Stressed!!

[scook79]

Hello, glad i found this site. I am a mother to 16yr old girl newly dx with crohns in april 2011, she had been very ill for six months or so, pretty much was kicked out of school for missing and going to nurses office so many times, dr and everybody thought she was faking or on drugs, i myself started wondering, but being a registered nurse i knew something wasnt right. she had been vomiting several times a day for several months, occ fevers, finally when she took one bite of soup at a resturaunt and doubled over in agany we went to er.. well that didnt go well. The ER doc was a jerk and pretty much said she had an eating disorder and needed to go to her dr about it, i was pissed to say the least, i then demanded labs and when her sed rate was thru the roof he said well could be anything, i was worried about obstruction or all the complications, cause deep down all i could think was crohns, since as i nurse i see it alot. well we called her doc and he got her into specialist immediately, with all the tests, colonoscopies etc.. needless to say she had severe crohns terminal illeum, with 2 feet of narrowing, was hospitalized for eight days, developed fevers, kidney infection, small obstruction, severe pain etc.. so she is home not responding to tx all that great, prednisone up to 60mg day, hoping things get better. she is to start varsity volleyball in 4 weeks, something she has been working for since fourth grade. she has been going to practices and trying her hardest. she is very beautifull, and so upset with the weigt gain and new acne, havent found anything she can eat without pain. cries alot cause of the pain, vomits 2-3 times a day.. but she has a good attitude and is taking everything much better than i thought she would, we do lots of research trying to find the best supplements, diet etc.. Well thats her story any advice would be greatly appreciated.:rosette1:

Dx crohns april 20111

prednisone 60mg dly
6mp 75 dly
iron
mvt
calcium

 

[DougUte]

:rosette1:Wow. I am glad you found the forum. All I can say is hang in there. Your daughter is lucky to have a mother like you to support her. I am sure the RN background is a plus.

 

[scook79]

Thank you, and me too i have found lots of useful info on here, its great to have so much info in one spot!

 

[DustyKat]

Hi scook and :welcome:

I'm sorry you had to find your way but on the plus side it is a fab place for support and info!

In case you haven't already found it we have a Parent's forum here.

How long has she been on the Pred? If it has been since April do you think she has any other underlying issues...fistula, abscess, something like that?

How long are they prepared to allow these symptoms to continue? Has any other treatment been mentioned?

Is she on a low residue diet?

I'm sorry for all the questions! I hope things settle for your daughter soon, it is so hard to see them go through this.

:hang: Mum! I have no doubt you are doing a fab job!

Take care, :hug:
Dusty. xxx

 

[scook79]

Hi, and thank you. yes she has been on pred since april. a week of iv at hospital and oral ever since. she is starting her tapering schedule this week and should be off in sept. she has felt a little better since we cut out all dairy, otherwise eats very low residue, just a few things she can tolerate. i do feel like we are starting to see improvement. its those moments when she calls me at work crying in agony that i hate the most, she will just out of blue spike a fever and have severe pain that takes 6 to 12 hours to subside. but that hasnt happened in about four days so very happy. the doc doesnt think anything else going on, her sed rate and crp have been sky high so it explains all the pain. surgery next if this doesnt work. so our fingers are crossed. she is determined so that helps. im interested in what other supplements are good for hr to take, her doc never reccomends anything. wanting to do probiotic, maybe extra vit c for skin.. any suggestions

Thanks

 

[DustyKat]

I would still be inclined to question why the ESR and CRP are sky high. It seems to be pointing to uncontrolled inflammation and infection.

Has she been on Flagyl as well at any time?

This just isn't sounding right. A high dose of Pred and still experiencing these type of symptoms, particularly in view of the fact that Pred and 6mp can mask symptoms.

I hope more than anything that the meds do the trick for your daughter. Good luck!

Dusty. xxx

 

[Tesscorm]

Hi Scook,

So sorry to hear about your daughter! My son just turned 17, was 16 when diagnosed in May. Once he was admitted to hospital, he was put on flagyl for a week and started a six week enteral therapy (Tolerex). He has just finished the enteral therapy and, for the most part, has responded very well. Perhaps this is an option you can ask about??? His enteral therapy was through an NG tube but I understand there are other enteral treatments available that are drinkable.

The only other thing I've given my son is coconut water. (I was very limited due to his enteral therapy.) I had read that this is very healthy and anti-inflammatory. He was drinking approximately 1/2 to one can per day (strained, without the coconut pulp). For the past week, he has become complacent and hasn't been drinking the coconut water because he didn't really like the taste and yesterday had some mucus and blood. As he's also just reintroducing foods to his system, I can't say with any certainty that his not drinking coconut water has made the difference, but, with my limited knowledge, is the only other suggestion I can offer.

I really hope she's feeling better soon. Both my kids play sports and I know how important making these teams are to them. I hope she's feeling well enough to play on her team!

(Also, I actually started a thread today asking for people's opinions on supplements that they use... maybe check on any replies there. I'm not sure how to link it here but, I titled it "Supplements - What do you use").

Good luck!!!

 

[jo88]

hi scook, so sorry to hear that your daughter is suffering, crohns has a terrible impact on our lives. but there are solutions its not a life sentence. i can sympathise with the pain, worse than child birth!! my intestines were so inflamed at one point i could do nothing but crawl. i was put on a liquid diet, same as astronauts use, all the nutrients are there but the bowel dosent have to work, so it heals. it wasnt easy but within a week the pain was gone, then i went onto ensure drinks to increase appetite and gradually introduced a bland diet, this and steroids kept me well before my surgery. speak to the doctor about all the options, its so important that your daughter gets her quality of life back. keep us updated good luck xxx

 

[vness1208]

I can relate.. My daughter was just diagnosed in Dec 2010 but she was having stomach pains & problems w her bowels for almost 2yrs before that. her doctors kept telling me the same thing over & over, supposedly she was 'constipated' but I knew inside there was something really wrong w/ her because everytime she was so tired all the time & constantly having accidents & couldnt go to the bathroom w/out screaming at the top of her lungs. I end up taking her to the er because drs werent listening to me & turned out to be crohns.. she just graduated & missed out on so many things it breaks my heart. It feels good to talk to people who have been through this too but anyways I hope everything works out for yall.