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Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 7/21/2008 11:37 AM (GMT -6)   

Many of you may remember that I finished a clinical trial for Abatacept several months ago. Unfortunately it didn’t work for me. I have tried most conventional medications and two different clinical studies with no effect on my symptoms. My current flare has lasted for the last 3 ½ years and I’m currently having 7 to 8 urgent bloody BMs per day. For the last few months I have been seriously considering surgery. My GI even told me he has nothing more to offer.

 

about a month ago I saw a surgeon for the very first time. I went into that appointment prepared to commit to surgery but after talking to her I was more confused then ever. The surgeon made the recovery and conditions after the surgery seem worse than I had thought. Maybe she was just trying to prepare me for the worst but hoped for the best. This surgeon does both conventional and laparoscopic surgery. I asked her about laparoscopic surgery and she told me that I’m not a candidate for it. I asked her why and she said that I am too large (5 ft 11 in and 235 lbs). She then said something that really got me thinking. She said that because conventional treatments don’t work I will probably end up with surgery at some point in my life. I am 50 years old and really don’t want to wait too much longer to have surgery.

 

We are leaving on an Alaskan cruise in another week and I plan to start prednisone soon. I was on it about 5 years ago and it worked great after a few days but the side effects became unbearable a couple of months later. I plan to taper off of it fairly quickly. The surgeon said that she prefers her patients to be off pred for surgery and that the quick taper I plan should be no problem. I also have a terrible case of joint pain and arthritis and the surgeon said that if it is directly related to my UC it should diminish after surgery.

 

I was told that the waiting list for elective surgery is 4 months. The surgeon suggested that I wait till after my pred taper and if I decide to go for it at that time to call her secretary for an appointment. I didn’t want to delay it a few more months so I called the secretary a few weeks ago. I have an appointment for surgery on October 24, 2008. I also have a pre-screening appointment for September 29. I’m still not sure I want to go through with it but at least I have a date set and I can cancel it any time I want.

 

about a month ago my arthritis became much worse and I actually stayed home from work two days because of it. I went to my family doctor about it but all he said was that I needed to exercise and loose weight. He even suggested physiotherapy. I asked him about seeing a rheumatologist and he said he didn’t think he could do much for me. Two weeks later I went back to my family doctors office for my monthly B12 shot. Usually I don’t see the doctor for my shots. The nurse gives them to me and I’m on my way. This time the nurse told me to wait because the doctor wanted to see me. He came in and said he was thinking about it and would like to refer me to a rheumatologist. I was really surprised. I now have an appointment with the rheumatologist on September 11. I wanted it after my pred taper.

 

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
 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/21/2008 12:11 PM (GMT -6)   
I'm sorry to hear you are not doing well. I hope all goes well with your surgery if you do go through with it. I'll keep you in my prayers. Enjoy the Alaskan Cruise, I have always wanted to do that. Take Care, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 7/21/2008 12:17 PM (GMT -6)   
Paul, I am new here, but wanted to tell you that I am sorry to hear you are struggling so. I'll keep you in my thoughts and prayers that the surgery is the answer you need and that is goes smoothly.

Enjoy the cruise! My parents went on one a few years back and absolutely loved it, as I am sure you will too.
Laura
 
33 years old
 
Diagnosed in 2007
Currently on prednisone 15mg/day and tapering, Asacol 6pills/day and biweekly injections for Humira clinical trial


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/21/2008 12:34 PM (GMT -6)   
Good luck with it all! I hope the pred has you feeling well enough to enjoy your cruise :)
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 7/21/2008 7:05 PM (GMT -6)   
Best wishes for a relaxing cruise with your family!!!!!!! Healthwise, it sounds like you're proceeding logically with arrangements. Though surgery is never fun to contemplate, it probably would be better to schedule either before or after winter weather hits your area, no? Take care; you sure deserve a break from the UC worries. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 7/21/2008 10:26 PM (GMT -6)   
Thanks everyone. This will be our second cruise. The last one was 3 ½ years in the Caribbean. My current flare started on the last day of that cruise. We have been planning our Alaskan cruise since Christmas. I don’t think it will be very relaxing. We have a lot of activities planed for the shore excursions. I just hope the prednisone works well for me. I haven’t felt normal for such a long time. If it doesn’t work I will be spending a lot of time on the ship.

