Single mom of three - youngest daughter is sick

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

WorriedMom2000

WorriedMom2000

Joined
Apr 28, 2015
Messages
10
I'm a single mom of three. My youngest daughter had been sick for several years, with doctors saying it was a virus or something else. We just found out with the help of her Doctor and a million test that she has Crohns, IBS & Fatty liver disease. Our lives have took a complete change and I don't understand much about it. I do know I'm stressed beyond my breaking point and it seems that she is only able to eat yougart and most baby foods, this breaks my heart. She's also on 127 pills a week and I'm afraid this is a lot to take being so young. If anyone can give me any advice or help understand this please do. I cry myself to self at night bc of horror stories I hear about Crohns. I don't know what else to do. Thanks for your time in advance. Bless each of you. Worriedmom2000 (Misty)
 
Hi there and welcome to the community. I've moved your post to its own thread here in the Parents of Kids with IBD forum. There are lots of parents here in similar situations to you that can provide all kinds of advice and a sense of understanding.

What specific medication is she on?

As she has Crohn's which can cause nutrient deficiencies AND fatty liver disease, I suggest reading up on choline as a deficiency in it can lead to fatty liver disease. You can read about it here: http://www.crohnsforum.com/wiki/Choline

All my best to you and your family.

*hugs*
 
Hugs
It's hardest in the beginning
Ds was dx at 7 and is now 11.
It can and does get better
Ask question. And vent here as much as you want
We are here for you
 
Mr. David, She is on Lisbid, Zofran, Effexor, Restora, Lortab(i don't like), Ib 800, tagment. The stomach pain always seems to be the worse. They've taken her completely out of scho ol. She passes out alot, but can't eat much.
 
That's what I was told from a friend too. That makes me worry that maybe I need to look into a different specialist. I know in the last year she just seems to get worse, and that terrifies me. She's been threw so many tests and procedures and is scared to go to the hospital for fear of "What's next".
 
I agree none of those are listed as being used for crohns.....personally I would ask the doctor what each specific medication is for.....Not generally but specifically......and none of them I think are going to address the stomach pain.....just symptoms.....
 
From what I can understand from the doctor, Lisbid is for stomach cramps/muscle spasms. The Zofran for nausea, Effexor for anxiety, Restora is a probotic, the Lortab and ibu800 I don't give her. Tagment for the constant intergestion. When I asked him about anything else he told me that we could try to control is by what foods she eats. (which isn't much) and she's always always crying bc her stomach hurts all the time. I'm just so confused about it all.
 
Hi and welcome
My girl is 6 now but dx at 3.
I'm so sorry to hear what your poor daughter is going thru.
I didn't catch her age but any age to have this is so challenging.
Have you thought about a second opinion?
Just another set of eyes to make sure she's on the right medicine.


HUGS
 
Sending hugs your way. One day at a time. It is the hardest in the beginning but it will get better. It is a journey. There are a lot of knowledgable, caring supportive folks on the forum. They will help you on the journey. Sending positive thoughts your way.
 
My daughter was also dx with IBS before the Crohn's dx.

The medications she is on seem to be IBS medications.

My kid's IBS went a way once the Crohn's was properly treated.
 
Her PCP is so wonderful he re-ran all the test, plus did a pill cam. He had stated that he wants to try her on a new medication for the Crohns itself. He also said if we can get it pretty much under control that the IBS and the cases of C-diffs should slow and stop. This far we haven't had any more positive C-diff test. Thank Y'all all for being so helpful. I'm sorry I'm winning so much. I feel like a moron not knowing and understanding this. I read everything I can get but it seems like it's all different each time. I've been a nurse for 20 years working with the elderly, but never dealt with Crohns itself, and never thought my child would get it at 14. I've even tried to understand how she got it and still don't understand. Thanks each of you so much. I will probably be doing a lot of whinning and asking questions.
 
Your PCP shouldn't be treating the Crohn's. You need to find a GI that specializes in Crohn's disease in children. You may have to travel, but it'll be worth it.
 
She's seeing a GI Specialist, I think I'm going look into finding a new one. Not crazy over the one she has. He doesn't seem to concerned in helping or talking to us. He put her on those meds and said in 6 months he'd like too see her again to run test again to see how everything is going.
 
Sorry to hear that your daughter is struggling. Definitely sounds like she needs a Crohns med. my son is on mercaptopurine which is helping but I think they can affect the liver which is maybe not a good one, but there are others like Remicade. It might be worth trying EN if she is struggling to eat. It gives the bowels a rest and makes sure she gets the right nutrition. Modulen is also anti-inflammatory which may help her heal
 
It sounds like getting a second opinion soon might help, particularly if she's in so much pain. She should be on medications that control the disease, not just the symptoms.
CCFA has some good info about some of the medications used for Crohn's: http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/crohns-medication.html

http://www.ccfa.org/resources/immunomodulators.html

You could also ask your PCP to talk to her GI - sometimes doctors are more responsive when other doctors call them. If she's passing out from pain and unable to really eat, it seems like she really needs to be treated FAST. Basically all the medications (besides steroids) used to treat IBD take time to work (6 weeks to 3 months typically, depending on the med), so the sooner you get her on something, the sooner she's likely to feel better.

Hang in there. The first year is very hard but it does get easier once you get things under control.
 
So sorry to hear of your daughters illness. I agree with the others that you need to see a new GI and treat the disease and not just the symptoms. EN/EEN or steroids are used initially, with a number of other meds used for maintenance. Although a change in diet can help ease some symptoms, I'm surprised a Dr told you the disease could be controlled by diet. And there is no rhyme or reason for how one gets this disease. There is a genetic factor, but there are environmental factors that contribute to the onset of the disease. It is still shrouded in a lot of mystery. My son had a flu, which the GI figures triggered the disease. You mentioned your daughter had a pill cam done. Where is her disease located?
 
