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

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Crohn's Disease
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Posted 9/13/2011 1:13 AM (GMT 0)
Hello,

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 or just trying Remicade/Humira first without surgery. I think our doctors are leaning towards surgery though since she doesn't seem to be responding to the steroids now.

Just wondering if anyone else has experience with this. I'm so nervous that we're going to be having this problem every few years and eventually her small intestine will be cut down to nothing.

thanks in advance for any info. regarding this
Posted 9/13/2011 1:28 AM (GMT 0)
wow- sorry you're having to deal with this right now. i can't offer any insight other than i'm finding myself in sort of a similar situation...meds no longer seem to do anything so it looks like after 20+ years with crohn's surgery is a very real possibility in the near future. i can tell you this though...after all of the ups and downs i'm at the point where if the surgeon says i can improve your quality of life to this extent...i think i'm ready. no info on your daughter's prognosis after surgery but if it will improve her quality of life to a great extent that's something to consider...especially if they think that not doing it now will just be pushing it down the road a bit further.
Posted 9/13/2011 2:58 AM (GMT 0)
Katiesmommy, what was her medication before this crisis that put her in the hospital? I'm hopeful that you can find an approach that puts her in remission and keeps her there. What to do about this immediate crisis is something only you, your daughter and your DRs can address. But I have friends who've had one surgery, then got on appropriate meds and have not had another surgery for a long time, if ever.
Posted 9/13/2011 12:17 PM (GMT 0)
thanks for all of your replies. My daughter was originally dx with UC two years ago at the age of 3. Within 4 months the diseased progressed so much that no medication was working. We tried steroids, 5ASA's, and remicade nothing was working and she was needing blood transfusions every other week. We entered the hospital and pretty much lived for two months. After 3 remicade infusions we knew surgery was our only option. She had a sub-total collectomy in Nov. 09 but after the collectomy her doctors found traces of Crohns disease so her dx changed from UC to Indeterminate colitis favoring crohns.
She was in excellent health up until three weeks ago. starting running fevers and having cramping. They scoped her and thats when it became very clear she has crohns. The fistula is right at the stoma site but it seems to be getting bigger.
the only drug she was on before entering the hosptial this time was a small dose of steroids and cortifoam.

I am really worried that this isn't normal and that her disease is so bad that no matter how many surgeries she has it will always come back. I'm so worried for her future. I've read about short bowel disease and I'm concerned about that happening to her.
I guess I wanted reassurance from other ppl that have gone through resections and have not had crohns reappear.

thank you again for replying.
Posted 9/13/2011 2:06 PM (GMT 0)
She's really young, and I guess the 3 remicade infusions did nothing when she was 3 years old....having her on a "small dose of steroids and cortifoam" is probably not the best approach to maintaining remission in a Crohn's patient.

I think flagyl is commonly used to deal with abscesses and fistulas - or some other strong broad spectrum antibiotic. And complete bowel rest, like the previous poster mentioned. And I think developing a fistula at the stoma site is also fairly common.

I think you are right to be concerned about the future. Take an assertive position with the medical team to push for a nonsurgical solution now and a serious attempt to maintain her in remission. It might mean feeding a liquid meal replacement with an NG tube or a button - and if that's what it takes to have your little girl keep her bowel, that seems like a reasonable solution to me. But that's me!
Posted 9/16/2011 11:50 PM (GMT 0)
May god bless you and your daughter she's so young I wish all goes well for her.
Posted 9/17/2011 1:59 AM (GMT 0)
katiesmommy1, just want to let you know that there's another person praying and hoping for your daughter.
Posted 9/17/2011 4:27 PM (GMT 0)
Hello All,
I just wanted to update everyone on my daughters condition, She had her resection last Wednesday. They removed the last 5" of her Ileum 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. We were actually discharged from the hospital yesterday. She's still in some pain from the surgery but hopefully each day she will continue to get better.
Because we now know she has Crohns I'm more worried than the first time we were released but I am hoping that with medicine her crohns will not appear again. At least until she is an adult and can manage it a little better. It's hard on a child, in only 3 weeks she lost over 4lbs and to a girl who was always tiny to begin with that's a whole lot. Without dairy it's going to be hard trying fatten her up too. But at least we're home now and I can cook and make her favorite foods again.

thank you again for all of your well wishes and prayers.
Posted 9/17/2011 7:56 PM (GMT 0)
Sorry she had to have the resection, but hopefully it will take care of the CD for a long time.

I think eliminating dairy sounds like a good idea for a while. Rice milk isn't too bad. Easy to digest food is probably the best (also the more natural the better), especially while she's healing. Also, you can try a multi-blend children's probiotics, if you haven't already. PPl with CD & UC find multi-blend probiotics especially helpful.

