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looks like surgery is in the near future

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Ulcerative Colitis
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Posted 8/22/2011 1:30 AM (GMT 0)
After having a stomach virus my daughter began to flare and has been in the hospital since Thursday 8/18. She is back on the dreaded Prednisone ....a short burst to get her colon less inflamed for surgery. We are all so sad that at age 13 she will lose her colon....but it's not like it has been a good colon! She will most likely have surgery sometime within the next month. Of course this means she will not be starting 8th grade on August 31st, which breaks my heart. We can only hope this surgery will allow her to get back to the life she has missed out on the on for the last 3 yrs. How wonderful it will be if she could join in with her class after she has healed and go on to finish her last year of middle school! Sadly, she has missed out on the last day of school for the past 2 years!!
Surgery will be at Children's Hospital in Los Angeles, which comes highly recommended. If anyone has tips, suggestions or helpful hints regarding the surgery, please let me know!
Posted 8/22/2011 4:03 AM (GMT 0)
I am so sorry to hear that she hasn't gotten a break from this dreaded illness. I am happy that she will sooon be UC free. I know the healing process from surgery is long and difficult but once it is over, she will have a long healthy life wiithout UC. It is so worth the negatives in the moment for a UC free future. I think my depression meds may have helped my UC. I am not sure if you would be willing to give something like that a shot or if it is even acceptable for a 13 year old but it may be worth considering if it can be used in younger people. I don't mind taking it, in fact, I feel quite a bit better since starting it, my UC has let up, my anxiety is lessened and I am less depressed. Kills 3 birds. Of course, in the future, I will still have UC worries. None of these meds are effective forever and I dread the day I am back on the toilet 20x.

I have been thinking about you and your daughter a lot and I can't wait to see her healthy and able to live like a normal kid.
Posted 8/22/2011 7:51 AM (GMT 0)
MustLoveDogs,

Your daughter & you have been in my thoughts & prayers. I am glad that there should be an end to her medical suffering. I know how bad life was growing up as a child with bowel problems & I'm sorry hers has been to the extreme at her young age. Will she be having a Permanent ileostomy? She will feel so much better & life will begin anew for her.

I had a Temp. Loop ileostomy in May 2011 & within 4-days I was feeling like a completely new person. I see my Colon Surgeon in Sept. & we will discuss about making it permanent (removing rectum, intestines).

Sending you both Hugz N Smiles...
Your Healingwell Friend,
Serenitee

Loop ileostomy, Pelvic & Bladder Trauma & Dysfunction
Posted 8/22/2011 8:35 AM (GMT 0)
Hopefully it will be for the better. A few years ago I was thinking about needing surgery. When I went to my GI appointment there was a lady in front of me being weighed and checked in for her appointment and she said out loud, " life is so great without a colon". I have never forgotten the look on her face and still wonder to this day if most of my suffering could be taken away with surgery.

The best of luck
Garrett
Posted 8/22/2011 11:29 AM (GMT 0)

Ugh, so sorry your poor daughter has to have surgery. She is young and she is going to bounce back quickly. I had my surgery last June at 42 and I recovered pretty fast. Is she having J pouch surgery? Probably the hardest part...for me anyway...was having the temporary ileostomy for 3 months. But I did get used to it and by the time I was used to it, it was time to have it reversed. The surgery itself wasn't all that bad. The nurses did an awsome job keeping my pain controlled...I was up and walking the halls in a couple of days. The last surgery (ileostomy reversal) was very easy and I was back to my normal routine of running my kids around  in a couple of weeks.

The best thing to come out of surgery is the fact that her UC will be gone. You won't have to deal with it ever again and she will be done with the drugs. And she will be able to enjoy food again! I am still in amazement every day that I'm not sick anymore and I can eat whatever I want. It's so nice to just take my multi vitamin in morning instead of 20 pills like I once was.

If you have any specific questions, please feel free to ask. I wish you and your daughter the best.

Marianne


Posted 8/22/2011 2:11 PM (GMT 0)
I am so sorry for you and your young daughter.

The gastroenterologists are ignorant of the causes of this disease. They mumble

something about autoimmune disorders, but they have no proof.

Before signing up your daughter for surgery, why not consider the possibility

that the cause of her disease is bacterial. Then, have her try

oral amoxicillin 1500 mg/day, tetracycline 1500 mg/day, and metronidazole 750 mg/day,  for 2 weeks, as described in this Japanese study -

http://www.ncbi.nlm.nih.gov/pubmed/20216533

And, if you and she can get passed the yuck factor, don't leave to chance the

recolonization of her colon after antibiotic therapy. Do fecal transplant with

stool from a healthy donor.

http://www.ncbi.nlm.nih.gov/pubmed/12811208

http://www.ncbi.nlm.nih.gov/pubmed/20117243

http://www.naturaldigestivehealing.com/blog/2011/02/06/bacteriotherapy-summary-post/

None of this is dangerous. The drugs the doctors habitually prescribe - prednisone,

Remicade - are dangerous, but they are standard, so the doctors will suffer

no legal or insurance consequences if they continue.