Although I am a believer in diet I am also surprised a doctor said that. I usually get laughed at when I tell people I keep my crohn's in check with the SCD, Lialda, and the occadional taper of steroids (when I've been naughty). In the meantime of getting a proper diagnosis and medication I would definitely look into some diets. I personally have success with SCD (The Specific Carb Diet) but I know others that have had success on EEN, Paleo, and Low Residue diets as well.
 
Are you sure she's been diagnosed with Crohn's? I'm not trying to be snarky, but sometimes doctors say or suggest things that are never documented. Our first GI called me at work after a Prometheus lab to tell me my daughter had Crohn's Disease (because the lab indicated she did). I assumed she'd diagnosed her with Crohn's, especially when she said we needed to schedule scopes quickly to see the extent of the disease. After the scopes I asked what medication she would be on and she looked puzzled. She said she never diagnosed her with Crohn's, just merely suggested she may have it. Anyway, just look through your records very carefully, clarify things with the GI, then make sure your child is receiving the appropriate treatment for her diagnoses. This path is a tricky one.
 
I guess I'd be looking for a second opinion as well. Not so much on diagnosis, but treatment. As someone else said, it sounds like the current GI is treating symptoms and not the real issue... Crohn's. Have you read up on the typical Crohn's meds? The bottom up approach and the top down approach? If not, let us know and someone can give a quick rundown for you.

Do you have a copy of all of her test results and labs? It's good to start a file and keep track of things.

We were given the IBS dx for awhile too until we got my son's Crohn's under control with Remidade. Once on Remicade, the supposed IBS disappeared. I never thought it was IBS to begin with. I'm not saying that's the case with you daughter, but it does make me wonder.

Please keep us posted on how things go.
 
Yes Ma'am @DanceMom. On all her recent paper work and test it states she has it. The pill cam showed in the lower intestine. Am contacting A new doctor this morning
 
Glad you're contacting a new doctor. We found once the disease was under control the appetite followed.
I agree with the committee that the disease needs to be treated not just the symptoms.
My son was on many different drugs for a while as well. Periactin to increase appetite, one to control stomach spasams, omeprozole to control acid, Imuran to control the Crohn's disease, Peptide drinks to try and get calories/nutrition into him.
We have found that none of that has been necessary once he started remicade which for him has brought his Crohn's under control and allieviated all the other symptoms.
 
Hi there. I'm sorry to hear of your daughters struggles. I can tell you crohns disease isn't a death sentence and you hear a lot more horror stories than you hear of the good stories (remission, the disease isn't that bad ect) mainly because when your feeling well you don't think about the disease. A lot of people live very full lives and once she's feeling better she'll be able to do all sorts of activities.

She needs to be treated for the disease specifically. My GI has never put me on meds to treat symptoms, aside from a take as needed drug for stomach spasms.I went through a bottom up approach. Unfortunately she will always be somewhat prone to getting c-diff infections since her stomach flora is somewhat depleted however with yogurt and/or a good probiotic and constant hand washing the frequency of the infections should slow(also with proper controlled treagent of her crohns). she should be extra careful while on antibiotics or in the hospital.
 
I sat down with a new doctor this morning as well as her PCP for a consultation. We went over every test that was done and the new Dr agrees that it is Crohns. He has stopped all of the other medication that she was on and stated that she should have been placed on something a year ago. They are going to keep her on Lisbid for the spasms, Zofran for nausea, Restora which is probotic and he wants to try the drug Remicade. He did state that she can't eat anything that contains maltodextrin, (which seems to be in everything including Tums). Fingers crossed things start looking up. Thanks guys so much. I'm sure I'll be back with more questions. I'm always trying to learn about this and what and how to do things. Thanks God have now been 6 Months C - diff free, but he said it can easily come back, and her immune system is low bc she's been sick so long. Still feel frustrated but not as bad now. At moments like this I wish my husband was still alive. Thank each if you from the bottom of my heart. Y'all are a God sent. :kiss:
 
Remicade was my miracle drug. I was on a double dose every 7 weeks. I went in for a roughly 3 to 4 hour infusion, took a nice nap or watched some TV and was feeling better by the end of it (don't be surprised if after the infusion she's tired, they gave me a steriod, benadryl and Tylenol before each infusion to prevent a reaction). It took about 4 infusions before I really felt good. I wish I could go back on it but after 2 yrs I became allergic :/ if you have any questions I'll try my best to help.
 
Wanted to just send my support. The beginning of diagnosis is one of the hardest times. It is easy to get overwhelmed. Try to focus on questions that will help you manage the short term. the other answers will come in time. As you can see we are all a pretty supporti've bunch. And have all had different journeys. Feel free to reach out, one of us are bound to gave an experience around it! Hugs
 
So glad you got another opinion. Keep fighting and asking questions, momma!

Remicade has been a wonder drug for my son as well. Within the first hour of his first infusion he was asking for food. By the second infusion he had normal labs and was feeling great. Of course everyone responds differently, but it's been a really good thing in his case.

Why no maltodextrin?
 

Similar threads

A
What would you do?
Replies
22
Views
2K
Delta_hippo
D
Papantoine
Neglect?
Replies
0
Views
222
Papantoine
Papantoine
A
Superstition and Anxiety
Replies
12
Views
2K
Aituk7
A
A
My History
Replies
3
Views
2K
ARSalerno3
A
B
Newly “diagnosed” 7-year old - confused mom
Replies
18
Views
2K
Stressedmom
S

Latest posts

Back
Top