Considering surgery

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butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 10/16/2007 5:55 PM (GMT -6)   
Im 41 years old and have had uc for 20 years.  I had a colonoscopy done two mnths ago and my gi said i was in remission.  However, I struggle daily to make it to my job which is only a 10 minute drive from my home without having to pull over and go to have a bm in my tub which i always carry in my car, i wear a diaper everyday to work because it takes me ten minutes to get to my office from the parking lot because i have to go through two locked gates.  I have a nine year old and he basically has no life just like me due to the fact that i wont go anywhere other than work because i always have urgency.  My stools are formed and i dont have any bleeding, just abdominal pain daily, and urgency constantly.  Please give me some advice.  Should i have the surgery? 

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/16/2007 6:24 PM (GMT -6)   

Butterfly,

What has your GI recommended to you?  Are you on any meds?  Has the urgency gotten worse over time?

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 10/16/2007 8:25 PM (GMT -6)   
My gi has me on Asacol 2 3x aday and protonix. My urgency is getting alot worse. Ive missed two days of work now because of abdominal pain and urgency. I wasnt having the pain when he did the scope. Hes not very sympathetic. In fact he just said im in remission and oh yea he also gave me bentyl and said that was for the urgency and ten refills on the asacol and protonix.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/17/2007 4:21 AM (GMT -6)   

Are you receptive to inquiring with another GI for a second opinion?  It never hurts to get a 2nd, especially if you feel that the first is off base.  I certainly wouldn't hesitate given the lack of sympathy.  Most GI's have never had the symptoms so are pretty clueless how it really "feels" to us.  Are you in a location that has more than one GI to choose from?

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 10/17/2007 6:57 PM (GMT -6)   
With my insurance i can only see the four doctors in this medical group and ive seen them all and they all have the same cold attitude. Your right they have no clue what it feels like to live with this dreaded disease. I once got so angry at one of them that i asked him if he ever had uc and that if they ever found a cure he probably would be out of business. I know that sounds harsh but when you leave your gi's office crying because you feel worse when you leave than when you got there, i think thats a problem. Im so frustrated right now! Thanks for being there:)

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 10/17/2007 7:23 PM (GMT -6)   

If your quality of life is poor, and it sounds as if it is, you can opt for surgery.  I had the j-pouch surgery 7 years ago due to UC.  I have never regretted my decision, surgery gave me my life back.  I encourage you to visit www.j-pouch.org  The site is helpful for anyone considering either a j-pouch, k-pouch, or permanent ostomy.  Most people there had the surgery for UC so you will be in good company.

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
 


butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 10/17/2007 8:30 PM (GMT -6)   
Thanks again for caring and giving me advice. I really dont have any quality of life. Im at the point that the thought of making it through work on a daily basis is becoming overwhelming. If one more person tells me this is all in my head and i cause myself to have urgency and go to the bathroom, i am going to scream! My family sees i have no life and its a chore for me to work, yet they still discourage me having surgery. My surgery will be permanent not reversible due to where my uc is located. My faith is even weary right now. Im usually at church tonight but Sunday my flare kept me in the bathroom most of the service so i figure why bother. I know i have so much to be thankful for but i feel so alone im having a really hard time seeing that right now. Dont even want to leave my house anymore! Thanks again for letting me vent and have my own little pitty party.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/17/2007 8:49 PM (GMT -6)   
if you are having such a time, i would think surgery would be good for you too.
i wasted eight years messing with being sick, and i wish i had had sugery the day i found out i was sick! my GI was pretty good about it, but he didnt' want me to have surgery, and i finally said, either you find someone to take it out, or i will take it out myself! he found me someone, lol.
i hope things get better!

