Questions for pb4..

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 4/17/2009 1:49 PM (GMT -7)   
Since you said Dr. Panaccione is your GI, I am curious as I have heard he is one of the 'top' Crohn's Specialists. After my first colonoscopy in which another GI was called in as well as a surgeon, my then GI recommended surgery. However he did consult with Dr. Panaccione by phone who recommended I try Remicade first. Long story short by the time I got on Blue Cross and they eventually approved Remicade I was one day away from an infusion when I say Dr. Kaplan (Panaccione had passed it on to him as he was too busy). Further tests, more knowledge and we decided against the Remicade.
Very happy with Dr. Kaplan as he takes the time, realizes the dificulty in my decisions (virtually no symptoms) does not push me and has referred me to a colorectal surgeon last year, to a colleague this January to do an endorectal ultrasound and again to surgeon which all happens very quickly. With all the tests lately and surgeon's consultation there has been another GI or surgeon assisting so have had many opinions. And Dr. Panaccione is always there if they needed to consult with him.
So I guess my questions are how you regard Dr. Panacionne, how long have you been seeing him and his availability to you? Any surgeries at the Foothills? First colonoscopy there I kind of felt like being on an assembly line but have been happy with all the medical staff (except nurse who jabbed an IV into me).
Just getting a little nervous with surgery three weeks away.
 
55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Sigmoidectomy scheduled for May 11/2009


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/17/2009 2:05 PM (GMT -7)   
He's been my GI for the last 4ish yrs now, but I don't see him regularly (I'm sure I should see him more often) because of the fact that I know I'm at about the best I can be under my circumstances (long story short, back just before I got sick I was misDX as having hemmies which were actually perianal crohn's skin tags but a bad surgeon, I believe her name was Judy Chan so don't see her, did an emergency hemeroidectomy on me when she shouldn't have).

Panaccione is great because he doesn't care what works so long as something does, he encouraged me to continue with the bee propolis and other naturals I take and even suggested I see a naturalist if I wanted to. So besides him being easy on the eyes (LOL) he's open minded and that to me is what every GI should be, he respects the fact that we're all unique and likely require different methods of treatment.

He is hard to get in to see (especially for a first time referral) as my daughter was having gut issues and we could have seen him but it would have taken about 4 months so daughter got scheduled to see Dr. Nixon (Of whom I was impressed with and I'm not easy to impress) sooner so we went that route for her. I'm not familiar with Kaplan but I know Bridges works in their group as well so please stay clear of him, he's got the worst bedside manner and he was my first GI so you can imagine what I was going through emotionally on top of being severely sick, he was ignorant and waited too long to try me on meds and just wanted to keep scoping me (creepy bugger) honestly I had 3 scopes in a month and a half with that moron and he wanted to scope me when I was 8 months pregnant even though things had settled down a touch during that pregnancy so there was no need for a scoping which is what an excellent colon and rectom surgeon (who I was also seeing at the time) warned me not to let him scope me at 8 months pregnant because considering how I was doing there was no need and it could have induced labour plus the meds they have to give me to knock me out wasn't worth the risk to my baby and that's when I clued in and dropped Bridges.

What are they going to do surgery wise on you?

:)


My bum is broken....there's a big crack down the middle of it! LOL :)


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 4/17/2009 4:39 PM (GMT -7)   

I like what you said about open-minded. I think Dr. Kaplan is that way and easy on the eyes as well (LOL he's probably 20+ years younger than me). I don't know how many patients he has as he only sees them one day a week. He is involved in research as well and I like the fact that I  haven't had to wait long to get an appointment. He is very good about following up. I have felt good throughout all of this so once Dr. Kaplan had seen me long enough to realize this, he did not push in any direction as far as meds or surgery. He said I would not go it alone even if I decided on doing nothing, he would closely monitor me. (That was last year). Endorectal ultrasound was ultimately the determining factor and why I am having a resection of sigmoid colon. There is only two inches of stricture but it has shown constant inflammation and ultrasound showed deep scar tissue. Dr. MacLean is the colorectal surgeon and I saw him last year as well as in January. Impressed with him as well. I always try to find out as much as I can about my doctors that I am referred to beforehand. Don't really like surprises. Dr. Yan did the ultrasound or rather a GI fellow Geoffrey Williams with Dr. Yan being present. Originally Dr. Alqahtani (also from Foothills) did my first colonoscopy since he was helping out in Red Deer that summer. So I have seen a few in the short time since being diagnosed.

