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28th of June

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Posted 6/27/2012 3:38 PM (GMT 0)
Yes I think MS and SK follow pretty much the same protocols.
Worried mom, thanks. Yes, it's very upsetting as it was very difficult to prep for mentally but what can I do? I hope she responds to pred, they will try to bring it down to as low as they can while keeping her stable before surgery and then do it while she's on pred. I guess that's what they feel is best.
Posted 6/27/2012 7:19 PM (GMT 0)
     Hubby and I just returned home today from the shore and I read your post about the delay in your daughter's surgery.  Your surgeon is very wise to postpone the surgery.  It sounds like he (or is it a she?) is cautious and doesn't want to take any unnecessary risks.  This is a GOOD thing!!!!  Don't worry about the prednisone.  I was on 20 mgm of prednisone going into surgery.  My surgeon said he would rather I be on the prednisone than flaring during the operation.    I was prednisone dependent for two straight years too, just couldn't get off the darn stuff without going into a major flare.

     I believe what you said about Remicade too.  Personally, I think it is a big money maker and that is why it is so widely prescribed.  Anymore, I think a lot of doctors put the almightly dollar ahead of their patients welfare.  I mentioned in a former post what my gastro doctor told me...."Chris, if Remicade can keep you in remission for 15 yrs before your developing Lymphoma, it would make me happy!"  What kind of crap was that???? rolleyes    I take it that he meant I stood a good chance of getting Lymphoma in the future!!  OY!  Needless to say, I never returned to that moron...nor to any other GI doctor.  My surgeon said I didn't need to unless I had upper gastric problems, which so far, touch wood, hasn't happened.

     Keep us all posted and I will keep your daughter in my prayers.  Sounds like she is in good hands wink !!!

Posted 6/27/2012 7:46 PM (GMT 0)
hey Killcolitis, just by curiosity, where are you having the surgery done and who's your surgeon?
Posted 6/27/2012 8:05 PM (GMT 0)
somedude, we are at Sick kids and the surgeon is Jacob Langer. She is obviously a pediatric case.
Christine, yes as frustrated and worried as I am I totally trust this surgeon and feel he has his patients interests at heart. I do what he says, no questions. As for Remicade, there's so much debate and it really is a wonder drug for some - I don't begrudge anyone for using it to avoid surgery as the choice isn't a great one. Having said that I'm in the Canadian system so I'm not worried about the docs being in centocaur's pocket as much as I would be if I were in the US (having said that I have some drug reps in my extended family and I know they do offer the docs perks like dinners etc). My daughter's GI is a paid consultant for contocaur - she has to declare this whenever she publishes an article about remicade as it's obviously a conflict - but she has been VERY conservative about remi and prefers to use it as a drug of absolute last resort. She does not push it at all. I'm so sorry you had to deal with that idiot GI.
Blueglass - thank you for your comments, they did hit home as just before I read them I was talking to my husband about how I felt overwhelmed by the ostomy care and how it was going to mean a huge adjustment, sleepless nights etc. And he brought to my attention that i was assuming that the ostomy care was going to be added to our current situation (which sucks - amongst other things my poor daughter is up every 1-2hours to use the bathroom) but that all of that was going to be gone. We have become so accustomed to a very difficult and poor QOL that I didn't even really consider that it would be gone (hopefully) after surgery. Let's hope it works out that way...
Posted 6/27/2012 8:36 PM (GMT 0)
Glad my comments were helpful, but so sorry to read about the delay -- how disappointing! But it's great that you trust your surgeon.

I was on 40 mg of pred when I decided on surgery, which was scheduled for 2 weeks later. I had to taper 10 mg a week down to 20 mg. The super fast taper was really hard. The surgeon would have been OK w/doing the surgery on 40 mg, but my gi nixed that because I'd been on pred so long (it was so rushed that the surgeon hadn't read all my records and realized how long I'd been on it).

For the surgery itself, they jack you up on pred, it's called a shock dose, as it's so stressful for the body (think about it -- someone cuts you open w/a knife and starts taking out some organs -- in a visceral sense, it's like attempted murder .... so you need more stress hormone to cope). Pred does slow the recovery and leave you open to some complications (I had an abscess that my surgeon said would have been an outpatient thing, except because I was on pred I spiked a fever and she came in at 10:30 pm to fix it, not wanting to wait til the mornign). But your surgeon knows those risks, and is thinking that the risks of doing surgery when she's so sick are worse.

