Those who had surgery...

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bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/2/2008 2:39 PM (GMT -6)   
Did you have a feeling from the beginning that meds would not work or work for very long? I have had this thought and unfortunately it seems to be coming true: (. I will probably face the choice of going to 6 mp's etc and I have a feeling they won't work for very long either as over the last year (my first since offcially dx'd in 5/07) I went from flares every 6 mos to now every week, but thankfully no bleeding or D since going on the meds...just bad spasms rectally and abdominally which occur after my a.m. BM which last four about 8 hours afterward with varying degrees of pain...the weird thing is I can wake up the next day and be perfectly fine and stay that way for 4-6 days???
 
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!!!

Post Edited (bbc) : 10/2/2008 2:43:30 PM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 10/2/2008 2:50 PM (GMT -6)   
My first 10 years of UC were mostly spent in remission. It was the last flare that never ended. In that last flare I always had hope that the 23+pills per day I was taking would put me in remission but they never did. They did allow me to work most of the time but the last few months it was getting harder to hold things together as I was anemic and had lost my B-12 stores. I was exhausted. My UC also was affecting other organs, I developed a chronic cough and some skin issues. In that 2 year period I was never totally fine. I could function, I looked well, but I was not totally fine. It's hard for me to say as I was in denial much of the time and tried to rationalize my declining health. In hindsight, I was pretty pathetic. It is true, though, on one level I felt that my colon was going to be a failure. Since we have parted ways I have never grieved the loss or wished him/her back!

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


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 10/2/2008 3:58 PM (GMT -6)   

When Bratcat was first diagnosed in Fall 2006 we knew nothing about IBDs. We figured she would be able to take some medicine and go into remission within 2 weeks (sort of like when you take an antibiotic). Who knew! Even though the GI did explain it to us. He did discuss how she would start on asacol and enemas and how, if they worked, he would prefer to keep her on them. It took prednisone to jump start it but she did finally go into remission (more than 2 months later). That lasted a year. When she flared again and the drugs didn't seem to be working, she went to 6-mp (which the year before we swore she wouldn't go on). That, along with prednisone got her into remission again. We figured if she could find a medicine regimen that worked and kept her in remission, she would be able to deal with having UC. Unfortunately she didn't stay in remission and had to start Remicade. When that didn't work (and the prednisone was the only medication that seemed to get her into remission but not keep her there), we decided on surgery.

But she (and the family) always figured one of the meds would work and keep her in remission. Surgery wasn't even a serious discussion in the beginning. Maybe it is our optimistic attitude. Maybe our rose-colored glasses. But each time she tried something new we figured this would be the thing that kept her "normal". That is how we look at her surgery now. Just a new type of "normal".


--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds
Step 2 scheduled for November 10
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/2/2008 4:45 PM (GMT -6)   
Suebear..I know some here that had the sx have a bm 6 times per day and can hold it withhout urgency for about 2 hours...does that hold true for you too and what happens if you can't go in two hours and have to hold it for say 3 or 4 hours?

Bennie, How is she doing and when is her pouch surgery scheduled for?

Thanks guy's
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 10/2/2008 4:59 PM (GMT -6)   
Not answering for suebear, just for myself: if I have to hold it longer, I can. The best explanation I heard before the surgery, which has turned out to be true, is that it gets uncomfortable, the way it's uncomfortable if I need to urinate and can't get to a toilet. The clock on it is similar. (I'm 3 months out from the second surgery, by the way.)

I also had a hard time making sense of people who were describing being "healthy" but needing to wake up at night to go to the bathroom, because I'd only ever experienced that in a very urgent way. But it is a lot like waking up needing to pee, in that the need will keep waking me up if I decide to ignore it, and I'd rather not keep getting woken up, so I go.

It sounds like you're thinking about surgery. I can't say enough good about the improvement it has made in my quality of life.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/2/2008 6:55 PM (GMT -6)   
Thanks Charlotte, are you saying have to go in the middle of the night? How is it going 3 months out, can one work out golf etc or would it be too early?

Yes, I don't really want to go the "big gun" meds route as I think I'd like to spare my liver from more presciption drug damage and kick my old beat up colon out of my body! LOL Seriously I doubt the 6mp's etc etc will do any good and I refuse to take pred.

Thoughts are most welcome : )
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 10/2/2008 9:29 PM (GMT -6)   
i tried a few meds but then i got tired of trying meds, because i just kept thinking that they could stop at anytime and there i would be again, and they weren't working completly anyway.  so i just chose to go with what would work, all the time. 