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 10/17/2007 9:01 PM (GMT -6)   
It really saddens me to read how so many of you have unsympathetic doctors. I have been so blessed to have good docs ready to hand out the pain meds and ready to listen to me, explain things to me, and just be there. I am so sorry for all of you struggling with these docs!!

butterfly1
Regular Member


Date Joined Jun 2007
Total Posts : 112
   Posted 10/17/2007 9:43 PM (GMT -6)   
My reIgular md is more sympathetic than my gi, so i go to him and he does his best to help me. At this point if i knew it wouldnt make such a MESS i would consider taking it out myself.lol Guess i jus gotta go minute by minute and c wat happens next.
Summerstorm im just curious what your history was and how bad did u actually get before you came to that point?

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 10/18/2007 1:59 PM (GMT -6)   
Almost all my GI's over the years have had this same unsympathetic attitude, especially when it comes to pain. They tend to measure disease activity purely by endoscopy, amount of blood and bowel movement quality. Anyway, I had no pain during my long med-free remission years and yrears ago but in the past 9 years non-stop flaring and constant pain even in 'remissions' (nothing more than veyr mild visible inflammation, normal BMs, and occasionally next to no meds- because I can't tolerate any 5ASAs).

Not that I suggest you get off any maimntenance drug that keeps you in remission (unless it was replaced by something else and/or unless it actually and clearly worsens your UC as unfort. for me is my case) but it is possible that the Asacol is causing your pain- you'd have to cautiously experiment yourself.

Anyway, due to constant pain and frequent need to boost pred, I am banking towards surgery myself, so maybe you'll see me over at the j-pouch site suebear mentions- it is a great and sympathetic sight incl. for those like you and me who are reluctantly shifting over to that view. In the meantime, I hope you solve the quality of life issue.
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 mg pred, 100 mg Imuran
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet
 
 
 


ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 10/19/2007 1:42 AM (GMT 0)   
I 'fired' my first GI and did some research to find a better one. He wasn't in any urgency to do anything but try several meds that didn't work. I called his office after each drug and I kept bugging them.

I finally called his office after a bad 24 hours of being in pain and told him I needed him to refer me to a good surgeon. He did refer me to a good surgeon who did some tests, which I don't understand why the GI doctor didn't do, that showed my colon had practically shut down.

I'm having the colon completely removed and am looking forward to life after I recoup from the surgery.

Don't accept these doctors stringing you along.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/18/2007 8:06 PM (GMT -6)   
butterfly-in may of 1999, i took a Z-pack for strep throat, and started having some bleeding, well it wasnt' too bad, and i just dealt with it until after i got married, that was may of 2001, i didn't see a dr or anything, well i did, but he was a jerk, didn't do my scope because he ran out of time.
Anyways, in Jan of 2001, i started having a lot of trouble, and finally say a dr, who was going to do a scope, but something happened and i had to cancel, i dont' remember what. Anyway, after i came back from my honeymoon, i started getting worse, throwing up all the time, and yada yada yada. Well i lost like all kinds of weight, i could pull my pants off without unbuttoning them! that part wasn't too bad, lol.
Anyway, i had to go to the hospital, my blood was down to 7.0 (supposed to be between 12-14) anyway, with some iron pills and getting the bleeding under control it went back up, but dr said it was UC. anyway, i went on immuran and that worked for alittle while, then it just kept getting worse and worse, i just felt sick all the time.
Well i endend up back in the hopstial in 2004, so dehydrated that my skin was so tight my hands wouldnt' straighten out, teaking lots of steroids, all that good stuff, so that got it under control for a short time, but i had already lost three jobs due to this and it was gettingold. i was taking like five immodium a day, and drinking pepto like water. Anyway, i got pregnant and it went away completly, it was great! after my son was born it came back though, with a vencance, i went to the dr and he said, try remicade, and i did, and it helped for a little while, but not much. that was august of 2006, after i had missed a good deal of my son's life, not being able to take him places, i didnt' see his first time in the ocean, lots of things i shoudl have been able to see. when i had gone in aug 2006, i had wanted it out, but he said, remicade remicade, so i said ok. THen in feb of 2007, i said, either you take it out, or i will!
i was in the hosptial again in aug 2006, when i had to stay away from my one year old, who had no idea why mommy was gone.
so in april 2007, i had surgery and life is GREAT now!
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