Excellent question!! Before I give you a good answer, I need some questions answered:

How bad is the Crohns in your j-pouch?

Are you currently taking medication for your Crohns now?

Where is the Crohns located in the pouch?

I had my pouch disconnected due to severe perianal inflammation. I also have a complex fistula coming from my jpouch and have a couple of setons in me to drain the fistulas. My GI doctor said he is almost certain it is Crohn’s disease of the pouch because I also had pouchitis symptoms. He said pouchitis plus fistulas is usually Crohn’s Disease. I am currently going for Infliximab infusions. He said the goal is to reconnect me to the jpouch by next summer. I said to him isn’t the jpouch only for ulcerative colitis? He said since I already have the pouch it can be reconnected if I completely heal, but he could not guarantee the that the inflammation would not return.

@AL77 posted:

I had my pouch disconnected due to severe perianal inflammation. I also have a complex fistula coming from my jpouch and have a couple of setons in me to drain the fistulas. My GI doctor said he is almost certain it is Crohn’s disease of the pouch because I also had pouchitis symptoms. He said pouchitis plus fistulas is usually Crohn’s Disease. I am currently going for Infliximab infusions. He said the goal is to reconnect me to the jpouch by next summer. I said to him isn’t the jpouch only for ulcerative colitis? He said since I already have the pouch it can be reconnected if I completely heal, but he could not guarantee the that the inflammation would not return.

Okay thank-you for explaining fully. I also have Crohns disease.

I would recommend this: I do not think its a good idea to get your j-pouch connected, especially since you have perianal disease. I seen a video with someone that also has Crohns Disease and he had perianal disease- due to the perianal disease his doctor did not recommend him to get a j-pouch but to have a ileostomy like I have. Since you are already having issues and are currently taking biologics, I would strongly recommend a J-pouch removal and to have a permenent end ileostomy, that is what I would personally do. If you feel like you have to see this journey through with your J-pouch to not have regrets in the future so you can be able to say, I tried everything and gave it all I could, then I support that too. I think both choices will have consequences but only you can decide which is better for you. Whatever choice you decide, please do not keep an unused j-pouch inside you permanently, that is not a good idea at any situation.

I would suggest doing a pros and cons list of keeping J-pouch or getting rid of j-pouch, I think that strategy will help.

Let me know what you decide and let me know if you need help

I know it is risky to reconnect. My doctor said  the jpouch can be kept in disconnected because there is very little chance of cancer forming in it. So I can stay the way I am with a loop Ileostomy, reconnect to the jpouch, or do what you said, have the pouch removed and get a permanent end Ileostomy. I’ll see how it goes over the coming months.

@AL77 posted:

I know it is risky to reconnect. My doctor said  the jpouch can be kept in disconnected because there is very little chance of cancer forming in it. So I can stay the way I am with a loop Ileostomy, reconnect to the jpouch, or do what you said, have the pouch removed and get a permanent end Ileostomy. I’ll see how it goes over the coming months.

I would not trust that idea of keeping an unused j-pouch. That is definitely not a good idea. I would get the pouch taken out and get an end ileo.

And okay sounds good, let me know what you decide.

Okay, btw did you have a jpouch and had it removed? What surgery or surgeries did you go through?

I was diagnosed with Crohns last week and I'm having my J-pouch excised and I'm getting a permament ileostomy.

Wow, and I thought I’ve been through a lot. Good luck to you. Let me know how everything goes. I might have to have that surgery at some point.

@AL77 posted:

Okay, btw did you have a jpouch and had it removed? What surgery or surgeries did you go through?

Never had a J-pouch. I had Crohns right from the start, my only surgery was having my colon and rectum removed with a permanent end ileostomy. I do not have a barbie butt yet but I am thinking about getting one.

@AL77 posted:

Wow, and I thought I’ve been through a lot. Good luck to you. Let me know how everything goes. I might have to have that surgery at some point.

@Andreita Sounds like a perfect match for you in guiding you through this difficult journey as well since she is almost your exact situation. I am glad her doctor is doing the right thing. Maybe she can give you her surgeon's name.

