Am I at the last step before surgery

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jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 9/24/2008 6:30 PM (GMT -6)   
Hey guys-
The doctor told me that the last thing he can do for me is up the remicade to 10mg  per lb? and change lialda to colazal. I am having a colonscopy on Monday, so he can get the latest look ( I haven't had one in 18 months ) even though I did have a CAT scan last year that showed a lot of inflammation- pancolitis. I was labeled as having a severe case.
 
Anyway, he said barring any change, next step is the surgeon. I have tried Rowasa, Lialda, Prednisone ( for 3 months), 6 MP, Remicade ( stopped working), and now colazal
 
Since October 2006 I have been sick with only a short ( 3 months) remission. I have been flaring since April- constant bleeding, 20 visits to bathroom, cramping, mucous.... oh yeah I forgot you guys know what I am talking about :)))
 
 
So any thoughts????
Jackie, 43

Pancolitis, DX Jan. 07

Lexapro, Lialda, Sythroid, Protonix, Rowasa suspension

Remicade 9th infusion- Sept. 9th


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/24/2008 7:20 PM (GMT -6)   
Jackie,

The good Lord willing and according to some folks here that have actually had the surgery, 2 years after the first surgery you should be @ about 90% of a normal life and with no more UC or UC meds!!!! I believe your liver should also greatly benefit from the surgery not having to deal with all the meds! I can only imagine being two years away from eating pizza, Reeeses peanut butter cups etc!!!

We are blessed that as UC'ers that we can actually be cured with surgery!


Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/24/2008 7:52 PM (GMT -6)   
oh you don't have to wait two years to be normal! and you sure don't have to wait two years to eat all those things, lol. i was eatign all those things in about two weeks, and my life was back to normal in about 6 months.
SO, i know that you are scared, but try not to look at it as a horrible thing

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/24/2008 7:55 PM (GMT -6)   

Two years with only 3 months remission is reason enough for surgery.  If you feel your quality of life is low then now is the time.  I have never regretted my surgery decision.  Recovery is long but still it's easier than living with UC.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/24/2008 9:01 PM (GMT -6)   
How long was it to your complete recovery?
suebear said...

Two years with only 3 months remission is reason enough for surgery.  If you feel your quality of life is low then now is the time.  I have never regretted my surgery decision.  Recovery is long but still it's easier than living with UC.

Sue



Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!

Post Edited (bbc) : 9/24/2008 8:07:10 PM (GMT-6)


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/24/2008 9:04 PM (GMT -6)   
summerstorm said...
oh you don't have to wait two years to be normal! and you sure don't have to wait two years to eat all those things, lol. i was eatign all those things in about two weeks, and my life was back to normal in about 6 months.
SO, i know that you are scared, but try not to look at it as a horrible thing
I thought the second step was done after one year and after the second surgery there is anther year to fully recover?  It's very nice to hear it's only 6 mos! 


Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 9/24/2008 9:17 PM (GMT -6)   
bbc, unless you have some kind of crazy complications, it's usually 8-12 weeks between surgeries. Recovery times vary; I went back to work at Week 3 each time.

Jackie, if you're at the last step before surgery, embrace it. If you're having 20 bathroom trips a day, you're having no life. It will be much, much better on the other side.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/24/2008 9:30 PM (GMT -6)   
Wonder why some here are saying its a long recovery?

Again glad to hear/learn its not so long!
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/24/2008 9:40 PM (GMT -6)   
well i have a perm ileo, i don't have the j-pouch, but charlotte gilman is right, it's usually a first surgery to create the pouch and you get a bag then. During that time, you can pretty much eat whatever, just have to be careful on the veggies and fruits.
After the second step, which i am not personally familar with this, but from what i hear, it takes a few months to get yourself back "in order"
Some people have longer recoveries because they were sicker, or because of pred use, or just other things can be factors.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/24/2008 9:54 PM (GMT -6)   
Thanks for clearing that up...I am quite encouraged about the recovery times...again it's a blessing we have/had this option : )
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 9/24/2008 10:34 PM (GMT -6)   
After the second step which for some people is optional, the plumbing needs retraining. The pouch is made to be about 9-10 cm which is not much and requires about 7-8 trips to the bathroom a day to keep empty. You retrain/exercise the pouch to increase its capacity and with success you can reduce the number of visits to 3-4 depending on diet, when you eat your meals and how often you eat. Apparently this process can take up to a year.
 
I think the period between operations would be subject to negotiation, personal circumstances and how well you have healed from the first op. With the often dramatic improvement to your quality of life, there is no need to rush it. I imagine the better recovered you are from the first part the better the recovery will be for the second part.
 
I know people have been saying that they have gone back to work after 3 weeks, but I am taking 8 weeks off. I am going to take it easy and (hopefully) enjoy my freedom from disease. Fortunately xmas is coming up and i won't be pressured into going back to work too soon.
Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/25/2008 8:13 AM (GMT -6)   
I also went back to work 3 weeks after each surgery. The second surgery is based on your surgeon's preference. My surgeon does the second surgery after 6 weeks but most surgeons do it after 3 months. That year of recovery is not a year of lying around; I went camping a couple months after surgery, traveled through Europe at 3 months and at 6 months I did a half marathon. The year of recovery strictly means a year of getting your new plumbing to adapt. I did suffer about a year of fatigue too thanks to 2 years of continual prednisone use. Oh, and they use 9-12 inches for the pouch, not cm.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/25/2008 9:32 AM (GMT -6)   
Hope you have the best and UC free Christmas ever...and thanks for the info.
Y2K Bug said...
After the second step which for some people is optional, the plumbing needs retraining. The pouch is made to be about 9-10 cm which is not much and requires about 7-8 trips to the bathroom a day to keep empty. You retrain/exercise the pouch to increase its capacity and with success you can reduce the number of visits to 3-4 depending on diet, when you eat your meals and how often you eat. Apparently this process can take up to a year.
 
