Hi Joan,
I´m from Belo Horizonte and I´ll be here until Sep. 10. I live in Fort Myers, only 2 hours from Tampa. What a coincidence!!!
I came for my brother´s wedding next week, and I´m letting my mom take care of me too. I´ve been very depressed with Scott´s situation and how it´s been affecting our relationship.
I really understand it´s hard to go through what you are going through. Specially when our partners have to be focused on getting better, and don´t really understand what we go through for them ... it´s not their fault and it difficult for everyone.
That would be fun to get in touch with your brother and his wife. Let me know if they need anything in Florida.
Borboleta

Ya' know, Joan, you are amazing. I love reading your posts. I think that you should be the official jpouch spokesperson and write a book someday!
Twins are no comparison to what you've been through. I feel like the luckiest lady alive when I look at my 3 kids. (And my darling Paul...)
And yes, Paul's great. He had the pouch out, everything closed up at the anus, and has a permanent ostomy. Things were tough there for awhile, but he's in a good place. He loves life. He feels great, and so do the rest of us.
Tell Dennis to keep his chin up. And, as beautiful as Ireland is (My maiden name is Ryan- I went in 1997)- seeing the love you have for him is far more beautiful. Get a Celtic music CD, turn up that penny whistle tune, and put in a TravelIreland documentary.
'We are pulling for you guys.
Betsy (Paul, too!)

Joan...I have read this thread and feel a whole realm of emotion! For you, your kids, and your life. No one can know what you have gone thru or will continue to go thru. I wish I knew something to say or do to be able to help or to make you feel a little better. I battle my disease alone, so I have a smidgen of an idea what it feels like to sometimes have the weight of the world on your shoulders. I hope you continue to be uplifted by your family and friends.

nys

And now guys.... I have tears in my eyes. I'm getting ready to cook steaks for my sons and friends for my pity party ending (more of my friends are going to the vineyard tomorrow night after a cook out ---- for a band and firewords show. Guess they all took pity on me for sitting alone around a goregous lake alone--- like my son's friend's parent's would have allowed it or my "bubbly personality" ---- I know alot of people that go there regularly....)

My parents have asked when I'm going to take my mcats or write a book. Hell, I'm afraid to tell them all the site as although names can't be put, they'd all know.........! My book is written (or in the writting). It's a great release.

OK, on that, Dennis is freaking about the picc on Wed. am. He's decided it's freaking the kids too much so maybe he shouldn't have it done and just keep all of that out of the house. Nice dear but our insurance plan speaks otherwise. Plus, I've talked to both the boys. The AS kid (who sees the world as he sees it) told me he's OK PLUS Dennis told him that he knows it really is helping, but the almost 13 year old after blaming his most recent attitude on everything but the HHC admitted to me that although he's OK with it in the hospital, it does bother him at home (he came home from school last Thurs just as the nurse was sticking Dennis---- she was late. really tried to plan this so the kids didn't see that part). But they also knows this makes a difference in quality of life. OK, the almost 17 year old gets "end of life" probablity and i know Josh does too (OK, in case i haven't put names to them. Travis 27 year old stepson (my favorite as I tell them all), 16.75 year old Asperger's wade and 12.85 year old Josh.......). Travis lives about 2 hours from here and can hardly stand to come see (but he sspent 3 days here on his 7 day vacation before going to GenCon with his friends recently) us. My mom guilted him into it while he helped my mom and Wade while on a convention in the quad cities where he lives. (Crazy woman is great with guilt, glad she laid it on him as I've vowed never to do that!!!!) Anyway, obviously, this is hard on ALL but the autism spectrum kid (who if THRIVING thru this- go figure but that makes me happy as he's shielding BOTH his bothers). Back to the PICC line, dennis is using the fact that it bothers the kids as his way of avoiding the Wed am procedure (he doesn't think clearly when he's not feeling well......). Both (all if I email travis) will tell me "force him there". Travis would even show up to strong arm him but I tried that for something else while travis was here and I was at work and THAT DIDN'T work. Dennis was a brat and trav decided he was on vacation and the fight wasn't worth it.... (I DON'T BLAME TRAVIS IN THIS) At this point, I told Dennis if he keeps it up, we will have one of the "need to be seen today" appts at the dr. on Tues eve. Our Wed. psych appt has to be cancelled because of work commitments. (But unbeknownst to both he and Josh, I'm making the rescheduled to get both of them in a moderated room, I'm tired of being middleman to 2 men who LOVE each other but communicate on differnt planes.)