This is my timeline

Diagnosed with Ulcerative Colitiis- Nov 2003

Emergency surgery in Jan 2004 to remove my colon and rectum. Temp ileostomy

April 2004 - Jpouch created and takedown

Had chronic pouchitis for much of the 20 years with the Jpouch. Took Ciipro everyday for all those years to keep it under control

July of this year I developed a huge anal abscess. It turned into a complex fistula with 3 branches coming from my Jpouch. Diagnosed with Crohn’s Disease of the Jpouch

August of this year had  3 setons placed in me and began Infliximab infusions. It didn’t work . My perianal area got super inflamed along with stool leakage and incontinence. Quality of life was zero. I lost about 30 pounds.

October - Had fecal diversion, Jpouch disconnected and got a loop ileostomy

I now feel pretty good. My perianal area has healed. Still have the setons in and continuing Infliximab infusions once a month. I gained most of my weight back

Possible Jpouch reconnection if everything heals.

It’s best not to get ahead of the information, I think. Regardless of the diagnosis the immediate goal is to get the disease under control with infliximab. If that works extremely well then you’ll have much better information about your options and their risks and tradeoffs. Crohn’s-like disease of the pouch is not the same as Crohn’s disease, though they can be very similar and not everyone uses the terms the same way. The fact that many surgeons choose not to create pouches for folks with Crohn’s disease has little bearing on your choices, since you already have a pouch. And sometimes a diverted pouch gets inflammation because of the diversion (“diversion pouchitis”).

Let’s talk about this more when the infliximab has had time to work.

Yes, my doctor said that too. We’ll see how the Infliximab goes. No guarantee on a reconnection. He is happy I gained most of my weight back and my skin has healed quickly. I think Ilex skin paste going out of business destroyed me. I had the butt burn under control for most of the years. After Ilex stopped production I tried almost every single cream there is and none of them worked to extinguish the butt burn. Maybe that caused the abscess and the fistulas.

There are different causes of butt burn. Some of them might be improved by cholestyramine. Maybe it’s worth a try? If the skin is very irritated it can take a while to tell whether something is helping or not.

@AL77 posted:

This is my timeline

Diagnosed with Ulcerative Colitiis- Nov 2003

Emergency surgery in Jan 2004 to remove my colon and rectum. Temp ileostomy

April 2004 - Jpouch created and takedown

Had chronic pouchitis for much of the 20 years with the Jpouch. Took Ciipro everyday for all those years to keep it under control

July of this year I developed a huge anal abscess. It turned into a complex fistula with 3 branches coming from my Jpouch. Diagnosed with Crohn’s Disease of the Jpouch

August of this year had  3 setons placed in me and began Infliximab infusions. It didn’t work . My perianal area got super inflamed along with stool leakage and incontinence. Quality of life was zero. I lost about 30 pounds.

October - Had fecal diversion, Jpouch disconnected and got a loop ileostomy

I now feel pretty good. My perianal area has healed. Still have the setons in and continuing Infliximab infusions once a month. I gained most of my weight back

Possible Jpouch reconnection if everything heals.

Damn! you went through hell and back! I am surprised after all of that you would even want to go back to J-pouch lol. Everyone is different it seems.

@Mary2017 posted:

@Andreita Sounds like a perfect match for you in guiding you through this difficult journey as well since she is almost your exact situation. I am glad her doctor is doing the right thing. Maybe she can give you her surgeon's name.

I'm going with a local colorectal surgeon. Dr Remzi was good for jpouch redo but that's not what I'm doing now. I gave the jpouch a good shot, I waited it out but the quality of life just isn't there for me. I felt best with an ostomy.

I’ll see how the Infliximab infusions go and listen to my doctors on what they think my success rate will be if I reconnect to the jpouch.

@Andreita posted:

I'm going with a local colorectal surgeon. Dr Remzi was good for jpouch redo but that's not what I'm doing now. I gave the jpouch a good shot, I waited it out but the quality of life just isn't there for me. I felt best with an ostomy.

Yeah I mean that I think you are a perfect match for the person that wrote this post just in case they get in your situation too.

Sorry the j-pouch did not work out for you! And sorry you have Crohns

I hope the ostomy will be great for you like it is for me

@AL77 posted:

I’ll see how the Infliximab infusions go and listen to my doctors on what they think my success rate will be if I reconnect to the jpouch.

Okay, just remember that doctors dont always know everything and its important to trust yourself on what you feel is best for you as well. I try to always follow that inner voice I have and its been a great help for me. Listen to that inner voice.