Redo Jpouch surgery at CC July 12

Sorry somehow, had a duplicate because it told me that the title was already done before. Can one of the moderator either delete this post or the other one that was posted with the title being Redo Jpouch surgery for my birthday? Sorry about that.

All my hopes for an excellent outcome for you Marius, you deserve a break here...happy birthday you too...lets hope that this is then end of chronic pain and the start to a painfree life.
Sharon

Oh my you poor thing. I am sorry you have been through so much. You are in good hands there at CC. You have the best now and it will get done right this time. I'm sorry I don't have any advice for you....just to stay positive. Wishing you a speedy recovery. Let us know how you make out.

Deleted your other post, Marius, no problem.

I am so sorry that you have been having such a difficult time with your j-pouch. I am sure it is no consolation to be in the minority who have failed pouches. But, you could not be in better hands, I think, and it seems that Dr. Shen got to the bottom of your chronic issues very quickly. I hope that all goes well with the redo and you can begin to live your life again.

Jan

I would just put all those past issues behind and pretend this is the first time you are having surgery to create your jpouch and go into it with a positive attitude. I've seeked legal advise for the terrible treatment I received in the hospital and even the radiologist not following my surgeons orders to keep a drain in for my infection and he removed it so I had to get a repeat procedure to leave a drain in the next time around. They even fired the staff the day after. I also had pictures of how unsanitary the place was and all the pain and suffering I went through due to the incompetence of the staff. The lawyer advised me that this stuff happens all the time and even gave me examples of cases that were worse than mine that he thought would be a slam dunk that they lost. The the lawyers I'm speaking of are the best around my area. These Drs and hospitals are so protected that you have no chance because a while ago people sued the hell out of them for medical malpractice like crazy. I'm not trying to discourage you but I went to this lawyer with what I thought was enough firepower to put the hospital out of business and was told he wouldn't even risk putting down the money to take the case. You can certainly try if you think you have a case but just don't go into it with high hopes because that's what I did.

Anyway it seems like you have been through a lot of uncomfortable days in the past years and now is your time to get better and enjoy life like you originally planned. Believe and things will fall into place. Good luck my friend. You will be just fine I'm sure.

You should do just fine at the CC just as I did. The travel home was rough for me. I took me almost hours to make a 2.5 hour drive.

The only way to win lawsuits against surgeons is to get other doctors to testify against them. Each state has a time limit on how long you have to sue.

The best of luck on your upcoming surgery. Please let us know how everything goes. I hope you can enjoy your birthday before then too

Thank you everyone for the great advice and encouragements!! I hope everyone had a great 4th. I feel conformable being in the hands of the Cleveland Clinic. The staff is great there. Dr. Bo Shen is so down to the earth and boosts with confidence. Dr. Dietz is great and directly to the point. Haha, I'm making up my naughty food lists to eat now over the weekend, since I know I will be even more restrictive for a little bit soon. Even if I endure a little pain, lol.

Yes, I figure as much about a lawsuit. Thanks for the advice. I knew it probably wouldn't go anywhere. I'm probably just going to double check on a consultation and probably not pursue any further.

I hope everyone has a great weekend!!

Marius,

You are going to one of the best places for a re-do. You're in excellent hands; let us know how you fare.

Sue

Quick question does anyone know if Medicare takes care of most of the ostomy supplies that I will need to order? I know my secondary insurance will, but wasn't sure if Medicare will. I know my RX did not cover for the C Diff antibiotic. Ouch, it was $165. Heard that was still a discount, so I was lucky.

Marius,

Good luck. I had my j-pouch done at CC in 2010; the surgical and nursing staff are first-rate. I know you'll do well there.

Well, I had the surgery, but I even shocked Dr. Dietz. All he could do was open me up and and then sew me back up. Find out more tomorrow; but it's too late for chemo or radiation. FAP has a brother and I have a massive tumor growing in around the back area and in small intestine. They are not sure if it is cancer, but Dr. Dietz says that for them to do any type of surgery, that I wouldn't make it. I will find out what time table I have left, but looking at a few short weeks left to live. I should have more information tomorrow. We are all in shock. I feel at peace and I am trying to comfort my family. I'm bleeding a lot in my small intestine. The NG Tube was nothing but blood coming out.

All we need now is a miracle. I'm just going to spend as much time as I can with my son. I pray that there will be a change tomorrow and maybe a miracle. Just wanted to give everyone an update.

I am praying for you and your family. I am so sorry for all the suffering you have had and now this outcome. There is perfect peace ahead for you and for all of us. I pray for comfort.
Blessings Xen

Praying for you marius26.

Will say a prayer for you Marius.

Oh my gosh, what a terrible turn of events this is! It sounds like an aggressive desmoid, every FAP patient's nightmare. For Dr. Dietz and Dr. Shen to be caught completely off guard, there must not have been any indications.