I sure hope she finally gets some good health now.
Posted 9/17/2011 8:59 PM (GMT 0)
I don't have any useful suggestions. I'm just so sorry to hear about your little girl and I'm glad to hear she's home and doing better. It must be so stressful for you. Remember to take care of yourself and ask for help and support when you need it. I'll be thinking of you!
Posted 9/17/2011 9:02 PM (GMT 0)
My heart breaks for you and your daughter. Just try to keep a positive outlook and hope for the best possible outcome--and for major improvement, soon. You're in my thoughts.
Posted 9/19/2011 8:09 PM (GMT 0)
Just wanted to update everyone again..my daughter just doesn't have any luck..could you believe that only a few days after surgery the crohns symptoms have started to come back. White spots on her stoma, pain in the abdomen as well as joint and back pain, diarrhea and fatigue. The only good thing is she still has her appetite. So I keep feeding her trying to fatten her up again before things get worse again.
Her docs bumped up her steroids and she's starting Imuran on thursday. keeping my fingers crossed that she doesn't have any serious side effects or is allergic to it.

ugh..we just can't catch a break. This disease is just awful.
Posted 9/19/2011 8:16 PM (GMT 0)
Poor little dear. :-(
Her tummy is probably very sensitive since her surgery, and it will be for quite some time. Also, it's very hard to gain weight after surgery, too. It is necessary to eat healthy, easy to digest foods. Aside from dairy, do you have any other diet modifications in place?
Posted 9/19/2011 8:55 PM (GMT 0)
So sorry to hear about your precious girl. It's so hard for a mother to watch her child suffer. Don't have much to add to previous posts, but want to send healing thoughts your way. I hope the doctors find the right combination of meds, diet, etc. to get this under control. ((((HUGS))))
Posted 9/20/2011 7:00 PM (GMT 0)
Thank you all for your kind thoughts..

Roni - My daughter also has an ileostomy, so besides the normal things ostomates have to stay away from high fiber foods, seeds, raw vegetables..etc we haven't really restricted her diet. We did cut out all dairy though since I know that is a no no when you are in a flare. I am going all organic and I am trying to stay away from processed foods. We are trying to be as healthy as possible but it's hard with a picky 5 year old. It's a fight almost every day and it does get tiring after awhile. I know it's for the best so I don't give in. In the past I would but that doesn't benefit anyone.
I'm trying to make her drink homemade shakes with Coconut milk, ice cream and other fruits and veggies.
any suggestions would be helpful?

thanks
Posted 9/20/2011 7:24 PM (GMT 0)
It seems like your medical team should be able to put her on total parenteral nutrition (TPN) for now to give her a complete bowel rest, but maybe that is not what you do after a resection? Studies in Britain showed that for pediatric patients, TPN was as effective as steroid treatment in inducing remission in Crohn's.

I have a picky kid and I know how tiring it is to try and find nutritional balance when there's like 10 things in the whole world that she'll eat (other than complete junk and dessert food). I think for your daughter calories are more important than balance, but she does need protein to grow and support her neurological development.

I don't eliminate dairy completely, I just eliminate lactose. So yogurt turns out ok, hard cheeses, too, and I use lactose free milk to make my smoothies. That way I get calcium and protein.
Posted 9/20/2011 7:29 PM (GMT 0)
Sounds like your doing a great job with her. So sorry you and she have to go through this.

I know what it's like having a picky eater too. My son has been picky since day one. I also try to feed him healthier foods and snacks, but it doesn't always work out that way. For a while, one of the only meats he would eat was hot dogs, so I searched all over for natural nitrate free hot dogs. I finally found some, and now Schneiders makes them too, although they're pork. I try to buy organic when possible, but you can't always get it.

I like the coconut milk ice cream. Hopefully, as she gets older, it will get easier.
Posted 10/12/2011 3:06 PM (GMT 0)
Hi katiesmommy, you mentioned in another thread that your daughter was back in the hospital.

I pray that your daughter is feeling much better and that the Imuran kicks in soon!
Posted 10/12/2011 10:48 PM (GMT 0)
Thank you clonehead, yes we are back in..ugh I feel like this is our second home sometimes. it's so unfair to my daughter. we're back in due to an obstruction..we are praying it's not crohns related and that maybe it will clear up on its own. But somehow with our luck I doubt that will happen.

Thank you for everyone who is praying for our little girl. ; )
Posted 10/12/2011 11:19 PM (GMT 0)
oh so sorry for your daughter! This is hard for anyone to deal with let alone a little one. Hopefully, they can just give her tummy a rest for a while and things will clear up. Good luck to you both.
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