Surgery Questions

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subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/11/2009 6:37 AM (GMT -6)   
I'm trying to gauge the prognosis for Colitis over the long term. I have had Colitis for only four years now. I have some questions for those who have had surgery. How long did you have Colitis for? Which worked better for you before opting for surgery, medicine or alternative treatments. I don't take medicine myself, because alternative treatments work better for me and Colitis medicines have some nasty side effects.

Did you use Colitis medicines before getting surgery? Did they help? If so, how much did they help?

Did you try alternative treatments such as fecal transplantation, Probiotics, and diet before getting surgery? If so, which ones did you try. Did they help? If so, how much did they help?
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

Post Edited (subdued) : 2/11/2009 5:58:35 AM (GMT-7)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/11/2009 8:24 AM (GMT -6)   
I had UC for 12 years before opting for surgery. I don't think length of time with the disease is an issue. I have met many a UC patient who had the disease for 3 weeks to a couple of months and ended up losing their colons. When treatment fails and patient life is at risk no one cares how long the patient has had the disease. I had been taking probiotics for 30 years before even being diagnosed with UC so I don't think they ever helped much with my disease. I was a big believer in alternative medicine (you can read my signature line) and none of those remedies helped to get me in remission. Fecal transplant was not available back when I was ill nor was Remicade or Humira. Western treatment ended with 6mp of which I am grateful. If I had the opportunity to take Remicade I would have been like a junkie looking for a fix. However, in hindsight I am glad to be permanently off prescription drugs and I am glad to have predictable health.

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


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/11/2009 8:58 AM (GMT -6)   
Sue I feel happy to see that people with J pouch are doing fine. All the best to you. Stay well. Sue I really don't know what went wrong with my surgery. Anyway, I have adjusted myself now. I wish somebody could find a solution to my incisional hernia or horse shoe fistula, communicating with my J pouch.

45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/11/2009 9:28 AM (GMT -6)   
i had UC for 8 years and in hindsight should have gotten surgery the first day i saw blood!
i didnt actually try alot of meds, and some people say that i was wrong for that, i tried immuran which helped for a while,but i was always sick feeling, i triedthis stuff called total leaky gut, which did actually help some, but it was like 70 for 2 weeks and i couldnt find it around here. and then i went to asacol and immuran then off the immuran and just asacol, then onto remicade, asacol and 6mp, and that wasnt' helping either so i said, take this thing OUT. I was tired of just waiting on something to fail and tired of worrying if my liver was gonna fail, if my hair was gonna fall out again, i was constantly on and off prednisone! and it was the best thing i ever did involving the UC.

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/11/2009 9:32 AM (GMT -6)   
I had u/c for 6 years. It feels like WAY longer than that. I only achieved remission for 8 months. I tried just about everything-no fecal transplant-that sounds gross. But I did try remicade, all the 5 asa's, imuran, enemas, suppositories, even a study. I tried diets, acupuncture (which made me feel worse), probiotics, and other weird stuff. The one diet that DID help is the restriction diet. Eat really really bland (there's a whole list of things you can't eat) for 2 months and then introduce foods one at a time to see what bothers you. It helped to control my symptoms, but I wasn't in remission. The only thing that really helped was steroids. And even on them, I still had urgency & bleeding. And you can't stay on those forever. Who would want to.

I agree with Suebear about the severity of the disease, not the length of time having it, be the most important issue. When nothing else works, but surgery is a cure, it's an easier decision to make (Easier, not easy). I still struggled with the decision for years. I was told years ago that my dz was severe enough that I should consider it. I was not ready then.

But, having the dz for years does significantly raise your chances for all types of butt cancers. I definitely weighed those chances in my decision.

I'm glad I had surgery. I feel better than I have in years. I don't have to worry about all that u/c stuff and drugs. I'll be off pred in 2 weeks (which is a good thing b/c the hair is leaving my head and growing on my upper lip-jk.....not really).
And I can eat anything.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/11/2009 12:28 PM (GMT -6)   
Thanks for the feedback. I understand about the severity of the flareup being a major reason for getting surgery. My second flare was really bad. It was partially my fault though. I waited too long before seeing a doctor. I had to wait until I was working for the company for a year before my company would cover my health insurance. I was worried that if I got private health insurance or if I saw a doctor before having insurance, my condition wouldn't be covered.

I didn't know Probiotics have been available for that long. It was only last year that I first saw them being sold in drug stores. Why didn't my GI tell me about them?
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/11/2009 1:29 PM (GMT -6)   
Your GI didn't tell you about probiotics because there has been no research to indicate whether or not they help with UC. Obviously in my case they did not help but I took them anyway because I had been taking them for many years. Probiotics are considered a supplement and as with many supplements there is no regulation for their efficacy or their dosage. It's uncharted territory.

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


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 2/11/2009 2:45 PM (GMT -6)   
I'm currently in remission thanks to Remicade mostly as well as some other meds. It took me a couple of years to achieve remission though, I was on Pred for two years and have permanent issues left over from that. If I flare again I have decided to get the jpouch surgery. I cannot go through another flare. I am grateful for being able to put the surgery off for now as it's not a good time for me to be out of commission for two months or so, so I am keeping my fingers crossed that the Remicade keeps on keeping on!

Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

13 Remicade infusions: 1st: 7/21/07; most recent: 1/21/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro

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