Hi.  I too, am from NJ.  Mynson is being treated in NYC at Weill Cornell.  There are no pouch experts in NJ.  And if there were, I don’t think I would be using them.  Mt. Sinai is a bear to get to from NJ.  The best pouch expert that I know of is Dr. remzi at NYU. He was previously at the Cleveland Clinic.  I think you are going to have to be tied to NY.  We used to be treated at RWJ in New Brunswick but all the docs we used have left.  Are you driving into NY or taking the Train?  I live down near Princeton and it takes about -1/2 hours each way depending on what train we get.  The only time I will drive in is if he is having a procedure.  I hope this helps.

dianne

One other thought.  How old is your son?   We used to use Joel Rosh at Morristown.  Wonderful doctor.  But he is peds only.  But again, as far as surgeons go, I would stick with NY.  Some times we are in the city 3 times a week.  He has been hospitalized for as long as two weeks, several times and I have stayed the entire time, never leaving the city.  So I hear you with respect to how difficult it is being in the city, but I really feel that it is the best place for my son.  

Yes Dr Rosh in Morristown is who we see locally too. Love him. He is very jpouch knowledgeable and was trained by our GI in NYC.  We drive in to Mt Sinai.  Right now my son would not be able to take the train.  He has a lot of discomfort from all of his issues.  At least in my car he can put the heated seat on and recline. Normally we wouldn’t mind the drive, but the trips have become frequent and his discomfort is worse. It took 3 hrs to get home from his entyvio infusion last week and it was hell. My son is 18 but is still seen by pediatric GI.   I too stay with him when he is hospitalized.   The hospital is old but the nurses are the best.  What issues is your son having that you are in the city 3x a week? I live in Hillsborough, just north of you. I would love to chat. 

Momma, we should meet up for coffee!  My son is 27 now.  His issues are over 20 years now.  For the last three of the past four years he had been very Us, having his lg intestine removed, j pouch created, back to an Ostomy, back to the pouch.  Four eight hour surgeries in less than 20 months.  Obviously this is the short version.  After the third surgery, he was continuously in and out of the hospital. In NY.  Fistula, pain, procedures.  Anything you can think of.  And more.  Right now, he may have another fistula, he is having frequent bowl movements, lots of pain.  His inflammation level is 750 when it should be under 50.  He has another leak in his small intestine. So he is in and out of NY at least once a week, meeting with the surgeon, IR, the gastroenterologist, MRI’s, CTscans, etc.  and there are lots of other problems.  As you can imagine, we are completely worn out and I am mentally spent.  

We should talk in person!

dianne

Wow, what a rough time you and your son have had. We just admitted Vinnie back into Mt Sinai today. He is in a lot of pain, won’t eat, down to 104 lbs. Going to have scope to see what’s going on. May go on TPN. Yes, once we are back home I will pm you. I completely understand the stress and anxiety  

Kim

The good news is inflammation looks better than it did in December and it is all down low. Nothing looks like chrons. They found what they called a lumens at the anastomoses. From what I understand it is like a sinus but wider. We need the surgeon to look and see what can be done to fix. It’s good we have more information but still scary because we don’t know the solution yet. 

Wow, Kim this is a new one for me.  Sounds like a fistula.  Never heard the term lumens.  Poor kid. How old is he?  My son did 8 weeks of TPN a few years ago.  It did help with weight gain, though that was never a huge issue with him.  He is severely over weight, even with all his issues.  At one point he lost over 130 lbs and looked really really good,but sadly, he gained it all back, in less than a years time!  It sounds to me that the lumans May be holes in holy shit intestine.  If you want to switch over to Weill Cornell, let me know.  We have a wonderful tea of surgeons.  Also, the pouch expert is at NYU, Dr. Remzi.  

Dianne

The term lumens is new to me too. They showed me the images and it looks much wider than a sinus or fistula and doesn’t connect to anything. My sons surgeon is out of town but we are going to call my husbands surgeon to get his opinion. My husband has a jpouch too for 13 yrs and is doing very well 

A lumen is just the the word for the inside of a tube. It sounds like they found an opening but weren’t prepared to declare what is was (fistula, sinus, etc.) just yet.

Going back to a bag at least for now. He’s in way too much pain. We will figure out what can be done to fix things later. Right now this kid has suffered too much. 