I think the period between operations would be subject to negotiation, personal circumstances and how well you have healed from the first op. With the often dramatic improvement to your quality of life, there is no need to rush it. I imagine the better recovered you are from the first part the better the recovery will be for the second part.
 
I know people have been saying that they have gone back to work after 3 weeks, but I am taking 8 weeks off. I am going to take it easy and (hopefully) enjoy my freedom from disease. Fortunately xmas is coming up and i won't be pressured into going back to work too soon.


Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/25/2008 9:34 AM (GMT -6)   
Very encouraging Sue!!!! How many trips to the bathroom a day are you at now?
suebear said...
I also went back to work 3 weeks after each surgery. The second surgery is based on your surgeon's preference. My surgeon does the second surgery after 6 weeks but most surgeons do it after 3 months. That year of recovery is not a year of lying around; I went camping a couple months after surgery, traveled through Europe at 3 months and at 6 months I did a half marathon. The year of recovery strictly means a year of getting your new plumbing to adapt. I did suffer about a year of fatigue too thanks to 2 years of continual prednisone use. Oh, and they use 9-12 inches for the pouch, not cm.

Sue


Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/25/2008 9:39 AM (GMT -6)   
bbc,

I have no idea; I don't keep track. If I had to guess I would say somewhere between 6-8 times per day. But it's not like emptying a colon. Emptying the pouch is as quick as urinating. No prolonged periods on the toilet and no urgency or pain.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/25/2008 9:44 AM (GMT -6)   
Sue,

Thanks...so can you hold off going without much trouble with no need to use public restrooms etc?
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/25/2008 9:50 AM (GMT -6)   
Yes for about 2 hours if needed.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/25/2008 10:58 AM (GMT -6)   
jblue there are a few other drugs I did not see listed, cellcept, humira and cimizia.

The chance that cellcept would help is 25%. Humira is not FDA approved for colitis yet.........my GI did not see humira as an option but when I went for a second opinion the GI there said that he could get me on humira........but then who pays for it. My friends Dad goes to the same office and he is on humira and his insurance pays for it (he has uc). I think many Dr's do not think they can get it approved for their patients, worth a try. Also the GI I went to for the 2nd brought up cimzia, I do not know much about it but find a Doc to go to for a second opinion to talk about these other drugs and the options. I recommned the Chrons and Colitis center in Boston, MA.

I would definitely go for a 2nd to discuss these options before making the surgery decision. That way you know all your options.

HTH!
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 5mg 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!
 


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 9/25/2008 6:32 PM (GMT -6)   

Thanks Beth--- The doctor told me that Humira probably wouldn't work if Remicade didn't??? You are right, though, I will get a second opinion before I proceed with a surgeon.

 

 


Jackie, 43

Pancolitis, DX Jan. 07

Lexapro, Lialda, Sythroid, Protonix, Rowasa suspension

Remicade 9th infusion- Sept. 9th


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/25/2008 7:14 PM (GMT -6)   
Jackie, my GI told me the same thing. However, I've heard of other people who have had Humira work even when Remicade hasn't. I've also heard of people trying Low Dose Naltrexone.
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 9/25/2008 8:53 PM (GMT -6)   
Whether Humira is an option or not after Remicade depends on the reason Remicade didn’t work. If the patient developed antibodies towards Remicade then Humira is an option. If no antibodies are present and Remicade still doesn’t work then chances are that other TNF blockers such as Humira won’t work. After I completed 7 Remicade infusions and my symptoms didn’t improve my GI wanted me to consider a study for Humira. I had to take a blood sample and send it to Prometheus Labs in California to test for antibodies. This was required for all patients that have been on Remicade before and wanted to enter the study. Unfortunately I had no antibodies and didn’t qualify.
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 


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 9/25/2008 9:28 PM (GMT -6)   
My GI put me on Remicade (infliximab), Humira and Abadacept so he obviously thought there was some mileage in trying all three even though they are all TNF inhibitors.
 
Unfortunately none of them worked.
 
confused  
Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/25/2008 9:44 PM (GMT -6)   
suebear said...
Yes for about 2 hours if needed.

Sue

So you can only last 2 hours without having a BM?
 
How would you say the 6-8 x's per day ranks with others that had the surgery?
 
Thanks
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 9/25/2008 9:46 PM (GMT -6)   
Y2K Bug said...
My GI put me on Remicade (infliximab), Humira and Abadacept so he obviously thought there was some mileage in trying all three even though they are all TNF inhibitors.
 
Unfortunately none of them worked.
 
confused  

Sorry to hear you're having no luck with the meds...did any of the meds work even for a while or just never helped?
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
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!!!


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 9/26/2008 4:14 AM (GMT -6)   
The only thing that worked was the IV steroids that i got while in hospital (twice). The first time was a 3 week stay while the second was only over a w/e.
 
And thanks for the xmas wishes. I hope i am recovered enough to enjoy the xmas season.
 
I discovered today that my current tiredness (and grumpiness  mad ) was more than just the UC, i am a bit anaemic. I will have to get a blood transfusion some time next week.
 
 
Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept

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