Thanks for the heads-up. Would be interested in knowing what if any meds you are on and other naturals?


55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Sigmoidectomy scheduled for May 11/2009


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/17/2009 5:40 PM (GMT -7)   
I'm glad you are confident with Kaplan, it's so important, it's bad enough trying to deal with a disease like this yourself and having a jerk-off for a doctor to boot (of which I've booted a couple LOL) double edge sword when they're good looking though eh he he......I hope all goes well with your surgery and it sounds like you're in pretty capeable hands too so that's one less major stressor.

I'm either allergic or non-responsive to oral meds used for IBD and pred included (pred used to work great for me but it stopped all together) so I had no choice but to put my huge skeptisism aside and try the natural route and to my surprise it has definitely helped (not full remission but way better than nothing) I was going a good 30+ times/day with severe lower back pain (had me balling on the toilet every trip) and lots of bleeding, mucus, tons of gas and bloating, lots of urgency and mainly mushy consistancy with the odd formed combined with complete D, needless to say I was all over the place with my stool formation. Panaccione tried me on pred with the bee propolis to see if it might kick me into remission but it didn't work, at that point it was discovered that pred no longer could do it's amazing magic on me (which really sucked cuz I never really got much for side effects from it so of course it had to stop working for me)....the good thing about being allergic to all the other meds is I don't have to deal with nasty side effects and none of the naturals I take have any (never use bee products if you're allergic to bees and avoid chamomile if you're allergic to ragweed).

I started first with bee propolis which did wonders by the next day, my bleeding stopped and same with the lower back pain, I went only about 15 times instead of 30+ and the stools were more consistant looking...then I added fibre supplements (as directed by Panaccione) which cut the BM's down to 10 or less/day, so then I added omegas 3-6-9 and probiotics which took me to where I'm at now, basically an average of 5/day, no bleeding no bloating no excessive gas (hubby farts more than me and he doesn't have any GI issues) and I now have fully formed stools for the most part...

I say for the most part because during my monthly cycle anything can happen and my CD is more aggrivated during a few days before, during and a few days after my cycle so it sucks. The other main issues I still have is urgency (I'd poop my pants if I couldn't get to a toilet quick enough) and frequency, 5, sometimes less/day is great but it's not my normal one/day with total control that I was before getting sick 18 yrs ago now. And of course my other main issue is the perianal crohn's skin tags I breifly mentioned in my first reply, because that idiot surgeon went ahead and banded them as if they were hemmies (when they were not) while they were in a severe flare (large and hard, painful too) they've remained that way ever since.

I also altered my diet, no more junk-food, fast-foods, processed foods/beverages, animal fats, caffeine, refined sugar/artificial sweetners (I use honey or stevia) and I drink only water and chamomile tea (you should google chamomile tea if you're not familiar with it's health benefits same with the bee propolis if you're not allergic to bees).

So, I have gone for many yrs using nothing and my CD would still vary from severe to moderate flares but still always flaring to some degree, luckily though I have not strictures and I'm not a fistulizing crohnie either (breaks my heart whenever someone posts about those)...I'm proof that going yrs without meds doesn't mean a guaranteed death sentence or that the disease still can't sometimes get somewhat under control....which is why I say, it has more of a mind of it's own then what we give it credit for, only makes sense, it's why even those that take their meds and watch their diet can still end up flaring.
 
Oh yeah, I exercise regularly too which has helped symptoms as well as emotional/mental as well.

:)


My bum is broken....there's a big crack down the middle of it! LOL :)


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 4/17/2009 8:24 PM (GMT -7)   

Glad to hear that you have found some things that work for you and that your GI helps and supports natural products as well. I was initially put on Prednisone when diagnosed, I knew nothing about Crohn's let alone Prednisone and it's side effects. This was two months before my daughter's wedding. Gained 20 pounds and had moon face but since they first thought it was colon cancer, you soon realize what's important. I thought the Pred was working (stools larger in diameter and easy to pass) but next colonoscopy didn't show any improvement so I went off. Didn't know what night sweats were before Pred either but wasn't that bad. Didn't take any meds for 11 months while other things were happening. Didn't feel any different. Decided against the Remicade as I had no symptoms and didn't think it's effectiveness on strictures was that great. I did agree to Methotrexate for short term and it has shown some improvement but don't think any meds are going to take away scar tissue so collectively have decised to have the surgery. There is always the chance that there could be cancer within the stricture or at least increased risk by leaving it.

