Considering Surgery - But Surgeon Cautious

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Salamore
Regular Member


Date Joined Jun 2008
Total Posts : 109
   Posted 6/20/2010 7:32 AM (GMT -6)   
Hi All,

I'm new to this forum, and want to let everyone know that I have learned so much here and have gotten so much support already, so many Thank You's!

I have UC for the last 22 years, and have been flaring twice a year for the last 4 years; the past two years have been the worst. I was put on prednisone this last flare for 6 months and had a hard time weaning off this drug once I got below 10mgs. The doctor also put me on Lialda twice a day, and Rowasa at night, I went into remission for a few months and here I am flaring since May and on Wednesday, 6/15 I almost fainted at work and went to the hospital, treated for dehydration.

The next day I had a follow up with my Colon Rectal Surgeon, he performed a flex sig and saw only mild inflammation. I told him I'm very sick, tired and weak and this disease is becoming all consuming; I'm living my life around the toilet. He said he has been working with Lailda for a while now, and some people get massive diarrhea from the drug, so he's taking me off and putting me back on Azulfidine 2 pills 4 times a day, and Cortfoam in the morning. He also called in my GI and we had a meeting, the plan is if I don't show signs of improvement they will admit me into the hospital for two days for complete evaluation and liquids, if nothing works after this then we will consider surgery. I told them I'm interested in the surgery and they said we don't just jump into surgery, steps have to be taken before we can remove the colon and do a j-pouch!

Note: I had lymphoma in 2002 and was treated with CHOP, so I cannot go on Remicade, Humira or 6mp, they could bring back my cancer.

I just want to know is this normal protocol? I just want my life back and this disease has been all consuming for me lately...

Any thoughts would help.

Renee
sad
I'm a survivor and I have the battle scare to prove it."

Post Edited (Salamore) : 6/20/2010 6:35:40 AM (GMT-6)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/20/2010 8:47 AM (GMT -6)   

Well your experience is not like mine but I think your surgeon is being cautious and trying to allow your body to acheive remission before making the surgical decision.

I had been in a 2.5 year flare and was pred dependent and the last drug of choice back then was 6MP.  I consulted a surgeon and told him my quality of life was poor and here I am 9 years later with a jpouch and enjoying life again. 

The best advice I can give you is to consult with a CR surgeon who has a lot of experience.  I had to travel 2 hours to have my surgery and it was well worth it as the local CR surgeon in my town would have botched the procedure.  I don't know where you live but I do recommend you visit www.j-pouch.org and get surgeon recommendations in your area.

 

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


Salamore
Regular Member


Date Joined Jun 2008
Total Posts : 109
   Posted 6/20/2010 9:03 AM (GMT -6)   
Hi Sue,

Nice meeting you and so nice to hear the Great Results you have had.

The Doctor I'm seeing is renowned Colo-Rectal Surgeon in our major city, which is about 40 mins from my house. We also live about an hour north of NYC and about 20 mins south from Yale University Hospital so I guess it wouldn't hurt to get a second opinion.

How long have you had UC, and how was the surgeries, painful?

I want to be able to say the same words, I'm free and living my life.

thanks for the inspiration.

Renee
I'm a survivor and I have the battle scare to prove it."


Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 6/20/2010 12:00 PM (GMT -6)   
My surgeon was also cautious and knew that a ran the gammut of meds and it was inevitable between him and my GI that I would need surgery. Always better to err on the side of caution although it is your decision at the end of the day if quality of life etc is being destroyed by this crappy disease. As sue said, it is good to go with someone with lots of experience. Hope you feel well soon. hang in there.

Salamore
Regular Member


Date Joined Jun 2008
Total Posts : 109
   Posted 6/20/2010 3:17 PM (GMT -6)   
Hi Anthony,

I have read some of your post and so inspiring.

I should also say, that both doctors gave each other a look like, she's headed for surgery but wanted to give the meds once more shot!

Did you have/had UC and I believe you are preparing for your J-Pouch. Also when flaring were you tired and weak all the time?

Thank you,

Renee
I'm a survivor and I have the battle scare to prove it."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/20/2010 4:41 PM (GMT -6)   
i dont think you are jumping the gun for surgery! And you dont have to try all the meds at all, its your decision!
I only went through imuran, 6mp, asacol and remicade, i didnt try anything else, and i actually wwas going to do it before i tried the remicade.
You should find a very experinced surgeon, and talk to them about what you want, and why you want it.
I have a perm ileo, and the surgery does hurt, but its worth it, i promise!
You get to say my favorite sentence "when i HAD UC"
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


Salamore
Regular Member


Date Joined Jun 2008
Total Posts : 109
   Posted 6/20/2010 4:53 PM (GMT -6)   
Hi Summerstorm,


My surgeon asked are you thinking of surgery and I said Yes, I have lived with this disease, now it's controlling my life, its all consuming.

And don't you love when your family and friends try to tell you what to do, like change your diet, maybe your eating the wrong foods. And I love this one...that's a big surgery, have you tried homeopathic, PLS! I get so angry, I would love to see these people live with my Colon and see how they feel. I believe no one has a right to tell you what to do with your body, expect yourself and your surgeon.

Thank you,

Renee
I'm a survivor and I have the battle scare to prove it."


Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 6/20/2010 5:21 PM (GMT -6)   
haha, not to laugh, but I did get the homeopathic and it is what you are eating type thing as well. My mother was very supportive because she saw the pain and agony I was in so she really didn't advise me with anything ... she just didn't know what to do. I didn't either. Mommy rocks!! ;) The meds I were on were: Asacol, Lialda, 6mp, and then Humira ... all of which did absolutely nothing, although the Humira, in some ways, kept things at bay for a little bit, but at that point I knew I was heading for surgery and my GI was even like if this is not going to help you, then surgery may be better for you. I already knew I wanted the surgery months before, but wanted to give things a try like most people. My life was destroyed for nearly 2 years. I mean, I didn't go out at all!!! Accidents were prevalent and yes, the weakness was insane. It may be due to you being anemic from the UC ... that is what it was for me ... and guess what ... I just got my hemoglobin counts back and I am at 12 when I tested before surgery I was at nearly 8 close to a blood transfusion. Surgery has saved me and has given me most of my energy back. Still recovering, but I am going back to the gym for some like working out tomorrow to prepare for next surgery. It seems like you already know what "you" want to do and like summerstorm said ... make sure you have someone who is experienced. That can't be stressed enough. My doctor was recommended to me by my mother's friend who's son went for the same exact surgery.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/20/2010 10:04 PM (GMT -6)   
my whole family was very supportive none of them told me to try other things, my grandma was very upset, she wanted to do it for me, but she was happy i would be well
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


Salamore
Regular Member


Date Joined Jun 2008
Total Posts : 109
   Posted 6/21/2010 5:17 AM (GMT -6)   
Thank you Anthony and Summerstorm!

:0)

Renee
I'm a survivor and I have the battle scare to prove it."


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/21/2010 7:53 AM (GMT -6)   
I had UC in remission for 10 years before the big flare that separated me from my colon. It sounds like you are in good hands with your surgeon and his approach.

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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