Hi Susan,

Your story is a tough one.  Is there an option 3?  To go on very strong antibiotics for a month and avoid surgery.  Because what I am reading both of your options are big surgeries.  Can they try more stuff to clear the abscess and fistula?

Option 3 was discussed. Letting it heal with the drain in and IV antibiotics. But because it's connected to the j pouch there is only a very small chance that it could heal because there's stool going into the abscess. They're still growing cultures but so far found stool and yeast.

I am on strong IV antibiotics now. The hospital will put a pic line in and I'll stay on them for 4-6 weeks. Over the past 3 years it's taken me long to heal through every stage of the processes. So given my history,  because of radiation, I don't think I'll heal up. I so do wish that would work!

Susan, this is an overwhelming set of events and choices. I can’t even imagine what you’re going through. It sounds like the pouch-salvage path carries a much higher risk of failure, but it’s the only path that offers the possibility of avoiding a permanent external ostomy. Much of this hinges on how bad having an external ostomy seems to you, which only you know.

Was your pouch actually irradiated? The timeline I’m understanding suggests that the radiation occurred before the colectomy and pouch formation, but I may well have misunderstood. Do they have a theory about how the pouchoscopy is related to the abscess (e.g. a small perforation or pouch wall injury)?

I think either path is reasonable, but they both entail difficult trade-offs. Honestly the one that “feels” best is probably correct for you, and the future will have its way with you as it does with all of us. I hope it turns out remarkably well.

Wow - it’s a hard call.  Long answer here.  Firstly, I feel for you.  I have a long 2 year saga on getting my pouch so I have a little sense of the torment you are going through.  My first surgery went badly and they could not get out my colon, my tissue was too friable from the steroids.  So they closed me up and left my diseased colon in, diverted it, and gave me a temporary ileostomy for 14 months, and told me to lose 80 pounds.  I suffered with horrible colitis in my detached colon, and had a bag at the same time for 14 months.  They also took me off of the steroids to lose the weight.  I actually succeeded at losing the weight and had two more surgeries to get my Jpouch.  Anyway - I will give you my opinion, and I am not super qualified medically to give an opinion, but I will try.  I know you just want to be well already!  

I would chose the temporary ileostomy if it were me.  It would indeed be a lot to go through to get a temporary ileostomy for a few months and let everything heal up.  However if it works you get a second chance at keeping the JPouch - which could work for many good years.  If you go with a permanent ileostomy, (which could certainly be a great life also), it is permanent and you can’t really ever go back to the JPouch given your history.  I don’t think they would recommend a JPouch redo down the road for you.  So, you forgo your shot at the JPouch, which had been finally working well before the abscess if you go with the permanent ileostomy.  For me, I would say, I will give it one more try with the temp.  If it does not work out, I blow 6 months and suffer, and then get the final permanent ileostomy and never look back and never second guess it.  I would know I tried, and that would leave me with a clean mind.  I would ask myself - Can I go through some more pain and risk to keep the Jpouch? or am I done with this hell.  If I go with the permanent, every time I change the bag will I wish I gave the JPouch another try?  For me, I would hate giving up the chance of the JPouch healing up with one final last try.  The only way I would go with the permanent is if the surgeon told me that I had a greater than 50% chance of it failing.  I would get a second opinion at a big JPouch center at Cleveland Clinic, Mayo Clinic or NYU with Dr. Remzi if you are able - even over Zoom if necessary.  Best of luck.

Hi Scott,

As far as the temporary ostomy went, it was awful for several months. Because of the antibiotics for an abscess,  I had a yeast infection around it which was excruciatingly painful. I ended up having the temporary ostomy for 15 months and things got better. I learned how to care for it pretty well. I did not like it at all. It was retracted and just a beast to care for! But I did my best and was ecstatic for my takedown.  That ended up being a beast too, but I gave it everyrhing I have.  I will do that with whichever decision I ultimately make.  As far as the radiation, I actually asked one of the doctors that today. She said that my abdomen was radiated and that it affects the entire region. They did some higher radiation too. My surgeon thinks the radiation is causing the tissue to be friable. The cuff was definitely radiated and was a mess. That is where the hbot really helped. I don't have any burn, bleeding or fissures anymore.

I have until next week to decide.

Scott,

One more answerfor your question about the pouchoscopy.  My pouch punctured from the biopsy. So this is heavy on my mind. What if I go through the drain, the IV antibiotics and the temporary ostomy just to find myself in the exact same place next year when I get the pouchoscopy.  Perhaps I can sign something so  they won't take biopsies. But then that's how they can early detect cancer. I'm trying to weigh risk versus benefit.

Doug,

Seems like you've had a tough road too and worked hard through it. I was thinking exactly what you said. Just do it and know for sure. I totally agree but theres just not data out there about pouches with radiation. What are my chances? I don't know. Also  that would end up being 3 more abdominal surgeries. I like your idea about getting a second opinion from one of the doctors you suggested. Do you know how to go about making that happen. I wish I had my computer! I don't have much time, but I do have some time.

Susan, one question you could ask someone like Remzi is whether a pouch revision is an option. You make an appointment just like any other doctor, but I don’t know how promptly he could see you/talk to you. Since you are considering foregoing future pouchoscopies you might be able to make that choice less risky by removing the rectal cuff and hand-sewing the pouch to the anal canal. Remzi would be the ideal surgeon for that procedure, if he thinks it’s a reasonable path. The abscess complicates this, of course.

Scott, I'm going to meet with a different surgeon this afternoon and have my questions ready. I will continue having pouchoscopies, but would like to forego the biopsies for a year so that my pouch has more healing time. I spoke with my surgeon this morning about this and she agreed to this as long as I kept up with all other cancer screenings.

I spoke to my surgeon in the past when my cuff was a mess about pouch advancement and chose to do botox and Hyperbaric oxygen rather than have the incontinence risk. It ended up being a great decision. My cuff is doing amazingly well. The treatments healed the fissures and radiation damage. Also, the biopsy that caused the abscess was of the pouch not the cuff. I'm starting to lean towards getting the diversion to heal up the pouch and resolve the abscess. It's been so overwhelming to think through.  Thank you for your input!

Susan

I've decided to get the temporary ostomy and give my pouch a chance to heal. My surgery is scheduled for tomorrow afternoon.

Thanks for the input and ideas. They were helpful and encouraging!

Susan

I pray this works for you and I know that you will feel better very soon.  This decision will preserve more options for you.  In the end, you can always go with a permanent ileostomy if the JPouch fails, and the permanent ileostomy would be the perfect choice at that point and it could work really well.

@Susan L how are you? How did your surgery go? Who is your surgeon?

Here's a little bit of my story. I don't know if it's relevant but I had a J-Pouch redone last week with Dr Remzi. I'm waiting for take down and I hope it will be well. My J-Pouch wasn't punctured though, in fact he was able to keep it. In my case, the rectal cuff was too long and my J-Pouch somehow twisted.

Hi Andreita, I wondered if I could send you a private message? I'm sending you healing thoughts and energy! 🙏🙏

Andreita,

My surgery went fine. The surgeon saw something odd that wasn't there one month prior for the pouchoscopy.  There were 4 tribeculations on the pouch. They weren't there before.  She showed me pictures of them. Hopefully time will heal them and strengthen my pouch. Have you ever heard of anything like this?

How did your surgery go?

Susan