I myself do not have crohns...my 15 year old daughter was just diagnosed with it. She spent 2 weeks at Christmas in the hospital...she threw up 27 times in a 6 hour period. The dr said she has a blockage in her small intestine. He said...and I quote "she is an inigma she only has one sign of crohns soooo Im gonna say its crohns". And that was it. She went on steriods for over a month and puffed up. That didnt help self esteem as she already has an EXTREME self image problem with depression. She did fine over the Summer...then as soon as school started and she got stressed BAM! She started throwign up and spent a night in the hospital. The weird thing is her blood work came back normal...NO INFLAMATION! But she has this huge gas bubble in her tummy that wont move. She is pooping but cant get the gas out. It hurts her. The pain along with her depression is horrible. I cant get her out of bed...my straight A student is now getting F's. I feel so alone. No one will listen to me. She has lost 10 pounds in the last week becasue she is afraid to eat. I dont know what to do. I am on her second GI dr...we have an appointment for a thrid opinion but not till late October. I hate putting all these meds in my kid...meds that could potentially hurt her later in life. She takes 3 pills of pentasa 3 times a day...so NINE! Plus Bental...plus steroids! I hate this!
So worried
- Thread starter mom2girls
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Sep 3, 2012
- Messages
- 429
Oh wow I am so sorry she is going through so much pain!!!
what did they do to treat the blockage? What test have they done to confirm crohn's? I don't know if it would help but I would try to call the new gi and tell them how sick she is and that she can't wait that long. See if might be able to see the nurse practitioner if they have one.
I hope she finds relief soon.
what did they do to treat the blockage? What test have they done to confirm crohn's? I don't know if it would help but I would try to call the new gi and tell them how sick she is and that she can't wait that long. See if might be able to see the nurse practitioner if they have one. I hope she finds relief soon.
- Joined
- Jun 14, 2011
- Messages
- 6,449
I'm so sorry your daughter is having such a difficult time! 
and I can certainly understand your concerns! Its heartbreaking to see your child this way! :ghug:
Please ask your daughters GI about Enteral Nutrition. This treatment has NO side effects, provides all nutrition, allows bowel rest, has anti-inflammatory and healing properties and has a comparable success rate as steroids. It is commonly used around the world as a first line treatment (especially in children) except in the U.S. I'm not sure why?? This was the treat$ent offered to my son in May 2011 and, once in remission, has been his maintenance treatment since. It does entail an initial period (6 wks for my son) of no food, formula only - so not an 'easy' treatment, but it has worked very well for my son. (After the 6 wks, his regular diet was reintroduced.
If she is avoiding food now, perhaps try to supplement her diet with nutritional shakes (ie Boost, Ensure) to give her some nutrition and,hopefully, bypass pain.
As far as your daughter's blood tests not indicating inflammation, there are many patients whose tests do not reflect inflammation. However, there r other tests - ultrasound, MRE, calprotectin, etc which may indicate inflammation.
I hope you are able to get her appointment moved up!
Good luck!! :ghug:
and I can certainly understand your concerns! Its heartbreaking to see your child this way! :ghug:Please ask your daughters GI about Enteral Nutrition. This treatment has NO side effects, provides all nutrition, allows bowel rest, has anti-inflammatory and healing properties and has a comparable success rate as steroids. It is commonly used around the world as a first line treatment (especially in children) except in the U.S. I'm not sure why?? This was the treat$ent offered to my son in May 2011 and, once in remission, has been his maintenance treatment since. It does entail an initial period (6 wks for my son) of no food, formula only - so not an 'easy' treatment, but it has worked very well for my son. (After the 6 wks, his regular diet was reintroduced.
If she is avoiding food now, perhaps try to supplement her diet with nutritional shakes (ie Boost, Ensure) to give her some nutrition and,hopefully, bypass pain.
As far as your daughter's blood tests not indicating inflammation, there are many patients whose tests do not reflect inflammation. However, there r other tests - ultrasound, MRE, calprotectin, etc which may indicate inflammation.
I hope you are able to get her appointment moved up!
Good luck!! :ghug:
My daughter was 11 when she was diagnosed last year. She was 47 lbs after repeated trips to her PCM over several weeks. After a week long hospital stay and an endo / colonoscopy she was diagnosed.
We have done the steroids a couple of times, and yes there is no female on earth that gets happy when her face gets puffy. It would kill me when she would say that she was "so ugly".
We went straight to Remicade, and have had the regular infusion ever since. I remember hating the idea of committing her to something where she was stuck (literally) into having iv treatments every 6 weeks. But I didn't want her to drop under 50 lbs again. I also didn't fully grasp the concept of remission-it took me a while to realize that remission meant the symptoms stopped, but the damage during the flare doesn't "heal" per say.
And yes, we went through a 2 (or so) month long flare and all the fear and uncertainty came back again. Thank goodness for the steroids-and it came under control again.
Her diagnosis rocked our world-including our other two children, who were concerned for their sister. There is a lot of great support here, keep talking. Check out ccfa, they are awesome too.
I can honestly say, I know exactly what you are going through. Hang in there and keep talking. We are all behind you.
We have done the steroids a couple of times, and yes there is no female on earth that gets happy when her face gets puffy. It would kill me when she would say that she was "so ugly".
We went straight to Remicade, and have had the regular infusion ever since. I remember hating the idea of committing her to something where she was stuck (literally) into having iv treatments every 6 weeks. But I didn't want her to drop under 50 lbs again. I also didn't fully grasp the concept of remission-it took me a while to realize that remission meant the symptoms stopped, but the damage during the flare doesn't "heal" per say.
And yes, we went through a 2 (or so) month long flare and all the fear and uncertainty came back again. Thank goodness for the steroids-and it came under control again.
Her diagnosis rocked our world-including our other two children, who were concerned for their sister. There is a lot of great support here, keep talking
. Check out ccfa, they are awesome too.I can honestly say, I know exactly what you are going through. Hang in there and keep talking. We are all behind you.
Similar threads
