Colon surgery

Daughter diagnosed with Crohns 2010.
Now being told its Colitis 2012

Meds did not work: Prednisone, Pentasa, Remicade 2x

Docs suggest removal of entire colon. She is 11 and has only had 1 bad flare.

She cannot take Azthiprine or Mercaptopurine due to allergy

Anyone out there that has a young child with similar story needing surgery? Odds of eliotomy bag on outside of her tummy seemed more spoke about than not. She is only 11 and as I said prior, has not been sick long enough to want her colon removed.

I do not know how to make this decision and hospital has no option other than surgery?

Wow my son was 21 when he had colectomy,he made the decision since he was 21,I am glad I did not have to make it.
There are some other possible options,that the docs will not talk about.
LDN is Low Dose Naltrexone, very safe.
FT Fecal transplant,where you take stool enemas to re populate the bowel with good bacteria.
Triple antiobiotic therapy.
The easy things to try first is to take her off of all dairy,butter,cheese,milk,any food that says casein,or milk proteins.
Next you might try taking her off of all wheat,corn or grains in general.
Another possibility is to take her off of all nightshade vegetables,potato,tomato,eggplant,peppers of all types.
Sweet potato and black pepper are ok.
The first thing I would try is no dairy,for a month or so that is the easiest.

This is why I say try no dairy,this is old old data that the doc's may have forgotten about.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1952962/pdf/brmedj02877-0030.pdf

Also get her out into the sun as much as possible,vitamin D status is

very important.

My other advice is to educate yourself as much as possible on this disease
and its treatment,especially the surgery and j-pouches.
I am really very very sorry she has to go through this at her young age.
Many people exhaust all options before giving in to colectomy,it is a big
decision and once done it is done,no going back.
That being said sometimes colectomy is the only option.

What is the extent of her UC,since she has been on powerfull drugs with poor response

the options are becoming limited. Have they tried rectal meds,of course they may not

do much if she has pan colitis.

One other point is if surgery is decided upon it is

best that she is not too weak/sick at the time. 

One other thing fo over to www.j-pouch.org

Look around ask questions,but don't let the site scare you.

Also here is a site for people with children and IBD.

http://www.dragonpack.com/ibdsupport/parents/

I see from your other thread,she seems to be in the hospital at this time,

looks like you are running out of options.  She has a very agressive immune system.

What are they feeding her,if possible request that she be taken off of all

dairy proteins,including eggs.
Good Luck
Old Mike
I am still fighting this disease after 32 years,still have a colon.

Post Edited (Old Mike) : 5/30/2012 6:10:44 AM (GMT-6)

If you go to www.j-pouch.org and search the members site for 'Connie' and 'Elmer Fudd' you can chat with them about their children's surgeries. Connie's son had jpouch surgery at age 9, Elmer's daughter at age 6. They would both be more than happy to share their experiences.

Sue

MyLittleGirl,

Welcome to the forum. I'm so glad you've found us, albeit I am sorry you are in these shoes.

Wow, I am so sorry to hear this.

It's hard enough when you, as an adult, are facing surgery, but to watch your little girl be at this point is heartbreaking.

Not to equate my experience with your daughter's, but I want to tell you not to give up hope, there are other options out there which you'll need to search out for.

I can tell you that I was at a point where I felt hopeless; the drugs had failed me, and when my GI gave me a choice of the biologics or surgery I balked at both, and  found my own way.

For me, it was a combination of diet, supplements, and LDN, low dose naltrexone - which has had a good track record of putting people with CD and UC in remission, many on this very forum.

I am telling you this because I thought there was no other way out, and my doctor was not forthcoming with any alternatives because he didn't know of any (most doctors do not).

If you'd like to find out what specifically put me in remission, please take a look at this: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

 

And by all mean, feel free to email me and I will be glad to help you any way I can. You can find my email in my profile.

 

I send you a big hug, and know that you will in my prayers.

 

Let us know how we can help you.

 

 

 

Thank you to all your posts... I am located in Seattle for whoever asked. She has been unsuccessful wtih Prednisone, Pentasa and Remicade 2x's and then ended up in hospital since April 23rd. I have not heard of these LDN drugs nore have I heard of the VSL#3 pro biotic. All I know is that I am overwhelmed beyond belief. She is not the normal kid who has been sick contiually or hospitalized several times. Diagnosed with crohns in July of 2010, couple small flares and this HUGE flare which we currently sit in hosp. Docs changed diagnoses to Colits as its only her large intestine inflammed. Docs state surgery is needed to remove entire colon. She is hooked up to TPN and has severe diarehea. Because docs state they believe surgery is needed asap because they are afraid colon will rupture, they are treating her without any further drugs due to surgery advise. ** she can not use Azathioprine or Mercaptopurite due to allergy.

I am at a loss as to what to do.... I did try gluten, egg free but not dairy. Dairy never gave her a problem and did not show sensitive to at naturalpath.

