Not really my story but my sons (long)

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mrjoe

Joined
Sep 16, 2010
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not really my story but my sons (long)

So I have been lurking here for some time until I had the time to gather some of my thoughts... So as the title says it's not me but my 29yr old son.. He has been having some pain on his lower right side for a couple of years, but nothing bad.. He had CT scan over a year ago and just before he was supposed to go for a colonoscopy he asked the dr. if he wanted to view the results and he said he doesn't do that and wanted to just do the colonoscopy.. My son walked out.. Hind sight being 20-20 he shoulda stayed as they would've found the beginning signs of CD.. Wel fast forward to June 2010 and he was in so much pain he wound up in a hospital for 12 days.. While in there we were told he had some perforations and they wanted to operate.. Well they couldn't due to the bariumn not being cleaned out as he was backed up. Long story short we changed dr.'s while at the hospital cause they just sucked.. We got a new dr. and he was on Predisone, Cipraflaxin (allergic to it) the Flagyl and then pentasa.. He started to do better and they let him out.. I gotta tell you the hospital and nurses were HORRIBLE... He was home 3 days and then we had to call 911 due to pain and vomiting.. New hospital... He ended up with a NG tube since he was blocked again! He had the NG tube for 4 days to let his intestines calm down a bit and we found out that he has 24" of inflamation at the terminal ileum.. He got out of the hospital after 6 days and was doing ok on Pentasa and Predisone but the inflamation is still hanging around. He was just put on 6-MP a week ago and still has some pain... We will be going back to the dr on monday the 25th unless things take a turn for the worse again. He is on some pain meds right now so my thought is at some point he will need surgery.. I gotaa tell you this hit me like a ton of bricks and is worse than when I found out I had bladder (really in the tube tho) cancer.. The fact that I can not help soothe my sons pain is tearing me up.. Being a type 1 personality this is tough for me and my family.. I APPRECIATE everyones posting here and hope that at some point I will be able to help someone else... This is a terrible disease and seeing more and more young ones getting this just tears at my heart... Thanks for hearing me out..

ciao,
/joe
 
Hi Joe , I wish i could take away your pain but please know that u have found the right place for support. this forum has some wonderful members who will advise and give wisdom from similar experiences. You have found a home to help with your concerns and I wish you and your family the very best that life has to offer.
 
Awe...My heart goes to you. As a parent or caretaker its hard to watch your loved one be ill. I know when my crohns flares..my mom is at the hospital when my eyes open in the morning...She is my strength...He is lucky to have you...stay strong..Keep posting..Jerman and the others are just great here...Peace, Sue
 
Hi Joe and :welcome:

I'm glad you have found your way here. This is a great place for support and info and you will find many kindred spirits here. Since your son seems to be blocking up a bit he may have a combination of inflammation and scarring that has caused narrowing. It would depend on the amount of permanent narrowing that would determine his need for surgery. Have the doctors mentioned anything about Remicade or Humira?

Given a choice I would exhaust all medication options before going to surgery but having said that if surgery is looking like the most viable option then I would not wait around but rather have it done while I was able to make the choices and not have it taken out of my hands as an emergency procedure.

My daughter has had a resection and did require 68cms of bowel to be removed. Unfortunately in our case we had no choice as it was an emergency and at that point she was undiagnosed. Her outcome thus far has been very positive and she has been in remission since her surgery 4 years ago.

I understand fully your feelings of fear, dread and helplessness as do all the parents that frequent this site. What we wouldn't give to trade places with our child. Please stay around and continue to browse the forums, look at the food and diet section and you may be able to find some tips as to the best foods to eat when flaring and in pain. Also have a look at keeping a diary, see if there is anything in there you may want to document before going to see the doctor and take a list of questions with you, write things down as you think of them.......................................

http://www.crohnsforum.com/wiki/Diary-Inclusions

Keep us posted on how things are going and good luck!!!

Take care, :)
Dusty
 
Hi Joe, my son is on 6mp since early this year. We were told it would take 6 months to be fully in his system. In truth, I think he started benefitting from it about 4 months in. I hope it works for your son as well. Good luck to you both!!
 
Hi Joe
and welcome

I hope you find some comfort here, and support, you're no longer alone, if there's anything we can do, we will try our best!
I hope the docs exhaust all other meds first, like the biologics, Remi or Humira before surgery, but if he had perforations in the past, maybe it's too far gone and needs to come out?
Wishing you all good luck, let us know how he's getting on
Lotsa luv
Joan xxx
 
well it looks like we're going back to the hospital today.. He has pain and swelling on his lower right side.. Damn... Its my thought that he's gonna have to have resection at some point. When the dr. did the colonoscopy he said he ha alot of scar tissue inside... I'll post when we know some more..

thanks all,
/jc
 
Hi MrJoe,
I too have written here because I am the mother of a 27 yr old who was just diagnosed with CD a few weeks ago. He is on prednisone tapering and remicade infusion was started last week. I am lucky he isn't in any pain although we were just told that his antibodies show him to be severe and having aggressive disease so they want to add 6mp or imuran.
I totally understand your helplessness as a parent of an adult child. The world does see them as adults but they our are babies forever. Best of luck to you and I will watch for updates on what happened.
 
