How Early is "too early" to consider Surgery?

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Big Dog
Regular Member

Date Joined Aug 2008
Total Posts : 62
   Posted 12/2/2008 12:33 PM (GMT -6)   
A few days over a year since diagnosed with UC.  Flareups at a minimum but horrible side effects from several meds.  Tried Asacol, Lialda, generic 6MP, and Purinethol.  Now Imuran.  So far there's been trouble with them all - either respond to the med but get high toxicity levels or body doesn't metabolize the medicine.  This Imuran is doing the same thing.
Only been diagnosed a year, is it too early to throw in the towel and do surgery?  Being only 8 years old we were hesitant to even consider surgery.  Should we?
Mother of 8 yo UC child
Lialda 3 pills daily
Imuran 50mg 3x daily
Fish Oil, Probiotics, Immune System Boosters, Multi-Vit with Calcium

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 12/2/2008 1:05 PM (GMT -6)   
So sorry to hear about your child's suffering. Some do go the surgery route pretty quick when none of the meds are working or usable for them. You'll also hear lots of advice about bringing on remission through probiotics and diet, but I personally think that's a long shot once someone's quite ill. I've come to be much more open to the surgery option after hearing the experience of folks on this board.
What a tough decision, good luck.

Big Dog...I didn't expect that pen name to belong to a young mom!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.

Charlotte Gilman
Regular Member

Date Joined May 2008
Total Posts : 100
   Posted 12/2/2008 1:15 PM (GMT -6)   
What does your child's GI say?

I am 34; had both steps of j-pouch surgery this year. I've been really satisfied with it. Young children (basically below 18) are reputed to do even better than adults in terms of pouch function once the surgeries are over; the body is just more adaptable at that age, I guess.

I have also read that the long-term risks of dysplasia and cancer are much, much higher in people diagnosed with UC as children than in those who are diagnosed as adults. If I had a kid with it, knowing what I now know about life after the surgery, one year would be more than enough for me.

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 12/2/2008 1:26 PM (GMT -6)   
looking back on it, i dont' think it's ever to early to consider surgery. Especially in a case where you have a child who is lookign at face the rest of their lives on harmful meds on what might help. Some people call it giving up when you get surgery, i look at it as taking back your life, and kicking UC's butt! i mean, really you are taking your colon out and throwing it away, what else could you do that would make you"win" more, lol.
If the meds are makign your son sick, and he is still not getting much help, then surgery is probably a good thing to look at.
If he were having great results on the meds and not having side effects then i might think it would be better to wait until he is a little older and could understand more, and maybe be a little more active in his decision.
Not to say that he won't understand or anything i dont know how to say that exactly.

Anyway, i think definetly talk to the dr, and talk to the parents of other kids who have surgery, see what they think.
I am much happier post surgery. And i can tell you this, having suffered from UC for 8 years and knowing that my son is a little more prone to it, i told my husband, in no uncertain terms, if he gets UC his colon is coming out! My husband agrees.
Good luck and best wishes for you little guy.

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 12/2/2008 1:33 PM (GMT -6)   
Some people have to have surgery within weeks of being diagnosed. There is no "set" time for contemplating surgery. For most people it's elective meaning the patient asks for it. I have a j-pouch after having UC for 12 years. Ten of those years the disease was managed with medication; the last 2 years no amount of various medications could cease my flare. This is really a great question for your child's GI. Personally, knowing what I know now, I would have opted for surgery in that first year where the disease could not be abated. I am glad to be rid of the medications and the illness. You might also visit Connie's son had the surgery when he was 9 years old. He's about 16 years old now. There are other parents who's children had the surgery at much younger age.

If I were a parent of a child with UC who could not gain remission, I too, would be concerned with the medications; especially the immunosuppressants and Remicade/Humira.

You have a lot to think about.

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

Elite Member

Date Joined May 2003
Total Posts : 30993
   Posted 12/2/2008 1:38 PM (GMT -6)   
I would be concerned about the long-term meds and the damage they could pose for your child long-term.

He can live without a colon...and adjust a lot better than to some of the possibilities regarding the meds.

I don't know if this would help, but if I got to the point of the meds I'm using now and needing the big - gun meds...I'd opt for surgery.
i have UC-related liver disease, those meds would kill me quicker.

*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Veteran Member

Date Joined Aug 2007
Total Posts : 2204
   Posted 12/2/2008 2:35 PM (GMT -6)   

I'd talk to a gastro who specializes in positive, complementary medicine approaches and has had success before I'd consider surgery for myself or my child. Dr. Ronald Hoffman in NYC is an example.

If nothing else, I'd at least get a second opinion from another allopathic GI, preferrably a pediatric gastro.

Diagnosed with ulcerative colitis spring 1999.
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.

Big Dog
Regular Member

Date Joined Aug 2008
Total Posts : 62
   Posted 12/2/2008 3:34 PM (GMT -6)   
Thanks, all - I will visit with her Dr to see if the surgery is a viable option for her.

UC is an auto immune disease. Removing the colon just "cures" it? No meds? What about the other symptoms UC gives her, like the molluscums on her skin and the joint pain?

Peety - funny you mention my "Big Dog" user name. I love it - we have a big dog so it was an easy one!
Mother of 8 yo UC child
Lialda 3 pills daily
Imuran 50mg 3x daily
Fish Oil, Probiotics, Immune System Boosters, Multi-Vit with Calcium

New Member

Date Joined Dec 2008
Total Posts : 1
   Posted 12/2/2008 3:45 PM (GMT -6)   
Dr. Drucker discusses how to send ulcerative colitis into permanent remission in his free book. It is free to download or simply read at You don't need to "live with your disease," you can leave it behind. Read the free book and spread the message.