I am afraid to remove her from hosp as Hematocrit levels have dropped to the lower end since we have been here. CRP ( inflammation) seems to be improving but diarehea is not. Blood in stool is less. Hospitals should have a naturalpath doctor available for this type of thing!!! My gut feeling says do not remove colon but she is soooo sick in hospital:-(

This is what happened to my son,none responsive to all meds. At this point you really have to decide
what you are going to do.
I know what you are going through.
Good Luck
Old Mike

I am so sorry you are going through this. Have you talked to her doctors about a j-pouch? I have heard that if they get it when they are young, that it works better than if you have it as an adult. I had mine done at the Cleveland Clinic a little over a year ago and I am so happy now. It was a rough first year, but now I go between 6-8 times a day. No urgency and no pain. The only meds I take (and they are OTC) are immodium and metamucil. Really, people are supposed to pee 6-7 times a day so it's really not that different. Are you at Children's in Seattle? I grew up in Bellevue . If I were you I would start researching surgeons (and especially ones that have a lot of experience with the j-pouch). If her colon ruptures you want to be prepared. I can tell you having a very experienced, very competent surgeon can make all the difference regarding success. This is a very difficult surgery and you don't want a surgeon who has limited experience. I hear of stories of people with problems and I know that some of those problems can be due to surgeons. I am sure in Seattle there are very competent j-pouch surgeons.

I know this is very scary, but if she has to have her colon removed, it doesn't have to be the end of the world. For so many of us it has given us a new lease on life and we are living it to the fullest. I no longer have to worry about flares, bathrooms, plans having to be changed, etc.

Good luck to you! Sending prayers your way.

I ache for you and what you are going through. My son was older when he went through this (~18) but he as well became very sick, very quickly. It actually got to the point that he was in danger and that *&^&(^ colon had to come out. He is now over two years with a functioning J pouch and I cannot convey to you how well he is doing. He is healthy in every way and has pretty much forgotten what UC life was like.

You and your doctors have to make your own decision and everyone is different but I just want to let you know that your daughter can have an excellent outcome and a full future in complete health.

Thinking of you,
Cathy

I am very sorry to hear about your daughter. I assume the doctors have tried IV pred? What about antibiotic treatment like vancomycin? My son's GI is a huge fan of this treatment when required. It worked to control my son's bad flares.

MylittleGirl-

I am 18, and like your daughter I have only been diagnosed with IBD for 2 ahort years - since 2010. All throughout 2010 and 2011 I had just 2 or 3 mild flares easily controlled by suppositories, but January of this year I entered a horrible flare which I feel is very similar to your daughter's. I lost 30lbs, I became very anemic (I received one transfusion), and the only times I could force myself out of bed were to have horribly bloody, painful diarrhea. The hospital put me on mesalamines and high dose steroids for 1.5 weeks with no effect, and then added cyclosporine and 6mp for another week to no effect. I didnt try Remicade because I feared my colon would give out before I could see if it would take affect.

If your daughter has been in the hospital for an entire month with no improvement, and she has tried all of the usual medical options (which I see she has) I would /not/ waste another month fiddling around with antibiotics, probiotics, or special diets. I'm sure she must be very scared now to hear about her colon needing to be removed, but I would follow the advice of your doctors. If you want a second opinion - get it quickly! If you allow her to become even more sick before entering surgery you will not be doing her a favor.

Ask about the J pouch for your daughter. Since she is so sick she will probably have to have a 3 stage surgery like me, but I am quite glad that I opted for surgery before it became a truly emergency situation (aka perforation). Even now, in my hospital bed, having just completed my 2nd of 3 surgeries, I do not regret having my colon removed.

No UC.
No chance of colon cancer.
No more potent medications!!
No more anemia and fatigue.
No more missing semesters of school.

Don't be afraid to keep asking around... but don't let anyone else make this decision for you. Talk to your daughter; try to make sure she understands the pros and cons and isn't just led by her fear and pain. As she is so young it will be very difficult, but even before I had UC I had a few similarly devastating things to deal with in my childhood.

Be strong for her.

 

 http://seattletimes.nwsource.com/html/businesstechnology/2013671440_apusmedhealthbeatstooltransplants.html

 I did some research and found this gastro that has performed Fecal transplant in Seattle

  "I used to say this was just a measure of how desperate patients and their doctors were. There came a time when there was nothing else to do," says Dr. Christina Surawicz of the University of Washington's Harborview Medical Center, before performing her 16th procedure last week.

 

  I won't hurt to ask and see if your daughters doctor can contact Dr. Christina Surawicz and talk with her before making the decision to have surgery.

  I have been watching forums for years and I have also seen many cases where the children get surgery and later find out it is crohn's and end up on medication after surgery.  Are they now 100% sure it is Colitis?

Post Edited (haileys letter) : 6/2/2012 9:44:58 AM (GMT-6)