My 16 yr old daughter might have Crohns

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sickofbeingsick76

sickofbeingsick76

Joined
Oct 4, 2011
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Hey everyone, I have had crohns since I was 18, I'm 36 now. My case is a severe one too. A lot of meds have not worked for me but remicade and asacol seem to do the trick. About 3 months ago my daughter started complaining about severe diarrhea, joint pain and I noticed that her weight was starting to come off very rapidly. Automatically I thought to myself this sounds like what I had in the beginning. So I took her to her pediatrician and my gastroenterologist and they ordered Bloodwork and an upper GI series. All the markers in her Bloodwork point to crohns. The upper GI series came out fine. Now her next step is an endoscopy/colonoscopy next Friday. I really hate to see her suffer and it kills me that she might have this awful disease. I keep assuring her that just because my crohns is severe it doesn't mean hers would be if she had it. She is extremely upset and feels like its the end of the world. She is always angry now and it hurts because I can help her, I'm going through this too so she wouldn't be alone. I don't know what else to do.
 
This must be heartbreaking for you! There is nothing harder than watching your child suffer. But, you're right in that you will be such a great help to her; a fantastic advocate and support for her!! I'm sure she's dealing with lots of emotions right now but she will come to see how lucky she is to have you!!

After my son was diagnosed, I was constantly asking 'how are you?' re both physical symptoms and emotional wellbeing. It broke my heart to see him upset and, while I couldn't 'fix' it, I'd try to talk to him about his feelings, etc. But, he finally told me that he has crohns, that it's okay to be upset and to just let him be upset or mad sometimes. So, I have. I think by me not wanting to see him upset, I was actually putting pressure on him to hold in his feelings so as not to upset me!

So, now, if it happens, I let him vent, complain, etc. I don't try to make him see that things 'could be worse' or try to 'lessen' his situation at all and I don't offer advice at that time. I just let him vent, acknowledge that he's right to be upset and try to casually 'fix' the problem if it's easily fixed (ie, if he's spilled the EN formula, I just help clean it up as he vents). I may ask if things are 'okay' later on but, at the best of times, it's tricky to know how/when to talk to a teen!

Hopefully, you’ll have answers after the colonoscopy quickly and can move ahead. As you said, even if she does have crohns, her experiences with it may be very different from yours. As you say that your experience has, unfortunately, been severe, this is obviously a part of her concern – I would mention to her that treatment options have changed considerably in the past 20 years, that she will have treatment options to quickly control the crohns that you may not have had when diagnosed.

Good luck!!! And take care of yourself too!! :ghug:
 
My heart goes out to you! I am almost in the same boat with my 10 yr old daughter beginning to show same signs as I did. I, too, have severe Crohn's and my daughter has seen me go thru several surgeries for blockages and things in the past. I know it is disheartening and painful, but just don't beat yourself up about it. Just know because you have had to deal with this god awful disease that you can be there for her in more ways than one. I will certainly keep you in my prayers and wish her nothing but the best!!
 
Hugs..
Hopefully you get quick answers.
One thing to keep in mind is she is young and has access to drugs earlier than before plus the opportunity to see new drugs in her life time.
 
@Tesscorm, pcbgirl227 amd my little penguin. Thank you for all the advice and support. She has seen me through three surgeries, several hospital admissions and multiple medications with horrible side effects since she was very young, so I completely understand her fear. On top of the endoscopy/colonoscopy, she might have to see a rheumatologist due to her severe joint pain. It never ends. Hopefuly we finally get an answer next week, so she can be on some medication and be pain free. Again thank you all.
 
Sorry to hear about her pain.
It's never easy no matter what age they are to see them in pain
I pray you get answers soon.
 
Sorry to hear about your daughter. I can imagine she must feel overwhelmed by the diagnosis as she has watched you suffer. As they say "ignorance is bliss" and unfortunately she doesn't have that. However I am sure once she works through this she will appreciate that you have a wealth of experience that can only help her. Kids always seem to take their moods out on their parents because they know that they will still be loved unconditionally. I hope that once they get her on some medication she can start feeling better as soon as possible!
 
I am so sorry to hear all that you and your daughter are going through. They have come a long way with treatments and coming up with more each day. I pray that you both get the help you need quickly to stop the Crohns in its tracks. You sound like such a loving mom and your daughter knows you will be there for her.
My daughter gets mad too, and I tell her she has a right to. For all of us it has been a process accepting it and it has taken about 8 months-lots of tears, fears and some anger.
Let us all know how she is doing
 
Oh my...:hug::hug::hug:...I am so very sorry to hear of what you and your daughter are going through.

You are right in saying that your disease won't necessarily be mirrored in your daughter, if she does have Crohn's. Interestingly enough when my son was in hospital, the Crohn's specialist he saw said in response to the fact that my children do in fact mirror each other, that in all his years he has only ever had one other patient in which family members followed each other so closely.