Hope the pred works. I went on remicade because once I was in the hospital for weeks w/IV steroids not working.... then a year or so later when remicade stopped working, I got IV steroids again, and was out of the hospital in 4 days..... asked why the pred would work that time and not the previous time, and no one really knows...

Most people get the ostomy care mostly worked out within a few weeks.... have you met w/a stoma nurse? Having a stoma nurse that you trust like you trust your surgeon will make a huge difference.

Also, presuming you changed a lot of diapers when she was little.... it's not the same thing, but it's kind of the same idea.... and it's nothing like caring for someone who is so sick.....

Hang in.
Posted 6/27/2012 9:12 PM (GMT 0)
I checked him out, he seems pretty decked out with awards. Maybe if I need surgery, I'll seek him out...hey I'm a kid at heart. I'm a sick kid also. smilewinkgrin
Posted 6/27/2012 9:25 PM (GMT 0)
Somedude - are you in Toronto? If so, there are tons of great surgeons across the street. He is great though, I feel very comfortable with him and his wife has an ileo from CD (she wrote a book about it so it's public knowledge) so that might be one reason why he's so human and kind. BTW I HATE the name "Sick Kids" - WORST name ever for a children's hospital.I hate the fact taht my daughter know she comes to a place called by that name.
Blueglass - I know pred for surgery is "bad" but I don't know much else so that's that. She's always responded to iv pred so I hope this is not the exception. But, if it is, at least we're already hear and being monitored. Not much I can do about it at that point. I just have to leave it in their hands now. I hope we can figure out the ostomy stuff soon too. I have made several friends who have kids with ileos and who have given me lots of tips but it's just that I really feel like things never quite work out for us...It's been a long road and I guess none of the patients who end up at colectomy stage are particularly lucky so hopefully it won't be an issue.
Posted 6/27/2012 9:38 PM (GMT 0)

killcolitis said...
Somedude - are you in Toronto? If so, there are tons of great surgeons across the street. He is great though, I feel very comfortable with him and his wife has an ileo from CD (she wrote a book about it so it's public knowledge) so that might be one reason why he's so human and kind. BTW I HATE the name "Sick Kids" - WORST name ever for a children's hospital.I hate the fact taht my daughter know she comes to a place called by that name.
Blueglass - I know pred for surgery is "bad" but I don't know much else so that's that. She's always responded to iv pred so I hope this is not the exception. But, if it is, at least we're already hear and being monitored. Not much I can do about it at that point. I just have to leave it in their hands now. I hope we can figure out the ostomy stuff soon too. I have made several friends who have kids with ileos and who have given me lots of tips but it's just that I really feel like things never quite work out for us...It's been a long road and I guess none of the patients who end up at colectomy stage are particularly lucky so hopefully it won't be an issue.

LOL, I'm not far from Toronto, but I'm in the Quebec province " La belle province, which taxes the crap out of us" , 2 minutes away from Ottawa. I have already selected my surgeon which will be in Montreal.... However, it can change, but I'm not allowed to go outside province which sucks.

http://www.medicine.mcgill.ca/oncology/fac/facandstaff_show.asp?Oncology_id=294

I heard good things about him, I've met him...but I dunno.

If you ask my opinion, it doesn't matter if a doctor does 10000000000000 J pouches...you can still end up ****ed up. It's HOW your body responds to the surgery. Just as UC is unique and some people do nothing and it goes away, just as unique a surgery will be for you or anyone else.

Of course, choosing a highly skilled surgeon will be part of the grand puzzle.
Posted 6/27/2012 10:05 PM (GMT 0)
yes, but it seriously maximizes your chances of success. We lived in Ottawa when my daughter was dxed and my husband still goes to work there every week. we had to move to Toronto to be near this surgeon/GI. There are some okay docs in Ottawa but I would go to Montreal too. I know there's a very good IBD center for kids there and I think some interesting research coming out of Montreal about CD so I guess there's some good expertise. If you go down that road, it's likely to turn out really well.
Posted 6/27/2012 10:05 PM (GMT 0)
Yes, Killcolitis, you're right -- everyone who has had surgery has had a lot of things go wrong, so try to let in a little hope that things could go your way.... this board is full of people who were sick, sick, sick for years and then got their lives back w/surgery. Hope your daughter will soon be one of us.

Glad to hear that the iv pred has always worked.

Agree, "Sick Kids" is a terrible name .... sounds like from another century like "orphan asylum" .... The kids name should be something like, "Eat popsicles every day place"....

