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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 7/26/2008 10:18 PM (GMT -6)   
Tomorrow morning my wife, 6 year old daughter and myself catch a flight from Toronto to Vancouver where we will stay for 3 nights. We plan to see as much of Vancouver as we can. We even have a bus tour booked to take us to Whistler BC for a day. Whistler is the main site for the upcoming 2010 winter Olympics. On Wednesday of next week we board a cruise ship in Vancouver and head for Anchorage with stops in Ketchikan, Juneau, Skagway, Sitka, and Whittier near Anchorage. My wife’s cousin and her husband will pick us up and we will stay at there house in Anchorage. They booked a cabin in Homer, about 4 hours south of Anchorage and the 5 of us will stay there for 2 nights. We will then head to Denali State Park, 5 hours north of Anchorage and stay there for 2 nights. We will spend a total of 4 nights in Anchorage before flying back to Toronto. We have planed this trip since before Christmas and it is finally here.

My UC has not been that great with severe joint pain and arthritis. I have been having 7 to 8 urgent bloody BMs per day. I started 40 mg per day of prednisone last Wednesday and within one day my joint pain and arthritis has improved greatly. In fact I was able to wash my feet in the shower for the first time in several months. My BMs have only improved slightly at about 5 or 6 per day but still urgent. I hope it gets better. There is internet access on the ship but it is expensive and I may not have time to check in on this forum so I’ll talk to everyone when we get back on August 15.

Take care,


Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
 

Post Edited (Paul L) : 7/26/2008 9:28:45 PM (GMT-6)


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/27/2008 6:55 AM (GMT -6)   
Sounds like a grand ole time; just wish you were feeling good for it. Try to have fun regardless :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~2nd epidural injection 8/14, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 7/27/2008 7:17 AM (GMT -6)   
Thanks Red, my Joint pain and arthritis are almost completely gone. That is huge and will make a big difference. I had 2 urgent BMs this morning but I hope it gets better soon. We are leaving for the airport in about 30 minutes.

Take care.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/27/2008 10:46 AM (GMT -6)   
Wow, sounds like a great time....enjoy!
Carol

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 7/27/2008 11:13 AM (GMT -6)   
Paul...you truly deserve the break you're getting from the pred. It'll definitely make your trip more of a holiday!

Looking forward to the pics!
Hve an awesome time,
quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 7/27/2008 11:51 AM (GMT -6)   
Bring immodium!
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4538
   Posted 7/27/2008 12:47 PM (GMT -6)   
Wow, I'm super jealous! Wish I was going to Alaska. Sorry you're still not feeling good though. Hope your UC doesn't get in the way too much while you're gone. Let us know how your trip went when you return.
Diagnosed with UC March 2007; yet to go into complete remission
Asacol 4 tablets 3x/day; Rowasa every 3-4 nights; Canasa every 3 nights;
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil; Viactiv; Zinc supplement every few days


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/27/2008 4:42 PM (GMT -6)   
I hope your UC gets better so you can enjoy your trip! Have fun in Alaska!
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3rd infusion 07/08), 2.4 g Lialda, 1 Forvia, 6 Colazal/day
*exploring the option of surgery
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 7/28/2008 5:26 PM (GMT -6)   
Thanks everyone. We are in Vancouver and we saw the aquarium and Stanley Park this morning. We are waiting to go on a Vancouver tour in a few minuets. My UC is getting better every day.

Take care
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 7/28/2008 5:35 PM (GMT -6)   
Way to go, Paul! That's great news if Pred is helping you to enjoy the vacation. Keep up your calcium & vitamin D, too, for the sake of your bones/teeth while on the steroid. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 8/8/2008 2:45 AM (GMT -6)   
Hi everyone, we arrived in Anchorage yesterday after a 7 day cruise through the inside passage. The cruise was great and the weather couldn't have been better. We hiked up to a glacier in Juneau, road the train to the summit and across the Canadian boarder in Skagway and toured the Harvard Glacier up close from the Cruise ship. I can't tell you how spectacular the scenery is. Right from our balcony on the ship we saw 2 humpback wales jump out of the water. I hope I have a few pictures to show you when we get back. I bought a new digital SLR camera just for this trip and I put a 16 G memory card in it. It should hold over 3000 pictures but I already took over 2000. I hope I have enough space left for the next week. We are heading down to Homer tomorrow for some salmon fishing and up to Denali park on Monday.

Take care and talk to you later,
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 8/8/2008 7:35 AM (GMT -6)   
Aww I am soo envious! It sounds absolutely spendid. Can't wait to see the pics if you decide to share :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~2nd epidural injection 8/14, Neurontin and Skelaxin
To help Healingwell - click here: DONATE
 
 
 
 

 
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/8/2008 8:08 AM (GMT -6)   
If the ship has internet you can load your pics onto a free kodak gallery site. It will save all your pics in full resolution. What you view on screen will not be full res so don't right click and save to get them on your hard drive. You have to log in, click "download picture" and then you will get the pic in full res. You could probably clear 500 or so pictures out in an hour and have some more room on your card. Or, I bet the cruise store sells memory cards. Just fill up another and DON"T LOSE THE FIRST ONE.

From one digital photo geek to another, happy snapping!
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/8/2008 8:20 AM (GMT -6)   
Awesome Paul! Glad you are having such a great time and it sounds absolutely beautiful...nothing like watching nature and being in the fresh air is there? :-) Enjoy!