I heartily agree with what mlp has said. :) The thought of better treatments and the hope of a cure is what drives me and gets me through the dark days when that blessed black dog comes nipping at my heals! :voodoo:

Give it time Mum. :hug: I know and understand how hard it is when your child is hurting so deeply but she will come around, truly she will. She has had her legs taken out from under her, as you have too. The world as she knew it no longer exists and she is scared, she needs time to adjust and to grieve. It will happen and you will develop a bond that is not only based on love and respect but that of two people that share a unique deep knowledge and experience.

Just be there hun, you don't have to say anything to her, you don't have to have answers, you just have to let her vent and listen, and when she is ready wrap her in your arms, gently stroke her and say...I know.

Good luck with the tests and I hope they give you solid answers, a focus and a plan action that gives your daughter lasting peace and relief.

Dusty. xxx
 
I'm in exactly the same position as you! I've had crohns since i was 16, my daughter was diagnosed in March this year, i knew she had it when she had the same symptoms as i had in the beginning. She was diagnosed after a colonoscopy. It's hard knowing how painful the disease is and know your child is going through it too. My daughter may be facing her first operation, we are waiting for the doctors decision as she has some strictured segments in her small intestine :/
 
I wanted to say thank you so much to all who have replied to this thread sharing all your support. Im glad that i have people who know what im going through so as not to feel alone. Today is the big endoscopy and colonoscopy day. The prep was a nightmare as you all know. Unfortunately, I'm flaring big time. I'm trying my hardest to show all my strength with her. It's kind of hard when I get excruciating pain and the constant trips to the bathroom. I just want to get this over with so I can get an answer for my daughter. Seeing her suffer is taking its toll on me. I will keep you guys posted. Hugs to all.
 
Best wishes for the scopes today. Hope you're able to get some answers and that both of you get some relief. Thinking of you both.
 
Thinking of you both! I hope all goes well and you get some answers quickly! :ghug:
 
Your right, the prep is terrible... But I hope all goes well with the procedure.
Thinking of you both.
Julie (Baylee's mom)
 
Sending loads and loads of luck and well wishes for the scopes, bless her. :hug:

I hope all has gone well and you soon have solid answers.

Dusty. xxx
 
Hope the went well. It's my husband and son who have it in this family. We were like you when Jack started showing the same symptoms as Dad went right away. I do have to say we did not have as much trial and error with meds to get Jack's under control as John which was years. Hope she gets to feeling well soon.
 
Hey everyone, thank you all for all your thoughts and prayers. I just wanted to give you all a quick update. It's been confirmed my daughter has been diagnosed with Crohns (ileocolitis). We are seeing the pediatric gastro tomorrow where she will discuss the results of the biopsy. Her doctor indicated that she wants to start her on Asacol. My daughter took the news pretty well. She is a very positive person which is great. You def need to be positive with this disease. I'm just really worried about her extreme joint pain. She wakes up not being able to walk sometimes due to the joint pain. I will bring it up to the doctor tomorrow again. Maybe a visit to a rheumatologist is in order. I will keep you guys posted.
 
So sorry that she was diagnosed with crohn's.
My heart goes out to you and your family...:hug:
 
Sorry to hear about the diagnosis. That's great that she has a positive attitude - hopefully it will help with the mental side of this disease. Good luck with the gastro meeting, hope all goes well.
 
Oh hun...:hug::hug::hug:

I am so sorry to hear that your fears have been confirmed but now you have answers you can tackle it head on and your girl can find lasting relief.

The joint pain should abate once the intestinal inflammation is brought under control. As a general rule pain/inflammation in the larger joints tends to run along with flaring. I think a visit to a rheumatologist is a good idea. :)

Good luck with the consultation!

Dusty. xxx
 
My Grace has the same joint pain. Had to carry her out of a store yesterday because it got so bad. Now IF she wakes up with even the slightest joint pain she sits on a heating pad for breakfast. It helps a little. Sometimes Grace will let me rub her legs which also seems to help her, at least mentally!

I hope her treatment starts soon.
Hugs to you both!

:rosette2:
 
Farmwife, I'm sorry to hear about your daughter's joint pain. It's very debilitating. And it hurts to see them suffer. My daughter uses the heating pad also. It gives her piece of mind. I'm sending prayers your way. There has to be something out there soon that will help all our kids so they don't suffer any longer.
 
So sorry to hear about the diagnosis. Hopefully, now they can get her feeling well with treatment. My son has joint pain too when his CD is active, he pads seem to help him a little too.
 
Clash, it seems these two things go hand in hand unfortunately. My daughter was on the varsity tennis team in high school. She is pretty good, but when she started losing all her matches because of her joint pain. I knew something was definitely wrong. I really hope the meds work for her too. My thoughts and prayers go out to you and your son.
 
It was the same for my son, footbal, varsity wrestling, baseball and slowly but surely he had to drop each one, due to fatigue of anaemia and the severe joint pain. His meds have worked really well keeping the joint pain at bay but his CD is being a little more tricky. He is trying to get back into his sports routine but we are going slow and steady so as to not rock the CD boat! Hope your daughter is feeling some relief real soon!
 
I'm sorry to hear of her diagnosis! :( But I do hope that treatment/meds can get it all under control quickly! Thinking of you :ghug:
 

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