Dear G-d! This is hell all over again...

I am so sorry for all of this hell that he is going through. He cannot be the only one on the planet like this...there have got to be others...is there any chance that he is having alergies to sutures? That his body is rejecting something? 

A healing disease that may explain why he is not healing? 

I feel so bad for all of you Diane, not sure what I can say other than to pray for healing and a quick recovery.

Sharon

Sharon, thank you do much. I never thought of rejection.  I asked the dr to present his case at the colon and rectal surgery conference next week. Its in LA. So all tge bug wigs will be there.  I also asked him to speak to Dr Remzi and Dr Milsome. Mildome is his partner so i get him for free!  Thats the only good thing about all of this. He is in so much pain and we cant seem to get it under control and now we have DEA on our backs. So i have to bring office notes and surgery reports with me to gget the meds we can get.  If flipping doctors did their jobs and the bad docs went away this would not be so difficult!  And NY is the worst!  Im starting to crack under all the pressure. Big surprise there!  Thank you for your sincere concern!

d 

What a nightmare! Jeffery by no means is an uncomplicated case, but wow! His complication rate is phenomenal!! Sharon is one of those who never heals right, so she has great insight into this stuff. Sometimes it is just a factor of being so depleted that you can't get ahead enough to create new tissue. But, I agree with Sharon that there may be another issue on board that blocks his recovery. Maybe it is linked to his IBD and PSC?

Dr. Remzi is the perfect one to consult on this, as he has seen more messed up j-pouches than anyone.

Good luck (in spades) for you guys. You really do need some good news.

Jan

I should be winning the lottery with these stats!  But of course, no!  I really don't know what we are going to do. Jan, thank you.  I agree with Sharon, something else is happening.  But, what?  I really do not want to go the TPN route again.  But it is up to Jeff.  I'm not sure how much more disappointment he can handle. Must when he is beginning to live his life, make friends for the first time in his life, he has to deal with all of this.  He has never been on a date or kissed a girl.  A permanent Ostomy will really do a lot for his self confidence.    But, I guess we have come this far, we just have to keep going.

I am going to go into my 'stupid question' mode here so forgive me in advance, Please....have you ever had Jeff done any sort of genetic testing?

For over 45 years, every single surgery that I had done led to 6 more unnecessary ones. No joke. 1st surgery at 2yrs was a little thing...They had to connect my rectum to the sphincter (born without it) ...6 surgeries later I left the hospital with a colostomy. At 9 they tried to rebuild me... 6 more surgeries that ended in full inconenence. 

Even minor stuff like stepping on a piece of glass put me through 6 surgeries, a coma and 6 months hospitalization.

Whenever I asked the question why, I was told that I was unlucky.

It took yet another series of stupid and unnecessary surgeries (this time 13) to finally get an unexpected answer...Ehler's-Danlos syndrom.

It does not always show up on the genetic tests...it is like autoimmune, a series of diseases/symptoms that seperately do not make sense but once you line them all up you understand that there is something going on that forms a pattern.

Hyperlaxity of joints, bad skin healing, easy bleeding (not hemophilia), sutures don't hold, constant infections, suture lines infecting and popping open, vascular fragility (I.V.s become a nightmare), exhaustion, skeletal pain...the list goes on...I found out accidentally and got it confirmed by my GP...then did the genetic testing and got some confirmation...now they take precautions with surgery, sutures etc...there is no cure but the difference is quite amazing when you know what you are doing to the patient and how they will react...please have them look into it...it could very well give you some answers.

Huge Hugs

Sharon

Sharon, excellent thought.  I appreciate the "out of the box" thinking.  However Jeff doesn't fit that mold. He has great veins!  And not a long infection rate either.  As a kid, he never got sick.  I got everything.  He carried the germs, but I got the illness. But it does sound like a good idea!  I will mention it to the doctor. Mi think looking at other autoimmune diseases is a fantastic idea!  Thank you.

Diane, 

It does not have to be Ehler's-Danlos altough there are 6 different kinds (as if 1 wasn't enough)...Some do not involve infections of veins...but there are other similar 'catch all' diseases that could fit the bill...look under rare diseases and start entering random symptoms.

Like I said, in my case there is no cure and no real treatment but when it comes to talking with surgeons, they suddenly sit up and listen when you can give them a name of a disease that causes the problem (instead of say, here we go again with this s-it disturber...) and they can take then necessary measures to keep him from falling into the rabbit hole post op.

