Hey there. Just wanted some
ClarificatiOn , so I
Can give any feedback that might be helpful. They did remove colon and created a Jpouch. You then had gastric bypass. Since then after many tests they found a leak from the pouch? Have your surgeons mentioned what are the next steps?

Such as revision of jpouch?New pouch or anything else?

My spouse had had a leak found far to long after his first surgery and has gone trough the tuff decisiOn making Process. And we look back and wish we had made some different decisions so if you can claify about what your reasons are for going some where new, i would
Live to share our urgent decision to go to mayo and the confidence we have regained from our new team out there!

Jen, I am sorry to hear what you have been through. Unfortunately, it sounds very similar (in the j-pouch aspect) to my daughter's situation. She has had nothing but trouble since the 2nd of 3 steps. She feels horrible, and has pain a lot. We took her to Cleveland. WONDERFUL place, btw. The surgeon there thinks she has a tiny leak that is just brewing causing her symptoms. She had an abscess after takedown and they never did ANY looking into the cause, just put a drain in for almost 3 weeks and called it good. She had 2 good months after the abscess was drained and it has been horrible since.

Anyway, she is scheduled for surgery at CC the 18th of this month. The surgeon isn't guaranteeing this will help, but he feels very strongly. He will likely, detach her current pouch, clean the anastamosis area and hand sew it back together (her pouch isn't the problem, that looks good) after removing the rectal cuff. She will have an ileostomy for at least 3 months (depends on her schedule). She is 19, trying her hardest to continue college, but feels at this point she isn't out anything as her QOL is so poor right now. So, she has decided to go ahead with the surgery and hope for the best.

Definitely go to Cleveland. I'd travel around the world to get there if I had to. Good luck!

@Kite - Yes, I had a jpouch 6 1/2 years ago and then I had a vertical sleeve (different from gastric bypass) and that is unrelated. Nothing was found in previous tests. I had a scope probably 6 years ago after surgery and was told all was fine. Nothing abnormal showed on other tests for my sleeve surgery, or tests I had for my arthritis, anemia, etc. My blood work showed low iron for about 2 years, and then a higher than normal RH factor hence the rheumatoid arthritis diagnosis. But nothing else too major. I've had cramping on my right side on and off.

I want a second opinion because my surgeon admitted he has never fixed a pouch and is unsure what to do. He threw out that maybe 3 surgeries, one drain tube, then repair the pouch, then re attach. I just want someone who knows what they are doing. I DESERVE someone who knows what they are doing. I am just so apprehensive to put myself through all that again. I feel fine now, overall good. Not perfect, but just hate to go through the misery again. My other surgery was so botched that I can't imagine going through it again.

@ Kelsie - can I ask what dr you saw? I have an appointment with Dr. Scott Strong.

You deserve the best surgeron, team facility and care. After 11 surgeries and same Aftercare plan with further complications, it was so hard to think about having to transition care somewhere else but my 27 year old husband deserves it and to be set up to utiliZe the time inbetwren surgeries to regain strength and learn from spencers body ad tweak care they just were not able to collaborate to best serve a critical patient that didnt need to suffer and is so eager to get back a quality of life.

Going to mayo was scariest thing as his fiancé / almost wife I have ever done. Asking him to trust me in finding the care he needs and wasn't getting from
Someone who we had trusted for so long and advocated so much to in order to avoid complications, and once again beg him to find it within him to not give up or settle and once again find the energy and fight to meet a whole new team, care modality and treatment half way across the country from our home while
in Maine at his weakest state of this long journey. I am a clinical social worker and I just can't believe how much he has had to suffer and endure, with friend and family begging to just incorprate what spencers own body has taught us all. I couldnt believe the risk the surgeon was going to take when his nutritional state was the worst it had been in yeabecame the whole reason Spencer fought everyday with a huge fisula next to
Ostomy was to get his body as strong as it could be for a very risky surgery that needed every chance to heal correctly. When they couldn't recognize our
Concerns and were not concerned about taking out bowel for re 11 time with now the reality he will not absorb as much or have much intenstines left to mess w if complication occurs again, i said he already is on tpn and iv fluids which I begged for bc his fistula outputs so much and ostomy isn't outputting anymore and the adhensions when he tries to eat make it so painful ESP w fistula outputting it, I know we had to just say no. I just knew if I could find the energy and put aside my anger and saddness about a respected hospital was nOt invested in offerfing, I just knew if we were going to have to make a change while spenc was so weak and i was so exhausted from seeing my best friend settle for care and a life which was non exsistant, i just had to make going to the first or second best facilities for gi care, and treatment, become a reality.I needed him to feel empowered and given the care knowledge and respect he has always deserved and receive care that respects multidisplinary approaches, can create options for improving quality of life by listening
and learning from the patients complicated medical past. I never really lose hope because I can't because I have to hold it
For Spencer but I did and I couldn't believe the time we had lost and I will not allow
another surgery with so much at risk this time to happen without making sure we understand
the risks and benefits Were discussed and egos would be set aside and working a specialists who understand surgery might be successful but post op healing and complications were the risks which we needed to have confidence he wouldn't be entering a surgery at his weakest state with 10 previous post op healing issues, not being considered. Like hello this is spencers life and body, dOnt tell
Us you are going to fix it in surgery this time when spencers case has been more isolated and complicated.

