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Crohn's Disease Forum » Your Story » My 11 year old daughters story -


09-05-2012, 03:55 PM   #1
TMG
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Location: mill creek, Washington
My 11 year old daughters story -

My 11 year old daughter underwent total colectomy with Ilistomy this last June, 2012 during a hospital emergency visit which lasted over 30 days. She was diagnosed with indeterminate Crohns in June 2010 for 1 sudden onset of inflammation. 2011 in remission and then 2012 this surgery after various meds including remicade did not work.

Current problem is severe inflammation in rectum. I have been given two options; 1) remove rectum and make iliostomy permanet for "11 year old girl" and 2) J pouch surgery with 30-50% failure rate. They are willing to do this surgery because they feel her symptoms are ony characteristics of crohns. She has a unique case .
I am looking for other parents with a similar situation; 1) sudden onset of disease in large intestine only and within 2 years a total colectomy. Are there any success stories with J Pouch out there in your children with similar stories? 3) natural remedy I have not heard of to increase immune system and remove inflammation?? 4) Any miracle hospitals or doctors treating kids with crohns?? Location and name?? I am in seattle. ** Our family has went thru an extreme family crisis when this occurred and I believe it is 98% stress related due to emotions.

All advise appreciated!
09-05-2012, 08:12 PM   #2
David
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Hi TMG and welcome to the community! I'm so sorry to hear about your daughter, my heart goes out to your entire family

1. If she has inflammation in her rectum, there is a decent chance that it is Diversion Colitis (read that link) and if so, that is quite treatable with a specialized enema. Make sure that they have ruled out diversion colitis before they do all that stuff! I assume they also ruled out C.Diff?

2. I'd definitely research Low Dose Naltrexone.

3. Be sure to connect with our Parents of Kids with IBD. They are an AMAZING bunch.

We're here for you.
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09-05-2012, 08:22 PM   #3
Farmwife
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Hi and welcome.
So sorry to hear about the choices you have to make.
Please heed Davids advice.
Also we do have a wonderful parents forum.
Yes there are parents that have made some of these tough decisions.

Farmwife
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
09-05-2012, 11:08 PM   #4
Aussie
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Join Date: Jun 2010
Location: Brisbane, Queensland, Australia
Hi TMG, sounds like you've got some difficult decisions to make. I'll try and clarify a few points.

Probably have four options.

1. Long term ileostomy and keep the rectum, consider surgical options down the track, ie, continue as is.

2. Permanent end-ileostomy and removal of rectum and anus.

3. J pouch surgery.

4. Iliorectal anastomosis.

If your daughter had UC, then a pouch operation is very successful. However, and this is where it's a little tricky, your ability to fall pregnant (fecundity) falls about 80% after pouch surgery. For older women, the best thing would be finish having their family with the ileostomy in situ, then go for the pouch surgery. However, that might not be feasible in your daughter's case. You could consider having eggs frozen before the surgery. No loss of fecundity with an ileostomy.

If your daughter has Crohns and has a pouch, then that could turn bad - although the French have good results with patients with Crohns having a pouch and kept in remission with biologic therapy. The problem there is that your daughter failed to respond the Remicade.

Need more information. Do the pathologists lean towards Crohns or UC on the colectomy specimen? Has your daughter had bloods tests for ANCA and ASCA? Did the MR enterography show any small bowel changes? Does your daughter have any perianal disease seen on pelvic MRI? Was the rectal inflammation there before the surgery, or has it developed since (ie. diversion colitis as David said)? How is your daughter travelling with the ileostomy, emotionally, mentally and physically?

Unless your daughter is really unwell I would say you have time, plenty of time, to see a number of specialists to get various opinions - because the decisions made here are so important, some being irreversible. People can go for years with an ileostomy and rectal stump in situ (unless she is really unwell at the moment).

Another point to remember is that Crohns will usually improve when you divert the faecal stream, whereas UC will stay inflamed. So the state of rectal inflammation precolectomy is important. Some pathologists can differentiate between diversion colitis and IBD on biopsy.

If it's thought be diversion colitis, perhaps an iliorectal anastomosis and Adalimumab with a thiopurine to help avoid loss of response.

If it is thought to be Crohns that still has severely inflammed rectum despite diversion of faecal stream, perhaps continue Adalimumab and thiopurine, see if it settles, then consider iliorectal anastomosis, although, once rejoined, things could well flare again.

If it's thought to be UC, then consider freezing eggs and go for the pouch operation.

At the end of the day, if the pouch turns out to be a disaster, it can be removed and you'll end up with a permanent end-ileostomy anyway. Unless your daughter was really sick, I would pursue other options rather than the permanent end-ileostomy first up, although gather as much information as you can!

Good luck!
09-20-2012, 11:54 PM   #5
David
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TMG, how is your daughter doing?
09-22-2012, 12:30 PM   #6
my little penguin
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The top kiddie places in the us are Boston children's then children's hospital of philiadelphia.
Have you looked at the improve care now list.
See below
https://improvecarenow.org/about/who-we-are

These places are usually up on the latest and greatest for kids with crohns.

HUgs
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09-22-2012, 05:39 PM   #7
Twiggy930
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I came across this a while back.
http://http://seattletimes.com/html/...splant24m.html
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
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