Here is one of  the many threads on this website from people who tried fecal transplant

https://www.healingwell.com/community/default.aspx?f=38&m=1612467

Posted 8/22/2011 2:13 PM (GMT 0)
Children tend to bounce back from surgery very well. My heart goes out to you, the parent. It must be frightening to have to face this decision. I know it's hard to face this during the coming school year but on the good side, her high school years should be very full and without sacrifice.

Sue
Posted 8/22/2011 2:53 PM (GMT 0)
MustLoveDogs,

May I ask which kind of surgery you are considering for your daughter?

Will she have to wear an ostomy bag permanently or will she have a jpouch?

Will it be done laparoscopically?

goosehelp

Posted 8/22/2011 3:00 PM (GMT 0)
     My prayers are with you and your daughter.  I didn't get UP (proctitis) until I was 52, although suffered with IBS since childhood.

     I just cannot imagine a child having to suffer with this dreaded disease.  I had a total colectomy with end ileo but had I been younger and in better health, I would have gone for the j-pouch.  I have NO regrets though.  Living with an ostomy is not bad at all, much better than suffering with the disease and all those horrible meds, especially prednisone..ugh!

Posted 8/22/2011 4:24 PM (GMT 0)
I forgot to add in my previous post: One tip I would recommend to you is that when she leaves the hosptial, have a home care nurse come to your home the first couple of days just to help you and your daughter feel comfortable about changing the ileostomy wafer and bag and all the prep that goes with it. That helped me a lot because I was nervous the first time doing it myself. Having a nurse there to watch me make sure I was doing it right made me feel a lot better.
Posted 8/22/2011 7:20 PM (GMT 0)
Its awful for someone so young to have had such a hard time, but at least after srguery it wll all be over! No more dangerous meds or missing out on life. There are a few parents on her who made the decision for their children to have surgery and are very happy with it. And I can tell you if my son ever gets uc, there won't be any trying anything, it will be surgery! So I really think this is the bst thing. Children do heal much faster than adults, and that's good. I don't know what type of surgeryyouare having done but they al have the same result, no moe uc!
Don't try to be brave and not scared, it won't work and its totally natural to be terrified. I thought I could be all cool and such and yeah that didn't happen, lol. Keep a list of all the bad things from uc, and if you start to second guess yourself, which you will, look at that list. That really helped me! And proper stoma placement iskey! Even if its just temp, make sure its a good lenght and that she wears her favorite clothes to the marking so it will be in the right place.
Good luck!
Posted 8/23/2011 1:11 AM (GMT 0)
M,

Call me, let me know what's going on.  You and your daughter are in our prayers.   I have told B. all about his "friend" on the West coast.   Hope things are going better for you guys.  As much as I am in denial at the current moment, I know that we are headed down the same path.  I just want him to be well and not feel like crap all the time (no pun intended).  I am so tired of seeing my son feeling crappy.  I want him to experience being a teenager and enjoy life and not worry about "where the nearest bathroom is".  

We see the other doctor tomorrow morning, and I will let you know how that goes.

Thinking of you guys...let her know she has lots of people that are wishing her the best and that care.  yeah  

P.

Posted 8/23/2011 11:41 AM (GMT 0)
I had my ileostomy surgery due to UC when I was 10 years old. I'm 44 now. Let me tell you it was the best decision my parents ever made for me.

Their biggest fear was that one day I would turn around and say to them 'why did you let them do this to me?' I never have. Having surgery and getting my bag was the best thing to ever happen to me - it gave me my life back and I was able to enjoy things again just like a kid should.

I am forever greatful they gave me that chance to be well again instead of making me carry on for years being sick and on countless meds with endless doctors/hospital visits, restrictive diets, etc.

I love my life :)
Posted 8/23/2011 12:29 PM (GMT 0)
I'm sorry it has come to this, but maybe it's for the best. Is she going to have a 2 or 3-step surgery?

Keep us updated!
Posted 8/23/2011 12:47 PM (GMT 0)
MustLoveDogs:

I wish you and your family the best with the upcoming surgery.  You, as a family, have done your best.  Be at peace with the decision.  Again I wish your daughter the very best.  Keep us informed.

MyUC

Posted 8/23/2011 4:35 PM (GMT 0)
MustLoveDogs,

I am so sorry. You and your daughter have been in my prayers.

I wish you good luck, and the best possible recovery.

Let us know if there's anything we can do.

A big hug to you.

Posted 8/24/2011 9:02 PM (GMT 0)
Surgery will be colon removal, done via laprascope. Planning for it to be 2 step.
Thanks so much for the support!
Posted 8/24/2011 9:58 PM (GMT 0)
I don't get to this board very often - have to stay away for my own sanity when my kids are doing well, but come here for help when they are not. I logged on today because I wanted to check on you and MotherofTeenWithUC. You both are in my prayers every night. I am so sorry for what you are going through. I will say in my years of being around message boards with IBD kids (DragonPack), these kids are amazing in how they handle it all. The ones who have surgery seem to do so well and bounce back so quickly!!

I have an Internet friend whose 10 year old son just had the surgery a few weeks ago and said he has his life back!

I will check in from time to time to see how you all are doing. You all are in my thoughts and my prayers!!
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