We went to mayo 4 weeks after I knew I
Couldn't be confident anyone was helping us get spencers ready for surgery in 8
Weeks. We arrived to Minnesota and guess what he had blood
Clot and was dehydrated and malnutrioushed and even combative at the first day of appointments with the specialists we flew all the way to see and talk w. I was devastated we lost our chance
To get there opinion and worried about his presentation if I didn't get to share his medical past. Well they didn't blink an eye didn't make me scared or feel alone
They knew everything about Spencer because they read 200 pages of his history. They simple supported me and made priority spence getting immediate inpatient care and promised they would be the ones who would care for him
Inpatient too. And they did. They totally are patient centered and family oriented and work effortlessly with every specility to care for a complicated case. I honestly couldn't believe we were at the mayo with the most knowledgable and just overall interested and patient professionals making every effort to improve not
Only
Spencers life But
Mine. As a social worker I know this is the care everyone deserves but unfortunately is rare these days in our health care system. But I learned so much and we were given some options That we needed. I am so sad how much my boyfriend has suffered and mad at myself for recognizing our
Old team wasn't ever going to do anything different, but I am so proud of spencer for not giving up and having a whole team remotely monitor Spence more closely than any place locally in Boston has ever done to ensure progress and build trust. I hope spence will also feel that same trust and hope as he works w them as he missed alot of great experiences during his admission at mayo because so
Sick, but he deserves it.
So do it! Get the care you deserve.

co
timing of next surgery was after efforts to set spencer up for at least a chance of healing
and participate in his care that needs invested professionals to see his strengths and understand that he can adjust but needs to be given the knowledge and care and needs to trust his care is with specialists that have the time, creativity, resources, knowledge and the individuals whole body in consideration And not only acute situation future leading major decisions and how his whole body is responding to all the trauma.

Mayo was everything I knew Spencer and myself deserved. It doesn't matter how far a medical team is away as long as you have the best creating the plan And willing to collaborate to best care for there patients as a whole. Everyone deserves to get care and face medical complications with confidence that they will not just let someone decompensate when some things goes wrong without utiizing every effort and resource within there power to lessen extra sufferin and hardship.

After 4 years out from takedown, they have also found a small sinus(leak), its not causing any real issues, Shen has tried 2 needle/knife procedures to repair it and said might need major surgery if unsuccessful. My surgeon said if its not causing issues to just leave it alone unless it causes issues down the road, like pain, and abcess. he believes it was there from initial surgery when i had a leak an abcess. MRI shows to be same sinus.

Jen, we saw Dr. Remzi. I sent you a PM too.

I had the surgery in 2 steps but after the second step I had a lot if lower back pain. At first they told me it was my body trying to learn a new way to function and it would go away. When it didn't and got worse, they did a ct scan and found evidence of a leak (air bubbles and a pocket similar to what you described). I was admitted to the hospital and got a PIC. Couldn't have anything PO for about 4 weeks and was fed and hydrated through the PIC. It sucked! They hoped the leak would heal itself, which it did not do. So I had a 3rd surgery to fix the leak and ended up with a new Ostomy and a drain from the pocket where my body had walled off the fluid from the leak. They hoped the drain would not only drain the infection, but also hold the leak closed so it would heal. I went to Cleveland clinic to have one of their docs consult on the plan and she said it was most likely a leak at the tip top of the pouch - not super rare, but impossible to see on a scan. She suggested waiting 6 months to let it heal then have another takedown. So I followed directions and had the final surgery in June. I was fine for about 4 weeks when the old back pain came back. Another ct scan showed an air bubble again. Doc advised leak was still there but very very small and wasn't allowing fluid through, just a little bit of air. So we started xifaxin in the hopes it would strengthen the wall back up to where I was during the initial 4 weeks. So here I am today taking the med but symptom free! I'm telling you this because during all of that, it was hard to find info on leaks and I was losing hope that things would work the way I wanted. Don't lose hope. Find a doc (Cleveland clinic is a great place - it's where my surgeon used to work) that you trust and go with it. You will find your way through :-)

Thank you all for your comments, It's good to know I'm not alone in this. Yes, it is very hard to find anything about leaks. I am more encouraged than before and hopeful to get this resolved. I appreciate the support!!