Would you go back to the ileostomy?

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. 

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.

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.

I apologize. I interpreted it wrong.

Long day. Not much sleep and jumping the gun to answer. 

I agree. Temps I know are miserable. That I can attest to. 

Again. I apologize. 

Richard. 

End ileostomies are sometimes created temporarily. These should function just as a well as an end ileostomy that is intended to be permanent.

Yes, I had an end for 7 months and a loop for 8 weeks.  Although, I managed with both, the end was definitely much better.

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.