Kim, Im so sorry at this latest development.  We did the same thing.  But after we did 8 weeks of TPN.  It’s a long haul.  How old?  If I can help in any way, please let me know.  You are in a difficult position. I do believe going back to an Ostomy is a good decision.  He will feel much better.  These pouches are very delicate and in my opinion does not take much to set them off.  My son is having some issues right now, but we have a lot of other problems besides his health.  It all has taken a terrible toll on our family.  Please try and remember to take care of yourself.  It’s important.  While you are in the city, find a yoga class, get your nails done.  Get a massage.  Let me know f I can do anything.

dianne

Thanks so much Dianne. He is 18. Tomorrow they will divert. Praying for some relief. I just go out for an occasional glass of wine to help me cope.   I was seeing a psychologist. The depression and stress is overwhelming. I can’t enjoy anything, not even food.  I’m losing weight too. Every day reminds me of the movie groundhog day, the same dreadful thing over and over. The best part of the day is sleeping when I can. Ugh. Brighter days ahead. 

Kim, I know all too well.  Unfortunately for me, I gained weight!  I can promise, it will get better.  Wish I could say when.  Jeffrey is having issues with his pouch as well, but because of his age, he is 27, I am out.  He has pushed me out of his life even though we all live in the same house.  For 20 years I managed his health care , spent every night in the hospital with him.  Went to every doctor’s appointment.  Did it all.  But I guess because of his illness, or just never having to deal with consequences, he has become abusive to me.  I get he is  angry and henhas every right to be.  He has been sick since he was 6.  It’s been a hard life for our kids, but it has really taken a toll on our life.  That’s why I suggest you take care of yourself. And don’t allow bad behavior. i made excusses for it and now I’m  paying a huge price for it.  Just makes the illness harder to deal with.  Keep in touch and let me know if I can help.  💕💕💕

I am the only one that my son feels comfortable venting to and I take the full brunt of his anger and frustration. He also takes advantage of my willingness help. My husband tells me I do too much for him. But I feel so helpless that I do whatever I can to help him. 

Do him a favor and don’t allow it.  My son did the the same to me.  He vents all sorts of nastyness to me,  and my husband allows it.  My husbands first reaction is to look at me and tell me “What did you do”. Don’t let him guilt you into doing everything for him.  Hold him accountable for his behavior.  I speak from knowledge.  Because my husband always defended my son’s behavior and ALWAYS took his side, my kid is now so verbally abusive to me that I Am not safe in my own home. I’m only saying this publicly because, as moms, we go way overboard to protect our kids.  Our kids, and all kids, quite frankly, need to learn personal responsibility, manners, and consequences.  Sadly,my husband did not support my efforts or protect me, and I am now being abused, actually by both of them.  I do not feel safe in my house, and afraid to the point that I feel threatened for my personal safety.  Don’t let it get that far, and believe me, as he get older, he will get more angry, and will get more abusive first with his mouth, and then perhaps with his fists.   The shit show that happened in my house this week never would have happened if my son was held responsible for his actions.  Please, do your child a good service and make him understand that you did not cause his illness, are more than willing to help him with what ever he needs, but you will not be bullied or abused by him.  I’m there is you need me, but I will not be your punching bag.  It sounds like your husband is on your side, sadly, mine never was.  Oh, and my husband has never ever taken a day off from work or spend one single night in the hospital with our son!  I did it all!  The only time he showed up was if he had surgery, and then insisted on staying in a hotel.  After a $3000 hotel, bill I sent him home. And moved into Jeffrey’s hospital room for another week.  And still got dumped on!  Please, don’t let it happen to you.  I feel terrible for my so. As well, and to add to the UC, he also has Aspergers and PSC which is a potentially fatal liver disease.  I didn’t cause it, give it to him, but I do wish I could take it away from him and put it on me.  He never deserved to be this sick in his young life and have all these issues, but the bottom line, I didn’t cause it.  Do not feel guilty.  

That said, I hope the procedure went well today and that Your son finds some relief.  

Dianne

OMG so sorry to hear that you’re going through all of this. I hope you have support from other family and friends.

I do way too much for him. But I feel helpless otherwise so I don’t mind doing what I little I can.  My husband does have my back and supports me. 

He had his surgery today and is back to an ostomy for now. We will take one day at a time and focus on healing and eating and getting stronger.

I hope that the situation improves for you. I will reach out to you once everything settles down here.