Anyone considering surgery??

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Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 7/29/2009 9:18 PM (GMT -6)   
Hi. I am a 31 year old female with 2 healthy little girls.  I just recently had a miscarriage and now I am in a flare up.  I had a colonoscopy today which showed that my disease has gotten worse- now up 55cm on the left side.  I take 6MP which the doctor increased to 75mg today, Colocort enemas every night and Lialda 4 tabs/day.  I have lots of urgency and frequency and am pretty much emptying bloody mucous.  I am sick of being sick and need to be healthy to take care of my girls.  I have taken Remicaide in the past but had a reaction to it.  My doctor is considering putting me on "biologics" which are similar to Remicaide but they do not cross react.  I have an appointment to see a surgeon next week.  My doctor does not feel like I am ready for surgery but I don't want to keep doing this.  I hate the fact that I take drugs that treat cancer patients and that my risk for colon cancer increases as my disease worsens.  Any advice regarding surgery would be helpful.  I am thinking to have the surgery where you have a colostomy bag for a couple of months and then the procedure is reversed.  I think it's called an Ileoanal anastomosis something or another.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/29/2009 9:48 PM (GMT -6)   
Well i had UC for 8 years before i finally said this is enough i am beating this disease i am taking this colon out and trashing it!
I was 29 with an almost 2 year old when i had surgery and i was like you i was unable to take care of him. I was spending all my time in the bathroom and he was having to go in there with me. That poor baby had toys in the bathroom and crayons to color on the shower with. and we went to the beach when he was just a little over 1 and i had to sit in the house and watch my family take him to the beach and i couldnt go.
I remember being in the kitchen in that house and deciding that was it, i was doing this. And i asked my Mom if she would hate me and think i was gross if i had a bag, and she no that was stupid for me to think that, lol.
anyway i got back when to the dr and asked for surgery and he convinced me to try remicade, i should have never done it. it failed after a few months and i was in worse shape than before. So, April 17th 2007 i had surgery for a perm ileo, got this nasty old thing out and got my life back!!! I call that my new birthday, lol. I honestly woke up from surgery and felt clean, i coudl feel the sickness gone, it was amazing.
I chose the perm ileo,not the jpouch which you are considering, but they both cure UC. Anyway, its amazing, i have tons of energy now, i can play with my son, i can eat anything whenever i want to (its showing, lol) i can go whereever whenever and do whatever whenever no worrying where a bathroom is or if i will get sick.
Anyway if you have any questions please ask, and good luck in whatever you consider

mikeman
Regular Member


Date Joined Jul 2009
Total Posts : 66
   Posted 7/30/2009 2:19 AM (GMT -6)   
ill be 32 yrs old in a few months....the surgery feels like I added another 50 years of happiness to my life. I had my colectomy a month ago. I can go shopping again, play with my kids more, laugh more, travel further and relax more. All of these activities without worrying about where the nearest bathroom is.
I thought I could beat UC with diet, exercise and "medicine" but the meds didnt really work and my flares got longer in duration and the disease got worse. There comes a point where enough is enough.
If you get the surgery from a team of professionals who have done the procedure hundreds of time, you will get your life back. It wont exactly be back to the way it was before you had UC because you still have some risks, challenges and adaptations with a pouch- external or internal. The closest we have to a cure is the surgery.
"First, do no harm" an oath many physicians take when they enter medical practice
Good surgeons complete this oath by saying "I will not harm you, I will heal you!"

Age:31 Married with children.
--
Ulcerative Colitis cause: In 2003 I took Accutane for about 4 months, started getting strong side effects of abdominal cramping and bloody stools.
May 2004: Diagnosed with Left sided UC -
Should have thoroughly read the IBD warnings on Accutane-side effects were now permanent. (update June 26th 2009: Accutane taken off the market for drug maker realizing it is a dangerous drug)
May 2004- May 2009: Prednisone, Asacol and many other med's that did not work well-Remicade was great for 16 months then suddenly stopped working.
---
May -June 2009: Pancolitis- chronic 2 month flare up that put me out of work and made me seriously think about surgery.
June 24th 2009: elective colectomy/ileostomy
August 2009: planned rectum removal and j-pouch construction.
October-November 2009: planned Reversal.
----
Summary: Suffered 5 long years with severe Ulcerative Colitis, Anxiety and depression. Today-No more harmful drugs. No more running to the bathroom 20+ times a day. No more cramping and bleeding. No more embarrassing situations of incontinence. Satisfied with the first surgery!


