J pouch

I haven’t been on here in a while because I have been feeling great and haven’t really needed to ask questions but, I went to the dr today and they are doing an ileoscopy to take biopsies to try and see if it’s crohns or UC and since I haven’t had issues for almost a year that I could probably do the reversal so I just wanted to know how long the last surgery takes to heal from. I know it takes time and also wanted to know how many times you have to go to the bathroom now (after healing). Thanks!! 😁

I’m glad your surgery went well, I was reading about people saying it was like having UC again so I’m happy it’s not like that for everyone!

I haven't had surgery, but have read most of the posts about it that people have shared. While mostly everyone says they are very happy with their j-pouch, I have seen a few that have had a lot of problems. Mostly everyone says that they have to empty 3-6 times a day and 1-2 times overnight (some more some less) once they are completely healed. Nearly everyone says that the output is very loose or diarrhea, though I have seen a few who have output that is at least semi formed. I haven't seen anyone say that they have fully formed output. Some have reported that they have accidents at least overnight.

Healing time is another thing that I have seen that varies greatly. Plan on 2-4weeks, but seems like it takes longer for the number of trips to the toilet to stabilize into your new normal.

Wishing you all the best!!

Yea I was just worried about the urgency and pain, I do not want that again after 20 years lol. This year has been great without any of that and I do not want to live that again! I would have to get two more surgeries though since mine was 3 step. Hopefully they will do the take down soon after the second

Didn't they biopsy at the time of the initial surgery? I hope you get a good result so you can move toward the pouch if that's what you want. Each step takes some time to recover from. Step 2, for me, was tough because afterwards, you have a loop ileo and it's difficult to manage compared to the end (for some people it's not too terrible, but mine was nearly recessed). You only have that for about 8 weeks though, so that is good. After the 3rd step, the recovery time is different for everyone. I was out of the hospital in days, but i didn't get back to "normal" for quite a few months. I was able to live my life with excellent quality even fairly shortly following takedown, much better than with the loop ileo. That said, I could have had a good QoL with the end ileo if I had to keep it. I am happy I went through with the jpouch. Mostly because of supplies. I wasn't keen on being dependent on meds or supplies. If everything was free, that would be another story, but I always worried a ton about losing insurance and having to buy everything out of pocket.

I personally would be very wary about attempting jpouch surgery if I had Crohn's. Usually with Crohn's you would want to preserve as much as you can in case you flare up in another area - since Crohn's can cause inflammation anywhere in your system. Some people have had collectomy with Crohn's (often Crohn's Colitis) with good results, but it's not the normal course of action, usually you would have a resection and remove the diseased part, not the whole colon. So yes, I would make every effort to ensure it's UC prior to exploring surgery. Usually they will do an endoscopy, an MRE, or a pill cam. Of course, there are cases where people are diagnosed with Crohn's after the fact, but reducing the possibility of that happening is best. There is also the potential of having Crohn's of the pouch, but that's something you have to deal with if it happens. it's not too common.

As for steps, the jpouch procedure is typically done in 1, 2, or 3 steps.

1 step is fairly uncommon. I guess not a lot of surgeons recommend it and the results are less predictable. I would imagine if it were a good option, every surgeon would offer it, and every patient would get it. 1 step means you never have an ostomy bag. They do collectomy, make the pouch and connect you in the initial surgery.

2 steps is probably the most common. Many UCers are candidates for this. This means you have the collectomy and the jpouch created at the same time (step 1). The pouch is given 6 - 10 weeks to heal. Stool is diverted through an ostomy. The ostomy is called a loop and it has an end coming up from the newly created pouch, and one coming down from the small intestine. After the wait period, they connect those two pieces and close you up. That's a take down (step 2).

3 steps is the longest, and it may be your best option if you're not in great health, on prednsione, been dealing with a long flare... The difference is that they do only collectomy at step 1. Then you have an end ileo. They don't do anything to your rectum or build the pouch at that time. The end ileo has only one piece coming down from the TI. It's actually quite easy to manage. Then step 2 is the jpouch creation/rectum removal/loop ileo. Step 3 reconnection.

I think people go more at night because we eat during the day and transit time ends up making things more active in the evenings. I seem to go more after 6pm than I go during the day.

David you can eat anything after surgery. This week I had Chinese,rotisserie chicken,ribs,burger and dog,rigatoni for dinner. Imodium or something to keep stool from getting too loose can't hurt. Just expect loose stool. It's just u can hold it in now. Try cort enemas if UC flares bad,talk with Dr

They took biopsies at the first surgery and were leading towards crohns bc of a blood test? But I went back yesterday and now they are leading towards UC again. I have to set up an ileoscopy to take biopsies of my small intestine to make sure there is still no disease in it and another mre, so I won’t know for sure until they go in and look, if there’s still a doubt about crohns then of course i won’t go for the j pouch until it is 100 percent A UC diagnosis.