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 10/2/2008 9:37 PM (GMT -6)   

bbc, Bratcat is doing good. She is in school, not worrying about if she is going to flare (which she has for the past 2 September/Octobers). She adjusted well to her ostomy. Can't say she loves it but for now it is a part of her. She has always been pretty open about her illness. She doesn't like to tuck her ostomy bag into her pants. She either wears it over her pants and has a long shirt to cover or sometimes, she tucks the end in and lets it fold over itself on the outside of her pants. Her energy level is building up but I think the fact that she had the whole summer to recuperate made her not work as hard to get back to her usual self. I guess she really lived up to those lazy days of summer!! She is looking forward to her step 2 surgery on November 10. She plans on taking off through Thanksgiving to learn to go to the bathroom the regular way again. She gets up in the middle of the night to pee so she isn't concerned about having to empty her j-pouch at night. Like Suebear, she never counts how often she pees so she isn't overly worried about how often she will have to poop. She's thrilled about not having to be on any meds, especially prednisone. She lost 40 lbs since her surgery on July 3. She eats very well but finally lost the excess prednisone weight. She's excited about looking for a gown she will have to wear to her winter concert in December (we will wait until after surgery so she won't have her ostomy).

Bratcat tried some of the "big gun" medicines. One of the factors in deciding to have surgery was the fact that she is only 17. She could have potentially been on some "big gun" drug for more than 50-70 years more.


--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds
Step 2 scheduled for November 10
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 10/2/2008 10:01 PM (GMT -6)   
bbc said...
Thanks Charlotte, are you saying have to go in the middle of the night? How is it going 3 months out, can one work out golf etc or would it be too early?

Yes, I don't really want to go the "big gun" meds route as I think I'd like to spare my liver from more presciption drug damage and kick my old beat up colon out of my body! LOL Seriously I doubt the 6mp's etc etc will do any good and I refuse to take pred.

Thoughts are most welcome : )


Almost without exception, everyone who has this surgery gets up to go to the bathroom in the middle of the night. Depending on how much and how late you eat, it may be more than once. I've had a couple of nights that I've slept through; usually I'm up at least once. One bathroom visit a night is considered normal even in people with healthy colons and bladders, though.

I went back to work and to the gym after two and a half weeks. Today I deadlifted 165 lbs. Unfortunately I never was able to golf, and surgery didn't change that! but if you already know how, I bet you'll still be able to!

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/3/2008 8:19 AM (GMT -6)   
Charlotte Gilman said...
bbc said...
Thanks Charlotte, are you saying have to go in the middle of the night? How is it going 3 months out, can one work out golf etc or would it be too early?

Yes, I don't really want to go the "big gun" meds route as I think I'd like to spare my liver from more presciption drug damage and kick my old beat up colon out of my body! LOL Seriously I doubt the 6mp's etc etc will do any good and I refuse to take pred.

Thoughts are most welcome : )


Almost without exception, everyone who has this surgery gets up to go to the bathroom in the middle of the night. Depending on how much and how late you eat, it may be more than once. I've had a couple of nights that I've slept through; usually I'm up at least once. One bathroom visit a night is considered normal even in people with healthy colons and bladders, though.

I went back to work and to the gym after two and a half weeks. Today I deadlifted 165 lbs. Unfortunately I never was able to golf, and surgery didn't change that! but if you already know how, I bet you'll still be able to!
Wow I would have thought nocturnal BM's would not be an issue anymore post surgery...waking up to have a BM is not considered normal for those with a healthy colon though.
Glad to hear you were able to recover so quickly : )

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 10/3/2008 8:23 AM (GMT -6)   
Bennie said...

bbc, Bratcat is doing good. She is in school, not worrying about if she is going to flare (which she has for the past 2 September/Octobers). She adjusted well to her ostomy. Can't say she loves it but for now it is a part of her. She has always been pretty open about her illness. She doesn't like to tuck her ostomy bag into her pants. She either wears it over her pants and has a long shirt to cover or sometimes, she tucks the end in and lets it fold over itself on the outside of her pants. Her energy level is building up but I think the fact that she had the whole summer to recuperate made her not work as hard to get back to her usual self. I guess she really lived up to those lazy days of summer!! She is looking forward to her step 2 surgery on November 10. She plans on taking off through Thanksgiving to learn to go to the bathroom the regular way again. She gets up in the middle of the night to pee so she isn't concerned about having to empty her j-pouch at night. Like Suebear, she never counts how often she pees so she isn't overly worried about how often she will have to poop. She's thrilled about not having to be on any meds, especially prednisone. She lost 40 lbs since her surgery on July 3. She eats very well but finally lost the excess prednisone weight. She's excited about looking for a gown she will have to wear to her winter concert in December (we will wait until after surgery so she won't have her ostomy).

Bratcat tried some of the "big gun" medicines. One of the factors in deciding to have surgery was the fact that she is only 17. She could have potentially been on some "big gun" drug for more than 50-70 years more.

So glad she is "over the hump" and doing well. It's bad enough for me that I got hit with UC in my early 40's but 17...geez : (   I bet she will be a real happy camper after the pouch and by this time next year she be 100%+++ : )
 

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 10/3/2008 8:24 AM (GMT -6)   
summerstorm said...
i tried a few meds but then i got tired of trying meds, because i just kept thinking that they could stop at anytime and there i would be again, and they weren't working completly anyway.  so i just chose to go with what would work, all the time. 
How did your insurance company feel about you going directly to surgery? Didn't they want you to continue trying stonger  meds first?
 