Old Hat, the winter doesn’t bother me. If I’m stuck at home after surgery for a month or two I would rather it be in the winter. First snow here in Toronto arrives in late November or December.
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 7/21/2008 10:59 PM (GMT -6)   
Hey Paul; you definitely have given it every shot possible. It doesn't sound like the surgery is easy, but it's a positive sign when others who have had it come on and tell us what a difference it's made for them. Go and enjoy that cruise with your family -- a change of pace is always a good thing. ;-) Take care Paul, and keep us updated on your upcoming surgery....and how the cruise was...sounds spectacular!
Carol

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


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 7/21/2008 11:31 PM (GMT -6)   

Hi Paul, first of all, have a terrrific vacation. I am so jealous as I have always wanted to go on an Alaskan cruise.

While we are by no means experts when it comes to surgery (Bratcat just had step 1 on July 3), I can say she is doing well and adjusting well. She also had a full incision surgery (both surgeons we consulted with prefer to do it that way). She has always been less upset about that than me (go figure). Her staples were removed on Friday and that helps alot. She is now only taking 2.5 mg of prednisone daily and it is such a big change from before surgery that I have to remind her (something I never had to do before).

We were able to get her surgery scheduled within 3 weeks of seeing the surgeon. Since she was in remission at the time, I did wonder if it was the right thing to do. But they do say it is better to be healthy for surgery than not. For most of the 3 weeks we discussed surgery and the summer recuperating in a very surreal way (almost as if we were talking about someone else). It wasn't until the Monday before surgery that the nerves set in. Even the day before we were wondering how could we do this to our child. But we know she wasn't responding to the drugs well enough and it was only a matter of time before she started flaring again.

Even though it is hard, try not to think about the surgery while on vacation. Take lots of pictures!!


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 7/22/2008 7:56 AM (GMT -6)   
Hey Paul L - I know exactly how you feel. I have just run out of options and surgery is pretty much booked in for a cpl of months from now. Though I have the opposite problem, they won't operate on me because I don't weight enough. 181cm tall and 54kg as of this morning.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 7/23/2008 5:24 AM (GMT -6)   
Thanks,

Bratcat is a brave girl. Bennie, I read your posts about her surgery and I’m glad she is doing well.

Severn, I’m sorry to her that you are in the same position as me. One symptom I have never had with UC is weight loss. In fact I have gained weight since my diagnoses.

This morning I started prednisone. I hope it kicks in soon. I am starting with 40 mg per day and tapering by 5 mg per day every 5 days.
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
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/23/2008 10:11 AM (GMT -6)   
Hi Paul. I'm kinda in the same position. I had my 3rd Remi infusion yesterday, and if it doesn't work (which the GI thinks it won't since the 1st two haven't made much of a difference), I'll be going in for surgery as well. I'm talking to a surgeon this week and another one next week. But from what I've read about it, it sometimes seems that surgery does seem worse than the UC. For example, I also go to the bathroom 8x/day max. and for some people that's normal after surgery.
 
But I hope you have a good time on the cruise!
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 (2nd infusion 06/26/08), 2.4 g Lialda, 1 Forvia, 9 Colazal/day
*exploring the option of surgery
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 7/23/2008 6:11 PM (GMT -6)   
Paul, I agree that if you're going to be stuck at home recuperating from surgery, the winter weather would matter less-- long as you wouldn't have to be going to medical appointments, lab tests, or such. Good luck with the Pred course in the meantime. / Old Hat

Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 7/23/2008 9:45 PM (GMT -6)   
ComedyDork, Remicade sometimes takes longer that 3 infusions to start working. I had 7 before calling it quits. The last 4 were double doses. 8x/day wouldn’t be that bad if there wasn’t the pain, urgency or incontinence. I have been crapping my pants a couple times a week for a few months.
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
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/23/2008 10:09 PM (GMT -6)   
Paul, I know it sometimes takes longer than 3 infusions but I don't know how much longer I can take this flare. And even if Remi does help (I've had no blood today--first time since February!), I'm not sure I'm comfortable taking a drug like this "indefinitely" (in the words of my GI). I talked to a surgeon today and she said that studies are coming out that we shouldn't be taking Remi for longer than 2 years b/c of increased risk of side effects. She also said that, most likely, I'm putting off the inevitable if I don't have surgery soon. I'll take the opinion of another surgeon and go from there...

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 (2nd infusion 06/26/08), 2.4 g Lialda, 1 Forvia, 9 Colazal/day
*exploring the option of surgery
 

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