Hey Joe
I'm sorry to hear your son is having such a difficult time. It really sounds like his best option at this point would be to get that severely diseased portion of bowel out. I have have three resections myself and have gained such relief afterwards. My only downfall was that I was never on any type of maintenance therapy afterwards. Surgery can seem very scary, but it may be the answer at this point. I hope things go well in the hospital. Keep us posted. Good Luck and Hang In There.
 
well it looks like he has a fistula and an abcess on the out wall of his intestine... They are transferring him from our local hospital to Mt. Sinai in NYC..... It has to be drained for sure but I have no other info at this point.. Probably see remicade in his future to help with the fistula's.. I'll try to update as I can..

FourLocos.. - Yup he's still a kid to me.. I wish you and your son best wishes!!!..

ciao for now.. back to the hospital..

/jc
 
Hi Mr Joe,
Love the name. It's good that they transferred your son to Mt Sinai. A bunch of us here have had recent surgery there. Mine was back in April. They have the top surgeons and your son will be in good hands.

Good luck and keep us updated.
-Joe
 
well the surgeon called me 3 times already to ensure that the transfer goes ok.. we found out that someone we know had the same exact surgery a few months ago (she's doing great btw) and reccomended him. So after talking with him I really feel alot better about things. He did talk to the local dr. and feels that any meds won't help him at this point and he will need surgery. Not sure if it will be just to get rid/repair of the fistula or a resection.. We will know more after he see's him and we talk about his recommended course of action. I'll post mroe tomorrow and thanks for the support!...

/jc
 
Hi Mr Joe, My son is also effected, not by crohns's but by ulcerastive colitis. I completely understand how you feel as a parent. It absolutely kills me that I can't do anything to help him or make him feel better. I guess I'm a control person and there's nothing I can control about this awful disease. One way I've found that helps a little - very little but everything helps at this point - is I am running a half marathon in Vegas in December to raise money for the Crohn's and Colitis Foundation. I really hate running but when I think what it takes for my son to go to class every day, I push a little harder. Good luck to both you and your son.
 
talked with the dr. today and he has surgery set for thursday afternoon.. Going to be a resection NOT done laproscopicaly because of the fistula and he wants to be able to feel things a bit more with his hands.. Hopefully he will be able to reconnect him and not have a stoma for a couple of months.. Will let you know after he see the Catscan CD that the damn abulance transfer people LOST.. I don't wnat to go there right now and explain but it wasn unbelievable...

thanks all!!

/jc
 
Sending your son loads of luck for Thursday!............................

:goodluck::goodluck::goodluck:

All the very best for safe and speedy recovery, :)
Dusty
 
mrjoe said:
Will let you know after he see the Catscan CD that the damn abulance transfer people LOST.. I don't wnat to go there right now and explain but it wasn unbelievable...

thanks all!!

/jc
Click to expand...

Joe, best of luck to you and your son!!

I wonder how many examples we could come up with for the incompetence of the medical support field. I could already add a few from the last year dealing with my son's crohns as well.
 
I read things like this and realize what my husband has had to watch me go through all these years. The toll it takes on the people in our lives is just as damaging as the disease itself. Joe, good luck to your son and remember to take care of yourself in the process.
Michele
 
well tomorrow is the day for my son.. Had a great chat with the dr. doing the surgery and while he is confident all will be ok, until he gets in there we really don't know.. I'm really hopeful he won't need a stoma for a couple of months.. He was scheduled for 1330 but now its at 0800.. So I'm thinking positive and it should all work out.. Cool thing is today after a rain storm here in NYC we saw a RAINBOW.. I'm not a gushy type of guy , but it sure made me feel better.... Update tomorrow..

/jc
 
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Joey got out of surgery at 1200 today.. he went in around 0830.... The dr. said he took out about 20cm and found that he had not 1 but 2 fistulas!! one obviously was the one we saw on the cat scan and causing his pain, but they found another one that was between his intestines.. .. the future is a bit uncertain and his life will be a bit different but it does look like he'll be joinging the remicade club in the future.. So that's all I got for now..

Ciao,

/jc
 
Glad to hear things are going well so far.....hope he bounces back from the surgery...glad the Doc went for the open surgery and found the other fistula!

On a side note - remicade cleared up my fistulas within a month or so.....so far it has been my 'wonder drug'....and I'm hoping it stays that way! 5 years and counting.....
 