OK- enough of the insanity of my life....

Grateful.... Crazy ?...... Is Paul upset about the fact he's "closed up". Dennis is freaking nuts. He's even had a fistula break thru there (but I think ---- and pray----- closed up) and still doesn't want anyone to "look" as it's just 'freakish'. I keep reminding him I was the one that changed his bandages in Cleveland but he remembers very little of that (THANK GOD) so he is still feeling very weird. (I'm the only woman in a house of men and "body noise" although GROSS is "cool" to them".

Well,another probably TMI post but you guys have no idea how much help it is to "spew" this somewhere other than home.

Grateful---- I make candles to "relax" and my new favotire scent is "Celtic Spice". Maybe that and the video will work. BUT I'm still going to Switzerland. I'm nordic (Norway) so I'd rather go that way but I'm sure I'd enjoy Ireland too if the fool decides to fight that long.... but I have to say! TOnight for the first time in a long time as I was ready to chew one of the kids and kept it in control as the house if full of their buddies that Dennis actually made a comment that included him in the "grandparent" roll instead of just me.

LOVE IT WHEN HE DECIDES TO FIGHT!!!!!

Joan, Joan, Joan....What are you going to do with that man of yours??? Does he really think he's fooling you by trying to "shield" the family from his medical issues? Of course, it is his way putting off accepting how bad things have gotten. I guess you can just wait until he's unconscious, then the PICC line can go in while he's unaware....

I trust that eventually he will get on board with being a little more proactive so you guys are not having to do crisis management all the time. Good thing your boys are more realistic. I am sure it scares them to see their dad hooked up to an IV at home...makes it seem more like he's an invalid. But, there are people out there on IV therapy at home that are working full time jobs and living a full life, so there needs to be a change in the mindset of what the IV really means. I don't mean to suggest that a few IVs are going to get Dennis back to his former self, but it is just another available tool for better home management.

Good luck with it, and try to pull something fun out of the weekend. Steaks with the kids sounds like a start! And don't forget to return to vent all you want.

Jan

Oh Jan!!! PREACHING TO THE CHOIR!!!!! You so GET IT. Like I said, I told Dennis before he cancels the damn picc line, we'll be at the drs. office Tues eve. For whatever reason, NOTHING works on him like it's "supposed to". The dextrose in the IV prolapses him and he has to choke down salt water to an amount he can't eat to make up the difference and get him back on his feet and his guts to hang out the "normal difference" he's used to. We just need NS. I know the dr. thinks she's giving him calories (and osmolity) but he doesn't fit any stupid mold ever made (maybe that's why I love him YIKES!).

Even Josh told me that although the stuff creeps him out, he knows it's better for his dad. SO his DAD needs to come to his own terms. He seems to be honest to one kid and blowing smoke to me and not talking to poor Josh about this. (Although when Josh and his friend got home from the vineyard today, he and Dennis reconnected.) BUT Dennis forgets that the AS kid depends on me so Wade spills it all to me....... Yes, Dennis has admitted that he needs the fluids. So we'll get them adjusted. And maybe it will take a visit to the drs. but WHATEVER. We just do it. Not freak and get scared. (Damn Dennis, do you have to make everything so hard?) But luckily, my mother who has beaten several cancers, helps me keep it all in balance. She loves her grandsons and has their well being in mind but also comes from a position of fighter in which she gets dennis too.

Basically he's afraid that when he gets the picc put in that anything he can do now, will be finished. Once in a blue moon, he feels up to moving a big computer (or comperable). He thinks that's all gone (like Wade or I couldn't carry it) once he gets a picc. Dennis seems to be now finishing up all those stupid little projects that sit around a house when you know you aren't going anywhere like that last strip of wallpaper in a weird corner or frame in the stupid home made painted tiles I made. He's also talking when this is done, he's finishing up the other "3/4 done stuff". (hee hee hee, kind of makes me want to go behind him pulling off the tiny trim work that's missing.) Considering the work today takes about 2 months for what used to take an afternoon....... I can keep him going for a long time.