broadwind
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 7/30/2009 5:35 AM (GMT -6)   
Surgery is difficult and painful for a few weeks but you will likely notice a huge boost to your health and energy almost straight away. I had my colectomy at the end of may 09 and by end june 09 i was feeling great and not having to take any meds at all is such a relief. I still have two surgeries to go until my pouch is finished.


Male, 33yrs, Australia

Bowel problems started 04/03
Pan-colitis UC Diagnosed 08/07
Hospitalized Aug 05, Aug 07, Mar 09
Tried all the meds except cyclosporin and the biologics
Colectomy 28May2009
Schdeduled 2nd surgery 3rdSept09
Schedule take-down 3Dec09


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/30/2009 7:06 AM (GMT -6)   
The best decision I made for my UC was surgery! I had it done 8 years ago and have no regrets. I wish I would have done it sooner.

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


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 7/30/2009 10:21 AM (GMT -6)   
What a great thread! Very encouraging since I too feel like I am at the end of my rope. I am very interested in talking to a surgeon.
Summerstorm--what made you decide not to go the way of the j-pouch? Just wondering! Thanks!
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/30/2009 7:50 PM (GMT -6)   
Amywaffle-I looked at the jpouch, the kpouch and the perm ileo and foudn out alot about all of them before i decided.
The reasons i didnt want the jpouch were that i didnt want the extra surgery, or the chance (its very small) that it might fail, and honestly i never ever wanted to use the bathroom the "regular" way again! To me, it just didnt make sense to get a jpouch and then have to go through the recovery time where you go to the batrhroom a whole bunch for the first couple of weeks when i had a small child at home and that was one of the reasons i had surgery was so he wouldnt have to be in the bathroom.
And i was worried about the pouch failing, (im not a glass half empty or half full kind of girl, im a why fill it anyway, im just gonna spill it) and even though the chance of failure is very low, i think like 10% or something, it would happen to me!

Anyway, thats kind of a rambling answer, but all my answers all, lol.
I think alot of people get scared of surgery because they are afraid they will end up "stuck" with a bag if their jpouch fails. And i think thats sad, because those people miss out on having their life back. Life with this bag is just fine, noone knows and noone can tell and the few people i did tell dont care! When i finally did tell my friends, one of them was actually jealous. I think she wants one herself!
Anyway, if you have anymore questions ask away, i love to talk, lol.

AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 7/30/2009 9:42 PM (GMT -6)   
Hi Nutz, I'm so sorry about your miscarriage. We're kind of similar, in our early thirties with 2 healthy daughters. I know that if I have a major flare I would rather have surgery than go on biologics and other strong meds that leave you vulnerable to so many things. You've received some great advice from our board members already. They have really helped me to feel that surgery isn't such a bad thing. Best of luck with your decision.
32 yr old female
Mild Pancolitis
UC since 2000 - in remission for most of those 8 years med free.
Cannot tolerate mesalamine. Currently take probiotics and fish oil. Trying Applied Kinesiology & supplements.


Nutz
Regular Member


Date Joined Jul 2009
Total Posts : 149
   Posted 7/31/2009 3:36 AM (GMT -6)   
Thanks to all for all of your advice. I was pretty desperate today and called my dr because my colitis pains were excruciating and I couldn't get out of the bathroom. He started me back up on Prednisone and I cried my eyes out. He has me on 30mg for 10 days without a taper down schedule. Anyone heard of not tapering down? I've never taken it this way. I am excited to see a new surgeon next week because I am tryly considering the j pouch surgery. I don't know if I can handle anymore IV infusions of meds that eventually fail you:(
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