Veteran Member

Date Joined Nov 2006
Total Posts : 552
   Posted 12/2/2008 3:48 PM (GMT -6)   
Our daughter was diagnosed at 15-1/2 years old. She had 3 really big flares (never the mini flares some people talk about). Either she was in remission or running to the bathroom 30+ times in a few hour period over several weeks. She had surgery this past summer at 17 years old. It is a difficult decision to make for anyone, let alone when the parents have to make the final decision (we decided jointly with her).
You need to look at both sides and see which may be best for your child.
1. Speak with his pediatric GI. Make sure he is the best around.
2. Consult with a surgeon (one who has done many, many surgeries). A consultation does not mean a commitment to surgery. It just means you are doing as much research as possible.
Find out the pros and cons for your child's age.
3. Ask to speak to a family who has had a child go through the same surgery (preferably one with similar issues to your son--age, affects of medicines, etc.). Talking to someone who has gone through what you are experiencing helps alot. We did this with our daughter.
We originally met and scheduled surgery with an experienced pediatric surgeon. While he did many colorectal surgeries, he didn't specialize in them. He referred us to a family whose son had gone through it. They highly recommended him, told us about their scenario, but again, it didn't parallel our issues.  Then we went for a second opinion to another surgeon. He is not pediatric but colorectal is his specialty. He referred us to a girl who had been diagnosed around the same age as my daughter, had surgery around the same age and was now 3 years post surgery.
Our daughter didn't have many side effects from her medicines (other than the dreaded prednisone). However they never kept her in remission. That, along with the thought of her battling UC for the next 60+ years as well as wondering what long term effects the drugs would have on her, factored into our decision. We also felt this was a good time while she was still under our insurance and had no major responsibilities (job, children, etc). She was also in remission at the time of surgery, which is generally better for recovery.
So far, she is doing great. She has been on no meds since July. She lost 45 lbs of prednisone weight and looks and feels wonderful. She is finally enjoying her high school experience, something she hasn't been able to completely do since 9th grade (she is in 12th grade now).
Definitely get as much information as you can from as many people as possible. Going into surgery with your eyes wide open (as well as your mind) is a big asset. Not having to make an emergency decision will make your choices easier to see.

--Mom of bratcat (17 years old) and nonamejames (19 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!
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

Post Edited (Bennie) : 12/2/2008 5:01:52 PM (GMT-7)

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 12/2/2008 4:57 PM (GMT -6)   
BigDog-I am sorry, i dont know why i was refering to your child as a little boy! not paying attention i guess,lol.

Taking out the colon does "cure" you from UC. Most of the problems that go along with it will go away too, or lessen anyway. No more meds, there isn't anything to treat. I don't know about what you are saying about her skin, i dont know what that is.
I had a lot of random all over pain when i had UC and it went away after i had my colon out. It took a while for those pains to go away. And i have this weird rash thing that shows up on my hands sometimes, it started a few days after i first got sick with UC and even though i do still have it, it's not nearly as bad. Her health in general will be tons better, once that toxic colon is out!

New Member

Date Joined Dec 2008
Total Posts : 3
   Posted 12/3/2008 1:18 AM (GMT -6)   
My daughter is 21. She was diagonoised at 16. She has had some really ruff times . She is in severe stages right now. The doctor has discussed removing her colon. I was just wondering how does this work. Do you have to wear a bag all of the time after surgery.

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 12/3/2008 1:20 PM (GMT -6)   
depends on the surgery. If you have a j-pouch you wear a bag for about 6-8 weeks then they reconnect the small intestine to the rectum, and they make a little pouch in the small intestine that holds the poo.
If you get a permanent ileo (what i have) you wear a bag all the time.

Veteran Member

Date Joined Aug 2007
Total Posts : 2204
   Posted 12/3/2008 2:06 PM (GMT -6)   
Here's a link to learn more about UC surgery options:

Diagnosed with ulcerative colitis spring 1999.
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.

Regular Member

Date Joined Oct 2008
Total Posts : 80
   Posted 12/3/2008 4:18 PM (GMT -6)   
I was diagnosed when I was 8. That was 27 years ago. I am actually glad my parents did not do surgery. I know the medical options are much better now than they were 27 years ago but at least I can say the decision is mine to make. I too have tried all sorts of drugs but nothing really seems to work. I personally, will only try surgery if all other methods have been exhausted. Currently I am going as holistic as possible. watching my diet and doing acupuncture. So far I have seen slight improvements. Hope this helps.

Veteran Member

Date Joined Feb 2003
Total Posts : 1251
   Posted 12/3/2008 7:18 PM (GMT -6)   
I was diagnosed with UC at age 5 and had my ileostomy surgery when I was 10 (mine is a permanent ileostomy, no j pouch).

My parents' biggest worry was that one day I would turn around and say to them "Why did you let them do this to me?" I never have. It's the best decision they ever made for me. Because I've grown up with it, it's just a part of me, like my hands and feet.

Thirty two years later and I've travelled the world, work full time, have a mortgage and generally, life is pretty good. There isn't enough money in the world to pay me to go back to pre-surgery life with UC.

An ostomy won't stop her from enjoying life - only her mind will :)

Good luck on your decision.
I have had an ileostomy for 32 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Regular Member

Date Joined Sep 2007
Total Posts : 69
   Posted 12/3/2008 7:31 PM (GMT -6)   
I just want to say good luck and it's not to early. Just research.
Mild case of UC~04   Left Side Colitis~ 05-06  Pancolitis~ 07
6-mp 50mg ~ 2 pill a day ~~ Lialda ~ 4 pills a day ~~ Librax 5-2.5mg~3 times a day ~~ Lexapro 20mg ~ 1 a day ~~ Zegerid ~ 1 a day ~~ Birthcontrol ~ 1 a day

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