Good to hear he came through ok, glad they found the other fistula as well. Hope his recovery is swift. I know he's in alot of pain, but the sooner he gets up and moving around, the faster his body will get to feeling better. Keep us posted, and let him know were pulling for him. Oh yeah, don't forget to take care of yourself too. You're no help to him if you're not running on all eight yourself. Get some rest.
 
Joe. Sorry about all the stuff your son is going through. I just had open surgery on Oct. 12th. He removed 24 inches of small bowel at the illeum and 6 inches of large bowel. Also repaired a fistula. I am still recovering my strength but I feel better than I have in a long long time. I will be starting Humira in a couple of weeks. Hope your sone is doing ok.
 
DougUte said:
Joe. Sorry about all the stuff your son is going through. I just had open surgery on Oct. 12th. He removed 24 inches of small bowel at the illeum and 6 inches of large bowel. Also repaired a fistula. I am still recovering my strength but I feel better than I have in a long long time. I will be starting Humira in a couple of weeks. Hope your sone is doing ok.
Click to expand...

thanks for the update.. I've been following your status for some time.. Other than some dehydration he has been doing well.. I think that forgot to hookup his fluid drip for one shift... anyway once that got resolved he's seems to be doing very well.. No gas yet, but hopefully today so he can eat some mushy stuff... He hasn't eaten since last sunday so its a full week at this point... I'm sure he start on the biologics once he gets home, we just don't know which one at this point.. I'm starting to get a little tired at this point but I guess that's what parents do.. Thanks everyone for your kind words and support..

/jc
 
Hi, MrJoe

A belated welcome to the forum. Good to hear that your son is doing okay!
 
Mr Joe

The day I started eating real food at the hospital was the day they sent me home. I hope the same can be done for your son. Is he eating yet? They also may wait a bit before starting the biologic. Let the incision heal.
 
DougUte said:
Mr Joe

The day I started eating real food at the hospital was the day they sent me home. I hope the same can be done for your son. Is he eating yet? They also may wait a bit before starting the biologic. Let the incision heal.
Click to expand...

no he's still got him on liquids.. 4th day post surgery and no gas yet... he's walking fine (some pain) but they said tomorrow maybe some soft stuff to see if that helps.. I think they said they'll start the new meds after a month or so so he can heal.. He does have a small 3" incision by his belly button and 3 little ones for the laproscopic tools I guess.. glad your well on your way to feeling better also..

/joe
 
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Normally you don't start to eat until you have had your bowels open which is usually about day 4 or 5 post op. Roo had her's open late on day 4. They won't discharge you until that happens and then you should go home the next day at the latest.

Dusty. :)
 
Dusty is right. The bowels have to open up first. He's lucky it was laproscopic. I have a 8inch incision - had to remove a mass so they could not use the scope. Hope things go well for your son.
 
We have decided to go the surgery route with my
son with uc. His appointment with the surgeon in November 17,with surgery possibly over Thanksgiving holidays. Silly kid is worried about missing a semester at school! My emotions are mixed!! On one hand, I'm ready for some relief but on the other hand, I'm extremely nervous!!!!!! I'm concerned mostly about the recovery right now. He still thinks he will be able to go to Vegas with me for the half marathon we've been raising money for. This will be a difficult thing for me to do -leave him in the hands of his dad and my mom. Prayers will be appreciated.
 
well he opened up today and they started giving him some real food.. They said he can come home tomorrow, which is a little wierd since he hasn't gone yet.. I wonder what food he can have when he gets home though..

/joe
 
Mrjoe- don't let them push him out of the hospital until he is ready! They have tried that with me before and I flat out refused. He should not go home until he has had a BM and eaten a full meal without pain. Trust me, I have been in the hospital more than 10 times this year and i know what i am talking about. He also needs to go at least a full day without needing IV pain meds. Seriously, don't let them bully you or he will be right back in through the ER and that is no fun at all.

As for the future, Remicade is really a wonder drug once he is ready for it. You will be shocked at how fast it works. After a years of extreme pain, I tried Remicade for the first time when I was 15 (16 maybe?) and I started to feel better on that very first day! I have very severe Crohn's so I wasn't symptom free, but for the next 10 years Remicade was such a blessing in my life. I had to go off of it for a while (too long to go into), but after my first surgery about seven months ago I went right back on it, and again, I was feeling amazing that very first day. I just had my second surgery a month ago (I had an illeostomy, then an illeostomy reversal) and I can't wait to get my next infusion.

Good luck to you and your son. I hope that he has years of remission after his surgery.

Bparker, I will have your son in my thoughts as well.
 
Jer's Girl said:
Mrjoe- don't let them push him out of the hospital until he is ready! They have tried that with me before and I flat out refused. He should not go home until he has had a BM and eaten a full meal without pain. Trust me, I have been in the hospital more than 10 times this year and i know what i am talking about. He also needs to go at least a full day without needing IV pain meds. Seriously, don't let them bully you or he will be right back in through the ER and that is no fun at all.