Stay strong

Sharon

We went to see the surgeon today.  So far Jeffrey is NOT running any fevers.  That's a really good thing.  Jeff's additude is really wonderful.  He has resigned himself to the fact that he may end up with a permanent Ostomy.  Not happy about it, but handling it amazingly well.  They are going to do an exploratory surgery on May 12.  The hope is that they might be able to see where the leak is and fix it. Maybe even put some glue I. There.  Dr. missing will be involved in the procedure.  The next step is TPN for a few weeks.  They will put the port In while under anastesia.  So step by step, maybe we will find some answers.  I sure hope we do!  Thanks everyone for all your support suggestions.  I did bring them up to the doctor

Hang in there - I'm glad he has a great attitude - it's so important - as you know.  Hope you are taking care of yourself too.  So sorry you both have to go through all this. 

Question for Mom's and other caregivers.  How on earth do you take care of yourself!  Every time I made a doctor's appointment, something gets in the way.  On May 12th, I have an echo cardo gram scheduled.  I was supposed to have this in January!  Getting it rescheduled is like an act of congress. It takes soooo long.  I don't have time to wait!  I have been trying to schedule a routine colonoscopy since August!  And I'm trying to have weight loss surgery. I have a bunch of requirements that I have to meet, and I can't even think about getting those accomplished.  My husband, while not useless, can not do what I do with Jeff.  Sometimes can't, sometimes won't.  Plus someone around here has to keep a job! So, how do you take care of yourself!  Oh the best one this week, I scheduled a massage.  My husband called 6 times!  Finally on the last call, I answered the flippin phone.  No respect for boundaries, and it was for something stupid.  Oh, I didn't know you were having a massage! Ah, read the text message I sent you an hour ago 

Dear Diane,

You've heard "you need to take care of yourself first because if you don't you will ultimately be unable to care for others". It goes something like that.  Well it is a load of crap.  It's easier said than done and having an adult child with Jeffrey's problems is a 24/7 job.  It's not like a young mother with children to take care of.

That said you are right.  You need to have those important appointments.  Can your husband take over for you?  If he doesn't he might end up with an ill wife and child.  My husband has come around since I started having him come to all of my medical appointments with me.  Has your husband ever gone to Jeffery's decision making appointments?  You probably need to tell him he has to let you teach him how to take care of Jeffrey.  He might not do it as well as you do but with practice he will be able to do things well enough.  

I also suggest you turn your cell phone volume down.  An hour massage is not much to ask for.  We can't please everyone all the time but we try to and loose ourselves in doing so. You need to get the heart and colon testing done!!!

Have you tried getting pain medication from Jeffrey's PCP?  After leaving the hospital with a week or so worth of pain medication is all the surgeon's want to do.  I can understand it as  they are use to cutting and handing back to the regular doctors.  I think you need a doctor that sees you periodically during the year to prescribe them.  My Internists have and are in charge of my pain medication.  Since the new federal law there are no refills so I need to pick up a signed prescription from my doctor monthly.  In my frail dad's state he has to actually have an appointment with his pain doctor monthly.  They changed the laws as there were doctors over prescribing and drug addicts seeking them out.   The people that really need these medications now are jumping through hoops.  Some don't prescribe them anymore due to all of the headaches.  I heard that heroin use has increased due to the clamping down on narcotics prescriptions.  The addict will always find drugs......

I hope you will find the time to take care of yourself.  My son was ill as a baby and it was all consuming.  You have been doing this for decades.  I admire your devotion to your son and the way you advocate to get him the help he needs.  

BTW, I had my j-pouch and all removed.  I now have a healing Barbie butt and permanent ileostomy.  I should have done this years ago.  I'm glad Jeffrey is beginning to accept the idea of a permanent ileostomy.  The recovery from the surgery has been pretty awful for me but I am a month out and am glad I had it done.  I had different problems than Jeffrey and am just telling you how much better I feel with it out of me.  For example my tailbone area hasn't felt this good for decades.

Hi Diane

Ok...here comes the cheer leader pep talk...yes you come first or hubby is going to end up a widower. That is the bottom line...then what are you going to do? Follow Jeff from heaven to his appointments? He will eventually have the surgery,  get or not get an ileo...but he will not get another mom...certainly not one like you. 

The world is full of healthy widowers who were married to martyrs. They remarry quickly looking for someone else to care for them!

You and your body need to come first and he needs to learn how to become a stand-in.

So call the cardio's office,  explain the situation and tell her to put you "on call" for the next opening...and then arrange for Jeff's surgeon to do your bariatric surgery in the same hospital!  You can share rooms!

Huge hugs

Sharon