Carol

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 8/8/2008 11:05 AM (GMT -6)   
Thanks everyone. We are leaving for Homer in a few minutes. My UC has not been as good as I would like with 3 to 7 BMs per day. The urgency is still strong but it is amazing that almost every time I have to go we are near a washroom. I usually go a few times in the morning and a few in the evening. The afternoons are fairly good. I'm now down to 25 mg per day of prednisone. My arthritis and joint pain are almost none existent. We are flying back to Toronto on august 14.

Take Care,
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/8/2008 11:51 AM (GMT -6)   
Paul, took about two weeks @ 40mg of pred to get me down to 2-3 bm's a day no blood and mucous and much better urgency, my third week @ 40mg and I was in pred remission and began to taper by 5mg a week and am at 15mg right now and doing pretty good, pretty much one bm a day though have had an extra one or two here and there.

have a great trip!
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 15mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 8/8/2008 5:14 PM (GMT -6)   
Bravo, Paul-- it's great to read that you're holding up UC-wise & can get a lot out of the trip. All best wishes to the 3 of you! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 8/11/2008 11:54 AM (GMT -6)   
Thanks,

Beth, last time I was on prednisone I started at 30 mg per day and it fully kicked in in only 2 days. It worked great for the first month then the side effect stated. This time it is not working nearly as well. I don't have enough to increase my dose beyond what we planed. My doctor is not a big fan of prednisone and only gave me enough for a quick taper.

We had a great time in Homer. We took a wildlife boat tour and saw lots of birds and sea otters. Unfortunately we didn't see any wales. We went fishing and I caught 2 salmon. We are leaving for Denali Park in a few minuets.

Take care,
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 8/14/2008 4:18 AM (GMT -6)   
We just got back to Anchorage from Denali Park, almost 5 hours drive north. We spent 2 nights there. We took a ski plane and landed on a glacier in the park. The scenery was unbelievable. The next day we took an 8 hour bus trip into the park and saw one wolf, 2 foxes, 2 caribou, 2 grisly bears (one right outside the bus), and several golden eagles. We didn’t see any moose in the park but after the bus trip we saw a moose with 2 cubs behind Rose’s Café just after we ordered dinner. Of course I had to grab my camera and go outside to take pictures. This morning before we came back to Anchorage we did a 2 hour white water rafting tour. We are headed back home to Toronto tomorrow and will arrive home in the afternoon on Friday.

Take care,
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/14/2008 9:31 AM (GMT -6)   
so glad you are having a good vacation! Can't wait to see the pictures, take care!
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 10mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 8/17/2008 8:56 AM (GMT -6)   
We arrived home on Friday at about 4:30 pm. Our flight from Anchorage was delayed by 45 minutes because the plane arrived 20 minutes late and after taxiing to the runway we had to return to the terminal twice to let off passengers. The second time was to let off a drunken man and his wife. His wife was very angry over that. We were to have 1 hour and 45 minutes between flights in Houston but it was reduced to only 1 hour. We had to change terminals but we still had time.
 
Apparently it has rained almost every day here in Toronto and my grass is like a jungle. My neighbor mowed the front but not the back.  I spent most of yesterday doing yard work. I started working on new photo albums of our trip and I will let you know when they are done. You can see some of them in progress at http://www.laflammefamily.ca
 
Take care

Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


potato
Regular Member


Date Joined Jun 2008
Total Posts : 281
   Posted 8/17/2008 11:33 PM (GMT -6)   

Paul, from a person who has been teetering on having a massive pity party for herself, I just want to say thank you for sharing your fantastic trip!  You've given me a great big dose of hope for enjoying life outside of... and maybe even out of range of...  a bathroom!!! 

What a great thrill of a trip!

 


Potato...  Female, 58, dx mild left sided ulcerative colitis 11/07
asacol 3 3x a day 
cortenema (generic) am & pm 
culturelle, benefiber wafers 
children's vitamin, Vitamin E 400 mg
omeprazole 2x a day
oxazepam when needed, lomotil or ImodiumAD (but not in the same day)
 
 
 
 
 
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/18/2008 12:21 AM (GMT -6)   

Paul L,

 

It appears you have exhausted most of the conventional treatments for UC...if I may ask, what's next?

 

Thanks and I hope you're feeling better.


Mild to Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


quincy
Elite Member


Date Joined May 2003
Total Posts : 30998
   Posted 8/18/2008 12:31 AM (GMT -6)   
Paul....you always take such awesome pics...available for us to view...it's good to hear you had a great time on your trip to Alaska!

Welcome home..
quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 8/18/2008 11:48 AM (GMT -6)   
Thanks everyone,

I’m back at work again after 3 weeks off. This trip wouldn’t have been possible without that drug that we all love to hate, PREDNISONE. I started at 40 mg/day 5 days before we left and I am currently at 20 mg. It only slightly helped with my BMs but greatly improved my arthritis and joint pain. The side effects are just starting to show. My wife says she can see that my face is starting to look puffy. I have recently had several muscle cramps in my legs, arms and hands. I really want to get off this medication soon. Before the pred I had a sore neck and could barely move it. Today for the first time since starting it my neck is sore again. I think things are going to get worse as I taper off the pred.

bbc, Yes I have tried most conventional meds and 2 clinical trials without success. I am scheduled for surgery October 24, 2008. I was hoping pred would have put me in a longer remission so I could cancel the surgery but now I’m more convinced I will go through with it.

Thanks quincy, I have been adding more pictures. As you can see I am creating one photo album for each location we have visited. It takes time to go through more than 3,300 pictures.

Take care,
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 

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