MAN I'M MEAN!!!! I keep telling him if he thinks he's disappearing before Josh (the delicate) gets thru HS, I'm propping him up with a pole. I swear, that kid will be the end of me in 'worst case scenario'!!!

Thank you GOD for all the people in my corner!

SO, anyone who has (had) a picc and did heavy "moderate" lifting (not everyday.......by GOD) let me know. He's conviced that's worse than his tied to a HHC nurse coming and sticking him and hooking him up to the pump at THEIR schedule instead of me spiking a stupid bag at his schedule........

ALSO, anyone who has been thru the wringer with CD and different treatments (work of not), please let me know what's been done. Just grasping at straws but hoping there's lots of straws I don't know about!

Dinner was great and have my ribs BRINING for tomorrow.

I was amazed at the lack of clear guidelines regarding activities with a PICC line, but here is one that speaks a little about it. http://www.breastcancer.org/tips/life_quality/ask_exper...6_01/question_04.jsp

Basically, heavy lifting is out, but he would still need to use his arm to keep the muscle that is there. I would invest in a cart for moving things. Something wheeled that he could move something like a computer on by just doing a little sliding movement and slight lifting. He could use slings and straps to spread the weight to his upper body/neck along with his arms. If he pulls the computer close to his body and lifts with both arms at the same time while using a sling, there is little work for either arm. He should avoid lifting straight armed away from his body.

If he uses some tricks like that, he should be OK. I certainly would not let him use this as an excuse to avoid the PICC line. But of course, you can lead a horse to water...

Jan

But.... where can you lead a "donkey"? OK, just kidding. Tomorrow, we'll have a talk about this and hopefully see things my way!!

I think there really would be very little "intrusion" in his life with a PICC. More a "realization" issue than anything. But stick your head in the sand or accept it, things are what they are no matter if he gets a picc line or not. The state of health won't miraculously improve (well, maybe) if he doesn't get it and it's more likely to improve if he gets it......

The nurse called this am and asked if she could change her time from the afternoon to the morning. Not a problem for me. Dennis was irritated when I told him. Now, if he had the PICC............. There's the water donkey!!!!

Joan-
Paul wasn't thrilled with the "closed up" thing, and it really grossed him out for awhile, but he's come to terms with it. His situation is different than Dennis, as he has really felt a remarkable improvement since he "lost his guts"--as he calls it.
Keep fighting, Joan, and don't be afraid of "TMI"- we know it's not pretty. Life is rough some times. We just hope that things can somehow improve for you!
Betsy and Paul

Well, every good outcome I hear like that gives me hope that just maybe someone will trip upon something that will help! I LOVE hearing (or reading rather) about those short recoveries or the "solutions" being found. As silly as it sounds, I feel less "duped". But I suppose misdiagnosis is a better word.

And Dennis calls it "being gutted like a fish". Considering his first 2 surgeries were lapro and the rest of his all used the same opening from belly button to pubic area, his stomach looks GREAT. (After all the staples I've seen in there- each time I though Oh man is that going to look yucky when it heals but never has.) The only kind of weird scar from his first temp ostomy is covered by the wafer (of course he has the pain of building it up) and he's so skinny, he has a flat gut and FAINT scar! Told him to quit whinning the other day as I wished my gut would look that good now!

Although last night, I really noticed for the first time when he lifted his shirt to show me something I could count ribs. And of course, STUPID ME started counting them outloud! (I really am lacking that stop and think before you say it module of my brain.) I told him he's in trouble when I can count 5 on each side.

LOL - that reminds me of that Roseanne episode when Jackie, Roseanne and Dan have 'discovered' some pot that they'd stashed years before. They lock themselves in the bathroom and smoke up. Then Dan starts talking. He goes on and on. All of a sudden his eyes open really wide and he says: "Was I talking out loud?"

More people should ask themselves that. I know I do. Usually after I've talked out loud.

kathy

Funny Kathy..... although we've none hidden, we figured someday we'd just steal our kids (and watch them freak) but knock on wood, so far, no such luck (which although from my "youth" is a big bummer- says alot for the boys that they are handling this.....)

I remember that episode. And them hiding in the bathtub. At least they have an excuse. I gosh darn it spew whatever is on my lips. I think at my job I have to keep so much in that when I'm not at work, I just let it all out!! My boys often look at me and say "I can't believe you just said that......." To which I reply "I guess that is just a reminder to you that there's no subject we can't discuss......"

Whatever, at 40, I think it's too late to change that OR I just don't want to. Probably the later. OK, what does it say when the home health care nurse comes today (the one Dennis is supposed to have but we had yet to meet) and we get chatting. Of course she's pushing the PICC (PLEASE GOD, DON'T LET WEDNESDAY GET SCREWED UP). Turns out she's married to a guy from my close by hometown and lives there now. Anyway, by the time she was ready to leave, she said call her Wed when we know if she's coming Thurs to stick Dennis or to teach me PICC dressing care. But she said, "Too tell you the truth, although I'm all for the picc for patient convenience, you're fun and know alot of stuff, I want to keep coming here!"

I like her better than all her fill ins but Dennis had BETTER GET THAT STUPID PICC in. Because it's going to happen one way or another so it would just be easier to keep our first appt. than wait until next week because he decides to act like a donkey. Dear GOD, I don't want to leave work tomorrow, drive 30 miles and sit in a drs. office until they can squeeze me in to get this stuff staightened out.

NO DEXTROSE, He's got high blood surgar 90% of the time and low soduim 95% of the time. The dextrose solution works for about 5 or 6 hours and then backfires. NORMAL SALINE, that's all I'm asking. ARGHHHHH.

Sorry for the rant, just dreading a week that will involve a dr. office "issue" tomorrow, PICC wed. (come hell or high water) and then a visit to the GI on Thursday waiting forever and STILL managing to get home on time for the HHC nurse. PLUS my regular job and a week of meetings........... WAHHHHHHHH. Such a whinner after a long weekend.

OK, I'll just awake the warrior!!!! Everyone, keep me and the people I deal with this week in your prayers. By Friday, I'm bound to be UGLY and I really hate it when people not deserving get a dose of me!

When I get to that screaming level I just say: "I'm not screaming AT you, I'm just screaming. Don't take it personally. I'm sorry. But SCREEAAAAMMMM!!!!" That seems to work just fine.

I'll be sending all the vibes I can and more, all week long. And longer.

kathy

Hi, Joan-
Just a note to let you know we're checking in on you and hoping you're hanging in there. It's Friday... Try to take some time for yourself this weekend. Thinking of you!
Betsy & Paul

Well, now, it's Tues eve and Dennis is going in for PICC tomorrow. (one week past the original date.....) I'm thrilled as he's going to need fluid every other day rather than 2x a week and the last 2 visits it's taken 2 or 3 sticks. He's happy that the regular NS is helping where dextrose throws him out of whack and prolapses him worse, the NS pumps him up for about 2 days max.......

Also, in a slightly hopeful period as he's about ready to start humira. We again are in that giddy hopeful phase. I'll ride the hell out of it until that too goes to hell in a handbasket like everything else but the up periods so help in recharging before the ugly sets back in. PLUS, MAYBE- JUST MAYBE this will be it. I can belive it for now right? Please all, keep those fingers crossed. At the very least, the side effects do seem less and if it goes into a vein rather than orally, it's usually much better.

OK, PICC insertion is no biggie and we should be in and out of the hospital with no probs in a couple of hours! So why am I just a flipping mess and have even packed a bag with a clean set of clothes and basic tolietries in the van hidden from him for just in case. I rarely have needed the xanax anymore but taking it for this. My sensible mind knows the odds of good are brushing 100% and bad outcome almost too low to count but the bad is just throwing me for a loop. He's had so many problems and if one is possible, it seems to happen to him. PLEASE, keep us in your thoughts tomorrow am. I'm hoping to send you the big "in and out" in no time and he was doing so well I had to go to work in the afternoon (again I'll thank GOD for the company I work for which is an insurer by the way!)

Another plus for them (as we all have insurance complaints and I really work for the property and casualty side not health), the NCM for Dennis looks to have the humira set up that we'll have it in a few days and not the couple of weeks the supply company we use and drs. office says is normal. This place has really stepped up and all people involved in the health side have been BENDING over backwards to make my life on that front easier.

No time to ready what's going on with the rest but I keep my fingers crossed when I have time hopefully this weekend will find mostly great updates. All the good news I read for people is what gives me hope that there will be a light at the end of our tunnel (and not one from a big stupid train coming from the other direction on the same stupid track!!!!!!)

Thoughts and prayers to all out there.