Mak37 said...
They took biopsies at the first surgery and were leading towards crohns bc of a blood test? But I went back yesterday and now they are leading towards UC again. I have to set up an ileoscopy to take biopsies of my small intestine to make sure there is still no disease in it and another mre, so I won’t know for sure until they go in and look, if there’s still a doubt about crohns then of course i won’t go for the j pouch until it is 100 percent A UC diagnosis.

The Prometheus blood test is very UNRELIABLE, some GIs won't use it anymore as a factor in deciding a Crohns diagnosis. There are no guarantees, just educated guesses.

I have chronic pouchitis with ulcers in my pouch, living with active UC was much worse. I am very happy with my jpouch.

Did those of you who underwent surgery go through every type of medication without success first?

ks1905 said...
I eat and drink whatever I want with my jpouch. I did not do that with my colon. I stay away from spicy food because it burns.

I have chronic pouchitis. My QOL is much better than when I had UC. I have no regrets. I NEVER wake up at night to empty and average about 3 times a day.

When you say it burns, you mean while it's digesting it burns, or when you have a BM it burns?

How long have you had the pouch? Is there anything you can do for the pouchitis?

07kr5 said...
My diagnosis was also a bit unclear (the doctors thought it was UC, but there was a small possibility of Crohns), which is one of the reasons I had a 3 step surgery. After the first surgery they can look at the removed colon in detail and hopefully come to a definitive diagnosis.

Since the first surgery only removes the colon, you can then either decide to stick with a permanent ileo (which means no more surgeries except for removal of rectum and closing everything up), or proceed with more surgeries to get a j-pouch.

Can you explain why one would stick with a permanent ileo over the j-pouch? I'm not too familiar

ks1905 said...

The Prometheus blood test is very UNRELIABLE, some GIs won't use it anymore as a factor in deciding a Crohns diagnosis. There are no guarantees, just educated guesses.

I have chronic pouchitis with ulcers in my pouch, living with active UC was much worse. I am very happy with my jpouch.

This is the 2nd time this week I've heard someone say how unreliable the Prometheus blood test is. Glad I didn't waste my money on it.

Wish there was a perfectly clear way to determine the difference between the 2 diseases

I did not want to go on Remi or Humira bc they lower your immunity. My Gastroenteroly recommended either one in recovery room after my last colonoscopy. I lost my spleen playing football when I was 18yo. Spleen helps the immune system. So if I went on either one plus no spleen equals Bad News if I get pneumonia or any other illness. So being colon was on its last legs it was time for surgery. Remi or Humira might of delayed surgery for me or even made it where I never would need surgery but that's not a chance I want to take so surgery it was. Life is good. No anxiety. No need for toilet radar while driving. I'm 59yo. Had UC 32 yrs. I made the correct decision. Ribs and wings while I watch football today(both New York teams suck so hope there's a good game on). Good luck

David, I got surgery because I was on a large dose of IV prednisone and oral prednisone for 3 months and it was no longer working, I tried humira and it did not work, I wanted to try entyvio but they told me I didn’t have time to try it, my IBD was also giving me blood clots in my lungs because of the inflammation and being on blood thinners made things worse, this is why I got the surgery, some people like surgery and some will think it’s the end of the world (I have had a great year with surgery and I am very happy I got it I haven’t taken any meds) I have the bag right now and if I can’t have the j pouch then I won’t be upset because the bag has saved my life but I would like to see if it works mostly because of vanity reasons!

Thank you all for the responses

07kr5 said...

David1991 said...

07kr5 said...
My diagnosis was also a bit unclear (the doctors thought it was UC, but there was a small possibility of Crohns), which is one of the reasons I had a 3 step surgery. After the first surgery they can look at the removed colon in detail and hopefully come to a definitive diagnosis.

Since the first surgery only removes the colon, you can then either decide to stick with a permanent ileo (which means no more surgeries except for removal of rectum and closing everything up), or proceed with more surgeries to get a j-pouch.

Can you explain why one would stick with a permanent ileo over the j-pouch? I'm not too familiar

I think choosing whether to go with a permanent ileo or a j-pouch is a very personal decision. There are pros and cons with each. Without going into too much detail, I think a permanent ileo is probably the "safer" choice. Fewer surgeries, less risk of any complications, and you get to keep as much small bowel as possible. The downside is obviously that you will have to use an external appliance. I think for a lot of people it's just a matter of vanity. The permanent ileo was very easy to live with when I had it. I had literally zero issues for the year and a half that I lived with it.

With that said, a well functioning j-pouch is much preferable in my experience, but I think for almost everyone living with a j-pouch will have its ups and downs.

Are you able to detach the external appliance yourself? I guess you must be if you have to empty it daily. Just wondering how one would take it off if they are trying to have sex with their partner or for whatever other reason they may want it off for a bit.