More all the time I think there is a lot to be said for 'you are what you eat' and not just for Crohn's. I was told to go on a low fibre diet and I have changed my diet somewhat. No popcorn, raw veggies, not much red meat, no soda. Have added Omega 3 and Vitamin D as well as I have drank Goji juice for a number of years (just because). Was taking a supplement which was mainly turmeric and ginger but stopped while taking Metho. I do exercise and worked hard to get rid of the extra 20 pounds after Pred.

I am hoping after surgery I can at least add more fruits and veggies back into the diet and do want to get off of Metho. No side effects but don't know long term effects. I think a person does what they have to do to try and feel better and I'm sure I could be more strict and try different things if need be.

Thanks for all the info.


55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Sigmoidectomy scheduled for May 11/2009


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/17/2009 8:42 PM (GMT -7)   
So true Bammer, pred was my best friend a few times...and it's different when dealing with strictures and such, makes it that much harder to heal things and get into a good remission too I'm sure.

When I first got sick it started on my anus with the perianal crohn's skin tags (unusual since it usually starts in the TI) then after that stupid surgery I mentioned I had, it quickly ran through me internally, my rectom, (proctitis) my colon (crohn's colitis, which it has also remained there along with the anus for the last 18yrs) and in my TI (which thankfully didn't last for more than a couple of yrs, but having it in all those areas at one time, lets just say I don't know how I got through that and it's bad enough having it constantly in the colon and on the anus (and it comes and goes in the rectom) but man what a basket case I was during that time and no support from Bridges didn't help, I'm telling him how it wakes me up in the middle of the night (to poop) and he looks at me like I'm crazy even though he sees where all the CD is active.

Low fibre diet is good for those with stricturing CD, it's not good to avoid fibre all together and I think alot of people do that and they really shouldn't but hey I don't blame them if it's causing them constant pain with their disease...it's a tough disease as you well know...and don't worry, the pred weight will come off, sounds like you're taking control of that well and I also hope you'll be able to induldge after your surgery at some point with adding more fruits and veggies.

Three weeks will be here before you know it so be sure to keep in touch before surgery and definitely after...I'll wish you the best of luck and send good vibes to you now for all to go well and a super speedy recovery....I'll be thinking of ya, what's the exact date?

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 4/17/2009 9:33 PM (GMT -7)   
May 11th. Start the colyte prep Mother's Day morning!

55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Sigmoidectomy scheduled for May 11/2009


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/17/2009 10:53 PM (GMT -7)   
Oh Bammer, that's quite a bummer (sorry, couldn't resist, want to try and cheer you up but I have a quirky sense of humor usually at the worst of times, it could be how I deal with things...I need help!) keep in touch and think positive thoughts, I'm excited for you though cuz I like to think that this will be a turning point for you and after your surgery no more misery just a great life to enjoy.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 4/18/2009 8:01 AM (GMT -7)   
Well you did put a smile on my face!

55 yr. old F dx. CD 07/07
Was on prednisone for three months but no medication for next 11 months.
Started weekly methotrexate injections 09/22/08.
Sigmoidectomy scheduled for May 11/2009


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/18/2009 11:29 AM (GMT -7)   
Glad to hear it, usually I ruffle feathers apparently so if I put a smile on your face today then that's a good thing LOL!!

:)
My bum is broken....there's a big crack down the middle of it! LOL :)

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 6:28 AM (GMT -7)
There are a total of 2,735,263 posts in 301,287 threads.
View Active Threads


Who's Online
This forum has 151393 registered members. Please welcome our newest member, paul hutchins.
289 Guest(s), 9 Registered Member(s) are currently online.  Details
hypoHashimoto, Gretchen1, tickcheckguy, reminder, yancync, Brendoni, Traveler, sam12, JackH


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer