how far will you let it go before you consider surgery

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Regular Member

Date Joined Nov 2008
Total Posts : 28
   Posted 4/19/2009 10:12 AM (GMT -6)   
I am just wondering.  I have had uc for 5 years and never found anything that put me in complete remission.  I know i will never have a normal bm in my life.  I stools are about the size of my 15 lb dog.  They said that my colon had scrank.  I still have to know where every bathroom is and fear to go out on the boat.  I don't know.  It is a big life decision because i am only 25 with a wonderful husband and 2 small children.

Regular Member

Date Joined Feb 2007
Total Posts : 344
   Posted 4/19/2009 10:23 AM (GMT -6)   
I know the feeling iand have the same thoughts.
UC diagnosed January 05
Past Meds: Azasan (Imuran) - piercing chest pains after six days so tried different brand aka Azathioprine - morning nausea /didn't really help after more than 6 months, dicyclomine (still flared), Remicade - 7 treatments (stopping because no dramatic changes), allergy shots (03-07), levbid, prednisone (been off since nov. 08!), rowasa
Current meds: Asacol 4 - 3x, Aciphex (acid reflux), canasa and rowasa alternating every other night, konsyl (fiber for bulking stool), multivitamin, caltrate 2x a day. probiotic (florasmart), astelin (nasal spray as needed for allergies), fosamax (bone density)

Veteran Member

Date Joined Aug 2007
Total Posts : 650
   Posted 4/19/2009 10:27 AM (GMT -6)   
Are you the mom you want to be with your UC though? In my mind... I'm 22..married to a wonderful husband... no kids yet and I definitely want them! But In my mind... I wont be the mom I want to be because I'll be too worried about bathrooms... I'll be in too much pain or too sick. I'd not be able to bring them to places like... out on a boat... to the park if there aren't bathrooms... out on long walks... anything that required long car rides or not knowing where bathrooms are...etc.

just bringing them to school every morning... what if i were stuck in the bathroom?

Just things like that I guess? My goal is def to be a surgery sounds like it would help me be one.
Kara, 22F Married.
Latest-Went to ER cuz I couldn't eat for 5 days and was having severe flare up after passing two kidney stones after a week of the flu. (long month)
GI tried to taper me off of pred fairly fast in hopes to keep me on Lialda and at a lower dosage of pred. to try mesalamine enemas again.  Starting the Imuran as soon as labworks done... longer pred time....yippee *rolls eyes*
Medications:Prednisone 40mg Again! (groan)Lialda 4 a day until Imuran
I am so sick of this disease!

Regular Member

Date Joined Oct 2006
Total Posts : 51
   Posted 4/19/2009 11:13 AM (GMT -6)   
I just had my first surgery after having two absesses and being sent back to the hospital two weeks after spending 10 days in for a flare-up.  I agreed to surgery after the big C  word was mentioned.  After many years with dealing with crohn's colitis (lucky me I have both) the chances of the cancer was hugely increased and well, I rather spend my years enjoying life instead of worrying about getting colon cancer when they can take out the bad part and reattach the good part and have a new start and out look.  Still healing from surgery, but doing okay so far.  It is a personal choice as well.

<FONT color=purple>Crohns-colitis for 12 years, First surgery as of March 09, bowel ressecetion. Meds include: pred, calcium with Vit D, salmon oil, vitiams.  Waiting to see what else the specialist will want me on!!

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Date Joined Feb 2006
Total Posts : 5698
   Posted 4/19/2009 12:40 PM (GMT -6)   

I had surgery for two reasons; one when I realized I had no quality of life and two, when I believed it was impossible for me to gain remission in 2 year flare.  I gave up so much of my life in the two year flare.  I couldn't commit to anything and lost out on international travel and I can't tell you how many social events.  Surgery for me gave me my life back.  I can travel at whim, and have not declined a social event due to my health the past 8 years, and take no meds.  I have my life back and then some.


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

Veteran Member

Date Joined Jul 2008
Total Posts : 748
   Posted 4/19/2009 2:12 PM (GMT -6)   
Ugh-I am sorry. I have't even had the disease for 5 years, I can't imagine dealing with a flare that long.

Last year when I was hospitalized, I was very fearful I would end up having surgery. Then I came to find out that the people who have done it are glad they did. But for me, I think i would try just about everything I could to avoid it at this point. Not really because I am scared of surgery anymore (though right now Humira has me doing pretty well, but I know I won't be on it forever, so I anticipate more flaring over the course of my life obviously), but the advances in medicine have been huge in the past few years. I just feel like right now, I would want to wait if I could and see what may develop in the future. When I hear Dr. Oz on TV talking about regenerating organs, I think that advances like that could one day (in the relative near future) could be huge for people like us. Imagine being able to grow yourself a new colon from your own cells in a matter of weeks? Not to mention advances in medications and such as well. Who knows what the future holds-and what the actual timeline will be for some of these things, but it just seems we are in a very dynamic time when it comes to medicine, and for me I think I would want to try my best to control things without surgery because of that.

That said, I feel much about this as I did about drug free childbirth (which will never be for me again because I have to have c/s now). My first I did drug free and would have finished off that way had she not been breech, but my labor was only about 12 hours from the first contraction until she was born, and only about 4 hours of that was really hard labor. If I were in that hard labor phase for 24 hours? Get me the epidural!! So I think it is easy for me to say I would go without surgery, but if I were flaring for 5 years? I think I would be on my way to a consult with my surgeon.

I wish you luck on this-raising children is hard enough when you are perfectly healthy. Doing it with this disease can seem like climbing Everest some days.

33 years old, stay at home mom of 2 girls, ages 3.5 and 2.5
Diagnosed in 2007
Currently on:
Asacol 6pills/day
Biweekly injections for Humira clinical trial-going well so far!!
Canasa suppositories-1000mg nightly for recent flare

Johnny K
Regular Member

Date Joined Apr 2009
Total Posts : 32
   Posted 4/19/2009 2:32 PM (GMT -6)   
I can tell you how far I let it go.
I was diagnosed at 13 and like you never went into remission. After missing most of my freshman year of highschool and spending 2 seprate week to week and half long visits in the hospital I was finally considered under control on 12 ascol pills a day 250 mg of Imuran and going on and off Pregnison every 6 to 9 months. I did this till my senior year of highschool in which i started spending about a week out of every 6 to 8 months in the hospital. when I was "under control" i would either push my way through the pain or i would spend alot of time in bed. I did manage to play football in highschool but it was in lue of constantly going back on pregnison because of flare ups. I told myself I had a normal life but I know I didn't. still surgery at 17 or 18 was a huge decision I didn't want make. I went to college and continued my routine of high dosages of medication and pushing through alot of pain. which on top of the medications caused me to have migraines. I was on alot of pain medication as well. when I came home last summer and spent another week in the hospital I had finally decided it was time. I got the first surgery in august and spent a month with a colostomy which time I still managed to go for walks, sit and talk with my friends, and attend a very light load of college classes. after the reconection surgery (for the J pouch) which I got in september I was down for about 2 weeks before I felt really able to do anything. By my birthday in November i was working and going to school and going out with friends on a regular basis. It's now been near 7 months and i feel amazing. I work out, run, go to school and work and still have energy to spare. I still keep an eye on where the bathrooms are but on a normal day i'm down to about 3 or 4 Bowl Movements a day. It's an adjustment but it's also better than I could have ever imagined. I have recently looked into joining the army and my surgeon actually cleared me to do it. I am waiting on my doctor for the migraine clearence...which p.s. I no longer have the migraines. I take no medications and I feel wonderful. It's an adjustment but one i'm glad i made. To tell you the truth if you feel you can keep going as is you should hold out, however I would say do not hold out so long that you HAVE to get the surgery, because you may not have as many options if you do. There are a few different types of surgeries and I would recommend looking at them all on your own as well as taking to your GI about them I have a big scar on my stomach but that is because of how I chose to have the surgery done because of how i'm built. My dad has a permanant Colostomy bag... I like my way better... Wish you luck
21 Male in Michigan
Dioganosed with UC: sept 2000
J-pouch Surgery: august 2008
Feeling wonderful and hoping I can help :)

Regular Member

Date Joined Nov 2008
Total Posts : 28
   Posted 4/19/2009 3:29 PM (GMT -6)   
i never have any energy.  My 5 year old is going to start kindergarden next year and i know i will never be able to pick him out or drop him off at school because there is always such a long line (like 30 min wait).  i just don't know.  I still think DH would be discusted with it.

Veteran Member

Date Joined Nov 2006
Total Posts : 552
   Posted 4/19/2009 4:04 PM (GMT -6)   

My daughter had 3 big flares. Each one kept her out of high school for 7-9 weeks at a time. In between she was great (no urgency, no worrying about bathrooms, etc). She never had to go to the hospital for her flares. But each time she needed stronger meds. And prednisone.
She didn't want to be on heavy hitting drugs for another 60+ years (she was 17 at the time). She didn't want to worry about when the next flare would come and how long she would be down for. She didn't want to worry about how UC would affect her going to college. She didn't want to worry about how pregnancy would affect her UC (as many have discussed). She didn't want to worry about having to be a mother during a huge flare.
She wanted to have an average high school experience (something she only had a taste of in 9th grade). She didn't want to miss many of the things she missed in 10th and 11th grade.
So at the tail end of her last flare last spring, we consulted with a surgeon (something we had planned to do before she began that flare). As scared as she was, she wanted it. She had step 1 in July, spent the summer recuperating and adjusting. She began senior year with her ostomy but was healthy. In November she had step 2. She had a quick recovery.
This has been exactly the type of year she hoped for. Wonderful times, wonderful memories, wonderful friends. No medications. She can go many hours without worrying about where the bathroom is. She may know she needs to go but can hold it for a long time. She is looking forward to college without worrying about UC.


--Mom of bratcat (17 years old) and nonamejames (20 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!
11/10/08-Step 2 reconnect! Living and loving life as a teenager should!
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

Regular Member

Date Joined Mar 2009
Total Posts : 108
   Posted 4/19/2009 4:25 PM (GMT -6)   
I have been diagnosed only a month ago and I am on prednisone and mezavant... Still on a flare... it went well for two weeks and then the symptoms came back. I am very tired of this already! I am seeing my specialist this week and I want to know what my options are I don't want to be on pred for too long... :S I don't know how long I should wait , hoping for remission. Sometimes I feel like having my colon removed would be a huge difference but maybe the best solution... It's too early yet though, I think...  I am still trying to find ways to get better (sunflower seeds , spinach, probiotics, natural foods, no sugar , no refined foods.... )  I won,t wait 5 years if I don't achieve some kind of remission before having a surgery that's for sure....
Diagnosed with pancolitis 03/09
Prednisone 40 mg, Mezavant 4.6g
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg and Paxil 10 mg for anxiety (since 2003)

Post Edited (PinkPaperclip) : 4/19/2009 3:30:38 PM (GMT-6)

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 4/19/2009 4:48 PM (GMT -6)   
I can tell you that i let mine go almost 8 years too long!
I got UC in May 0f 1999 and spent the next 8 years in and out of the hospital, missing work, losing jobs, wasting hours in the bathroom and basically losing my quality of life completly!
When i got pregnant in 2004 i went into complete remission. And that was amazing! I was so happy and felt so good again.
After my son was born in June 2005 i went back into a horrible flare and basically stayed that way until August 2006 when i started remicade. Having my son and not being able to do things with him was killing me, it was awful, i couldnt play with him or take him places and like you i worried about school i would have had to get up at 5 am just to be well enough by time to take him to school! and then sit in the line for 30 minutes, no way i could do that!
I had thought of surgery, but wasnt sure. I can tell you the exact moment i decided though. We were at the beach, my son had just turned 1 it was July 2006 and he went off with my family to go walk on the beach for the first time and be able to actually get in the ocean and play for the first time, and i was stuck in the house using the bathroom! And at that moment, i decided, this thing is going!
And when we got back i went to the dr and said, take it out! He talked me into remicade and i should have said no, but i tried it and wasted almost a year with that failing! Finally on April 17 2007 (i just celebrated my new birthday!) I had this awful thing out and life is great now!
I think the decider should be when you have lost your quality of life and you are not the person you want to be because of a colon that doesnt even want you anyway, lol.
I seriously doubt that your husband will be grossed out by it, he will be happy to have you healthy! And honestly, if you are anythign like me, you probably have some misconceptions abotu what it will be like having a bag. Even after doing lots of research i was still kind of grossed out by it, it wasnt until i talked to people with them and saw the stuff you use that i got over that!

Good luck with your decision!

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 4/19/2009 4:52 PM (GMT -6)   
I'm not going to let it go that far at all before I'll consider surgery. If I find that I'm unable to maintain the quality of life that I want, then I'll have surgery. I still have a lot of medications to try, but if none of them are able to keep me in remission for at least a year at a time, I'll probably be considering it.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg 20mg 15mg 10mg 10mg of Prednisone every other day, Culturelle probiotic, and Zoloft (25 mg).

Regular Member

Date Joined Mar 2009
Total Posts : 108
   Posted 4/19/2009 7:38 PM (GMT -6)   
Summerstorm - your story is very interesting! Really made me realise how far I wanna go with the medication testing and the time I am willing to give up trying to achieve remisssion... Thank you for sharing :)
Diagnosed with pancolitis 03/09
Prednisone 40 mg, Mezavant 4.6g
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg and Paxil 10 mg for anxiety (since 2003)

Regular Member

Date Joined Sep 2007
Total Posts : 365
   Posted 4/19/2009 9:40 PM (GMT -6)   
I have had UC for over 14 years now. I just turned 35. I am married with a baby on the way. During my twenties I put myself through college (Engineering) and worked full time. It was the hardest 10 years of my life...stress, UC, college, you name it... Last scope I had pancolitis. I am due for another scope soon... I would say my quality of life isnt as bad as some....I havent yet been hospitalized, and somehow managed to finish college and I now own my own company... However I missed out on a lot, and have mental issues with urgency / social fears, etc... In my case, I am hanging in as long as possible in hope for some sort of cure or new treatment. Until I am told I have "C" or my life is in danger, I will deal with the quality issues as best I can... However everyone's case is different and everyone makes decisions for a reason. For now that is mine, but I sure as hell am glad there is an option for surgery as a last resort if all else fails.
34 yr old male. UC for 14 years. Started left-sided, most recent scope shows pancolitis. 30mg pred (as of 2/01/09), 12x pills Asacol per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Spinach and sunflower seed diet (moderated recently due to kidney stones). Multivitamin. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!) "I poop in the woods because I can"

Regular Member

Date Joined Feb 2008
Total Posts : 79
   Posted 4/26/2009 11:38 PM (GMT -6)   
It only took a year for me to decide on the surgery route and here was my thought process and experiences that made me come to my final decision for surgery. I concluded the "light" medicines I was taking were doing more harm than good (20 + pills a day for a year without improvement...and the other "stronger" medicines down the road have side effects that include ridiculous). I never went into remission, I felt tired all the time and basically I was just existing and really wasn't living any so called life...unless you like laying on the couch or bed and watching TV all day, sleeping for 14 hours+ and still being chronically fatigued, living in a bathroom and feeling like crap (literally and figuratively), etc.

I figured even if I found the magical combination of foods, herbs, and medicines and went into remission, how long would that last, would my life always be a constant yo-yo between being somewhat healthy and sick and living with a suppressed immune system for the rest of my life. Then ultimately, 30 or 40 years down the road, the very high probability of being diagnosed with colon cancer and having to go through these surgeries at age 50 or 60 anyway when I could have them now at age 30. Why should I sacrifice the rest of my body, and my future quality of life, by trying to salvage a diseased organ that I could live a near normal life without??? The clincher for surgery was an answer I got from my GI doctor to my question...If I ever reach remission is my colon normal? He basically said no, even if you feel normal and everything "looks and functions fine" on the cellular level it is still inflamed (your immune system is still attacking it), this is why your colon cancer risk skyrockets (up to 30x normal) 2 to 3 decades after the initial UC diagnosis...this is why you need yearly colonoscopies 10 years after a UC diagnosis whether your in remission or not.

So for me it was a no brainer to have surgery right away. I figured I only lost 2 years of my life to UC, but now I'm making up for that lost time.

Hope this helps.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Severe Pancolitis
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
8/05/2008 - Unexpected surgery to remove blockage caused by scar tissue
11/20/2008 - J-Pouch + Reversal Surgery - Now living happily ever after!!!
"When life gives you lemons...make lemonade"

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