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!!!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 10/3/2008 8:46 AM (GMT -6)   
Insurance companies don't dictate when you can opt for surgery. It's the patient's choice and for this surgery it's usually based on quality of life issues. Although most would try to exhaust all medicines before pursuing, some choose never to go the Remicade/Humira route for personal reasons and go straight to surgery.

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 10/3/2008 9:52 AM (GMT -6)   
Thanks Suebear...that's very good to know as if the 6mps dont work especially long term for me then I will start interviewing surgeons.
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 10/3/2008 10:53 AM (GMT -6)   
To clarify, I don't mean that it's normal for a person with a colon to have a bowel movement at night. But it is normal for someone in perfect health to have to get up once a night to urinate, and this is really no different from that, in terms of sleep interruption.

My insurance company also put up no roadblocks to surgery, even before the dysplasia was found. Though azathioprine is cheap (and I recommend trying it--it worked fantastically on my symptoms and I had no side effects), Remicade costs them about $8 k a dose, so 2 years' treatment with Remicade would cost more than both steps of j-pouch surgery combined.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/3/2008 12:39 PM (GMT -6)   
Is azathioprine a 6mP?

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!!!


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 10/3/2008 12:42 PM (GMT -6)   
bbc said...
Is azathioprine a 6mP?

Thanks


"6mp" isn't a category of drug; it's one specific immune modulator that is used in IBD treatment. The other one is Imuran (the generic name of which is azathioprine). Sometimes people who don't do well on one can take the other, or the other will work better. I'm not sure why, but my GI seems to pick Imuran first.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/3/2008 12:48 PM (GMT -6)   
Did it stop working for you?

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!!!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 10/3/2008 12:53 PM (GMT -6)   
bbc,

I think many of the questions you ask are excellent and be sure if you ever decide on a surgical consult that you pose these questions to your surgeon. I would also recommend that you ask to speak with your surgeon's jpouch patients either by phone or meet face to face.

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 10/3/2008 1:01 PM (GMT -6)   
Suebear...thanks and 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!!!


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 10/3/2008 2:47 PM (GMT -6)   
No, it didn't stop working. I would definitely try it as long as your doctor thinks it's a good choice for you. At the very least, it may give you some breathing room to plan the surgery better.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/3/2008 4:40 PM (GMT -6)   
If I may ask then why did you have the surgery if the meds were still working for you?
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 10/3/2008 4:45 PM (GMT -6)   
See above--I had high-grade dysplasia, which is an absolute indication for surgery. It made the decision much easier! But now that I know what it's like, I can see that I should have chosen it long ago.

Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 10/4/2008 6:04 AM (GMT -6)   
Suebear, your presurgery issues sound like me ... right down to the chronic cough. Been dealing with that since June and seen several drs about it. I just never feel good, it's just degrees of "not bad." I struggling with deciding on "the cure" or not. One complication is I own my own business and it's a one-person deal. I will have to close down for the recovery period and rely on my husband's income. I bring in slightly more than half our income, so that will be a hardship, as well as some of my business expenses will not end during the two month recovery period. The job is very physical so I expect it would be the entire eight weeks rather than the six-to-eight weeks I read about.

On the other hand, almost without exception I read that UC sufferers are very pleased post-surgery and wish they had it done sooner. I just can't seem to visualize myself with a bag, dealing with the hospital, etc. I am so torn.

Going for a colonoscopy in about a week. I am almost hoping that the colon will look bad so it will be easier to make my decision. If the Remicade is working and the colon shows healing, than why do I feel crappy more often than not, eh?

Anyway, glad to hear you're doing well post surgery, it gives me hope.
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08
10 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Tylenol Arthritis Formula or Tramadol as needed for arthritis pain; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;
Past meds: Prednisone 4/06-4/08; Entocourt EC; Rowesa; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix;Lexipro


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 10/4/2008 7:24 AM (GMT -6)   
Meesh,n
 
I wasn't really keen on the temp ostomy myself but knew that it was just one step in my recovery.  Honestly, the bag was not so terrible because ridding myself of my colon gave me immediate good health which helped with everything in my life.  The experience of being totally ill for 2 years and then waking up from surgery feeling like a normal person was a high that lasted for quite sometime and made all the unbearable things bearable.
 
As for the cough, it went with the colon.  Also, my skin abnormalities that no doctor could diagnose disappeared about 4 days post surgery.  My internist, who was brilliant, was convinced that both problems were manifestations of my toxic colon.  I believe she is correct.
 
In your situation with work it would be far better to have the surgery electively than wait until you are very sick.  Recovery will be faster and easier but I expect you know that.
 
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

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