for 15 year) but I am holding out against going to an ileostomy.

I had a lot of skin irritation when I had the temp ileostomies, even with my best efforts and lots of advice and consultations from a stoma-care nurse. Ouch! I was glad to be rid of that sore ring of skin on my abdomen when I went to the j-pouch. I do have sensitive skin, though. (No actual skin disorders, but my skin gets red and sore very easily.)

I also found that my personality didn't suit the regimen you need to manage an ileostomy (bag changing, skin care, etc.). For some reason, I found it psychologically burdensome. However, many people deal with it just fine. If my condition worsens, I will have to overcome this mental block – not looking forward to that!

I feel like there is a “breaking point” that at some point when the only avenue is the ileostomy, it’s easier to accept. Due to where my stricture formed, I had no other choice but to go back to the ileostomy. It was either not be able to eat and wither in the hospital, or regain my life back with the inconvenience of having the bag. A lot of people are very scared of going back to the bag, but I find that having the fear of the bag will also create misery. Living in fear creates a mind set that having a j-pouch is the “only way to live.” I find that this path is also scary because people are willing to sacrifice quality of life for the sake of keeping the j-pouch at all costs.

I hope that your current condition doesn’t worsen and that you feel better. 

-Rina

Thanks Rina, I have accepted the fact of having an ileostomy.  I just don't want to have the surgery without removing the j-pouch which I believe would be a very, very hard surgery.  Not to mention all the scar tissue to deal with.

Taking my time trying to get as much information I can.  Finding a good surgeon who does many j-pouch removals has been quite a chore.

Thanks for your input.

FYI,

My surgeon spent 5 hours getting rid of my adhesions during the removal surgery. I had been taking 4 10/325 hydrocodone pain pills daily. After the surgery I've been able to decrease the medication to one to two 7.5/325 strength pills these days.  It's been over 3 years and knock on wood the adhesions have not come back.

I'd had more than the 2 j-pouch surgeries. I'd also had a hysterectomy 20 years before then as well as a a large incision hernia surgery 6 months after my take down.  

If you are having any current problems hopefully your surgeon will take care of them while performing the surgery.

Omg I am so on board with the person who said would not go back to a iliostomy if paid. Although my pouch is not perfect I could not go through that bag again. One year was enough to last me a life time. My issues were basically the same and it was 2017 for me. 

TE Marie posted:

I hope nobody has to go back to an ileostomy but some of us had to.  Like I said above a permanent ileo is much better than a temp (loop) one. It is light years better.

What about temp end ileo vs permanent end ileo? Any differences there? 

Andrina posted:
TE Marie posted:

I hope nobody has to go back to an ileostomy but some of us had to.  Like I said above a permanent ileo is much better than a temp (loop) one. It is light years better.

What about temp end ileo vs permanent end ileo? Any differences there? 

T. E. Answered that. 

The end ileo is light years better.

Temp means temporary. Not meant to be permanent. 

I've had both. The end ileo has been no problem. 

The temp was misery as most here have experienced. And we tend to think the end ileo will be the same. It's not.  Mine works well. Better than anything I've had. And way better than I ever thought it would in my wildest dreams. Or nightmares. However we want to look at it. 

Mine saved me. I'm happy to have it with me the rest of my life. 

Richard. 

Mysticobra posted:
Andrina posted:
TE Marie posted:

I hope nobody has to go back to an ileostomy but some of us had to.  Like I said above a permanent ileo is much better than a temp (loop) one. It is light years better.

What about temp end ileo vs permanent end ileo? Any differences there? 

T. E. Answered that. 

No. They answered about loop vs end. Not temp end vs perm end

I have the loop now and I had to switch to a convex system with barrier rings. With the end I only needed flat wafer and no rings. So I already know that the end is easier but it was temporary. I can't see why a permanent end would be much different to a temporary one unless there is something different about how they stitch it to the skin? Idk

With temp ones they twist the intestine in a loop that's brought above the skin. It is possible for some waste to pass thru it with some people. During the take down surgery they untwist the loop and take it back down in with the rest of the remaining intestines.