As for the future, Remicade is really a wonder drug once he is ready for it. You will be shocked at how fast it works. After a years of extreme pain, I tried Remicade for the first time when I was 15 (16 maybe?) and I started to feel better on that very first day! I have very severe Crohn's so I wasn't symptom free, but for the next 10 years Remicade was such a blessing in my life. I had to go off of it for a while (too long to go into), but after my first surgery about seven months ago I went right back on it, and again, I was feeling amazing that very first day. I just had my second surgery a month ago (I had an illeostomy, then an illeostomy reversal) and I can't wait to get my next infusion.

Good luck to you and your son. I hope that he has years of remission after his surgery.

Bparker, I will have your son in my thoughts as well.
Click to expand...

well he's been off of the IV pain meds since yesterday morning. Ate full meals with no pain so I guess/hope he is good to go.. No BM yet tho and I thought it was wierd also... I hope that first one isn't a bad one.. Not sure what to feed him tho.. I'm sure they'll let us know.. Thanks everyone!!!!! I'm off to pick up my son...

Ok he did have a bm this morning before we picked him up.... :thumleft:

/joe
 
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Oh Joe! I am happy to hear the surgery went well. I am hoping that he recovers quickly. Don't forget to take care of yourself too! As bad as it is for us Crohnies...I always feel bad for our caregivers....((((HUGS)))) he is lucky to have you! Sue
 
Sue-2009 said:
Oh Joe! I am happy to hear the surgery went well. I am hoping that he recovers quickly. Don't forget to take care of yourself too! As bad as it is for us Crohnies...I always feel bad for our caregivers....((((HUGS)))) he is lucky to have you! Sue
Click to expand...

ya, I'm pretty beat up at this point.. Been a long 4 months and 4 hospital visits for him... Traveling into the city was a 2hr journey each way, but he is the fruitage of my loins so we happily do it.. Lucky for me my employer told me to just go do what I have to do and worry about work later.. Great company Microsoft is..

Thanks everyone!!!!!

/joe
 
So happy for you Joe, and your son of course!
Here's to a speedy recovery, good luck to all of you!
xxx
 
so I'm really :sorry: everyone that I haven't been on to update you all.. To tell you the truth is I was just worn down... It has been extremely stressful for me realizing that I can't control my son's pain nor this disease.. being a type 1 controlling personality this is especially hard for me.. As all parents I'm sure would agree, I have prayed many times for the pain and all to be transferred to me... I'd take whatever it's got to releive my son from this.. It didn't work at this time tho... :yfrown: Thanksfully my managers at work understand and let me do what I need(ed) to do...

Any way so Joey is a little over 4 weeks post op and seems to be doing well.. He's eating and gaing weight albiet a little slowly... He's back on 6mp with a pentasa kicker until the 6mp gets in full swing I guess.. His recent blood test looked ok, but his iron was a little low (normal for him and my wife) so we need to talk to a nutritionist or our dr to maybe get some iron pills... We did have a bit of a scare last week when he came home from work with a fever and said his side hurt (right) a bit.. We called the surgeon who called us back in like 10 minutes and talked with Joey.. He put him on some antibiotics (ampicillin) and back on the prednisone (he JUST came off it 2 days ealier). Within like 2 hours his side stop hurting and his fever went away that night. We don't know if he just caught something or what.. Or if he was getting an infection where they cut his intestines out?? ( got a picture of that and its just nasty.. )He's been fine since then and the surgeon thinks they have to ween him off the prednisone from 10 to 5 to 2.5 this time... I will tell you that the surgeon called us every day even on thanksgiving to make sure he was feeling ok.. I gotta tell you this guy is awesome!!!! His name is Dr. Edward Chin at Mt. Sinai in NYC and is just phenonemal... So for the last week he has been fine and back to his old self goofing around and driving me crazy.. I'll take that anyday.... :cool: So there you have it and if anyone has some suggestions on post op, I'm all ears.. hoep everyone is doing well and thanks for listening and being there......

Ciao,

/joe
 
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MrJoe glad to hear your son is feeling better. It helps when you like your doctor and they are caring and concerned about you. We feel our son's doctor is like that as well.
My son is named Joey also and my husband is Joe. Our boys are close in age and I felt just like you do. I am blessed that my Joey has not needed surgery and the remicade is helping him. He is also on Imuran now and gaining back the lost weight. He feels great and hopes it stays like this. He can focus on his life and not his illness.
 
Glad things are still going well Joe!! I hope he can get off the pred though!! It's great to see them forget about their disease even if we never can:). Hang in there!!
 
Prednisone...The love/hate medication! Stay strong Dad! He is lucky to have you....I will put in my prayer for you right now! :) Sue
 

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