I am so sorry that you not only could not have your planned surgery, but that you also recieved this awful news. I will pray and send as much healing vibes to you that I can muster. My heart goes out to you and your family.

Jan

I'm praying for a miracle. I also pray for relief from pain and a comforting time for you and your family.

So sorry to hear this. My prayers to you and yours, that you all find comfort and peace.

I am so sorry that you are going through this. I will send heavy-duty healing vibes and thoughts your way. Please come here whenever you need to vent or rant.

kathy

Such a sad outcome. Anyone who reads this I'm sure will pray for him. I do pray that that he has accepted Jesus Christ as his savior. It is sad that the other Dr's/ERs could not find this. We all face this reality one day and it puts or problems with or lives and pouches in much more prospective.

Hi everyone!!

Wanted to give everyone an update. Also, thanks for all the prayers and positive energy waves sent my way. What is funny, is all the doctors,nurses, and staff know all about me here at the Cleveland Clinic. I am they're big star. Main thing is because they still do not know what type of tumor that it is or still if it is a desmoid tumor. It is an alien, lol. By the way, I am a Christian, and I am OK with everything. I am at peace, have a positive attitude (most of the time) and have lived a great life, regardless of whatever the outcome is. Thank you again everyone; you all are the best!!

OK, so let me give a better explanation of what is going on and hopefully it will make more sense:

So originally on July 12; Dr. Deitz was supposed to give me just an ileo bag for stage 1 and allow the old j-pouch to stay in place and just let the obstruction and other issues hopefully settle down. Stage 2 was supposed to have the old jpouch removed and new jpouch be made and put in and hooked up, unless it needed to be a stage 3. That was the original plan...

Instead what happened was... he made an incession that went from my belly button to my waist line and had to sew me back up. What he found was a large and hard tumor that was about a couple inches from my spinal back area. He said it posssible could be a desmoid tumor. The problem was that he could not do a biopsy because it was too big and other organs(possibly small intestines was wrapped around this tumor). They did a ct scan to see if there was anyway that they could get to this tumor. They called on Dr. Church and still didn't know what to do. They were all puzzled. They said that radiation couldn't be done and possibly chemo originally. But with the council of other doctors they confirmed that with organs wrapped around this tumor that trying to go for a biopsy I would bleed to death. Doing chemo would risk making the organs wrapped around this tumor go bad. Hope that makes somewhat sense. All the doctors said they have never had this happened before, never have seen a tumor like this.

So this is what they have done and with my decision on it. They have given me a PEG (feeding tube) that hooks up to my stomach. I am feeding on TPN which the dietitian said would be a long time. I can have liquid and such, but nothing solid, of course. Last night they have placed a Hickman in me because all my veins kept blowing up because of all the TPN going in my veins. I should be leaving later this week going to a skilled nursing facility that does TPN, so I can be close to my son. Case management is helping me with that. That will be somewhere in Orlando, FL. Good news is that my insurance with Medicare being secondary pays for all of this 100%. All my deductibles and out of pocket has been met. So that is a true blessing. If it comes down to a hospice then that is paid for too.

In the meantime, hopefully the tumor possibly could shrink(we hope); especially if it is not a desmoid, and finally can get a biopsy. The old jpouch is still there and maybe the 4 old obstructions will go away. And with CT scans, they might be able to do surgery. Until then, I will just have to live with the feeding tube and adjust. It is much easier to clean than an ileo, lol. Worst case scenario is if the tumor causes the arteries to bust, because it is close to them and it did grow to the point to why I have been having so much back pain. It is kind of like a black hole and sucks everything to it. I do believe in miracles and have faith, so I am praying that this can all be turned around and I will have a huge testimony.

Sorry for this being so long, but wanted to explain it better in detail and I hope this makes more sense. Thank you everyone!!

Sean

Thanks for the update. I've been checking back to see if you'd posted. My husband had surgeries at CC June 12th & July 1st so I know you've been in good hands. Blessings to you and your family as you work through this. I'll be praying for you as God brings you to mind.

Thank you for the update Sean! It's so good to hear from you and the sound of hope and acceptance you have. It's good you will be by your son, well taken care of and with no financial worries. Wow, what a difference a week has made!

God Bless you and I pray this is the beginning of your medical miracle.

Just as a I told everybody who had prayed for me "Your Prayers worked!"

I hope you like the SNF, I was in one for 3 days and liked it so much better than the hospital. It was a little loud at times with their musicals (songs from the 1930's), but the funny thing was that I knew all the words. LOL

sending positive healing vibes your way.

Appreciate the update Sean. Sorry you are still in somewhat of a limbo situation, but one day at a time, eh?

With all the collective energy of everyone here and your supportive family and network of medical practitioners all your bases are covered. It sounds like you have a good plan for now.

Best wishes for you and your family,

Jan

is there an update on our friend??

Prayers...has there been an update?