Reminded me of something only marginally related ... there was actually an article in the paper here that "Children's Hospital, Boston" has changed its name. The new name is "Boston Children's Hospital." Really, we do have more news than that.....
Posted 6/27/2012 10:17 PM (GMT 0)
I met two surgeon. Dr. Richard (woman). She didn't want anything to do with laparascopic...She says, she does open surgery cause that's her style, she says it's "Faster" ***....She's old school but comes with reputation.

Liberman does laparascopic and is rated great according to patients....but who knows really....

It pisses me so much that your daughter is 5 and is suffering like this. She's just a little kid and is not supposed to suffer like this. She wants to feel great like the other kids she sees.
Posted 6/27/2012 10:23 PM (GMT 0)
I actually like the name "Sick Kids" . I think it's the best because it promotes the fact that it deals SPECIFICALLY with sick children and it caters exactly to them....

Better than "General Hospital" where you got the stupid nurses that know less than you do.
Posted 6/28/2012 1:04 PM (GMT 0)
     Somedude....when I asked my surgeon if he were going to do my operation laparascopically, he looked at me like I had three heads and said..."NO way!"  Maybe it has something to do with the patient's condition at time of surgery, the type of surgery to be performed, etc..
Posted 6/28/2012 3:39 PM (GMT 0)

Christine1946 said...
Somedude....when I asked my surgeon if he were going to do my operation laparascopically, he looked at me like I had three heads and said..."NO way!" Maybe it has something to do with the patient's condition at time of surgery, the type of surgery to be performed, etc..

Some surgeons just don't do it laparoscopically. And it really does depend on the patients condition especially if they were on prednisone for a long time. I would imagine its actually harder (and longer) to do it lapo. My surgeon did my laparoscopically .... The colectomy and the j pouch creation at the same time so I was in the OR for 8 hours! My hubby was freaking out because my surgeon never mentioned I would be under that long. I think if I had known that, I may have have chickened out!
Posted 6/28/2012 3:55 PM (GMT 0)
Somedude,
As much as I hate UC and hate that my daughter has to deal with it (I can't tell you how much I do) being in this place makes me almost (not quite but) thankful that it's *just* UC. I can't even begin to imagine what some of these kids and their families are dealing with. And, I just try to focus on the fact that my daughter is strong and has many advantages most children do not. So, we'll have to figure our way through this (praying it's not CD of course).
As for lapro - her surgeon will try to do that but of course can't guarantee. He usually does. But it would be three step as it is for most of the children he sees. I guess it's a matter of expertise, choice, patient's condition or any combination of the above.
Posted 6/28/2012 6:27 PM (GMT 0)
Sending lots of good thoughts. Tell us how she's doing when you get a chance, and have time.
Posted 6/29/2012 10:46 PM (GMT 0)
     ByeByeUC.  Quite possibly.  I was lucky my surgeon even operated on me.  I was prednisone dependent for two years straight.  My BP was 216/110 and I was taking three different blood pressure meds.  My 2 hr PP was close to 300, so I also was on Medformin (not sure of the spelling).  He  wouldn't even consider j-pouch.  He told me it would be more stressful on my system than open heart surgery.  I think his main concern was my stroking out on the table.  I was 63 yrs old too.  He also was adament that I pass a stress echocardiogram prior to surgery.

     My operation lasted about an hour and a half.  I recently found out from my hubby (who must have had a slip of the lip...lol), that they kept me in the ICU for an extra hour post surgery but he said he couldn't remember why.  I suppose he didn't want to worry me.

     I still would have the operation over again for my quality of life is sooooooo much better.  My BP is 130/70 with only one pill a day and I no longer have diabetes yeah !!!  OR that ulcerative proctitis!

Posted 6/30/2012 11:54 AM (GMT 0)
Killcolitis, how is she doing?
Posted 7/1/2012 3:37 PM (GMT 0)
I just saw this post right now. I was searching for you killcolitis to see how things were going and I am so upset that she hasn't had a better response to any of the treatments you've tried. I know you tried everything!!! I am sure surgery will end up being the best decision but it's a long road. I am thinking about you both. I hope your daughter heals quickly. The reality is, this will all be far in the past in a few months and she will never have to think about awful UC again. That's something to celebrate.
Posted 7/4/2012 1:28 PM (GMT 0)
Killcolitis...just wondering how things are going?
Posted 7/11/2012 2:35 AM (GMT 0)
killcolitis....just wondering if you guys are home and able to enjoy some of the summer?
Posted 7/12/2012 1:54 AM (GMT 0)
I am thinking about you both.
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