Daughter has officially been diagnosed with Crohns disease, may need a resection of her small bowel

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Regular Member

Date Joined Aug 2009
Total Posts : 94
   Posted 9/12/2011 5:50 PM (GMT -6)   

I don't really have a question, I really was looking to hear from other ostomates that have Crohns and have had to had a resection of their small bowel after having the collectomy. My daughter is not doing well right now. We're in the hospital and things seem to be getting worse. She's on a heavy dose of IV steroids but they don't seem to be working. She has a fistula that seems to be getting worse and now they are afraid that there is an abscess causing her to run high fevers. we have to make a decision pretty quickly on either having surgery to remove the 3-6 inches that are inflamed and to fix the fistula and then of course she would go on medication (Remicade/Humira or maybe 6MP) to maintain her remission.

Just looking for some advice, or just someone who can relate to this. I'm going to post over in the Crohns board too but since she has an ostomy I thought to post on this one first.
thanks in advance

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 9/12/2011 6:27 PM (GMT -6)   
Hi Katiesmommy,
I don't have any experience with that, but I just wanted to say that I'm sending you hugs and good thoughts. I'm so sorry you both have to go through this :(

I had an extra 6 inches of my small intestine removed during one of my blockages last year, right at the stoma site, and I don't notice a difference. I don't know if you would. I wish I could tell you more. HOpefully more people know their stuff in this area!!

Keep us posted.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Veteran Member

Date Joined May 2009
Total Posts : 827
   Posted 9/12/2011 8:12 PM (GMT -6)   
Oh man...I cannot imagine how hard this is. I am sorry that I do not have any input for you . I hope the Crohns board will be helpful. Please know that we are thinking of you and your daughter and sending only healing thoughts your way.

Mom to Dillon (age 20) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

Regular Member

Date Joined Aug 2009
Total Posts : 94
   Posted 9/13/2011 7:24 AM (GMT -6)   
thank you so much for your kind thoughts.

Veteran Member

Date Joined Dec 2010
Total Posts : 3332
   Posted 9/13/2011 12:04 PM (GMT -6)   
I am so sorry ..... she's so young, it must be so horrible for all of you. I hope you get the info you need to make a good decision, and that she finds some relief soon. Thinking of you.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Perineal wound taking its time healing, but otherwise feel better than I have in years. I only take vitamins now, no drugs at all!

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 9/14/2011 10:25 AM (GMT -6)   
So sorry this is happening. Over the years after my ileo I have had various surgeries to remove and resection areas of the small bowel. My only problem now is that they cannot remove any more as only just have enough left, now have short bowel syndrome. Just means I don't absorb a lot of calories/nutrients from what I eat so need to eat 4000 calories a day and also can dehydrate very quickly. I use codeine and immodium to slow bowel down or I would be emptying 20 times a day, at moment it is about 13 times a day.

Hope everything goes well and she can feel much better soon.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, azathioprine, codeine, immodium, simethicone.

Veteran Member

Date Joined Oct 2010
Total Posts : 776
   Posted 9/14/2011 12:24 PM (GMT -6)   
can't really offer any advice.. just sending big hugs and best wishes she makes a speedy recovery. thinking of you Sarah x
Sarah - 39 year old mum of 2 boys, runner/triathlete from UK
June/Oct 2010 - Peritonitis/perforated diverticulitis. Sigmoid colectomy, temp ileo then reversed.
DX Colonic dysmotility.
July 2011 - Permanent end Ileostomy after begging surgeon to put it back
Follow my blog - http://bagthatruns.blogspot.com/

Regular Member

Date Joined Aug 2009
Total Posts : 94
   Posted 9/15/2011 4:31 PM (GMT -6)   
I just wanted to update everyone on my daughters condition, She had her resection yesterday. They removed the last 5" and gave her a new stoma. It looks so much better and she's finally able to walk around and play without pain. She's such a strong little girl. Her docs are going to start Imuran most likely next week and they are tapering her steroids now. I am praying with the Imuran the crohns will not reappear again.
thank you again for all of your well wishes and prayers.

For Stripey..I'm so sorry to hear that you short bowel syndrome. That was and still is my biggest fear for my daughter. Since she is only 5 I know there will be plenty of years ahead and chances for Crohns to come back. I wish we didn't have to remove any part of her small bowel now but it really needed to be done. It was so inflamed and the fistula just kept getting worse and was starting to cause a blockage. She was only passing stool from the small fistula hole and she was in so much pain from it. but I'm so glad to hear that it doesn't seem to sound as bad as I thought. I thought when you were diagnosed with that short bowel that pretty much meant you had to live on a machine and depend on TPN to feed you and give you your nutrients.

thank you again for sharing your story.

Post Edited (katiesmommy1) : 9/15/2011 3:39:27 PM (GMT-6)

Forum Moderator

Date Joined Dec 2008
Total Posts : 16716
   Posted 9/15/2011 9:59 PM (GMT -6)   
I am happy to hear that her surgery was a success. I am heartbroken over the Crohn's diagnosis. *hugs* to you and Kaite.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (3200mg) + 6mp (50mg) + Pristiq (50mg) + Canasa (1g PM) + cerazette

Regular Member

Date Joined Nov 2010
Total Posts : 269
   Posted 9/16/2011 2:23 AM (GMT -6)   
Good luck with everything! She is an incredibly strong and resilient little girl! I know she can get through it! And you can too! She got those survivor genes from somewhere ;)

Good luck with everything and we will always be here for when you need us! :)
Sarah, 21 y/o.
Thyroid Cancer, Crohn's Disease w/ Severe Perianal Involvement, low blood pressure w/ syncope involvement

Current rx: Celexa, Lomotil, Pentasa, Hyomax, Klonopin, Prednisone, Synthroid, Zinc, Multivitamin, Calcium w/ Vitamin D, Augmentin, Fentanyl, Dilaudid, Ambien, Celebrex, Depo Provera, Align, Zofran, Lansoprazole

Past rx: Remicade, 6MP, Flagyl, Cipro, Entocort...many more
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