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My Daughter Is Going to Have a Colectomy

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Ulcerative Colitis
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Posted 1/4/2019 6:49 PM (GMT 0)
Hello everyone,
My life has changed a lot post knowing that my 11 years old daughter has UC. Now, a year after trying different medications including Remicade, she needs to remove her colon. Is the j pouch surgery worth it? Is the surgery painful? Has anyone heard about the best surgeon in Kaiser LA? No words can describe my feelings now. I am so afraid for her and want her to be ok at the same time. Your advice, input and info about the surgery is highly appreciated.
Posted 1/4/2019 7:33 PM (GMT 0)
Surgery has given me my life back. I'm in NY. Great surgeons here.Not much pain for me.
Posted 1/4/2019 7:39 PM (GMT 0)
I felt so much better after I woke up from my colectomy. My body was being poisoned from the inside.

I didn’t have too much pain from the surgery, some of the complications were painful like vomiting two days after abdominal surgery which is not fun.

If your daughter needs surgery then I recommend that she gets it, she’ll feel so much better.

I’m not sure at her age which surgery they do because she is still growing. Sometimes they do a direct small intestine to anus connection instead of a jpouch.
Posted 1/4/2019 7:58 PM (GMT 0)
I'd check with her pediatric gasteroenteroligist and see whom he/she refers his/her patients to for colorectal surgery. There might be good local surgeons within your area. Certainly I would ask how often and how many colectomy surgeries they have done. Ask if they do laparoscopic or open surgery, etc.

I would say I would expect a bit of pain and discomfort from any surgery, although she should initially be given IV pain meds in the hospital, and discharged with oral pain meds.

We've had a number of posters go through the surgery and generally have good results. Can't think of many pediatric patients off of the top of my head (but the forum doesn't have many adolescent posters, rules prohibit it to mid/high teens).

Surgery is a very tough decision to make. Definitely take your time to meet with a colorectal surgeon or two (or more), read up on articles regarding the procedure -
There are also some good blogs out there that really help you get a handle on what the process is like -
Posted 1/4/2019 8:13 PM (GMT 0)
Most surgeries are done with epidurals so there isn’t much pain to start with and if your daughter is in pain then she needs to communicate it to the pain management specialists (they sent them into my room everyday that I was in the hospital).

She’ll feel so much better after surgery.
Posted 1/4/2019 8:22 PM (GMT 0)
It is terrible to have to deal with this, and probably even worse to have to watch someone you love go through it, especially at a young age... On the positive side, surgery can give a life free of all the worries we are used to living with UC. I had jpouch surgery and I am thankful I went that route. I didn't hate living with the ileo, and it has some advantages, but I was of the mind that I didn't want to accept having to be insured to get supplies for the rest of my life. It's not really a huge issue, and we all need supplies for one thing or another, whether it's toilet paper, or tampons, but it's just one more thing I'd feel made me dependent on doctors and insurance.

Since jpouch surgery, I haven't been tot he doctor at all. I live so differently, it's actually kind of crazy. I went from taking tons of drugs, tests, produces and seeing the doctor at least monthly, to not even caring whether I am insured. I am, but I never go to the doctor. That is the positive. The negative is, yes, it's a lot of steps and it's not fun to get through. The other negative is going more... on the positive side, at 11, she has the advantage of being younger, healing faster, and having a better result. Seems like younger folks go less overall. I had surgery in my 30s. I could have kept fighting with drugs, but my UC was severe and I felt like holding on would have only brought me a few years, even if it brought me 20 years, I didn't want to be 50 or 60 and need surgery, plus, I'd have to maintain top tier insurance all that time, and see doctors, pump myself with drugs and prednisone. I had hit the end of my rope after gaining tons of weight and getting face full of acne from pred. I wasn't myself...

my story is in the link in my signature "from sickly to UC free".

Also, look up this user:
https://www.healingwell.com/community/profile.aspx?f=33&m=2250640&p=75159. Her daughter had surgery years ago at Children's Hospital in LA i believe. I had surgery at Cedars. Get in touch if I can help in any way. I am so sorry you're going through this. My heart breaks for all the parents faced with this - and for the other sufferers. it's a really difficult fork that no one wants to be at.

Have you done all the recommended testing? stool tests? upper endo? met surgeons? Has she tried xeljanz or cyclosporine?
Posted 1/4/2019 9:03 PM (GMT 0)
I can't imagine what you are going thru right now. Your daughter is so young and this disease is terrible. I hope you are able to find a great surgeon. Good luck.
Posted 1/5/2019 1:53 AM (GMT 0)
Mak had the surgery recently and I think she's like, 20? There's an 18 year old somewhere lurking here, too.

A friend of mine in her 30's had a colectomy and j-pouch when she was 11 (so in the 90's) and she has lived a full life, has had kids, etc. I had absolutely no clue until recently.
Posted 1/5/2019 5:35 AM (GMT 0)
I had UC that was medical resistant and led to my 3 step jpouch Surgeries. I was around 26 at the time. It's hard to fathom having to make the choice at 11 years old. The end Ileostomy vs the Jpouch is a tough tough choice that if there's one thing I'd give you of my wisdom from all these surgeries is even though things seem so urgent take the time to research the surgeon and the surgeries and the risks Though the first step of the surgery should be performed sooner while shes healthy rather than later when she's more sick and though many are completely happy with the Jpouch mine failed and was removed and that was the hardest surgery of all. It appears only two things really make or break the out come when it comes to successful Jpouches and that's one the experience of the surgeon, you want someone who performs these regularly. Second, Crohn's' should of been ruled out. The longer you wait between step 1 and step 2 the better, in my opinion, this gives her body a chance to heal and sort of a test run to see if she could live with the Ileostomy the rest of her life, such as no allergies to the Ileo products, can break through the mental barrier of pooping in a bag, etc. I believe there may be moderately more risk going for a jpouch versus an End Ileostomy in the sense of damaging reproductive parts such as the fallopian tube which may be something you bring up with your surgeon. It's worth asking over at http://www.jpouch.org/ as well.

I've had the pleasure of having both an Epidural and then just Morphine through an IV with abdominal surgeries and the most painful thing about the Epidural was the actual insertion. After waking up from surgery with the Epidural your lower body is completely numb. Morphine took awhile to kick in and I'd always recommend the Epidural, the small risk for a pain free process is worth it, in my opinion.

Regardless I think you should have peace of mind with the fact that regardless of the choice us humans in general are amazing at adapting to any situation after a few months.[url]

Post Edited (Virdent) : 1/4/2019 11:29:55 PM (GMT-7)

Posted 1/5/2019 6:09 AM (GMT 0)
A boy who lives down the street from my parents had the surgery a year or two ago (three surgeries, actually, as they did it in three steps). He was about 14 I think. My parents said he was very undersized for his age and was failing all meds and very sick. In the last year or two since the surgery, he has been growing like a weed and doing well.
Posted 1/6/2019 11:21 PM (GMT 0)
Adele how is everything going??
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