With a permanent one they take the end of the intestine through the skin so it is the actual end point. That way no waste passes through anywhere but the stoma. 

I had a horrible time with my temp/loop after the first colon removal/j-pouch construction surgery. I was in the hospital 16 days as I kept getting dehydrated.  The ileostomy output was non stop. I hated that temp stoma but I've learned to appreciate this end one.

 

It sounds like a lot of people have had issues with leaking.  I did too until I discovered a product that was like second skin.  I can't recall the name, unfortunately, but it was a game changer (I can look it up in case anyone is interested).  No more leaks and I could wear the bag for over a week.  The point being that it gave me the confidence to throw in the towel if I ever get sick of my J Pouch.

There are times that I wish I had kept the bag.  Life might have been easier but I'm still too vain at the moment and I'm not ready to give up my wardrobe or waist cinching tops and dresses.  

TE Marie posted:

I first was just diverted from using j-pouch to an end ileostomy and 6 months later had my j-pouch removed and still used the end ileo. I could have saved an operation if I'd had the j-pouch removed during the first surgery like the doctors recommended. My j-pouch didn't get better during the 6 months inbetween surgeries.

She was able to do the first surgery laproscopically but the surgery to remove it has to be open.  The biggest hurdle I had was getting my rear end to heal up but others have had no problem. 

The end ileo is much better than the temp ileo I had in-between the j-pouch surgeries . 

The diverting and then removal surgeries were done at the Mayo Clinic.  I've heard about major problems with the removal surgery so hope you are using a surgeon with a lot of removal experience. 

Sorry your j-pouch failed  

what types of major problems?

The temp loop ileo has two openings. One that is on top of the stoma (think of it like a little volcano on your belly)  where food travels from your mouth and comes out at this part of the stoma. There is another opening at the base of the stoma which is a slight opening that is flush to your belly. That opening connects that part of your stoma with the rectal region that is no longer in use. I am having a lot of problems with mucus build up in my remaining j pouch/rectal area so mucus is actually coming out the part of my ileo that is at the base of my stoma. This discharge makes it very hard to change the appliance since some sort of fluid is always coming out and it also wears down my barrier ring quicker than it should. With this type of ileo, you need to be careful that you don’t cover the base of the stoma opening so fluid/mucus can escape if needed. I had surgery scheduled to remove the J pouch and get a permanent ileo earlier this year but developed Cryptogenic organizing pneumonia which was probably some Crohns manifestation. I had to be on a long steroid taper which was super fun. I can’t wait to get some more sick time saved up so I can finally get my J pouch removed and go permanent stom. One opening  on top of the volcano with a permanent end stom sounds a lot better than 2 openings with a temp loop stom.  Just wanted to add that I really loved my J pouch and things were awesome until they went bad when my diagnosis was changed from UC to Crohns. I would still go the J pouch route if I had to do it over today so I hope all you J pouchers out there keep going for many more decades!! 

I am hoping it won't come to having to go to a permanent ileostomy although my GI was asking questions after my pouchoscopy yesterday. The reason I don't want to go back is that during the approx. 6 months I had the temporary I was severely dehydrated, landing in the hospital for over a week, and then was on 1500 mL bags of fluid every night until my pouch could be connected. This happened almost immediately after surgery. That and the complication of waiting to see if an RV fistula would heal itself meant having to give up my job, apartment, and move back across the state. I am scared that if I have to go back to an ostomy I will again have issues and complications that could mean I won't be able to keep my job. I am 35 and that is not an option. Also Humira did nothing for me. After three shots, it was no help and I landed in the hospital with Pulmonary Embolism. No other risk factors at 27, none, and when looked up it was on the rare side effects, so no thank you to that.

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